literature review on caregiving

• A-Z Publications

Annual Review of Psychology

Volume 71, 2020, review article, family caregiving for older adults.

• Richard Schulz 1,2 , Scott R. Beach 2 , Sara J. Czaja 3 , Lynn M. Martire 4 , and Joan K. Monin 5
• View Affiliations Hide Affiliations Affiliations: 1 Department of Psychiatry, University of Pittsburgh, Pittsburgh, Pennsylvania 15213, USA; email: [email protected] 2 University Center for Social and Urban Research, University of Pittsburgh, Pittsburgh, Pennsylvania 15260, USA 3 Center on Aging and Behavioral Research, Weill Cornell Medicine, Cornell University, New York, NY 10065, USA 4 College of Health and Human Development, Pennsylvania State University, University Park, Pennsylvania 16802, USA 5 School of Public Health, Yale University, New Haven, Connecticut 06520, USA
• Vol. 71:635-659 (Volume publication date January 2020) https://doi.org/10.1146/annurev-psych-010419-050754
• Copyright © 2020 by Annual Reviews. All rights reserved

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

Article metrics loading...

Full text loading...

Literature Cited

• Acierno R , Hernandez MA , Amstadter AB , Resnick HS , Steve K et al. 2010 . Prevalence and correlates of emotional, physical, sexual, and financial abuse and potential neglect in the United States: the National Elder Mistreatment Study. Am. J. Public Health 100 : 292– 97 [Google Scholar]
• Allen AP , Curran EA , Duggan Á , Cryan JF , Chorcoráin AN et al. 2017 . A systematic review of the psychobiological burden of informal caregiving for patients with dementia: focus on cognitive and biological markers of chronic stress. Neurosci. Biobehav. Rev. 73 : 123– 64 [Google Scholar]
• Amirkhanyan AA , Wolf DA. 2006 . Parent care and the stress process: findings from panel data. J. Gerontol. B 61 : S248– 55 [Google Scholar]
• Aneshensel CS , Pearlin LI , Mullan JT , Zarit SH , Whitlatch CJ 1995 . Profiles in Caregiving: The Unexpected Career Cambridge, MA: Academic [Google Scholar]
• Ascher EA , Sturm VE , Seider BH , Holley SR , Miller BL , Levenson RW 2010 . Relationship satisfaction and emotional language in frontotemporal dementia and Alzheimer's disease patients and spousal caregivers. Alzheimer Dis. Assoc. Disord. 24 : 49– 55 [Google Scholar]
• Backhouse A , Ukoumunne OC , Richards DA , McCabe R , Watkins R , Dickens C 2017 . The effectiveness of community-based coordinating interventions in dementia care: a meta-analysis and subgroup analysis of intervention components. BMC Health Serv. Res. 17 : 717 [Google Scholar]
• Ballard C , Lowery K , Powell I , O'Brien J , James I 2000 . Impact of behavioral and psychological symptoms of dementia on caregivers. Int. Psychogeriatr. 12 : 93– 105 [Google Scholar]
• Beach SR , Schulz R. 2017 . Family caregiver factors associated with unmet needs for care of older adults. J. Am. Geriatr. Soc. 65 : 560– 66 [Google Scholar]
• Beach SR , Schulz S , Friedman EM , Rodakowski J , Martsolf RG , James AE 2019 . Adverse consequences of unmet needs for care in high-need/high-cost older adults. J. Gerontol. B. In press. https://doi.org/10.1093/geronb/gby021 [Crossref] [Google Scholar]
• Beach SR , Schulz R , Williamson GM , Miller LS , Weiner MF , Lance CE 2005 . Risk factors for potentially harmful informal caregiver behavior. J. Am. Geriatr. Soc. 53 : 255– 61 [Google Scholar]
• Beach SR , Schulz R , Yee JL , Jackson S 2000 . Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the Caregiver Health Effects Study. Psychol. Aging 15 : 259– 71 [Google Scholar]
• Belle SH , Burgio L , Burns R , Coon D , Czaja SJ et al. 2006 . Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann. Intern. Med. 145 : 727– 38 [Google Scholar]
• Bittman M , Hill T , Thomson C 2007 . The impact of caring on informal carers' employment, income and earnings: a longitudinal approach. AJSI 42 : 255– 72 [Google Scholar]
• Bolin K , Lindgren B , Lundborg P 2008 . Your next of kin or your own career? Caring and working among the 50+ of Europe. J. Health Econ. 27 : 718– 38 [Google Scholar]
• Bookwala J. 2009 . The impact of parent care on marital quality and well-being in adult daughters and sons. J. Gerontol. B 64B : 339– 47 [Google Scholar]
• Brodaty H , Green A , Koschera A 2003 . Meta-analysis of psychosocial interventions for caregivers of people with dementia. J. Am. Geriatr. Soc. 51 : 657– 64 [Google Scholar]
• Brown RM , Brown SL. 2014 . Informal caregiving: a reappraisal of effects on caregivers. Soc. Issues Policy Rev. 8 : 74– 102 [Google Scholar]
• Burgio LD , Collins IB , Schmid B , Wharton T , McCallum D , DeCoster J 2009 . Translating the REACH caregiver intervention for use by area agency on aging personnel: the REACH OUT program. Gerontologist 49 : 103– 16 [Google Scholar]
• Cameron JI , Elliott TR. 2015 . Studying long-term caregiver health outcomes with methodologic rigor. Neurology 84 : 1292– 93 [Google Scholar]
• Capistrant BD. 2016 . Caregiving for older adults and the caregivers’ health: an epidemiologic review. Curr. Epidemiol. Rep. 3 : 72– 80 [Google Scholar]
• Carmichael F , Charles S. 2003 . The opportunity costs of informal care: Does gender matter. ? J. Health Econ. 22 : 781– 803 [Google Scholar]
• Chien LY , Chu H , Guo JL , Liao YM , Chang LI et al. 2011 . Caregiver support groups in patients with dementia: a meta-analysis. Int. J. Geriatr. Psychiatry 26 : 1089– 98 [Google Scholar]
• Clarkson P , Hughes J , Xie C , Larbey M , Roe B et al. 2017 . Overview of systematic reviews: effective home support in dementia care, components and impacts—Stage 1, psychosocial interventions for dementia. J. Adv. Nurs. 73 : 2845– 63 [Google Scholar]
• Cohen S , Kessler RC , Gordon LU , eds. 1995 . Measuring Stress: A Guide for Health and Social Scientists Oxford, UK: Oxford Univ. Press [Google Scholar]
• Collins RN , Gilligan LJ , Poz R 2018 . The evaluation of a compassion-focused therapy group for couples experiencing a dementia diagnosis. Clin. Gerontol. 41 : 474– 86 [Google Scholar]
• Collins RN , Kishita N. 2019 . The effectiveness of mindfulness- and acceptance-based interventions for informal caregivers of people with dementia: a meta-analysis. Gerontologist 59 : e363 – 79 [Google Scholar]
• Corry M , While A , Neenan K , Smith V 2015 . A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions. J. Adv. Nurs. 71 : 718– 34 [Google Scholar]
• Cuijpers P. 2005 . Depressive disorders in caregivers of dementia patients: a systematic review. Aging Mental Health 9 : 325– 30 [Google Scholar]
• Cuthbert CA , King-Shier K , Ruether D , Tapp DM , Culos-Reed SN 2017 . What is the state of the science on physical activity interventions for family caregivers? A systematic review and RE-AIM evaluation. J. Phys. Act. Health 14 : 578– 95 [Google Scholar]
• Czaja SJ , Lee CC , Perdomo D , Loewenstein D , Bravo M et al. 2018 . Community REACH: a community implementation of an evidence-based caregiver program. Gerontologist 58 : e130– 37 [Google Scholar]
• Czaja SJ , Loewenstein D , Schulz R , Nair SN , Perdomo D 2013 . A videophone psychosocial intervention for dementia caregivers. Am. J. Geriatr. Psychiatry 21 : 1071– 81 [Google Scholar]
• Czaja SJ , Schulz R , Lee CC , Belle SH 2003 . A methodology for describing and decomposing complex psychosocial and behavioral interventions. Psychol. Aging 18 : 385– 95 [Google Scholar]
• Damjanovic AK , Yang Y , Glaser R , Kiecolt-Glaser JK , Nguyen H et al. 2007 . Accelerated telomere erosion is associated with a declining immune function of caregivers of Alzheimer's disease patients. J. Immunol. 179 : 4249– 54 [Google Scholar]
• De Vugt ME , Stevens F , Aalten P , Lousberg R , Jaspers N et al. 2003 . Behavioural disturbances in dementia patients and quality of the marital relationship. Int. J. Geriatr. Psychiatry 18 : 149– 54 [Google Scholar]
• Dharmawardene M , Givens J , Wachholtz A , Makowski S , Tjia J 2016 . A systematic review and meta-analysis of meditative interventions for informal caregivers and health professionals. BMJ Support. Palliat. Care 6 : 160– 69 [Google Scholar]
• Dickinson C , Dow J , Gibson G , Hayes L 2017 . Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews. Int. Psychogeriatr. 29 : 31– 43 [Google Scholar]
• Dunkle RE , Feld S , Lehning AJ , Kim H , Shen HW , Kim MH 2014 . Does becoming an ADL spousal caregiver increase the caregiver's depressive symptoms. ? Res. Aging 36 : 655– 82 [Google Scholar]
• Egan KJ , Pinto-Bruno AC , Bighelli I , Berg-Weger M , van Straten A et al. 2018 . Online training and support programs designed to improve mental health and reduce burden among caregivers of people with dementia: a systematic review. J. Am. Med. Dir. Assoc. 19 : 200– 6 [Google Scholar]
• Freedman VA , Kasper JD , Cornman JC , Agree EM , Bandeen-Roche K et al. 2011 . Validation of new measures of disability and functioning in the National Health and Aging Trends Study. J. Gerontol. A 66 : 1013– 21 [Google Scholar]
• Gaugler J , Jutkowitz E , Shippee TP , Brasure M 2017 . Consistency of dementia caregiver intervention classification: an evidence-based synthesis. Int. Psychogeriatr. 29 : 19– 30 [Google Scholar]
• Gilhooly KJ , Gilhooly ML , Sullivan MP , McIntyre A , Wilson L et al. 2016 . A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr 16 : 106 [Google Scholar]
• Giovannetti ER , Wolff JL. 2010 . Cross-survey differences in national estimates of numbers of caregivers of disabled older adults. Milbank Q 88 : 310– 49 [Google Scholar]
• Gitlin LN , Kales HC , Lyketsos CG 2012 . Nonpharmacologic management of behavioral symptoms in dementia. JAMA 308 : 2020– 29 [Google Scholar]
• Goodwin KM , Mills WL , Anderson JA , Kunik ME 2013 . Technology-driven interventions for caregivers of persons with dementia: a systematic review. Am. J. Alzheimers Dis. Other Demen. 28 : 216– 22 [Google Scholar]
• Grady PA , Rosenbaum LM. 2015 . The science of caregiver health. J. Nurs. Scholarsh. 47 : 197– 99 [Google Scholar]
• Grossman A , D'Augelli A , Dragowski E 2007 . Caregiving and care receiving among older lesbian, gay, and bisexual adults. J. Gay Lesbian Soc. Serv. 18 : 15– 38 [Google Scholar]
• Gwyther LP , Matchar BG. 2015 . The Duke employee elder care consultation: meeting employees where they are. Generations 39 : 105– 8 [Google Scholar]
• Haley WE , Roth DL , Howard G , Safford MM 2010 . Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: differential effects by race and sex. Stroke 41 : 331– 36 [Google Scholar]
• Heitmueller A , Inglis K. 2007 . The earnings of informal carers: wage differentials and opportunity costs. J. Health Econ. 26 : 821– 41 [Google Scholar]
• Hirst M. 2005 . Carer distress: a prospective, population-based study. Soc. Sci. Med. 61 : 697– 708 [Google Scholar]
• Hughes M , Kentlyn S. 2011 . Older LGBT people's care networks and communities of practice: a brief note. Int. Soc. Work 54 : 436– 44 [Google Scholar]
• Jaffray L , Bridgman H , Stephens M , Skinner T 2016 . Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: a systematic literature review. Palliat. Med. 30 : 117– 31 [Google Scholar]
• Kazdin AE. 1999 . The meanings and measurement of clinical significance. J. Consult. Clin. Psychol. 67 : 332– 39 [Google Scholar]
• Kendall PC , Marrs-Garcia A , Nath SR , Shedrick RC 1999 . Normative comparisons for the evaluation of clinical significance. J. Consult. Clin. Psychol. 67 : 285– 99 [Google Scholar]
• Kiecolt-Glaser JK , Preacher KJ , MacCallum RC , Atkinson C , Malarkey WB , Glaser R 2003 . Chronic stress and age-related increases in the proinflammatory cytokine IL-6. PNAS 100 : 9090– 95 [Google Scholar]
• Kong J , Moorman SM. 2015 . Caring for my abuser: childhood maltreatment and caregiver depression. Gerontologist 55 : 656– 66 [Google Scholar]
• Kotsadam A. 2011 . Does informal eldercare impede women's employment? The case of European welfare states. Fem. Econ. 17 : 121– 44 [Google Scholar]
• Kurtz ME , Kurtz JC , Given CW , Given B 1995 . Relationship of caregiver reactions and depression to cancer patients’ symptoms, functional states and depression—a longitudinal view. Soc. Sci. Med. 40 : 837– 46 [Google Scholar]
• Kwon OY , Ahn HS , Kim HJ , Park KW 2017 . Effectiveness of cognitive behavioral therapy for caregivers of people with dementia: a systematic review and meta-analysis. J. Clin. Neurol. 13 : 394– 404 [Google Scholar]
• Lachs M , Berman J. 2011 . Under the radar: New York State Elder Abuse Prevalence Study Rep., Lifesp. Great. Rochester Inc./Weill Cornell Med. Cent. Cornell Univ./New York City Dep. Aging New York: [Google Scholar]
• Lafferty A , Fealy G , Downes C , Drennan J 2016 . The prevalence of potentially abusive behaviours in family caregiving: findings from a national survey of family carers of older people. Age Ageing 45 : 703– 7 [Google Scholar]
• Lambert SD , Duncan LR , Kapellas S , Bruson AM , Myrand M et al. 2016 . A descriptive systematic review of physical activity interventions for caregivers: effects on caregivers' and care recipients' psychosocial outcomes, physical activity levels, and physical health. Ann. Behav. Med. 50 : 907– 19 [Google Scholar]
• Laumann EO , Leitsch SA , Waite LJ 2008 . Elder mistreatment in the United States: prevalence estimates from a nationally representative study. J. Gerontol. B 63 : S248– 54 [Google Scholar]
• Lilly MB , Laporte A , Coyte PC 2007 . Labor market work and home care's unpaid caregivers: a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work. Milbank Q 85 : 641– 90 [Google Scholar]
• Lilly MB , Laporte A , Coyte PC 2010 . Do they care too much to work? The influence of caregiving intensity on the labour force participation of unpaid caregivers in Canada. J. Health Econ. 29 : 895– 903 [Google Scholar]
• Loi SM , Dow B , Ames D , Moore K , Hill K et al. 2014 . Physical activity in caregivers: What are the psychological benefits?. Arch. Gerontol. Geriatr. 59 : 204– 10 [Google Scholar]
• Lopez-Hartmann M , Wens J , Verhoeven V , Remmen R 2012 . The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int. J. Integr. Care 12 : e133 [Google Scholar]
• Marim CM , Silva V , Taminato M , Barbosa DA 2013 . Effectiveness of educational programs on reducing the burden of caregivers of elderly individuals with dementia: a systematic review. Rev. Lat. Am. Enfermagem. 21 : 267– 75 [Google Scholar]
• Martire LM , Schulz R. 2007 . Involving family in psychosocial interventions for chronic illness. Curr. Dir. Psychol. Sci. 16 : 90– 94 [Google Scholar]
• Mason A , Weatherly H , Spilsbury K , Arksey H , Golder S et al. 2007 . A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers. Health Technol. Assess. 11 : 1– 157 [Google Scholar]
• Mausbach BT , Patterson TL , Rabinowitz YG , Grant I , Schulz R 2007 . Depression and distress predict time to cardiovascular disease in dementia caregivers. Health Psychol 26 : 539– 44 [Google Scholar]
• Mausbach BT , Roepke SK , Depp CA , Moore R , Patterson TL , Grant I 2011 . Integration of the pleasant events and activity restriction models: development and validation of a “PEAR” model of negative outcomes in Alzheimer's caregivers. Behav. Ther. 42 : 78– 88 [Google Scholar]
• Meng A. 2013 . Informal home care and labor-force participation of household members. Empir. Econ. 44 : 959– 79 [Google Scholar]
• Monin JK , Levy B , Doyle M , Schulz R , Kershaw T 2019 . The impact of both spousal caregivers’ and care recipients’ health on relationship satisfaction in the Caregiver Health Effects Study. J. Health Psychol. 24 : 1744 – 55 [Google Scholar]
• Monin JK , Schulz R. 2009 . Interpersonal effects of suffering in older adult caregiving relationships. Psychol. Aging 24 : 681– 95 [Google Scholar]
• Natl. Alliance Caregiv. AARP Public Policy Inst 1997 . Family caregiving in the U.S.: findings from a national survey Rep., Natl. Alliance Caregiv./AARP Public Policy Inst. Washington, DC: [Google Scholar]
• Natl. Alliance Caregiv. AARP Public Policy Inst 2004 . Caregiving in the U.S.: 2004 report Rep., Natl. Alliance Caregiv./AARP Public Policy Inst. Washington, DC: [Google Scholar]
• Natl. Alliance Caregiv. AARP Public Policy Inst 2009 . Caregiving in the U.S.: 2009 report Rep., Natl. Alliance Caregiv./AARP Public Policy Inst. Washington, DC: [Google Scholar]
• Natl. Alliance Caregiv. AARP Public Policy Inst 2015 . Caregiving in the U.S.: 2015 report Rep., Natl. Alliance Caregiv./AARP Public Policy Inst. Washington, DC: [Google Scholar]
• Nichols LO , Martindale-Adams J , Burns R , Zuber J , Graney MJ 2016 . REACH VA: moving from translation to system implementation. Gerontologist 56 : 135– 44 [Google Scholar]
• O'Reilly D , Rosato M , Maguire A 2015 . Caregiving reduces mortality risk for most caregivers: a census-based record linkage study. Int. J. Epidemiol. 44 : 1959– 69 [Google Scholar]
• Orgeta V , Miranda-Castillo C. 2014 . Does physical activity reduce burden in carers of people with dementia? A literature review. Int. J. Geriatr. Psychiatry 29 : 771– 83 [Google Scholar]
• O'Toole MS , Zachariae R , Renna ME , Mennin DS , Applebaum A 2017 . Cognitive behavioral therapies for informal caregivers of patients with cancer and cancer survivors: a systematic review and meta-analysis. Psychooncology 26 : 428– 37 [Google Scholar]
• Pearlin LI , Mullan JT , Semple SJ , Skaff MM 1990 . Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 30 : 583– 94 [Google Scholar]
• Penrod JD , Kane RA , Kane RL , Finch MD 1995 . Who cares? The size, scope and composition of the caregiver support system. Gerontologist 35 : 489– 97 [Google Scholar]
• Pinquart M , Sörensen S. 2003 . Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J. Gerontol. B 58 : P112– 28 [Google Scholar]
• Pinquart M , Sörensen S. 2006 . Gender differences in caregiver stressors, social resources and health: updated meta-analysis. J. Gerontol. B 61 : P33– 45 [Google Scholar]
• Pusey H , Richards D. 2001 . A systematic review of the effectiveness of psychosocial interventions for carers of people with dementia. Aging Mental Health 5 : 107– 19 [Google Scholar]
• Reiner M , Niermann C , Jekauc D , Woll A 2013 . Long-term health benefits of physical activity—a systematic review of longitudinal studies. BMC Public Health 13 : 813 [Google Scholar]
• Reinhard S , Feinberg L. 2015 . The escalating complexity of family caregiving: meeting the challenge. Family Caregiving in the New Normal JE Gaugler, RL Kane 291– 304 Cambridge, MA: Academic [Google Scholar]
• Reinhard SC , Levine C , Samis S 2012 . Home alone: family caregivers providing complex chronic care Rep., United Hosp. Fund/AARP Public Policy Inst. Washington, DC: [Google Scholar]
• Robison J , Fortinsky R , Kleppinger A , Shugrue N , Porter M 2009 . A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. J. Gerontol. B 64 : 788– 98 [Google Scholar]
• Roth DL , Fredman L , Haley WE 2015 . Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist 55 : 309– 19 [Google Scholar]
• Savovic J , Turner RM , Mawdsley D , Jones HE , Beynon R et al. 2018 . Association between risk-of-bias assessments and results of randomized trials in Cochrane reviews: the ROBES meta-epidemiologic study. Am. J. Epidemiol. 187 : 1113– 22 [Google Scholar]
• Schoenmakers B , Buntinx F , Delepeleire J 2010 . Factors determining the impact of care-giving on caregivers of elderly patients with dementia: a systematic literature review. Maturitas 66 : 191– 200 [Google Scholar]
• Schulz R. 2019 . The intersection of family caregiving and work: labor force participation, productivity, and caregiver well-being. Current and Emerging Trends in Aging and Work S Czaja, J Sharit, J James, J Grosch Berlin: Springer In press [Google Scholar]
• Schulz R 2000 . Handbook on Dementia Caregiving: Evidence-Based Interventions for Family Caregivers Berlin: Springer [Google Scholar]
• Schulz R , Beach SR , Cook TB , Martire LM , Tomlinson JM , Monin JK 2012 . Predictors and consequences of perceived lack of choice in becoming an informal caregiver. Aging Mental Health 16 : 712– 21 [Google Scholar]
• Schulz R , Beach SR , Friedman EM , Martsolf GR , Rodakowski J , James AE 2018 . Changing structures and processes to support family caregivers of seriously ill patients. J. Palliat. Med. 21 : S36– 42 [Google Scholar]
• Schulz R , Czaja SJ , Lustig A , Zdaniuk B , Martire LM , Perdomo D 2009 . Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehab. Psychol. 54 : 1– 15 [Google Scholar]
• Schulz R , Czaja SJ , McKay JR , Ory MG , Belle SH 2010 . Intervention taxonomy (ITAX): describing essential features of interventions. Am. J. Health Behav. 34 : 811– 21 [Google Scholar]
• Schulz R , Eden J , eds. 2016 . Families Caring for an Aging America Washington, DC: Natl. Acad. Press [Google Scholar]
• Schulz R , Hebert RS , Dew MA , Brown SL , Scheier MF et al. 2007 . Patient suffering and caregiver compassion: new opportunities for research, practice, and policy. Gerontologist 47 : 4– 13 [Google Scholar]
• Schulz R , Mendelsohn AB , Haley WE , Mahoney D , Allen RS et al. 2003 . End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N. Engl. J. Med. 349 : 1936– 42 [Google Scholar]
• Schulz R , O'Brien AT , Bookwala J , Fleissner K 1995 . Psychiatric and physical morbidity effects of Alzheimer's disease caregiving: prevalence, correlates, and causes. Gerontologist 35 : 771– 91 [Google Scholar]
• Schulz R , Sherwood P. 2008 . Physical and mental health effects of family caregiving. Am. J. Nurs. 108 : 23– 27 [Google Scholar]
• Schulz R , Tompkins CA. 2010 . Informal caregivers in the United States: prevalence, caregiver characteristics, and ability to provide care. The Role of Human Factors in Home Health Care , Workshop Summary 117– 43 Washington, DC: Natl. Acad. Press [Google Scholar]
• Schulz R , Wahl H , Matthews JT , De Vito Dabbs A , Beach SR , Czaja SJ 2015 . Advancing the aging and technology agenda in gerontology. Gerontologist 55 : 724– 34 [Google Scholar]
• Scott JL , Dawkins S , Quinn MG , Sanderson K , Elliott KE et al. 2016 . Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TB-CBT) interventions for dementia carers. Aging Mental Health 20 : 793– 803 [Google Scholar]
• Shaw C , McNamara R , Abrams K , Cannings-John R , Hood K et al. 2009 . Systematic review of respite care in the frail elderly. Health Technol. Assess. 13 : 1– 224 [Google Scholar]
• Simonelli C , Tripodi F , Rossi R , Fabrizi A , Lembo D et al. 2008 . The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer spouse. Int. J. Clin. Pract. 62 : 47– 52 [Google Scholar]
• Spillman BC , Pezzin LE. 2000 . Potential and active family caregivers: changing networks and the “sandwich generation.”. Milbank Q 78 : 347– 74 [Google Scholar]
• Strawbridge WJ , Wallhagen MI. 1991 . Impact of family conflict on adult child caregivers. Gerontologist 31 : 770– 77 [Google Scholar]
• Torti FM , Gwyther LP , Reed SD , Friedman JY , Schulman KA 2004 . A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis. Assoc. Disord. 18 : 99– 109 [Google Scholar]
• van der Lee J , Bakker TJ , Duivenvoordenc HJ , Droes RM 2014 . Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing Res. Rev. 15 : 76– 93 [Google Scholar]
• Van Houtven CH , Coe NB , Skira MM 2013 . The effect of informal care on work and wages. J. Health Econ. 32 : 240– 52 [Google Scholar]
• Vandepitte S , Van Den Noortgate N , Putman K , Verhaeghe S , Verdonck C , Annemans L 2016 . Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review. Int. J. Geriatr. Psychiatry 31 : 1277– 88 [Google Scholar]
• Vazeou Nieuwenhuis A , Beach SR , Schulz R 2018 . Care recipient concerns about being a burden and unmet needs for care. Innov. Aging 2 : igy026 [Google Scholar]
• Vitaliano PP , Zhang JP , Scanlan JM 2003 . Is caregiving hazardous to one's physical health? A meta-analysis. Psychol. Bull. 129 : 946– 72 [Google Scholar]
• von Känel R , Mausbach BT , Patterson TL , Dimsdale JE , Aschbacher K et al. 2008 . Increased Framingham Coronary Heart Disease Risk Score in dementia caregivers relative to non-caregiving controls. Gerontology 54 : 131– 37 [Google Scholar]
• Warburton DER , Nicol CW , Bredin SSD 2006 . Health benefits of physical activity: the evidence. CMAJ 174 : 801– 9 [Google Scholar]
• Wasilewski MB , Stinson JN , Cameron JI 2017 . Web-based health interventions for family caregivers of elderly individuals: a scoping review. Int. J. Med. Inform. 103 : 109– 38 [Google Scholar]
• Wendler D , Rid A. 2011 . Systematic review: the effect on surrogates of making treatment decisions for others. Ann. Intern. Med. 154 : 336– 46 [Google Scholar]
• Wolff JL , Kasper JD. 2006 . Caregivers of frail elders: updating a national profile. Gerontologist 46 : 344– 56 [Google Scholar]
• Wolff JL , Spillman BC , Freedman VA , Kasper JD 2016 . A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern. Med. 176 : 372– 79 [Google Scholar]
• Yee J , Schulz R. 2000 . Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist 40 : 147– 64 [Google Scholar]

Data & Media loading...

• Article Type: Review Article

Most Read This Month

Most cited most cited rss feed, job burnout, executive functions, social cognitive theory: an agentic perspective, on happiness and human potentials: a review of research on hedonic and eudaimonic well-being, sources of method bias in social science research and recommendations on how to control it, mediation analysis, missing data analysis: making it work in the real world, grounded cognition, personality structure: emergence of the five-factor model, motivational beliefs, values, and goals.

Click through the PLOS taxonomy to find articles in your field.

For more information about PLOS Subject Areas, click here .

Loading metrics

Open Access

Peer-reviewed

Research Article

Assessing the impact of caregiving on informal caregivers of adults with a mental disorder in OECD countries: A systematic literature review of concepts and their respective questionnaires

Roles Conceptualization, Data curation, Formal analysis, Methodology, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands

Roles Conceptualization, Data curation, Methodology, Supervision, Writing – review & editing

Roles Data curation, Writing – review & editing

Roles Conceptualization, Methodology, Supervision, Writing – review & editing

• Leonarda G. M. Bremmers, 
• Isabelle N. Fabbricotti, 
• Eleonora S. Gräler, 
• Carin A. Uyl-de Groot, 
• Leona Hakkaart-van Roijen

• Published: July 8, 2022
• https://doi.org/10.1371/journal.pone.0270278
• Reader Comments

We conducted a systematic literature review to identify and review the concepts and questionnaires used to assess the impact of caregiving on caregivers for adults with a mental disorder. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts. Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit and Google Scholar were systematically searched for articles from 1 January 2004 to 31 December 2019. Eligible articles were peer-reviewed studies that assessed the impact of caregiving for informal caregivers of adults with a reported mental disorder by means of a questionnaire. The complete study protocol can be found on PROSPERO (CRD42020157300). A total of 144 questionnaires were identified that assessed the impact of caregiving. Based on similarities in meaning, concepts were classified into 15 concept clusters. The most frequently assessed concept clusters were mental health, caregiving burden, other caregiving consequences, family impact, and overall health-related outcomes. The use of concept clusters differed per diagnosis group, with diagnoses, such as schizophrenia, using a wide range of caregiving impact concepts and other diagnoses, such as personality disorders, only using a limited range of concepts. This is the first study that identified and reviewed the concepts and questionnaires that are used to assess the impact of caregiving. Caregiving is researched from a broad array of perspectives, with the identification of a variety of concepts and dimensions and use of non-specific questionnaires. Despite increasing interest in this field of research, a high degree of variability remains abundant with limited consensus. This can partially be accredited to differences in the naming of concepts. Ultimately, this review can serve as a reference to researchers who wish to assess the impact of caregiving and require further insight into concepts and their respective questionnaires.

Citation: Bremmers LGM, Fabbricotti IN, Gräler ES, Uyl-de Groot CA, Hakkaart-van Roijen L (2022) Assessing the impact of caregiving on informal caregivers of adults with a mental disorder in OECD countries: A systematic literature review of concepts and their respective questionnaires. PLoS ONE 17(7): e0270278. https://doi.org/10.1371/journal.pone.0270278

Editor: Antony Bayer, Cardiff University, UNITED KINGDOM

Received: October 28, 2021; Accepted: June 7, 2022; Published: July 8, 2022

Copyright: © 2022 Bremmers et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting information files.

Funding: The authors received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

The mid-twentieth century saw a rise in the international consensus on the need for decentralized psychiatric care and new policy strategies for mental health patients. This consensus resulted in a radical deinstitutionalization movement across the USA, England, Continental Europe, and Scandinavia, with other countries later following suit [ 1 ]. The movement was characterized by a shift of care from the institutions to community-based services, with a strong focus on the reintegration and rehabilitation of patients [ 1 , 2 ]. However, fragmented community-based services often fail to address patients’ complex health needs [ 2 ], as suggested by the high prevalence of incarceration, homelessness, loneliness, victimization, and poor physical health outcomes of patients [ 2 – 6 ]. Consequently, patients are increasingly reliant on the care and support provided by their loved ones, hereinafter referred to as informal care [ 7 , 8 ]. The health care sector relies heavily on informal care, as it complements and substitutes services provided by formal care providers [ 9 – 12 ].

The provision of informal care is often characterized as a significant source of distress for the loved ones of patients and can have a detrimental impact on their daily lives and wellbeing [ 13 ]. Hence, the impact of caregiving should be considered in healthcare practice and policy [ 14 , 15 ]. Perspectives on the impact of caregiving and mental illness have evolved with the introduction of deinstitutionalization [ 16 , 17 ]. Before the turn of the century, caregiver research centered on two concepts, the negative impact of the patient on the caregiver (i.e., caregiving burden) and the negative impact of the caregiver on the patient (i.e., expressed emotion). This research was largely concentrated on caring for patients with schizophrenia; however, burden was also assessed for caregivers of patients with mood disorders. Over the decades, additional concepts have been developed to assess the rewarding aspects of caregiving, such as caregiving reward [ 18 ]. However, Harvey et al. found that caregiver outcomes reported in peer-reviewed articles are still restricted in scope and primarily focus on wellbeing, the caregiving experience, and need for professional support [ 19 ].

Despite the impact of caregiving being studied since the start of deinstitutionalization [ 18 ], the operationalization and conceptualization of these concepts has received limited academic attention [ 20 ]. There are a limited number of conceptual frameworks grounded in psychological and social theories for this caregiving population, with the existing frameworks primarily focused on familial responses to mental disorders [ 21 ]. Consequently, researchers report an inconsistent use of theoretical definitions and operationalization across the same concepts [ 21 , 22 ]. Ergo, the conceptualization and operationalization of the impact of caregiving may vary greatly between studies. To the best of our knowledge, no systematic literature review has yet investigated the conceptualization and operationalization of the impact of caregiving in this caregiver population. A literature review conducted by Schene, Tessler, and Gamache compiled caregiving questionnaires and their respective domains; however, this was limited to one concept, namely caregiving burden [ 23 ].

A complete overview of the conceptualization and operationalization of the impact of caregiving could improve the understanding of these concepts [ 24 ] and aid in determining how they are used in scientific research. By systematically identifying the similarities and discrepancies of concepts and their respective dimensions across questionnaires, an in-depth insight can be gained into the perspectives that are used in caregiver research. These insights may help researchers to select the appropriate concepts and questionnaires and improve comparability of results across studies. Therefore, we conducted a systematic literature review to identify and review the concepts and questionnaires that are used to assess the impact of caregiving on caregivers for adult patients with mental disorders in OECD countries. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts.

This systematic literature review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Refer to S1 Table for the completed PRISMA checklist [ 25 ]. The complete study protocol is registered on PROSPERO (CRD42020157300).

Search strategy and data sources

The search strategy was constructed a priori with an information specialist using terms related to “informal caregivers,” “mental disorders,” and “questionnaires” [ 26 ]. On December 6, 2019, Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit, and Google Scholar were searched. The search was restricted to include articles published from January 1, 2004, onwards. For the complete search strategy refer to S1 File .

Selection criteria

We included quantitative and mixed-method studies published in scientific journals, which reported original data and assessed the impact of caregiving by means of a questionnaire. The informal caregivers had to provide care and support to adults with a reported mental disorder. Relevant mental disorders were identified with the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders [ 27 ]. Neurocognitive disorders and delirium were not considered, because the nature of these disorders and conditions is not comparable to other mental disorders [ 28 ] and thus has a significant impact on the reported caregiving experience [ 29 , 30 ]. Additionally, care recipients with a physical comorbidity were excluded because they have different care needs and their caregivers are at a higher risk for adverse outcomes and events [ 31 – 34 ]. Care recipients and caregivers had to be at least 18 years of age. Studies needed to be conducted in countries within the Organization for Economic Co-operation and Development (OECD) region [ 35 ] to avoid cultural specificity that could be caused by differing cultural norms and perceptions [ 19 ]. Lastly, the review was restricted to empirical and peer-reviewed studies that were published in English.

Selection of studies

Prior to the formal screening of hits, the selection criteria were piloted and adjusted amongst the research team (LB, LH, IF) using a randomly selected sample of hits (n = 50). A four-stage screening process was implemented using the selection criteria. First, all search hits were imported into Endnote X6, and duplicates were removed using a reproducible de-duplication method [ 36 ]. Second, title and abstract screening were conducted by two independent reviewers (LB, EG). Any disagreements concerning title and abstract eligibility were discussed with the other members of the research team (IF, LH). Third, the full-text articles were retrieved if the review criteria were met or if there was insufficient information in the abstract to assess eligibility. Fourth, full texts were independently screened by two reviewers (LB, IF) and those that met the inclusion criteria were included [ 25 ]. Any disagreements concerning article eligibility were discussed with a third reviewer from the research team (LH).

Data extraction

Data were extracted by the primary researcher (LB) using a data extraction matrix. Relevant data included: country, study design, disorder of care recipient, questionnaire name, questionnaire author, concept studied, dimensions, operationalization of each dimension, and the original target population of the questionnaire. Given that some of the questionnaire data were not reported in the articles, it was sometimes necessary to refer to the questionnaires’ reported source article(s).

Data analysis

All concepts were clustered according to the common phenomenon that they assessed. These clusters formed concept clusters which were then titled using the higher-order concept that they assessed. The concept clusters were generated by LB and then reviewed by the other co-authors (IF, CU and LH).

Meta summaries [ 37 ] were generated for each concept cluster and reported the dimensions of each questionnaire, including their operationalization. If the operationalization of the dimensions could not be found, then this was reported in the meta-summary as “not reported” (NR). For each meta summary, dimensions were grouped by theme. An overview and explanation of all relevant terms can be found in Table 1 .

• PPT PowerPoint slide
• PNG larger image
• TIFF original image

https://doi.org/10.1371/journal.pone.0270278.t001

To investigate trends, the extracted data were grouped by concept clusters and graphed against the number of times it was assessed from 2004–2019. Additionally, the assessment of concept clusters was determined per diagnosis group.

Literature review and study characteristics

The systematic search yielded a total of 24,314 reference with 9,772 duplicates. Title and abstract screening resulted in the exclusion of 13,659 papers. A total of 883 full-text articles were reviewed. The main reasons for full-text exclusion were, as follows: did not assess the impact of caregiving (n = 236), performed in non-OECD country (n = 98) or was not a peer-reviewed article (n = 91). A total of 173 papers fulfilled the eligibility criteria and were included ( Fig 1 ).

https://doi.org/10.1371/journal.pone.0270278.g001

All articles reported observational study designs, including cross-sectional (n = 131, 75%), case-control (n = 21, 12%), prospective cohort study designs (n = 19, 11%), and case-control and cross-sectional (n = 3, 2%). These studies were conducted in OECD countries across Asia, Australia, Europe, North America, and South America, with a majority of the studies being conducted in the United States of America (n = 33, 19%), the United Kingdom (n = 30, 17%), and Spain (n = 26, 15%). A variety of mental disorders were studied; however, the most common disorders were schizophrenia and other primary psychotic disorders (n = 72, 41%), depressive disorders (n = 19, 11%) and eating disorders (n = 19, 11%). Forty-seven of the articles (27%) did not specify the mental disorder that was studied. For a comprehensive list of study characteristics refer to S2 Table .

Description of questionnaires

A total of 144 questionnaires were identified that assessed the impact of caregiving. Impact of caregiving concepts were categorized into 15 concept clusters, namely caregiving burden , caregiving needs , caregiver service use , characteristics of caregivers , conceptions of mental illness , family impact , mental health , overall caregiving situation , physical health , overall health , quality of life , satisfaction , social impact , work impact , and other caregiving consequences , ( Table 2 ). Three types of questionnaires were identified based on the original target population, namely “specific mental disorder” (n = 32; 22%) “non-specified mental disorder” (n = 46; 32%) and “other” (n = 67; 46%). The specific mental disorders were autism spectrum disorder (n = 3), eating disorders (n = 3), mood disorders (n = 4), personality disorders (n = 4), and primary psychotic disorders (n = 15), and primary psychotic disorders and personality disorders (n = 2). A total of 20 non-validated questionnaires (13%) were identified that were specifically developed for the purpose of those studies.

https://doi.org/10.1371/journal.pone.0270278.t002

Impact of caregiving

Conceptualization and operationalization..

The concept clusters are described in detail below. The dimensions and operationalization of each concept (cluster), including all references, can be found in the meta-summaries reported in the S2 File .

Caregiving burden . Caregiving burden assesses the strain and negative consequences of caregiving, with objective and subjective burden emerging as two distinct conceptualizations. Objective burden is the negative occurrences that resulted from caregiving, including the interruption of personal time, missing work, and financial strain. Subjective burden are the affective responses exhibited by the informal caregiver due to their caregiving, including subjective worry and distress. Caregiving burden was assessed for individual caregivers and families that took on a caregiving role. From 28 questionnaires, a total of 70 dimensions were identified. Caregiving burden was operationalized into overall caregiving burden, the impact of caregiving on their daily lives and wellbeing, the caregiver-care recipient relationship, and self-rated incompetence. Overall caregiving burden was assessed as non-specific evaluations of objective and subjective burden and the duration of various caregiving tasks. The impact of caregiving included negative and positive consequences that affected the caregiver’s appraisal of their caregiving situation, their care recipient, and their everyday lives. The effect of caregiving on the caregiver’s everyday life was widespread and included their health, wellbeing, financial situation, work, leisure, and relationships. The effect of caregiving on the family focused on the dynamics of the household, the relationship with their partner, and the impact on individual family members, especially the children. The framing of the caregiver-care recipient relationship was negative and focused on tensions that existed due to the care recipient’s condition and the caregiving situation. Caregiver incompetence was operationalized as the caregiver’s valuation of their caregiving abilities.

Caregiving needs . Caregiving needs refers to the desires and necessities of the informal caregiver due to their caregiving responsibilities. These needs were identified for the family, relatives and other individuals that took on the caregiving role. A total of nine questionnaires operationalized caregiving needs into 25 dimensions. Needs were identified in relation to the caregiving situation and the personal life of the caregiver. Caregiving situation needs were the needs for caregiver support and other needs related to the care recipient’s symptoms and behavior. Caregiver support was identified for different caregiving tasks and caregiver support services. Additionally, caregiver needs in their personal life were identified and operationalized for the caregiver’s social life, work/study, and finances.

Caregiver service use . Caregiver service use is conceptualized as the informal caregiver’s utilization of informal and formal services due to their informal care provision. Caregiver service use was operationalized by six questionnaires into six dimensions. Overall service use was identified as a general service use dimension that considered service use from medical services, community-based and criminal justice service contacts, and different forms of caregiver support use. Caregiver support services included assistance provided to the caregiver on behalf of a variety of informal and formal community-based sources. Medical care use were dimensions that assessed specialized health service utilization (i.e., mental, and physical health services) and primary care service utilization.

Characteristics of caregivers . Characteristics of caregivers are concepts that defined the daily lives of informal caregivers and were impacted by caregiving. Four questionnaires operationalized these concepts into 19 dimensions. These dimensions assessed different aspects of the informal caregiver’s daily life, their caregiving intentions for the future, and sense of coherence. The informal caregiver’s daily life concerned stressful events that could occur, their religion, their involvement in the community, and self-care priorities. The intention to provide care was assessed for different caregiving tasks that the individual would be willing to perform in the future. Sense of coherence refers to the adaptive dispositional orientation of a person that enables them to cope with adverse experiences.

Conceptions of mental illness . Conceptions of mental illness is defined as the informal caregiver’s personal understanding and opinions of mental illness and their care recipient and considered how this was affected by caregiving. This was conceptualized as the informal caregiver’s overall knowledge and their assessment of disease-related behaviors and attitudes. A total of six questionnaires was operationalized into 25 dimensions. Knowledge and understanding of mental disorders were the caregiver’s understanding of the different stages of the patient’s disease trajectory. Stigma emerged as a separate dimension, which concerned the negative or false personal beliefs that the caregiver may have about mental illness or individuals suffering from a mental illness. Personal blame assessed the caregiver’s attribution of blame directed towards themselves and the care recipient for the mental disorder.

Family impact . Family impact is conceptualized as the positive and negative consequences that caregiving and the care recipient have on the family unit. These concepts assessed the family’s dynamics and the family caregiver’s attitudes towards specific mental disorders. Sixteen questionnaires operationalized family impact into 42 dimensions. The dimensions assessed family functioning and communication, expressed emotion, and characterized the family’s caregiving situation. Different aspects relating to family functioning were identified, such as the family’s ability to problem solve and family cohesion. Expressed emotion is a measure of the family environment based on how family members spontaneously talk about their mentally ill relative [ 195 ]. The caregiving situation was characterized by the caregiving tasks that were performed and the family’s responses to caregiving and the care recipient.

Mental health . Mental health refers to informal caregiver’s diagnosable psychiatric disorders, psychological wellbeing and distress, and emotional wellbeing measures that were impacted by caregiving. Thirty-three questionnaires assessed mental health concepts and operationalized them into 65 dimensions. Several psychiatric disorders were operationalized, namely burnout, mood disorders, anxiety disorders, obsessive compulsive disorders, and primary psychotic disorders. Dimensions assessing subjective sense of personal worth were found that assessed the informal caregiver’s purpose in life and personal growth. Negative dimensions relating to emotional wellbeing were identified, such as grief and stress. Environmental mastery is a dimension that assesses the informal caregiver’s self-rated sense of control and competence in managing their external environment and making effective use of their surrounding opportunities. Overall psychological measures were operationalized as either negative (i.e., psychological distress) and positive dimensions (i.e., psychological wellbeing).

Overall caregiving situation . Overall caregiving situation refers to the informal caregiver’s appraisal of their caregiving experience and their involvement in the care recipient’s care. A total of 9 questionnaires assessed the overall caregiving situation . From these questionnaires, 29 dimensions were identified. These dimensions assessed the informal caregiver’s appraisal of their caregiving abilities and situation, caregiver support, and care recipient characteristics. The informal caregiver’s appraisal of their caregiving abilities was largely comprised of self-efficacy. Self-efficacy is the informal caregiver’s perceived ability to succeed in specific situations. Caregiver’s appraisal of their caregiving situation was operationalized into negative and positive dimensions that assessed specific aspects of their caregiving situation, such as interaction guilt and good aspects of the relationship. Caregiving support is the availability and quality of particular caregiver support services. The informal caregiver’s appraisal of the care recipient included negative behaviors, symptoms, and aggression exhibited by the care recipient.

Physical health . Physical health is conceptualized as the caregiver’s overall physical health and specific physical ailments that were impacted by caregiving. From six questionnaires, a total of 14 dimensions were identified. Physical health was operationalized into general health-related characteristics, overall physical health, and physical conditions. General health-related characteristics are factors that may influence the caregiver’s overall physical health, including lifestyle and demographic measures. Overall physical health is the caregiver’s self-rated poor physical health days. Physical conditions are a range of disorders across the major human bodily systems.

Overall health . Overall health is conceptualized as the informal caregiver’s general health status, functioning, and wellbeing due to caregiving. A total of 9 questionnaires assessed overall health and was operationalized into 41 dimensions. The dimensions included the caregiving situation and the informal caregiver’s overall health status. In relation to the caregiving situation, negative characteristics of the care recipient, day-to-day life as a caregiver, safety, and the caregiver-care recipient relationship were identified as relevant domains. Overall health was operationalized as the caregiver’s overall functioning, health, and social wellbeing.

Quality of life . Quality of life is the overall quality of life measures that were impacted by caregiving. Quality of life was conceptualized as general quality of life measures and quality of life measures related to the care and health domains. Six questionnaires operationalized quality of life into 24 dimensions. The domains assessed the caregiver’s environment, which refers to their financial resources, residence, socioeconomic status, and physical environment. The family of the caregiver was evaluated, wherein the dimensions considered the interactions between family members and their overall happiness. Caregiver health was operationalized into domains that assessed their ability to function in terms of their mental, physical, and overall health.

Satisfaction . Satisfaction is defined as a measure of the informal caregiver’s overall fulfilment of their expectations, needs, and wishes in relation to their caregiving situation and other aspects of their life. The concepts were evaluated for families and other individuals that took on the caregiving role. Seven questionnaires operationalized satisfaction into 21 dimensions. Satisfaction with life was operationalized as the informal caregiver’s life being close to ideal, having the important things that they want in life, and having no desire to change anything if they could live their life over. Satisfaction with caregiver support was the caregiver’s satisfaction with respite care, their support from different health providers, and caregiver’s involvement in the care recipient’s treatment. Family satisfaction is satisfaction relating to the functioning of the family as a whole and between spouses.

Social impact . Social impact are the consequences of caregiving on the informal caregiver’s social life and was conceptualized as experienced stigma, social participation, and negative social impact. The concepts were operationalized by six questionnaires with a total of 16 dimensions. The dimensions included the nature of social contacts, social support and participation, and stigma. The nature of social contacts was framed as negative social consequences and the frequency of contact. Negative social consequences included social isolation and rejection. Two different types of social support were identified, namely emotional and practical social support. Social participation evaluated engagement in activities and community-based organizations, such as charitable organizations.

Work impact . Work impact refers to the impact that caregiving had on the informal caregiver’s paid and unpaid work. Three questionnaires assessed work impact-related concepts. From these questionnaires, eight dimensions were identified. These dimensions included productivity loss, labor force participation, and sources of income. Two types of productivity loss were operationalized, namely absenteeism and presenteeism.

Other caregiving consequences . Other caregiving consequences includes impact of caregiving measures that were not domain specific. A total of 10 questionnaires were identified. These concepts were operationalized into 30 dimensions. These dimensions classified consequences based on who was affected by the caregiving situation. Other consequences for the caregiver were operationalized by questionnaires as negative and positive framing of consequences and included consequences for their daily lives, self-development, the relationship with the care recipient, and the caregiving situation.

Trends in concept cluster use.

The five most frequently assessed concept clusters were mental health (n = 75), caregiving burden (n = 65), other caregiving consequences (n = 30), family impact (n = 22), and overall health (n = 22). Mental health and caregiving burden had distinct increases in assessment over the years compared to other concept clusters. The other concept clusters had no clear assessment trends, with some random assessment spikes.

Use of concept clusters per diagnosis group.

Concept use was determined for all diagnosis groups ( Table 3 ). The distribution of concept use differed per diagnosis group. Select diagnosis groups, namely schizophrenia and other primary psychotic disorders, eating disorders, bipolar disorders, depressive disorders, and autism spectrum disorders, employed a broad scope in impact of caregiving. The other diagnosis groups only used a limited number of concept clusters. For anxiety disorders, autism spectrum disorder, bipolar and related disorders, eating disorders, personality disorders, schizophrenia and other primary psychotic disorders, and trauma- and stressor-related disorders, the most assessed concept cluster was mental health . Quality of life was the most assessed concept cluster for anxiety disorders and obsessive compulsive and related disorders. Caregiving burden was the top concept cluster for attention deficit hyperactivity disorder, depressive disorders, and substance-related and addictive disorders.

https://doi.org/10.1371/journal.pone.0270278.t003

This is the first systematic literature review to generate an overview of the questionnaires and concepts used to assess the impact of caregiving. We found that caregiving has a widespread impact on the lives of informal caregivers; however, the assessment of impact was often limited to domain specific measures. Moreover, there was a high degree of variability in the conceptualization and operationalization of the impact of caregiving. Despite the increasing number of publications in this field of research, there is no clear consensus on the use of concepts and questionnaires. The results of the review indicate that over the last 15 years, a variety of concepts were used to assess the impact of caregiving, irrespective of the type of mental disorder and timeframe. The variability can partly be accredited to the terminology used to define the respective area of impact. When concepts were clustered, the impact of caregiving was conceptualized into 15 concept clusters.

In our study, we found that the current conceptualization and operationalization of caregiving impact does not align with theoretical frameworks in the field. The current caregiving research paradigm aims to understand the experience of having a relative with a mental disorder [ 21 ] and allows for the negative and positive assessment of informal caregiving [ 196 ]. These theoretical models include theories of resilience [ 197 , 198 ] and stress-coping approaches [ 199 ] and form the basis of some of the questionnaires that were identified in the review, such as the Experience of Caregiving Inventory [ 22 ]. These respective concepts were classified as other caregiving consequences and overall caregiving situation and address the shortcomings of concepts that are not grounded in psychological and social theories (i.e., caregiving burden ). Caregiving burden is critiqued for being difficult to operationalize [ 21 , 22 ] and unable to recognize the rewarding aspects of caregiving [ 200 ]. However, as evidenced by our review, concepts such as caregiving burden remain popular in caregiving research. This could be due to the historical use of this concept in caregiving research [ 18 ] and methodological limitations of studies that support the negative assessment of informal caregiving [ 196 ].

The assessment of the caregiving impact differed across disease groups, with certain disease groups assessing a range of concepts and others only assessing a limited number of concepts. Further research is needed to determine whether the impact of caregiving is truly less widespread for particular disease groups. This trend appeared to correspond with the number of times that a disease group was studied. Schizophrenia and other primary psychotic disorders were the most studied disease group in our review and have received academic attention since the start of deinstitutionalization [ 18 ]. This may be due to the symptomology of primary psychotic disorders [ 201 ] and disease-related stigma [ 202 , 203 ]. Symptomology of disorders can have a significant impact on caregivers, regardless of diagnosis [ 204 ]. For example, positive symptoms of schizophrenia patients are received differently by caregivers than negative symptoms [ 201 ]. Similarly, caregiver burden has been found to fluctuate due to varying behavior exhibited by bipolar patients across manic and hypomanic episodes [ 205 ]. Nonetheless, peer-reviewed literature is generally focused on investigating the impact of caregiving for specific mental disorders and not symptoms [ 206 – 208 ].

The sensitivity of identified questionnaires may not be sufficient to detect the impact of caregiving for this study population, because almost half of the questionnaires were not originally developed for psychiatric disorders. The lived experiences of caregivers for patients with mental disorders are complex [ 209 ] and differ to that of other informal caregivers [ 33 , 210 ]. They are often left vulnerable to structural discrimination, which can adversely affect their social interactions and access to certain social roles [ 211 – 214 ]. Likewise, the symptoms of severe mental disorders have been identified as strong predictors of depression and anxiety [ 215 ]. Caregivers state that they often have difficulties understanding the symptoms and behavior of their loved ones [ 216 ]. They are also required to navigate fragmented medical, legal, and governmental systems to ensure that their loved ones receive adequate medical care. These formal systems often neglect the informal caregiver and undervalue their role [ 209 , 217 ]. Currently, limited data is available to determine the acceptability, reliability, and validity of questionnaires for this caregiving population [ 19 ]. However, the comparability of questionnaires across studies and conditions should also be considered when selecting a questionnaire.

Future research recommendations

The results of this review give an initial insight into the operationalization and conceptualization of the impact of caregiving; however, further research is needed to: (a) ensure the completeness of concepts and dimensions, (b) validate the formulation of our concept clusters, (c) explore the prioritization of concepts by informal caregivers, (d) determine whether the lived experiences of this caregiving population warrant the use of specific questionnaires, and (e) investigate how the conceptualization and operationalization of caregiving impact may differ across diagnosis groups.

Methodological limitations

There are some limitations that should be explored. Firstly, the paper should be scrutinized for categorical bias. Categorical bias could have occurred during the generation of the concept clusters because the process required a degree of personal interpretation. Secondly, the transferability of our findings to other cultural settings is limited, due to the exclusion of non-English publications and non-OECD research. The cultural norms and perceptions concerning informal caregiving has been found to vary greatly across countries and could have impacted our identification of concepts [ 19 ]. Thirdly, studies and questionnaires could not be identified for some mental disorders. These factors may have affected the selection of concepts and their respective operationalization. Lastly, the generalizability of our study was limited to adult caregivers and care recipients. The age of the care recipient and caregiver is a factor that not only alters the caregiving experience, but also plays a role in the impact of caregiving. For example, concepts such as parentification are not relevant for adults and was not included in our concept list but should be considered for minors [ 218 ].

Supporting information

S1 table. prisma checklist..

https://doi.org/10.1371/journal.pone.0270278.s001

S2 Table. Study characteristics of component articles.

https://doi.org/10.1371/journal.pone.0270278.s002

S1 File. Complete search string per database.

https://doi.org/10.1371/journal.pone.0270278.s003

S2 File. Impact of caregiving meta-summaries.

NR = not reported.

https://doi.org/10.1371/journal.pone.0270278.s004

Acknowledgments

The authors wish to thank dr. Maarten F. M. Engel from the Erasmus MC Medical Library for developing and updating the search strategies.

• View Article
• PubMed/NCBI
• Google Scholar
• 7. World Health Organization, World Bank. World report on disability 2011. [Internet]. 2011. https://apps.who.int/iris/handle/10665/44575
• 18. Schene AH, Tessler RC, Gamache GM. Caregiving in severe mental illness: conceptualization and measurement. In: Knudsen HC, Thornicroft G, editors. Mental health service evaluation. 1st ed. Cambridge (UK): Cambridge University Press; 1994. p. 296–316.
• 24. Beatty P, Collins D, Kaye L, Padilla JL, Willis G, Wilmot A, editors. Advances in Questionnaire Design, Development, Evaluation and Testing. Hoboken (NJ): Wiley Publishers; 2020.
• 27. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th edition. Arlington (VA): American Psychiatric Publishing; 2013.
• 35. Organisation for Economic Co-operation and Development. OECD Member Countries. https://www.oecd.org/about/member-and-partners/ [Accessed 31 December 2019].
• 37. Sandelowski M, Barroso J. Handbook for synthesizing qualitative research. New York (NY): Springer; 2007.
• 49. Bickman L, Athay MM, Riemer M, Lambert EW, Kelley SD, Breda C, et al. Manual of the Peabody treatment progress battery. Nashville (TN): Vanderbilt University; 2007.
• 50. Gilleard CJ. Living with Dementia: Community Care of the Elderly Mental Infirm. London (UK): Croom Helm; 1984.
• 54. Struening E, Vine P, Stueve A, Kreisman D, Link B, Ellis M, et al. The Family Impact Study. New York (NY): The New York State Psychiatric Institute; 1993.
• 55. Sell H, Thara R, Padmavati R, Kumar S. The Burden Assessment Schedule (BAS). WHO Regional Office for South-East Asia; 1998. Regional Publication No. 27. https://apps.who.int/iris/handle/10665/205977 .
• 62. Tessler RC, Fisher GA, Gamache GM. The family burden interview schedule: Manual. Amherst (MA): Social and Demographic Research Institute; 1992.
• 66. Kluiter H, Kramer JJ, Wiersma D. Interview for Measuring the Burden on the Family (IBF). Groningen (NL): University of Groningen; 1998.
• 74. Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System Survey Data. Atlanta (GA): Department of Health and Human Services; 2016.
• 75. Statistics Canada. General Social Survey Cycle 26: Caregiving and Care Receiving 2012 Study Documentation. Ottawa (CA): Statistics Canada; 2013.
• 76. Chamba R, Ahmad W, Hirst M, Lawton D, Beresford B. On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child. Bristol (UK): Policy Press; 1999.
• 78. Speaks Autism. Autism Speaks Global Public Health Initiative [Internet]. New York (NY): Autism Speaks; 2016. https://www.autismspeaks.org/science-blog?article_type[2196]=2196&article_type[2196]=2196 .
• 79. Marwitz J. The Family Needs Questionnaire. [Internet] The Center for Outcome Measurement in Brain Injury; 2000. http://www.tbims.org/combi/fnq .
• 84. Beecham J, Knapp M. Costing psychiatric interventions. In: Thornicroft G, editor. Measuring Mental Health Needs. 2nd ed. London (UK): Royal College of Psychiatrists; 2001. p. 200–224.
• 85. Dunst CJ, Jenkins V, Trivette CM. Enabling and Empowering Families: Principles and Guidelines for Practice. Cambridge (MA): Brookline Books; 1988. Family Support Scale; p. 153–174.
• 89. Antonovsky A. Unraveling the mystery of health: how people manage stress and stay well. San Francisco (CA): Jossey-Bass Publishers; 1987.
• 101. Olson DH, Barnes H. Family Communication Scale. St Paul (MN): University of Minnesota; 1996.
• 103. Tessler R, Gamache G. Toolkit for Evaluating Family Experiences with Severe Mental Illness. Cambridge (MA): Human Services Research Institute; 1995.
• 107. Verdiano DL. Family roles: An integration of theory, research, and practice. ProQuest Dissertations Publishing; 1986. https://www.proquest.com/openview/7d17d5060f0a94125891a4fd22169966/1?pq-origsite=gscholar&cbl=18750&diss=y .
• 110. Beck AT, Steer RA. Beck Anxiety Inventory Manual. San Antonio (TX): The Psychological Corporation; 1990.
• 111. Maslach CJ, Jackson SE, Leiter MP. Maslach Burnout Inventory Manual. Palo Alto (CA): Consulting Psychologists Press; 1996.
• 114. Hautzinger M, Kuehner C, Keller F. BDI-II Beck-Depressions-Inventar [BDI-II Beck Depression Inventory]. Pearson Assessment & Information GmbH; 2006.
• 117. Kessler RC, Ustun TB, editors. The WHO World Mental Health Surveys: global perspectives on the epidemiology of mental disorders. New York (NY): Cambridge University Press; 2008.
• 127. Spielberger CD, Gorsuch RL, Lushene R, Vagg PR, Jacobs GA. Manual for the State-Trait Anxiety Inventory. Palo Alto (CA): Consulting Psychologists Press; 1983.
• 132. McNair DM, Lorr M, Droppleman LF. Profile of Mood States (POMS) Manual. San Diego (CA): Educational and Industrial Testing Service; 1981.
• 134. Derogatis LR. BSI-18: Administration, Scoring and Procedures Manual. New York (NY): NCS Pearson; 2001.
• 135. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety Stress Scales. Sydney (AU): Psychology Foundation; 1995.
• 136. González de Rivera JL, De las Cuevas C, Rodríguez M, Rodríguez F. Cuestionario de 90 Síntomas [90 Symptom Questionnaire]. Madrid (ES): TEA; 2002.
• 139. Arrindell WA, Ettema JH. Symptom Checklist SCL-90. Handleiding bij een multi-dimensionele psychopathologie-indicator [Symptom Checklist SCL-90. Hanbook for a multi-dimensional psychopathology indicator]. Lisse (NL): Swets Test Publishers; 2003.
• 142. Fernandez JL, Mielgo N. Escala de appreciacion de estres [Scale of stress perception]. Madrid (ES): TEA Ediciones; 2001.
• 143. Weiss D, Marmar C. The impact of event scale- revised. In: Wilson JP, Keane TM, editors. Assessing psychological trauma and PTSD. New York (NY): The Guilford Press; 1997.
• 147. Tokyo Metropolitan Institute of Gerontology. Primary Research about Health and Welfare Policy among Elderly and Disabled Persons: Research of Needs in Mitaka-City. Tokyo (JP): Tokyo Metropolitan Institute of Gerontology; 1997.
• 149. Jewell TC. Adult siblings of people with serious mental illness: The relationship between self -and -sibling -care beliefs and psychological adjustment. Ann Arbor (MI): ProQuest Dissertations Publishing; 1999. https://www.proquest.com/openview/c51d582b6137eff8b179d43940e364d3/1?pq-origsite=gscholar&cbl=18750&diss=y .
• 152. Schwarzer R, Jerusalem M. Generalized Self-Efficacy Scale. In: Weinman J, Wright S, Johnston M, editors. Measures in Health Psychology: A User’s Portfolio. Causal and Control Beliefs. Windsor (UK): NFER-NELSON; 1995. p. 35–37.
• 156. Brodman K. Tests of personality: questionnaires. B. Cornell Medical Index-Health Questionnaire. In Weider A, editor. Contributions Toward Medical Psychology, Theory and Psychodiagnostic Methods. New York (NY): Ronald Press; 1953. p. 568–576.
• 163. Department of Health and Ageing. The Australian Type 2 Diabetes Risk Assessment Tool [Internet]. Canaberra (AU): Australian Government Department of Health; 2010. https://www.health.gov.au/resources/apps-and-tools/the-australian-type-2-diabetes-risk-assessment-tool-ausdrisk .
• 165. Sandin B, Chorot P. Escala de Síntomas Somáticos Revisada (ESS-R) [Somatic Symptom Scale- Revised (ESS-R)]. Madrid (ES): Universidad Nacional de Educación a Distancia; 1995.
• 171. Angermeyer MC, Kilian R, Matschinger H. WHOQOL-100 und WHOQOL-BREF [WHOQOL-100 and WHOQOL-BREF]. Göttingen (DE): Hogrefe; 2000.
• 184. Nojima S. Chronicity and family/patient interaction in a Japanese schizophrenic patient population [Internet]. San Francisco (CA): Unpublished Doctor of Nursing Science Dissertation; 1989. https://www.proquest.com/openview/5cbba1f731346fe3b710c933b7617c22/1?pq-origsite=gscholar&cbl=18750&diss=y .
• 186. Schene AH, van Wijngaarden B. The involvement evaluation questionnaire. Amsterdam (NL): Department of Psychiatry, University of Amsterdam; 1992.
• 197. McCubbin M, McCubbin H. Resiliency in families: A conceptual model of family adjustment and adaptation in response to stress and crisis. In: McCubbin HI, Thompson AI, McCubbin MA, editors. Family Assessment: Resiliency, Coping and Adaptation (Inventories for Research and Practice). Madison (WI): University of Wisconsin; 1996. p. 1–64.
• 199. Lazarus RS, Folkman S. Stress, appraisal, and coping. New York (NY): Springer Publishing Company; 1984.

• Search Menu
• Sign in through your institution
• Advance Articles
• Special Issues
• Supplements
• Virtual Collection
• Online Only Articles
• International Spotlight
• Free Editor's Choice
• Free Feature Articles
• Author Guidelines
• Submission Site
• Calls for Papers
• Why Submit to the GSA Portfolio?
• Advertising and Corporate Services
• Advertising
• Reprints and ePrints
• Sponsored Supplements
• Journals Career Network
• About The Gerontologist
• About The Gerontological Society of America
• Editorial Board
• Self-Archiving Policy
• Dispatch Dates
• GSA Journals
• Journals on Oxford Academic
• Books on Oxford Academic

Article Contents

Conflict of interest, acknowledgments.

• < Previous

The Impact of Informal Caregiving for Older Adults on the Health of Various Types of Caregivers: A Systematic Review

• Article contents
• Figures & tables
• Supplementary Data

Judith Bom, Pieter Bakx, Frederik Schut, Eddy van Doorslaer, The Impact of Informal Caregiving for Older Adults on the Health of Various Types of Caregivers: A Systematic Review, The Gerontologist , Volume 59, Issue 5, October 2019, Pages e629–e642, https://doi.org/10.1093/geront/gny137

• Permissions Icon Permissions

Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.

A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.

The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.

The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.

Many individuals provide care for a spouse, family member, friend, or neighbor who needs help with running the household or personal care. Providing such care can, however, be very demanding, and might lead to physical strain, fatigue, or stress. Several studies have been carried out to assess whether informal care indeed is correlated with the health of the caregiver (e.g., Beach, Schulz, Yee, & Jackson, 2000 ; Schulz et al., 1997 ), which is confirmed by prior systematic literature reviews and meta-analyses reviewing these studies (e.g., Pinquart & Sörensen, 2003 , 2007 ; Vitaliano, Zhang, & Scanlan, 2003 ).

However, these reviews did not distinguish between studies that merely study the correlation between health and caregiving and those that estimate a causal effect. The crucial difference is that the former set of studies conflates differences in health state caused by caregiving tasks with differences caused by other factors. These factors, such as lifestyle and pre-existing health differences are largely unobserved and vary over time, and hence cannot be controlled for in multivariate regressions, even when panel data are available. Hence, these estimates are biased estimates of the true effect that caregiving has on health ( Little & Rubin, 2000 ).

Quasi-experimental methods offer a solution to this problem by carefully modeling the selection into the treatment and control group. Doing so, these methods allow for comparison between caregivers and noncaregivers and hence make sure that the change in caregiver health is caused by the provision of care and by nothing else ( Antonakis, Bendahan, Jacquart, & Lalive, 2014 ). A recent strand of the literature on the relationship between caregiving and health (e.g., Coe & Van Houtven, 2009 ) makes use of these methods to eliminate bias in the estimates of the caregiving effect caused by unobserved factors and thus allows for causal inference.

To our knowledge, we are the first to review this relatively new strand of literature. To provide an objective, transparent, and replicable overview of the literature, we carry out this review systematically following PRISMA guidelines ( Moher, Liberati, Tetzlaff, & Altman, 2009 ). Next to focusing on the causal impact of informal care, we will add to the literature by paying specific attention to subgroups of caregivers. The health impact of care might namely strongly differ by, for example, gender or the type of care provided ( Penning & Wu, 2016 ). We sought to address the following questions: What causal impact does providing informal care to elderly or older family member have on the health of the caregiver? And how does this caregiving effect differ between subgroups of caregivers?

Eligibility Criteria

We included studies based on the following eligibility criteria:

1. The article focuses on informal caregiving to elderly or older family members.

2. The article estimates the health impact of informal caregiving on the caregiver.

3. The article is aimed at finding a causal relation between informal caregiving and caregiver health using any one of the following methods: propensity score analysis, simultaneous equation models (instrumental variables), regression discontinuity designs, difference-in-difference models or Heckman selection models.

4. The article is written in English.

5. The article is not a conference abstract, letter, note, or editorial.

We defined informal care as providing care to a person in need and limited this definition to care to elderly persons or older family members. This focus excludes looking after (healthy) children or grandchildren, but does not impose any restriction on the age of the caregiver.

To specify our search to studies making causal estimations, we only include articles using quasi-experimental methods that enable causal estimations in nonexperimental settings. We limited our search to five methods for causal inference listed by Antonakis, Bendahan, Jacquart, and Lalive (2010 , 2014 ). Table 1 provides a short explanation of these methods. As especially health of individuals could already differ before starting providing care, we exclude studies making use of a matching design that does not match on health of the caregiver.

Quasi-Experimental Methods for Inferring Causality in Nonexperimental Settings

Note: Taken from Antonakis and colleagues (2010) , for further explanations regarding the summed methods we refer to the original article.

Search Strategy and Data Sources

Our search strategy, which is available as Supplementary Material , was set up with the help of an information specialist. For all criteria, we defined keywords as well as Medical Subject Headings (MeSH) and Embase Subject Headings (Emtree terms). Databases were searched for combinations of keywords and (if applicable) MeSH or Emtree-terms related to the eligibility criteria: informal caregiving, health impact, and older adults. Additionally, we limited our search to English language studies using one of the quasi-experimental methods to infer causality listed by Antonakis and colleagues (2010 , 2014 ), and excluded abstracts, letters, or editorials.

The following databases covering social sciences as well as bio-medical literature were searched from database inception through April 1, 2018: MEDLINE, Embase, Web of Science, and Scopus. We did not search the CENTRAL database, which covers studies using RCTs, as our research question cannot be answered by studies using this research design. All search results were stored in RefWorks, our main platform for keeping track of the literature review. We did not register a systematic review protocol.

We furthermore used Google Scholar to identify any additional articles. This search engine could help in retrieving articles that (a) have not been published yet, or (b) missed relevant search terms in their title and abstract. For this manual search, we used a search strategy similar to the search string used for the other databases. We hand-searched the first 150 Google Scholar hits. When articles were deemed eligible for review, they were added to the list of full-text review articles.

Review Procedure

Three reviewers screened the titles and abstracts of all articles based on predefined eligibility criteria. Before commencing the review, the criteria were discussed to guarantee shared understanding. The researchers screened the articles (two researchers per article) based on title and abstract. To avoid bias, authors and journal names were not visible during this screening stage. If the article adhered to all inclusion criteria, it was then selected for full-text review. In this second stage, all included articles were reviewed full-text by two researchers based on the inclusion and exclusion restrictions. For both stages, differences in screening results were discussed and resolved by dialogue, and if needed the third researcher would act as judge.

Data Abstraction

Data were extracted from the articles included in the review using a predefined extraction table. The following items were recorded from each article: the author(s) and year of publication; country/region of interest; care recipient; definition of informal care; sample characteristics of the caregiver; health outcome measure; estimation technique; and main findings of the study. As we do not aim to provide a meta-analysis of the results, the main study findings were recorded qualitatively based on presence and direction, not on effect size. The results were synthesized in a narrative review.

Quality Assessment

To assess the methodological quality of the studies meeting inclusion criteria, methodological information from the articles was extracted using a predefined extraction form designed to fit the methodologies used in the included articles. This form summarized the most important methodological elements of the articles. We did not calculate quality scores for the studies, but instead explained the methodological differences between the studies in narrative terms.

To assess the quality of studies using propensity score analysis, we followed recent progress in the causal inference literature ( Lechner 2009 ) and added a separate check. The quality of matching studies is dependent on the likelihood that the assumptions hold that (a) the propensity score is not affected by whether one is a caregiver (no reverse causality) and (b) there are no relevant remaining unobserved differences after matching (see Rosenbaum and Rubin (1983) for an overview of all assumptions). The matching approach proposed by Lechner (2009) makes it credible that these assumptions hold, as it suggests to match individuals on pretreatment covariates instead of current covariates and to stratify the sample according to care provision in the previous year. The latter suggestion means that individuals who recently started caregiving (and did not do so last year), are only compared with individuals that did not provide care last year either. Doing so, potential influence of the treatment status on the covariates is avoided, and pretreatment differences in health are controlled for. For the studies making use of matching techniques, we evaluated whether this approach is followed.

The quality of the instrumental variables is assessed based on instrument strength. For studies included in this review, it means that the effect of the instrumental variable, for example, a health shock of a parent, has a sufficiently strong effect on informal care provision. This strength of the instrumental variable can be assessed based on the F -statistic of excluded instruments. We follow the most commonly used rule of thumb that the F -statistic showing the strength of the instrument should be greater than 10 ( Staiger & Stock, 1997 ).

Finally, we assess for all studies whether they accounted for the family effect. This effect refers to the impact of caring about an ill family member and is different from the caregiving effect related to the impact of caring for someone ( Amirkhanyan & Wolf, 2006 ; Bobinac, van Exel, Rutten, & Brouwer, 2010 ). Recent literature highlights the importance of considering this effect, as not accounting for it leads to an overestimation of the caregiving effect ( Roth, Fredman, & Haley, 2015 ).

Search Results

Our searches yielded 1,326 articles in total. After eliminating duplicates, our search findings totaled 661 articles. The hand-search resulted in five additional articles. From these 666 articles, 613 were excluded for a variety of reasons. Often the studies did not focus on informal caregiving but on another type of care. Furthermore, various studies were excluded as they did not estimate the impact of caregiving, but reviewed the efficacy of a specific intervention to improve the health of caregivers. Eventually, 53 articles were selected for full-text review. From these 53 articles, 38 were excluded in the full-text review round. The most prominent reason for exclusion at this stage was that a study did not use any of the defined methods to identify a causal effect. Eventually, 15 articles met all inclusion criteria and were included in this systematic literature review. Figure 1 depicts the flowchart of screening phases.

Flowchart of screening phases.

All articles were published recently, the oldest dating from 2009 ( Coe & Van Houtven, 2009 ), the most recent one published in 2017 ( de Zwart, Bakx, & van Doorslaer, 2017 ). The articles were published in a variety of journals, mostly relating to gerontology or health economics. The articles cover various countries of interest, using European data ( n = 6); Asian data ( n = 4); U.S. data ( n = 4), or Australian data ( n = 1). An extensive overview of all articles is provided in Table 2 .

Characteristics and Results of Reviewed Studies

Note: PSM = propensity score matching; 2SLS = two-stage least square; D-in-D = difference-in-difference; IV = instrumental variable; MCS and PCS = Mental Component Scale and Physical Component Scale.

Methodological Quality of Studies Included in the Review

Table 3 presents an extensive overview of the methods per study meeting the inclusion criteria. Three of the 15 studies use simultaneous equation models to estimate the causal impact of providing care. The instrumental variables used in these studies are roughly similar, including indicators of either the health ( Do et al., 2015 ) or the widowhood of the parent ( Coe & Van Houtven, 2009 ; Heger, 2017 ). The F -statistics show that the instrumental variables applied in the main analyses of these studies all have sufficient strength.

Methodology of Reviewed Studies

Note: SHARE = Survey of Health, Ageing and Retirement Europe; HRS = Health & Retirement Study; HEPESE = Hispanic Established Populations for the Epidemiologic Study of the Elderly; HILDA = Household, Income & Labour Dynamics in Australia Survey; GSOEP = German Socio-Economic Panel; BRFSS = Behavioral Risk Factor Surveillance System; PSM = propensity score matching; 2SLS = two-stage least square; D-in-D = difference-in-difference; IV = instrumental variable.

Most articles ( n = 12) use a matching design to compare caregivers and noncaregivers. As mentioned in Method section, we only included studies that matched respondents on the health of the caregiver to avoid omitted variable bias. Six ( Brenna & Di Novi, 2016 ; Di Novi et al., 2015 ; Kenny et al., 2014 ; Schmitz & Westphal, 2015 ; Stroka, 2014 ; de Zwart et al., 2017 ) of the 12 matching studies follow the approach of Lechner (2009) by matching on precaregiving variables and only comparing caregivers with noncaregivers who both did not provide care last year.

Only two of the studies under review ( Do et al., 2015 ; Heger, 2017 ) specifically accounted for the family effect. Do and colleagues (2015) argued to avoid picking up the family effect by focusing on (a) physical health effects and (b) females who provide care to their parents-in-law. As the family effect relates to worrying about an ill family member, the authors assumed that these worries do not affect the physical health of the caregiver. They furthermore assumed that this family effect is absent or at least smaller if one’s parent-in-law falls ill rather than one’s own parent. Heger (2017) aimed to disentangle the family effect from the caregiving effect and estimated the family effect by including a variable representing “poor health of a parent” and the caregiving effect by including a variable representing “informal caregiving” in the model. None of the other studies accounted for the family effect, thereby potentially overestimating the effect of caregiving on health.

Comparability of Studies

The studies that we review use different methods, which complicates comparing effect sizes across studies because, even if estimated on the same study sample, the methods would yield estimates of the effect that are valid for other subgroups of the study samples. With a matching design, caregivers are matched to similar individuals who do not provide care. These studies hence estimated the average treatment effect on treated (ATET): the health impact of informal care for the current informal caregivers. When using instrumental variables in simultaneous equation models, the local average treatment effect (LATE) is estimated. This represents the health impact of caregiving for those who started caregiving in response to the instrument, that is, illness or widowhood of a parent.

Hence, there are two potential methodological reasons for any observed differences in effect size between studies included in this review. First, effect sizes could differ as the ATET measures the impact of any form of caregiving while the LATE measures the impact of caregiving in response to severe illness or decease. Second, some studies do not account for the family effect, which leads to different estimates.

The various definitions of informal caregiving and the variety of outcome measures further complicate comparison of the findings of these studies. The definition of informal caregiving differs per study from providing care to a parent ( n = 5) or spouse ( n = 1), caring for anyone/a family member or friend ( n = 5), and informal care for someone with a specific illness (e.g., dementia; n = 2). Lastly, two studies ( Fukahori et al., 2015 ; Hong et al., 2016 ) proxy for informal caregiving by defining caregivers as persons living together with a family member or spouse in need. Although these studies aimed to estimate the impact of informal care, and as such adhere to the inclusion criteria, these rough measures of informal care might lead to underestimations of the caregiving effect because many noncaregivers may be misclassified as caregivers.

In addition, various health measures were used to estimate the impact on health. Studies focus on the mental health impact ( n = 3), the physical health impact ( n = 4), or both ( n = 8). These health states are measured via either validated health measures, drug prescription data, or information on health care usage. The studies also differ in their specification of caregiving, for example, by restricting the sample to respondents who provide more than 2 hr of informal care per day.

Synthesis of Results

The studies included in the review provide a fairly coherent picture. All studies find a short-term negative effect for certain subgroups of caregivers, except for the study by Fukahori and colleagues (2015) . An explanation for this latter finding could be the very rough proxy of informal care used in this study: household members were assumed to provide informal care when someone in the household needs care.

While all but one of the studies found a negative effect on the short term, there are interesting differences in the effect sizes between and within the studies. The studies estimating mental health effects all found that caregiving might result in higher prevalence of depressive feelings and lowered mental health scores. Estimates of the physical health impact of informal care were less stable and differed in sign. Many studies found negative physical health effects of caregiving ( Coe & Van Houtven, 2009 ; Do et al., 2015 ; Goren et al., 2016 ; Hong et al., 2016 ; Stroka, 2014 ; Trivedi et al., 2014 ; de Zwart et al., 2017 ). These effects relate to a wide variety of physical health outcomes such as increased drug intake ( Stroka, 2014 ; de Zwart et al., 2017 ) and pain affecting daily activities ( Do et al., 2015 ). In contrast to these negative effects, Di Novi and colleagues (2015) , Trivedi and colleagues (2014) , and Coe and Van Houtven (2009) found positive effects of informal caregiving on physical health for some specific subgroups. How physical health is measured appears to be crucial: when measured by self-assessed health, the short-run impact of caregiving is positive, whereas negative health effects are found when outcomes are measured by intake of drugs and reported pain. Di Novi and colleagues (2015) claimed that the positive impact of informal care on self-assessed health could be the result of a bias related to reference points. They argued that spending time with a person who is in poor health could lead to an increase in self-assessed health because people may take the poor health of the care recipient as a reference point, even though the objective health level of the caregiver could have decreased.

Next to differences with regards to the health outcomes studied, large heterogeneity exists with regard to the subgroup of caregivers for whom the effects are applicable. Many studies only estimated caregiving effects for females as they assumed that mostly women provide or are affected by informal care ( Brenna & Di Novi, 2016 ; Di Novi et al., 2015 ; Do et al., 2015 ; Rosso et al., 2015 ; Schmitz & Westphal, 2015 ). Studies that did separately estimate health effects for males and females often found that health effects are larger or solely present for females ( Heger, 2017 ; Stroka, 2014 ; de Zwart et al., 2017 ). Marital status also seemed to be of effect according to the study of Coe and Van Houtven (2009) , which in most cases solely found health effects of informal care for married individuals.

The intensity of provided care appears to be another source of heterogeneity in the health effects of caregiving. Various studies compared average or moderate caregivers with intensive caregivers based on the hours of care provision. These studies ( Brenna & Di Novi, 2016 ; Heger, 2017 ; Stroka, 2014 ) found larger health effects when more intensive care is provided.

A clear conclusion regarding the longer-term effects of informal caregiving cannot yet be drawn. As all studies used survey data, many were unable to estimate longer-term caregiving effects. Only five studies estimated effects over a longer period ( Coe & Van Houtven, 2009 ; Kenny et al., 2014 ; Rosso et al., 2015 ; Schmitz & Westphal 2015 ; de Zwart et al., 2017 ). Both Schmitz and Westphal (2015) and de Zwart and colleagues (2017) did not find any longer-term effects of informal caregiving on health. Schmitz and Westphal concluded that there might not be large scarring effects of care provision; de Zwart and colleagues mentioned that selective attrition may have biased their results. The other three studies estimating longer-term effects found mixed results, showing both positive and negative effects of informal care. Kenny and colleagues (2014) found negative health effects 2 years after the start of caregiving for working female caregivers and positive effects for nonworking caregiving males. Rosso and colleagues (2015) grouped all persons who provide informal care at baseline and found that after 6 years low-frequency caregivers have greater grip strength (representing physical health) than noncaregivers. The authors, however, control for various health measures but not for baseline grip-strength and mention that the effect might be explained by existing precaregiving differences. The study by Coe and Van Houtven (2009) is the only one that compared persons who stopped providing care to persons who continued caregiving for two more years. They found negative mental health effects for females and negative physical health effects for males who continue caregiving.

The aim of this systematic literature review was to understand the causal impact of providing informal care to an elderly person or older family members on the health of the caregiver. Prior reviews concluded that there is a correlation between informal caregiving and health (e.g., Pinquart & Sörensen, 2003 , 2007 ; Vitaliano et al., 2003 ); the studies included in this review indicate that there is a causal negative effect of caregiving on health. This caregiving effect can manifest itself both in mental and physical health effects. Interestingly, the presence and intensity of these health effects differ strongly per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to experience negative health effects of caregiving. These groups might have several other responsibilities on top of caregiving duties, thereby being more strongly affected by the caregiving tasks.

Our findings highlight the need for caregiving interventions and stress the importance of differentiating interventions by a subgroup of caregivers. There are mainly two kinds of potential strategies: (a) improving the coping skills of the caregiver or (b) reducing the amount of care to be provided by informal caregivers ( Sörensen, Pinquart, & Duberstein, 2002 ). Examples of (a) include support groups that might help caregivers who experience stress and insecurity ( Sörensen et al., 2002 ). Examples of (b) include interventions like subsidized professional home care and assistive technology that could relieve caregivers from some of their tasks (e.g., Marasinghe, 2015 ; Mortenson et al., 2012 ).

Although our study provides interesting insights into the differential impact of informal care on various subgroups of caregivers, additional research regarding this topic is needed. Understanding why some groups are more affected by informal caregiving than others may help policymakers in facilitating the best support for informal caregivers. Furthermore, given that most empirical studies solely estimated short-term effects, research is needed about the long-term effects of providing informal care to determine whether caregiving has scarring effects.

Facing a broad research question, we aimed to establish a proper balance between precision and sensitivity of our search strategy. To do so, we included the care recipient and the used research design as elements into our search strategy. As a result, we face the risk of excluding studies that did not specifically report the recipients of informal care or the used study design. Furthermore, it is important to note that by focusing on informal care to elderly or older family members, we excluded for example studies looking at provision of care for disabled children. As caregiving stress might differ for such subgroups of caregiving, we cannot generalize our results to the entire population of caregivers.

Our review highlights the importance of accounting for the family effect, that is, the impact of being worried about someone irrespective of providing care, when estimating the caregiving effect on the health of the caregiver. Only two of the studies under review accounted for this effect. Since the family effect might bias the estimates of the caregiving effect on health, disentangling both effects seems an important focus-point for future research.

For now, we conclude that there is evidence of negative health effects of informal caregiving for subgroups of caregivers, which stresses the need for targeted interventions aimed at reducing this negative impact. Investing in support for informal caregivers by offering relieve from caregiving tasks or by organizing support groups might reduce the negative consequences of informal caregiving. As the strength and presence of the caregiving effect strongly differ between subgroups of caregivers, policymakers should aim to target subgroups of caregivers that experience the largest impact of informal caregiving.

This study has been carried out with financial support from the Network for Studies on Pensions, Aging and Retirement. Grant name: Optimal saving and insurance for old age: The role of public-long term care insurance.

None reported.

The authors thank Sara Rellstab for her contributions to the review process and Wichor Bramer for his help with drafting the search query.

Amirkhanyan , A. A. , & Wolf , D. A . ( 2006 ). Parent care and the stress process: Findings from panel data . Journal of Gerontology, Series B: Psychological Sciences and Social Sciences , 61 , S248 – S255 . doi:10.1093/geronb/61.5.s248

Google Scholar

Antonakis , J. , Bendahan , S. , Jacquart , P. , & Lalive , R . ( 2010 ). On making causal claims: A review and recommendations . The Leadership Quarterly , 21 , 1086 – 1120 . doi: 10.1016/j.leaqua.2010.10.010

Antonakis , J. , Bendahan , S. , Jacquart , P. , & Lalive , R . ( 2014 ). Causality and endogeneity: Problems and solutions . In D.V. Day (Ed.), The Oxford Handbook of Leadership and Organizations (pp. 93 – 117 ). Oxford : Oxford University Press . doi: 10.1017/CBO9781107415324.004

Google Preview

Beach , S. R. , Schulz , R. , Yee , J. L. , & Jackson , S . ( 2000 ). Negative and positive health effects of caring for a disabled spouse: Longitudinal findings from the caregiver health effects study . Psychology and Aging , 15 , 259 – 271 . doi: 10.1037//0882-7974.15.2.259

Bobinac , A. , van Exel , N. J. , Rutten , F. F. , & Brouwer , W. B . ( 2010 ). Caring for and caring about: Disentangling the caregiver effect and the family effect . Journal of Health Economics , 29 , 549 – 556 . doi: 10.1016/j.jhealeco.2010.05.003

Brenna , E. , & Di Novi C . ( 2016 ). Is caring for older parents detrimental to women’s mental health? The role of the European North-South gradient . Review of Economics of the Household , 14 , 745 – 778 . doi: 10.1007/s11150-015-9296-7

Coe , N. B. , & Van Houtven , C. H . ( 2009 ). Caring for mom and neglecting yourself? The health effects of caring for an elderly parent . Health Economics , 18 , 991 – 1010 . doi: 10.1002/hec.1512

Di Novi , C. , Jacobs , R. , & Migheli , M . ( 2015 ). The quality of life of female informal caregivers: From Scandinavia to the Mediterranean Sea . European Journal of Population , 31 , 309 – 333 . doi: 10.1007/s10680-014-9336-7

Do , Y. K. , Norton , E. C. , Stearns , S. C. , & Van Houtven , C. H . ( 2015 ). Informal care and caregiver’s health . Health Economics , 24 , 224 – 237 . doi: 10.1002/hec.3012

Fukahori , R. , Sakai , T. , & Sato , K . ( 2015 ). The effects of incidence of care needs in households on employment, subjective health, and life satisfaction among middle-aged family members . Scottish Journal of Political Economy , 62 , 518 – 545 . doi: 10.1111/sjpe.12085

Goren , A. , Montgomery , W. , Kahle-Wrobleski , K. , Nakamura , T. , & Ueda , K . ( 2016 ). Impact of caring for persons with Alzheimer’s disease or dementia on caregivers’ health outcomes: Findings from a community based survey in Japan . BMC Geriatrics , 16 , 122 . doi: 10.1186/s12877-016-0298-y

Heger , D . ( 2017 ). The mental health of children providing care to their elderly parent . Health Economics , 26 , 1617 – 1629 . doi: 10.1002/hec.3457

Hernandez , A. M. , & Bigatti , S. M . ( 2010 ). Depression among older Mexican American caregivers . Cultural Diversity & Ethnic Minority Psychology , 16 , 50 – 58 . doi: 10.1037/a0015867

Hong , I. , Han , A. , Reistetter , T. A. , & Simpson , A. N . ( 2016 ). The risk of stroke in spouses of people living with dementia in Korea . International Journal of Stroke , 12 , 851 – 857 . doi: 10.1177/1747493016677987

Kenny , P. , King , M. T. , & Hall , J . ( 2014 ). The physical functioning and mental health of informal carers: Evidence of care-giving impacts from an Australian population-based cohort . Health & Social Care in the Community , 22 , 646 – 659 . doi: 10.1111/hsc.12136

Lechner , M . ( 2009 ). Long-run labour market and health effects of individual sports activities . Journal of Health Economics , 28 , 839 – 854 . doi: 10.1016/j.jhealeco.2009.05.003

Little , R. J. , & Rubin , D. B . ( 2000 ). Causal effects in clinical and epidemiological studies via potential outcomes: Concepts and analytical approaches . Annual Review of Public Health , 21 , 121 – 145 . doi: 10.1146/annurev.publhealth.21.1.121

Marasinghe , K. M . ( 2015 ). Assistive technologies in reducing caregiver burden among informal caregivers of older adults: A systematic review . Disability and Rehabilitation: Assistive Technology , 11 , 353 – 360 . doi: 10.3109/17483107.2015.1087061

Moher , D. , Liberati , A. , Tetzlaff , J. , & Altman , D. G .; PRISMA Group . ( 2009 ). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement . PLoS Medicine , 6 , e1000097 . doi: 10.1371/journal.pmed.1000097

Mortenson , W. B. , Demers , L. , Fuhrer , M. J. , Jutai , J. W. , Lenker , J. , & DeRuyter , F . ( 2012 ). How assistive technology use by individuals with disabilities impacts their caregivers: A systematic review of the research evidence . American Journal of Physical Medicine & Rehabilitation , 91 , 984 – 998 . doi: 10.1097/PHM.0b013e318269eceb

Penning , M. J. , & Wu , Z . ( 2016 ). Caregiver stress and mental health: Impact of caregiving relationship and gender . The Gerontologist , 56 , 1102 – 1113 . doi: 10.1093/geront/gnv038

Pinquart , M. , & Sörensen , S . ( 2003 ). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis . Psychology and Aging , 18 , 250 – 267 . doi: 10.1037/0882-7974.18.2.250

Pinquart , M. , & Sörensen , S . ( 2007 ). Correlates of physical health of informal caregivers: A meta-analysis . Journal of Gerontology, Series B: Psychological Sciences and Social Sciences , 62 , P126 – P137 . doi:10.1093/geronb/62.2.p126

Rosenbaum, P., & Rubin, D. (1983). The central role of the propensity score in observational studies for causal effects. Biometrika, 70, 41–55. doi:10.2307/2335942

Rosso , A. L. , Lee , B. K. , Stefanick , M. L. , Kroenke , C. H. , Coker , L. H. , Woods , N. F. , & Michael , Y. L . ( 2015 ). Caregiving frequency and physical function: The Women’s Health Initiative . Journal of Gerontology, Series A: Biological Sciences and Medical Sciences , 70 , 210 – 215 . doi: 10.1093/gerona/glu104

Roth , D. L. , Fredman , L. , & Haley , W. E . ( 2015 ). Informal caregiving and its impact on health: A reappraisal from population-based studies . The Gerontologist , 55 , 309 – 319 . doi: 10.1093/geront/gnu177

Schmitz , H. , & Westphal , M . ( 2015 ). Short- and medium-term effects of informal care provision on female caregivers’ health . Journal of Health Economics , 42 , 174 – 185 . doi: 10.1016/j.jhealeco.2015.03.002

Schulz , R. , Newsom , J. , Mittelmark , M. , Burton , L. , Hirsch , C. , & Jackson , S . ( 1997 ). Health effects of caregiving: The caregiver health effects study: An ancillary study of the Cardiovascular Health Study . Annals of Behavioral Medicine , 19 , 110 – 116 . doi: 10.1007/BF02883327

Sörensen , S. , Pinquart , M. , & Duberstein , P . ( 2002 ). How effective are interventions with caregivers? An updated meta-analysis . The Gerontologist , 42 , 356 – 372 . doi.org/10.1093/geront/42.3.356

Staiger , D. , & Stock , J. H . ( 1997 ). Instrumental variables regression with weak instruments . Econometrica , 65 , 557 – 586 . doi: 10.2307/2171753

Stroka , M. A . ( 2014 ). The mental and physical burden of caregiving evidence from administrative data . Ruhr Economic Papers , 474, 1–27. Retrieved from https://www.econstor.eu/bitstream/10419/93178/1/780314565.pdf

Trivedi , R. , Beaver , K. , Bouldin , E. D. , Eugenio , E. , Zeliadt , S. B. , Nelson , K. , … Piette , J. D . ( 2014 ). Characteristics and well-being of informal caregivers: Results from a nationally-representative US survey . Chronic Illness , 10 , 167 – 179 . doi: 10.1177/1742395313506947

Vitaliano , P. P. , Zhang , J. , & Scanlan , J. M . ( 2003 ). Is caregiving hazardous to one’s physical health? A meta-analysis . Psychological Bulletin , 129 , 946 – 972 . doi: 10.1037/0033-2909.129.6.946

de Zwart , P. L. , Bakx , P. , & van Doorslaer , E. K. A . ( 2017 ). Will you still need me, will you still feed me when I’m 64? The health impact of caregiving to one’s spouse . Health Economics , 26 ( Suppl. 2 ), 127 – 138 . doi: 10.1002/hec.3542

• mental health
• physical health
• older adult

Supplementary data

Email alerts

Citing articles via, looking for your next opportunity.

• Recommend to Your Librarian

Affiliations

• Online ISSN 1758-5341
• Copyright © 2024 The Gerontological Society of America
• About Oxford Academic
• Publish journals with us
• University press partners
• What we publish
• New features  
• Open access
• Institutional account management
• Rights and permissions
• Get help with access
• Accessibility
• Media enquiries
• Oxford University Press
• Oxford Languages
• University of Oxford

Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide

• Copyright © 2024 Oxford University Press
• Cookie settings
• Cookie policy
• Privacy policy
• Legal notice

This Feature Is Available To Subscribers Only

Sign In or Create an Account

This PDF is available to Subscribers Only

For full access to this pdf, sign in to an existing account, or purchase an annual subscription.

Information

• Author Services

Initiatives

You are accessing a machine-readable page. In order to be human-readable, please install an RSS reader.

All articles published by MDPI are made immediately available worldwide under an open access license. No special permission is required to reuse all or part of the article published by MDPI, including figures and tables. For articles published under an open access Creative Common CC BY license, any part of the article may be reused without permission provided that the original article is clearly cited. For more information, please refer to https://www.mdpi.com/openaccess .

Feature papers represent the most advanced research with significant potential for high impact in the field. A Feature Paper should be a substantial original Article that involves several techniques or approaches, provides an outlook for future research directions and describes possible research applications.

Feature papers are submitted upon individual invitation or recommendation by the scientific editors and must receive positive feedback from the reviewers.

Editor’s Choice articles are based on recommendations by the scientific editors of MDPI journals from around the world. Editors select a small number of articles recently published in the journal that they believe will be particularly interesting to readers, or important in the respective research area. The aim is to provide a snapshot of some of the most exciting work published in the various research areas of the journal.

Original Submission Date Received: .

• Active Journals
• Find a Journal
• Proceedings Series
• For Authors
• For Reviewers
• For Editors
• For Librarians
• For Publishers
• For Societies
• For Conference Organizers
• Open Access Policy
• Institutional Open Access Program
• Special Issues Guidelines
• Editorial Process
• Research and Publication Ethics
• Article Processing Charges
• Testimonials
• Preprints.org
• SciProfiles
• Encyclopedia

Article Menu

• Subscribe SciFeed
• PubMed/Medline
• Google Scholar
• on Google Scholar
• Table of Contents

Find support for a specific problem in the support section of our website.

Please let us know what you think of our products and services.

Visit our dedicated information section to learn more about MDPI.

JSmol Viewer

Exploring factors influencing caregiver burden: a systematic review of family caregivers of older adults with chronic illness in local communities.

1. Introduction

Purpose of the present study, 2.1. research design, 2.2. data sources, 2.3. inclusion and exclusion criteria, 2.4. selection process and data extraction, 3.1. selected documents, 3.2. general characteristics of selected studies, 3.3. key elements identified through selected studies, 3.3.1. family caregiver burden assessment tool, 3.3.2. care recipient variables affecting caregiving burden, 3.3.3. caregiver variables that affect caregiving burden, 4. discussion, 4.1. limitations, 4.2. implications for practice and suggestions for future research, 5. conclusions, author contributions, institutional review board statement, informed consent statement, data availability statement, conflicts of interest.

• World Health Organization. World Report on Ageing and Health ; World Health Organization: Geneva, Switzerland, 2015; Available online: https://iris.who.int/bitstream/handle/10665/186463/9789240694811_eng.pdf?sequence=1 (accessed on 26 April 2023).
• Korean Statistical Information Service. 2023 Elderly Statistics. Available online: https://kostat.go.kr/board.es?mid=a10301010000&bid=10820&list_no=427252&act=view&mainXml=Y (accessed on 26 September 2023).
• Rechel, B.; Grundy, E.; Robine, J.M. Ageing in the European Union. Lancet 2013 , 381 , 1312–1322. [ Google Scholar ] [ CrossRef ]
• Korea Disease Control and Prevention Agency. Current Status and Issues of Chronic Disease in 2023. Available online: https://www.kdca.go.kr/filepath/galleryDownload.es?bid=0003&list_no=146387&seq=1 (accessed on 26 December 2023).
• Kadambi, S.; Abdallah, M.; Loh, K.P. Multimorbidity, Function, and Cognition in Aging. Clin. Geriatr. Med. 2020 , 36 , 569–584. [ Google Scholar ] [ CrossRef ]
• Zhong, Y.; Wang, J.; Nicholas, S. Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: The mediating role of caregiver burden. BMC Geriatr. 2020 , 20 , 3. [ Google Scholar ] [ CrossRef ]
• Ornstein, K.; Gaugler, J.E. The problem with “problem behaviors”: A systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient-caregiver dyad. Int. Psychogeriatr. 2012 , 24 , 1536–1552. [ Google Scholar ] [ CrossRef ]
• Cascella Carbó, G.F.; García-Orellán, R. Burden and Gender inequalities around Informal Care. Investig. Educ. Enferm. 2020 , 38 , e05. [ Google Scholar ] [ CrossRef ]
• Kavga, A.; Kalemikerakis, I.; Faros, A. The Effects of Patients’ and Caregivers’ Characteristics on the Burden of Families Caring for Stroke Survivors. Int. J. Environ. Res. Public Health. 2021 , 18 , 7298. [ Google Scholar ] [ CrossRef ]
• Jone, M. Effects of the Characteristics of the Elderly and Family Caregivers on the Caregiving Stresses. Korea Contents Assoc. 2014 , 14 , 274–282. [ Google Scholar ]
• Yu, S.Y. Analysis of Research Trends about Burden of Caring for Senile Dementia Patients in Korea. Health Welf. 2018 , 20 , 29–54. [ Google Scholar ]
• Zhang, S.; Xu, M.; Liu, Z.J.; Feng, J.; Ma, Y. Neuropsychiatric issues after stroke: Clinical significance and therapeutic implications. World J. Psychiatry 2020 , 10 , 125–138. [ Google Scholar ] [ CrossRef ]
• Mlenzana, N.B.; Frantz, J.M.; Rhoda, A.J.; Eide, A.H. Barriers to and facilitators of rehabilitation services for people with physical disabilities: A systematic review. Afr. J. Disabil. 2013 , 2 , a22. [ Google Scholar ] [ CrossRef ]
• Ko, Y.; Yu, S. Core nursing competency assessment tool for graduates of outcome-based nursing education in South Korea: A validation study. Jpn. J. Nurs. Sci. 2019 , 16 , 155–171. [ Google Scholar ] [ CrossRef ]
• Lu, N.; Liu, J.; Lou, V.W. Caring for frail elders with musculoskeletal conditions and family caregivers’ subjective well-being: The role of multidimensional caregiver burden. Arch. Gerontol. Geriatr. 2015 , 61 , 411–418. [ Google Scholar ] [ CrossRef ]
• Kristianingrum, N.D.; Ramadhani, D.A.; Hayati, Y.S.; Setyoadi, S. Correlation between the burden of family caregivers and health status of people with diabetes mellitus. J. Public Health Res. 2021 , 10 , 2227. [ Google Scholar ] [ CrossRef ]
• Rodríguez-González, A.M.; Rodríguez-Míguez, E.; Claveria, A. Determinants of caregiving burden among informal caregivers of adult care recipients with chronic illness. J. Clin. Nurs. 2021 , 30 , 1335–1346. [ Google Scholar ] [ CrossRef ]
• Faison, K.J.; Faria, S.H.; Frank, D. Caregivers of chronically ill elderly: Perceived burden. J. Community Health Nurs. 1999 , 16 , 243–253. [ Google Scholar ] [ CrossRef ]
• Schandl, A.; Ringborg, C.; Mälberg, K.; Johar, A.; Lagergren, P. Caregiver burden and health-related quality of life among family caregivers of oesophageal cancer patients: A prospective nationwide cohort study. Acta Oncol. 2022 , 61 , 1186–1191. [ Google Scholar ] [ CrossRef ]
• Schwartz, K.; Beebe-Dimmer, J.; Hastert, T.A.; Ruterbusch, J.J.; Mantey, J.; Harper, F.; Thompson, H.; Pandolfi, S.; Schwartz, A.G. Caregiving burden among informal caregivers of African American cancer survivors. J. Cancer Surviv. 2021 , 15 , 630–640. [ Google Scholar ] [ CrossRef ]
• Hooley, P.J.; Butler, G.; Howlett, J.G. The relationship of quality of life, depression, and caregiver burden in outpatients with congestive heart failure. Congest. Heart Fail. 2005 , 11 , 303–310. [ Google Scholar ] [ CrossRef ]
• Unnikrishnan, B.; Rathi, P.; Saxena, P.U.P.; Aggarwal, A.; Shekhar, S.; Bansal, S.; Naidu, B.V.; Menon, S. Psychosocial burden among informal caregivers of adult cancer patients attending a tertiary care cancer center in coastal south India. Sage Open 2019 , 9 , 2158244019876287. [ Google Scholar ] [ CrossRef ]
• Iecovich, E. Caregiving burden, community services, and quality of life of primary caregivers of frail elderly persons. J. Appl. Gerontol. 2008 , 27 , 309–330. [ Google Scholar ] [ CrossRef ]
• Alshammari, S.A.; Alzahrani, A.A.; Alabduljabbar, K.A.; Aldaghri, A.; Alhusainy, Y.; Khan, M.; Alshuwaier, R.; Kariz, I.N. The burden perceived by informal caregivers of the elderly in Saudi Arabia. J. Fam. Community Med. 2017 , 24 , 145–150. [ Google Scholar ] [ CrossRef ]
• Brinda, E.M.; Rajkumar, A.P.; Enemark, U.; Attermann, J.; Jacob, K.S. Cost and burden of informal caregiving of dependent older people in a rural Indian community. BMC Health Serv. Res. 2014 , 14 , 207. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Chan, E.Y.; Glass, G.; Chua, K.C.; Ali, N.; Lim, W.S. Relationship between Mastery and Caregiving Competence in Protecting against Burden, Anxiety and Depression among Caregivers of Frail Older Adults. J. Nutr. Health Aging 2018 , 22 , 1238–1245. [ Google Scholar ] [ CrossRef ]
• Chen, M.C.; Chen, K.M.; Chu, T.P. Caregiver burden, health status, and learned resourcefulness of older caregivers. West. J. Nurs. Res. 2015 , 37 , 767–780. [ Google Scholar ] [ CrossRef ]
• Choi, J.Y.; Sok, S.R. Relationships among family support, health status, burnout, and the burden of the family caregiver caring for Korean older adults. J. Hosp. Palliat. Nurs. 2012 , 14 , E1–E8. [ Google Scholar ] [ CrossRef ]
• Freeman, S.; Kurosawa, H.; Ebihara, S.; Kohzuki, M. Caregiving burden for the oldest old: A population based study of centenarian caregivers in Northern Japan. Arch. Gerontol. Geriatr. 2010 , 50 , 282–291. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Limpawattana, P.; Theeranut, A.; Chindaprasirt, J.; Sawanyawisuth, K.; Pimporm, J. Caregivers burden of older adults with chronic illnesses in the community: A cross-sectional study. J. Community Health 2013 , 38 , 40–45. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Ong, H.L.; Vaingankar, J.A.; Abdin, E.; Sambasivam, R.; Fauziana, R.; Tan, M.-E.; Chong, S.A.; Goveas, R.R.; Chiam, P.C.; Subramaniam, M. Resilience and burden in caregivers of older adults: Moderating and mediating effects of perceived social support. BMC Psychiatry 2018 , 18 , 27. [ Google Scholar ] [ CrossRef ]
• Sabzwari, S.; Badini, A.M.; Fatmi, Z.; Jamali, T.; Shah, S. Burden and associated factors for caregivers of the elderly in a developing country. East. Mediterr. Health J. 2016 , 22 , 394–403. [ Google Scholar ] [ CrossRef ]
• Zarit, S.H.; Reever, K.E.; Bach-Peterson, J. Zarit Burden Interview. Gerontologist 1980 , 41 , 652–657. [ Google Scholar ]
• Kwon, J.D. The Determinant Model of Caregiver Burden In Caring for the Demented Elderly in Korea. Health Soc. Welf. Rev. 1994 , 14 , 1–16. [ Google Scholar ]
• Kim, M.J. Associated Factors Caused by Falls of Older People in Community-Dwelling. Unpublished Master’s Dissertation, Ewha Womans University, Seoul, Republic of Korea, 2004. [ Google Scholar ]
• Ma, B.S. A Study on the People in Charge of the Demented: Especially People in the Day Care Center or Short Stay Service. Unpublished Master’s Thesis, Ewha Womans University, Seoul, Republic of Korea, 1998. [ Google Scholar ]
• Rhee, K.O. A study on caregiving burden among family caregivers of impaired elderly. J. Korean Gerontol. Soc. 2000 , 20 , 215–228. [ Google Scholar ]
• Yoon, H.S.; Ryu, S.H. Factors Associated with Family Caregivers’ Burden of Frail Elders-Comparing Spouse with Adult Children. Korean Gerontol. Soc. 2007 , 27 , 195–211. [ Google Scholar ]
• Kim, H.M. A Study on the Burden of the People Supporting the Dementia Elderly-Since Operation of the Dementia Elderly Daycare Centers. Unpublished Master’s Thesis, MYONGJI University, Seoul, Republic of Korea, 2005. [ Google Scholar ]
• Hong, D.I. A study on the Caregiving Burden of Elderly Primary Caregivers Using Day Shelters. Unpublished Master’s Thesis, Pyeongtaek University, Pyeongtaek, Republic of Korea, 2002. [ Google Scholar ]
• Yoon, H.S. Who Care for the Elderly? Family Responsibility vs. Social Responsibility. Korean J. Fam. Law 2000 , 14 , 201–226. [ Google Scholar ]
• Cohen, S.; Doyle, W.J.; Skoner, D.P.; Rabin, B.S.; Gwaltney, J.M., Jr. Social ties and susceptibility to the common cold. JAMA 1997 , 277 , 1940–1944. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Williamson, G.M.; Schulz, R. Coping with specific stressors in Alzheimer’s disease caregiving. Gerontologist 1993 , 33 , 747–755. [ Google Scholar ] [ CrossRef ] [ PubMed ]
• Kim, Y.A. Discussion on “How to Institutionalize the Training and Education of Care Managers and Care Workers in the Elderly Care Insurance System” ; Korean Academy of Care Work: Seoul, Republic of Korea, 2006; pp. 156–162. [ Google Scholar ]
• Woo, K.H. The Subjective Experience of Caregiving and Social Support for Family Caregivers of the Elderly with Dementia. Korean J. Soc. Welf. Stud. 1997 , 10 , 383–413. [ Google Scholar ]
• Yoon, H.S.; Cha, H.B.; Cho, S.H. The Impact of Social Support on the Family Caregivers’ Burden and Depression. Korean Gerontol. Soc. 2000 , 20 , 1–19. [ Google Scholar ]
• Yang, O.N. A Study on Stress of the Aged and Their Supporters and Coping strategies. Unpublished Master’s Thesis, Ewha Womans University, Seoul, Republic of Korea, 1995. [ Google Scholar ]
• Lee, Y.O. Factors Affecting Caregiving Burden for Elderly Caregivers of Stroke Survivors. Unpublished Master’s Thesis, Daejeon University, Daejeon, Republic of Korea, 2002. [ Google Scholar ]
• Lee, H.J. Influencing Factors and Caregiving burden among primary caregiver for Demented Elderly. Korean J. Care Work. 2006 , 2 , 33–60. [ Google Scholar ]
• Kim, J.M.; Shin, L.S.; Yoon, J.S. Determinants of Care Burden of Caregiver in Patients with Dementia. J. Korean Neuropsychiatr. Assoc. 2002 , 40 , 1106–1113. [ Google Scholar ]
• Lee, Y.M.; Yoo, I.Y. Care Burden, Depression and Social Welfare Service Utilization among Family Caregiver for Demented Elderly. Korean Gerontol. Soc. 2005 , 25 , 111–121. [ Google Scholar ]
• Kim, Y.J.; Choi, H.K. A Study on the burden, gratification, and family support of in-home dementia caregiver. Korean Gerontol. Soc. 1993 , 13 , 63–83. [ Google Scholar ]
• Park, J.H.; Lee, Y.R. Causes and Treatment of Dementia ; Hakmunsa: Seoul, Republic of Korea, 1997. [ Google Scholar ]
• Lee, H.J. Factors affecting family caregivers’ health related behavior change to the elderly with chronic diseases. Korean J. Fam. Soc. Work 2007 , 19 , 29–53. [ Google Scholar ]
• Kim, E.K.; Park, H.O. Factors associated with Burden of Family Caregivers of Home-Dwelling Elderly People with Dementia: A Systematic Review and Meta-Analysis. Korean J. Adult Nurs. 2019 , 31 , 351–364. [ Google Scholar ] [ CrossRef ]

Click here to enlarge figure

Share and Cite

Choi, J.Y.; Lee, S.H.; Yu, S. Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities. Healthcare 2024 , 12 , 1002. https://doi.org/10.3390/healthcare12101002

Choi JY, Lee SH, Yu S. Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities. Healthcare . 2024; 12(10):1002. https://doi.org/10.3390/healthcare12101002

Choi, Jin Young, Seon Heui Lee, and Soyoung Yu. 2024. "Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities" Healthcare 12, no. 10: 1002. https://doi.org/10.3390/healthcare12101002

Article Metrics

Article access statistics, further information, mdpi initiatives, follow mdpi.

Subscribe to receive issue release notifications and newsletters from MDPI journals

• Open access
• Published: 05 February 2021

Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

• Barbara D’Amen 1 ,
• Marco Socci   ORCID: orcid.org/0000-0001-9093-2167 1 &
• Sara Santini 1  

BMC Geriatrics volume  21 , Article number:  105 ( 2021 ) Cite this article

11k Accesses

31 Citations

Metrics details

A Correction to this article was published on 22 March 2022

This article has been updated

The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones.

Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified.

Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research.

Conclusions

Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.

Peer Review reports

Family caregivers, or informal or unpaid caregivers, provide 80% of long-term care in Europe, representing the bulk of health and social care to older or disabled people [ 1 ]. About 17% of the population in Europe [ 2 ] and 18.2% in the U.S. [ 3 ] is responsible for providing long-term care to older and disabled relatives.

Recent demographic and epidemiological changes, e.g. the extension of life expectancy and the increasing share of older people with multiple chronic diseases, might determine the growth of health and social care demand, thus increasing the number of family caregivers needed [ 2 ]. In the family context, the provision of care can be considered as a continuum starting with caring about i.e. with low levels of care responsibility, moving on to taking care, i.e. increasing care responsibility, up to providing intense and regular assistance. According to the literature, family caregivers are classified as “primary caregivers”, i.e. persons who provide the majority of caregiving tasks [ 4 , 5 , 6 , 7 ]; “secondary caregivers”, i.e. carers who assist primary caregiver in making decisions and complete his/her hands-on care [ 8 ]; “tertiary caregivers”, i.e. carers providing periodical and additional support to primary caregiver and do not make decisions on the cared recipient but help with issues do not directly concerning healthcare e.g. grocery and homework [ 9 ]. Finally, “auxiliary caregivers” provide an extra-support to primary caregivers for bettering the assistance: they provide companionship to the care recipients (e.g. grandparents), try to meet their emotional needs and participate in social activities with them [ 10 ].

As regards the tasks, the family caregivers perform, on a voluntary basis, a wide range of activities requiring different levels of effort, from company to help in carrying out the activities of daily living (ADLs) up to psychological and emotional support. The effects of care on different life realms of caregivers have been largely documented by the literature, such as anxiety and depression [ 11 ], relational strains [ 12 ], social isolation that may lead to perceived stress and loneliness [ 13 ]. Moreover, providing care and exposure to the suffering of a loved one can increase the risk for psychological and physical morbidity [ 14 ].

Despite the increasing number of male caregivers [ 15 ] the primary family caregiver is typically an adult and almost always a middle-aged woman [ 16 , 17 ]. Nevertheless, in developed countries several changes in the labour market and in family settings, e.g. increasing number of employed women, lack of strong family networks, living in single parent families [ 18 ] can turn young people into family caregivers. Sometimes, young family caregivers help adult relatives, i.e. their parents, and provide assistance to a frail or disabled family member, e.g. grandparent or sibling [ 19 ] thereby playing the role of auxiliary caregivers [ 20 , 21 ]. However, parents might need care themselves because of mental illness and/or physical disability and, in this case, young children have to take on the role of primary caregiver [ 19 , 22 , 23 ].

The definition of young caregiver differs across countries, according to the level of awareness of the civil society and of research carried out on the topic [ 24 ]. In the literature, there are different interpretations concerning the age brackets identifying a caregiver as young. In fact, there are more [ 25 , 26 , 27 ] and less extensive interpretations of the age range identifying both young caregivers [ 28 , 29 ] and young adult caregivers [ 19 , 25 ]. This heterogeneity could make it difficult to compare findings from different studies, as deepened in the Methods section.

A second difficulty is the low level of self-awareness; many youngsters, indeed, do not recognize themselves as family caregivers [ 30 , 31 ]. This can happen because their culture of affiliation takes it for granted that they have to cover this role in the family, or because caring is considered as an extension of family relations [ 32 ]. Poor self-awareness may lead to a third problem: identification, which could entail resultant difficulties for recruitment and enrollment of young caregivers in research and support programs [ 18 ].

Even though there is still a dearth of quantitative cross-national studies on young family caregivers, several statistics and surveys at national level provided important information for grasping the dimension of the phenomenon, though taking into account different age ranges and, moreover, not allowing a full comparability of findings. For example, in the U.S. one fifth of caregivers was aged between 18 and 34 [ 3 ], in Canada over 1 million youth between the ages of 15–24 years (28.2% of the whole population in that age range) provided some kind of unpaid child and elder care [ 33 ], while in Australia one in twenty people (5.6% or 151,600 persons) aged 15–24 years were young caregivers [ 34 ].

Concerning Europe, in the last decade a growing attention has been paid to young caregivers, particularly in the UK, where, in 2011, there were 178,000 unpaid young caregivers (5 to 17 years-old), i.e. 19% more than in 2001 [ 35 ]. A recent cross-national survey [ 36 ] carried out in six European countries (Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK) showed that out of 9,298 respondents, 28% were adolescent young caregivers (aged 15–17). A further exploration of the same database showed that 16.9% of adolescent caregivers aged 15–17 were caregivers of grandparents [ 37 ], suggesting the need for proofing the experience of young and adolescent caregivers of older relatives. Regardless of the age of the care recipient, when in the household a situation of disability and/or a chronic health condition occurs, young people may increase their level of involvement in carrying out basic domestic chores such as cleaning and tidying and they can start to help family members in need of care perform the activities of daily living e.g. dressing, eating, washing, up to provide support through medical care [ 38 , 39 ]. When the person in need of care is old, young people are pushed to provide care by the unavailability or unwillingness of the adult family members. Thus, young people provide care for contributing to the family ecosystem and/or in response to a request of parents, especially when the latter are working caregivers [ 40 ].

Young caregivers of older care recipients perform a wide range of caring activities: personal hygiene and meal preparation [ 40 , 41 ], help for instrumental activities of daily living, companionship and emotional support [ 42 ].

If, as highlighted above, the care activity can have a negative impact on the physical and mental health of adult family caregivers, this can happen all the more to young people and adolescents who, being still in a developmental age, can present psychological and emotional fragility [ 41 ]. According to the literature, young caregivers identify significant worries and problems in relation to their well-being, and these come over and above any ‘normal’ adolescent difficulties [ 43 ]. In particular, they report bad physical health [ 44 ], high levels of stress [ 45 ], fear and nervousness [ 46 ]. Moreover, they can run the risk of depression [ 47 ] and mental illness [ 48 ] and experience health inequalities, social, educational and employment exclusion [ 28 , 49 , 50 ]. These findings are enriched by studies that compared young adult caregivers with their non-caregivers peers, in which caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers [ 51 ]. Following this comparative approach between young adult caregivers and non-caregiving peers, one study stated that young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health [ 52 ]. Furthermore, young caregivers reported less reliance on problem-solving coping, higher somatization and lower life satisfaction if compared with non-caregivers [ 53 ]. Nevertheless, several studies pointed out even possible positive effects of caregiving on adolescent and young people, e.g. learning coping skills for the future, feelings of gratification, a closer relationship with the cared for person [ 42 ] and a greater empathy [ 29 ]. A recent study comparing the impact of caregiving among adolescent young caregivers of grandparents to adolescent caregivers of other care recipients (i.e. other relatives and friends) [ 37 ] showed that the quality of the relationship between the young caregiver and his/her grandparent can mitigate the negative impact of caregiving, e.g. frustration, sense of inadequacy and mental health problems. Despite the increasing number of young people providing assistance to their relatives across the world, the aforementioned studies representing an exception, young family caregivers are not sufficiently considered by the literature, especially those caring for older family members with functional disability, in most cases grandparents [ 21 , 37 ].

Objectives and conceptual framework

The main goal of this systematic literature review is to cover this gap in knowledge by exploring how scientific literature treats the topic of young and young adult caregivers of older relatives, from a methodological as well as a content-based perspective. Hence, a methodological appraisal was carried out and the findings of selected articles were then analyzed, in order to reply to the main research questions, as suggested by Petticrew et al. [ 54 ]:

What are the methodological characteristics of the articles included in this review?

What are the main findings that emerge from these studies?

In particular, what are the experiences, motivations, and caregiving impact of two groups of young caregivers of older relatives: children (or caregiving youth) under age 18 and young adult caregivers?

What are challenges and open questions that arise from the selected articles and that could suggest future research and policy directions?

The findings related to the last three research questions are framed in a specific conceptual framework, in particular the caregiving stress appraisal model (renamed CSA model) proposed by Yates et al. [ 55 ]. This model draws upon both the stress model presented by Pearlin et al. [ 56 ] and the appraisal model presented by Lawton et al. [ 57 , 58 ]. Given that the CSA model [ 55 ] is focused on caregivers of all ages, not specifically on young caregivers, it allows us to compare the caregiving experience lived by young (adult) caregivers described in the articles selected by this systematic literature review to the caregiving experienced by caregivers of other ages.

The conceptual framework

The CSA model [ 55 ] explores the relationships between caregiving stressors and caregiver well-being, measured in terms of risk of depression, in a representative community sample of disabled elders and their adult informal caregivers. This conceptual framework, as previously written, is based on the strengths of two different models: the stress model presented by Pearlin et al. [ 56 ] and the appraisal model elaborated by Lawton et al. [ 57 , 58 ]. The model proposed by Pearlin [ 56 ] treats stress as stemming from the way caregivers’ lives become organized and the effects of this organization on their self-judgments. According to this approach, stress is a consequence of a process including the socioeconomic characteristics and resources of caregivers and the primary and secondary stressors to which they are exposed.

In particular, primary stressors are hardships and problems anchored directly in caregiving, while secondary stressors are related to two categories: the strains experienced in roles and activities outside of caregiving, and intrapsychic strains, involving the diminishment of self-concepts. Coping behaviors and social support can potentially intervene as mediating factors at multiple points along the stress process. Lawton et al. [ 57 , 58 ] proposed a conceptual model that adds to the Pearlin findings the importance of the individual appraisal and reappraisal process. According to this, the appraisal of a caregiving stressor is a subjective process accounting for the social, cultural, and economic characteristics of the caregiver.

Furthermore the caregiving is a dynamic process that involves caregivers, care recipients and other psychological and relational aspects. Starting from the strengths of these two models [ 56 , 57 , 58 ], the CSA conceptual framework [ 55 ] links caregiving stressor, caregiving appraisal and potential mediators to caregiver well-being. In particular, this model is composed of five interrelated factors: 1) the variables of care recipient needs for care or “primary stressor” (i.e. cognitive impairments, functional disability and problems behaviours); 2) caregiver’s primary appraisal (i.e. hours of informal care, that is the response to the care recipient’s health conditions). This process includes both subjective elements (e.g. appraisal of the care recipient’s needs of care) as well as objective ones (e. g. measure of caregiving work); 3) mediators that could change the effects of the stressor on the caregiver’s well-being. These are classified as external (e.g. use of formal services) and internal (e.g. levels of global mastery, quality of the relationship between the caregiver and care recipient, and emotional support available to the caregiver). According to Lawton et al. [ 57 ], “mastery” could be defined as a positive view of one’s abilities and the related behavior during the caregiving process; 4) the caregiver’s secondary appraisal (i.e. the caregiver’s perception of being “overloaded”, that is the caregivers’ capability of determining their own feelings about caring); 5) outcomes, i.e. psychological caregiver’s well-being, measured by risk of depression.

According to this model, caregiving is a complex process in which two separate caregiver’s appraisals affect the relationship between the stressors and the outcomes. Hence, the outcomes of the caregiving experience are a subjective process, strictly related to the psychological, social, cultural, and economic characteristics of the subject. Furthermore, CSA model [ 55 ] highlights the association between the caregiver’s overload and consequent depression, and the poor quality of the relationship with the older care recipient, especially in case of cognitive and behavioural problems.

According to this conceptual framework, that is based on the experiences of caregivers of all ages, the authors discuss the findings of this systematic literature review in order to highlight differences related to the caregiving experience of young (adult) caregivers.

In order to answer the above mentioned research questions, the authors first carried out a methodological appraisal using the Mixed Methods Appraisal Tool (MMAT) [ 59 ], and then the contents of each selected article were analyzed thematically. As regards the methodological appraisal, MMAT is designed for the appraisal stage of systematic mixed studies reviews, i.e., reviews that include qualitative, quantitative and mixed methods studies, with the exclusion of non-empirical papers, such as review and theoretical papers. The MMAT includes criteria for appraising the methodological quality of five categories of studies: (a) qualitative studies, (b) randomized controlled trials, (c) non-randomized studies, (d) quantitative descriptive studies, and (e) mixed methods studies. For each study category, MMAT provides two groups of questions: 1) two screening questions aimed at exclude that the paper is not an empirical study and thus cannot be appraised using the MMAT; 2) five questions targeted to evaluate the methodological distinctive specific characteristics of the appraised study.

Each criterion is rated on a categorical scale: yes, no, and can’t tell. A quantitative appraisal score was calculated by applying the scoring system proposed by Pluye and colleagues [ 60 ]. According to them, the presence/absence of criteria (yes/no) may be scored 1 and 0, respectively. Thereafter, a ‘quality score’ can be calculated as a percentage: [(number of ‘yes’ responses divided by the number of ‘appropriate criteria’) × 100] [ 60 ].

In this systematic review, first and second authors independently appraised the methodological quality of each study; the results of each appraisal were compared and any disagreements were solved through intervention of the third author and discussion among the authors.

Finally, after calculating the above mentioned appraisal score for each article, we synthesize methodological quality results in three different categories:

Low score= < 35%

Medium score= from 36 to 70%

High score= from 71 to 100%

As regards the content analysis, in order to examine characteristics, conditions and needs of young caregivers of older relatives, the content of each article was analyzed adopting the constant comparison technique [ 61 ]. According to the latter, each study was read by each researcher independently and the contents are codified in order to highlight concepts that were raised from the study. Then, these codes were constantly compared with the findings of the other selected studies to the purpose of identifying common themes and conceptual categories. At the end of this analytical stage, the researchers compared the outcomes of their independent research in order to identify commonalities and to discuss any disagreement. The categories emerged from the studies were grouped according to their similarities into overarching themes, as shown in the section Results.

Search strategies

PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were accessed by the first author (B. D’Amen) on January 27, 2019, for the sake of conducting a comprehensive search using a combination of Boolean operators and terms related with the topic. Given that the focus of this review is the relationship between young and young adult caregivers and older care recipients, two different groups of terms were selected for the identification of the articles. A pilot search was conducted in the selected databases, after which some minor changes were made to correct search words. In particular, for the caregiver category we used the terms: young caregivers , young carers , young adult caregivers , young adult carers . Considering the care recipient category, we used the following terms: older family members , older people , older adults and elderly .

These two groups of terms were combined in search strings constructed using the Boolean operator “AND”. Following this search strategy, a total of 3,947 articles were identified through database searching, 26 additional articles were added through bibliographic research and researchers’ knowledge. From the 3,973 articles, 1,481 duplicates were identified manually and then removed. Four different eligibility criteria were applied for the selection of the articles. The first one was the age range of young and young adult caregivers. As Joseph et al. [ 38 ] stated, there is no single definition of both young and young adult caregiver. In particular, as already mentioned in the Introduction, the analysis of the literature on young and young adult caregivers reveals that there is quite a bit of variation in the definition of the age range of these categories of individuals. For example, Aldridge et al. [ 28 ] defined young caregivers as children, adolescents and teenagers under 18 years, while Beach [ 29 ] defined them as young people aged 14 to 18 years. Later, Fruhauf et al. [ 26 ] defined people aged 7 to 29 as young caregivers. The same happened for the definition of young adults. Dellmann-Jenkins et al. [ 25 ] have defined subjects aged 18 to 40 years as young adult caregivers, whilst Becker et al. [ 19 ] included in this category those aged 16 to 24.

Given these differences concerning the age brackets, the authors selected a wide age range, up to 40 years, in order to be as much inclusive as possible. Another eligibility criterion regarded the age of care recipients, set at 60 years onwards. Although there are commonly used definitions of old age (i.e. 65 years old), there is no general agreement on the age at which a person becomes old. Given this lack of a standard numerical criterion, in this literature review we adopted the cutoff point of 60 years to refer to the older population, according to the United Nations [ 62 ]. Moreover, the selected articles had to be focused on real life cases of caregiving, which means that, accordingly, studies merely focused on perceptions or beliefs about caregiving were excluded. Finally, this systematic literature review included articles written in English. These eligibility criteria were applied for the screening of the 2,492 studies. Thereafter, 2,192 articles were excluded through the analysis of both title and abstract and 300 full articles were assessed for eligibility. At the end of this selection process, the total number of articles included in the analysis was 10 (Fig.  1 ).

The PRISMA flow chart for reporting the study screening process

The three authors carried out the selection process independently: the first author reviewed 2,101 articles, the second author 250 and the third author 141 articles. The results of this selection process were checked by the authors independently. In particular, the screening process carried out by an author, say the first, was checked by one of the other two in order to verify the accuracy of the selection process described in the PRISMA chart [ 63 ]. Applying the eligibility criteria, each author ended up with the same results obtained by the colleagues.

This review includes 10 studies and their main methodological and content characteristics are described in the following section.

Study characteristics

Concerning the selected studies, six are qualitative, one quantitative and three follow mixed methods. Moreover, three studies adopt a comparative approach. In particular, Dellmann-Jenkins et al. [ 25 ] compared adult children and grandchildren as family caregivers; Dellmann-Jenkins et al. [ 40 ] explored differences between young adults who were primary caregivers to impaired older relatives and young adults who had yet to take on caregiver roles; Fruhauf et al. [ 26 ] analysed caregivers according to age.

Table  1 provides an overview of the main characteristics of the studies: data were extracted from each study by the three authors and the results were collected and classified by the first author.

The selected studies cover a time ranging from the late nineties to 2013. The sample size ranges from a minimum of six to a maximum of 80 subjects; three articles included in the sample even young caregivers’ parents [ 27 , 41 , 42 ], whilst the others were focused only on young caregivers. Concerning the characteristics of caregivers, the articles provide evidences on 255 young individuals, 190 females and 65 males. The age ranges from 7 to 40 years. The selected articles considered different types of caregiving, categorized on the basis of the amount of assistance provided and the related burden. Three studies [ 25 , 40 , 64 ] were focused on primary caregivers [ 4 , 6 ], four [ 27 , 41 , 42 , 65 ] on auxiliary ones [ 9 ], and three articles [ 5 , 26 , 29 ] included different types of caregivers, with a prevalence of auxiliary ones. Out of a total of 255 caregivers included in the selected studies, 53% were primary caregivers, 15% secondary [ 8 ], 3% tertiary and 29% auxiliary [ 26 ].

On the other side, the number of care recipients was not always specified, so it is not possible to quantify the cases of multi-caregiving. The age of the cared-for older people ranges from 60 to 96 years and the sex was specified only in three articles [ 27 , 65 ], whilst in the other studies this was not reported, or can be partly deduced from the relationship between caregiver and care recipient. Concerning the type of pathology/health issues, two articles [ 5 , 25 ] did not provide information, whilst two more [ 29 , 41 ] were focused on care recipients with Alzheimer’s disease or dementia. The remaining studies concerned cared-for older people having various pathologies, cognitive or physical limitations.

Methodological and quality appraisal

As previously written, the methodological appraisal was carried out through the MMAT, the critical appraisal tool developed by Hong and colleagues [ 59 ].

According to the appraisal process described in the section methods, the results related to the methodological quality of the selected articles are summarized in the table below (Table  2 ).

Considering the score system, almost all selected articles had a high methodological quality, except for a qualitative study [ 65 ] that got a medium score. The main critical aspect of quantitative and mixed method studies concerned the sample size, considered too small to be representative of the target population. The limited number of individuals involved in these studies was justified by the authors of the articles with the difficulty of reaching young caregivers, due to the lack of awareness and knowledge around this issue. In their opinion, therefore, the small sample size should be considered as a limitation concerning the target population rather than a weakness of the research studies design in itself.

As regards the qualitative studies, the structure of the interviews was not always explained, and in the medium score article the description of the coding and analytical process was not so accurate, so it was not possible to understand the bias that could come from researcher beliefs.

Content and findings analysis

The review highlighted four major themes: aspects of the caregiving relationship, effects of caring, coping strategies and recommendations for services, policy and research. Each theme has been organized in sub-themes that are dealth with in depth hereunder.

Aspects of the caregiving relationship

Motivations.

The motivations pushing a young person to take on the care of an older relative are multiple and often interconnected, e.g. affection and bond with the older person [ 5 , 25 ] and the will to avoid his/her institutionalization (e.g. in nursing homes) [ 25 , 40 ]. In some cases, contextual/familiar conditions, including the lack of availability of assistance from more adult relatives [ 25 , 40 ] or being childless [ 25 , 40 ], can be drivers of youth caregiving. Considering the CSA model [ 55 ] adopted as conceptual framework of this review, these findings confirm the relevance of the personal motivations and of the subjective appraisal in the caregiving relationship also for the youngest. However, given that these motivations could be often multiple, in the case of young caregivers it is important to adopt a wider definition of the first and the second factors, that in the above mentioned model are related to the “variables of care recipients’ needs (or primary stressor)” and to the “primary appraisal”, by considering the role of external factors, such as the contextual/familiar conditions, that in some cases might have a role in the caregiving relationship and its effects for the youngest. Usually, the quality of the relationship with parents is not an aspect influencing the willingness to provide care, but young people often help simply because there is a practical need for assistance [ 41 ]. However, in the case of primary caregivers, there are differences related to their roles: grandchildren seem to be driven more by feelings of attachment, while children have feelings of filial obligation towards the cared-for person [ 25 ].

Perceptions and meaning

Caregiving is perceived as an experience for returning the care that older people had provided in the past to the youngsters [ 5 ]. In the case of auxiliary caregivers, those most involved in caring tasks were individuals with higher levels of cohesion and lower levels of conflict in intergenerational relationships, coupled with a positive history of interactions with their grandparents [ 65 ]. These findings suggest us to deepen the CSA model [ 55 ], by considering the quality of the relationship not only as “mediators” of the caregiving relationship, that might mitigate the impact of the stress, but also as a “driver” that contributes to foster the caregiving relationship between young or young adult caregivers and older patients.

Caregiving has also been defined as a case of role reversal, in which young caregivers find themselves caring instead of receiving care [ 5 ]. As for the perception of the subjects involved in the caregiving relationship, one study [ 27 ] highlighted how grandchildren recognize themselves as auxiliary caregivers, while mothers are perceived as engaged in more caregiving activities than fathers. The care recipients are accepted and understood by young caregivers because of their illness, though these perceptions are mediated by the information given by parents. Accordingly with the CSA model [ 55 ], in particular with the process of appraisal, these findings confirm the relevance of the subjective perceptions of the caregiving role experienced by the youngest as factors involved in determining the sense of the overall caregiving relationship. Thus, the latter is not a simple response to specific care needs, but includes subjective meanings that could play a significant role in providing care and in determining its effects.

Experience of caregiving and activities performed

The analysis of selected articles showed that young caregivers carry out a wide range of activities, ranging from helping the cared-for older people in performing ADLs [ 41 , 65 ] and instrumental activities of daily living (IADLs) [ 41 ], to companionship, assistance for shopping, personal hygiene, meal preparation [ 40 ] and emotional support [ 65 ]. Sometimes caregiving activities are based on parental directives [ 26 , 27 ], although in some other cases the youngest take the initiative to carry out certain activities that can be particularly appreciated by the care recipient, such as shaving of the legs [ 26 , 27 ]. Even though the variety of caregiving tasks is dependent on both grandchildren’s developmental/emotional condition and care recipients’ caring needs [ 27 ], young people provide more care when they are more attached to grandparents and when their parents experience a greater care burden [ 41 ].

Effects of caregiving

Negative effects.

The effects of caregiving are analyzed from the perspective of the current conditions experienced by young caregivers and in some cases, too, from the perspective of the implications for future life [ 5 , 40 , 41 , 42 ]. With regard to negative aspects stemming from the caregiving relationship, compared to the contingent living conditions, young people report feelings of anxiety, depression [ 26 ], anger and/or resentment [ 27 ], sadness mingled with compassion [ 27 ], and a sense of guilt, deriving from the fact that one often wanted to do something else [ 26 ].

Many young caregivers declare that they feel fear, a feeling often resulting from health conditions of the care recipient [ 5 , 25 , 27 , 64 ] and the feeling that these may worsen. These feelings can be accompanied by frustration, generated in young people by tasks that go beyond their skills [ 26 ]. Youngsters usually state that, although they know the technical terms related to the disease of the care recipient, they find it difficult to understand them [ 27 ]. Moreover, they do not understand what they must do in a dangerous situation [ 26 ] and they complained of a lack of information on the care recipient’s health condition [ 27 ]. Furthermore, young caregivers do not know the level of knowledge and skills required to provide care properly [ 41 ]. Accordingly with the CSA model [ 55 ], these findings confirm the relevance of the “primary appraisal”, focused on the care recipient’s health conditions, and the sense of “mastery”, considered as internal resources and “mediator” of the caregiving effects, in determining negative outcomes of the caregiving relationship. Frustration can be often caused by a decrease in free time to dedicate both to themselves [ 40 ] and to other relationships [ 5 , 25 , 42 ], including those with their own peers [ 42 ] and with other family members [ 25 ], which could make it difficult to establish intimate relationships [ 25 , 64 ]. Concerning young adult working caregivers, even the effects of caregiving in the professional sphere are manifested in feelings of frustration, whose origin is the lower possibility of career advancement, mobility [ 5 , 25 , 40 , 64 ], and greater absenteeism from work [ 25 , 40 ].

The negative effects of caregiving also affect self-image, with the perception of being different from other friends and relatives [ 5 ], and the feeling of experiencing a premature role reversal [ 5 , 64 ]. In addition, caregiving involves a greater difficulty in differentiating from the family of origin [ 64 ], an important issue for the construction of individual autonomy whose negative impact on the subsequent marital quality and career choices has been documented [ 66 , 67 ]. Caregiving has also particularly negative effects on the future life of young caregivers, leading them to develop negative views and feelings about ageing [ 42 ]. Particularly important is the role of fathers, in the construction of a sense of social responsibility: when the father provides care, young caregivers might develop less social responsibility and a more negative attitude towards assistance [ 41 ].

Positive effects

As for the positive aspects associated with care, young caregivers experience an improvement in their self-image, with a greater awareness of their abilities [ 5 , 25 , 26 , 40 , 64 , 65 ], feelings of gratification and satisfaction [ 42 , 65 ], and the acquisition of new skills [ 26 , 42 ]. Particularly positive effects on the relational context in which young caregivers experience benefits have been observed not only in the relationship with older people but also with other individuals [ 5 , 25 , 29 , 40 , 42 , 64 ]. Moreover, one study [ 29 ] underlines that providing assistance can have a positive impact on family relationships, especially with siblings, and greater intimacy within the mother/adolescent relationship [ 40 ].

The caregiving relationship can be at the origin of new relational possibilities: some young caregivers, in fact, to cope with the lack of time and not to deprive themselves of meaningful relationships, include friends in their daily care tasks/routines [ 5 , 26 ]. In these cases, caregiving is transformed from a factor of social isolation to an opportunity for integration by sharing personal life challenges with peers. Particularly positive effects concern the improvement of some behavioural characteristics, since caregiving can make young people wiser and patient [ 5 ]. Providing assistance can positively predispose them to provide care in the future as well, to their partner or children [ 5 , 41 ], and give them a more positive representation of long-term care for older parents [ 41 ] and greater sensitivity to ageing issues [ 5 ]. These findings suggest that positive effects of caregiving could be related to an active role of the youngest in managing the outcomes of the caregiving process, so the sense of “mastery” stated by the CSA model [ 55 ] is confirmed as an important mediator in reducing distress and in fostering the caregivers’ well-being.

Coping strategies

To mitigate the negative effects of caregiving, young caregivers could develop different strategies: the use of positive memories with care recipients [ 26 , 42 ], the minimization of their health conditions [ 26 ], positive self-evaluation of one’s role as caregiver, and humour [ 42 ]. The stress from the caregiving relationship is also managed through the adoption of particular habits, such as, for example, sports and religious activities [ 5 , 26 , 42 ], and by receiving support from friends [ 5 ].

Use of services and needs for support

Most young caregivers receive informal support from family, friends, neighbors and the church. Formal support is less frequent and concerns health services and participation in mutual help groups. Particular barriers for the use of formal services are represented by the lack of both economic resources and information regarding available services [ 25 ].

Concerning the needs expressed by young caregivers, the possibility of receiving emotional support from other caregivers of the same age, low-cost health services for older people, and their transport to facilitate daily activities [ 25 , 40 ], are particularly relevant. In particular, according to the CSA model [ 55 ], these findings confirm the relevance of emotional support as a mediator factor able to reduce the negative outcomes of the caregiving relationship. Only one among the selected papers [ 26 ] compared young grandchildren (aged 7–17) and adult children (aged 21–29) by focusing on caregiving outcomes and caregivers’ needs. This study suggests that younger grandchildren experienced more frustration, anger, guilt, anxiety while developing more behavioral (i.e. avoidance, outside activities) and cognitive coping strategies (i.e. focusing on positive memories, denial, humor) than adult grandchildren. Moreover, the different developmental stage that young and adult grandchildren were living influenced their need, e.g. young grandchildren needed help for understanding what the care recipient’s health condition may entail and adult grandchildren needed more intimacy, as they were in a phase of life in which it is important to build up intimate romantic relationships.

Recommendations for services, policy and research

The analysis of the selected articles highlighted implications for research and support services, in particular specific service delivery recommendations. Concerning formal services, it would be desirable to promote the creation of caregiver support groups for the whole family [ 26 ]; this support should be established within the educational system and facilitated by school counsellors [ 42 ] or offered through existing ageing social service providers [ 27 ]. To facilitate the use of services, it would be useful to carry out a need assessment, in order to propose targeted and effective interventions, and to promote a greater knowledge of any support groups present on the territory, especially if they are free [ 25 ].

These actions should help the management of different types of stressful factors, including: lack of time to develop relationships, difficulties in managing married life, managing both early career difficulties and psychological discomforts arising from premature role reversal [ 25 ]. Caregiver support groups and training workshops specifically designed for multigenerational caregiving families are needed. The latter, for example, would assist parents in explaining grandparents’ physical/cognitive decline to their children [ 27 ]. Although young caregivers need to be recognized, identified and supported as a distinct group of vulnerable children [ 26 ], information on the impact of caregiving should also be disseminated in the clergy, which appears to be a particularly significant source of spiritual support [ 25 ]. Furthermore, workplaces should also have specific counsellor services and flexible work opportunities to support young caregivers in building their professional lives and to better reconcile work and care responsibilities [ 25 ].

The studies included in this review analysed the experience of young and young adult family caregivers of older relatives, who represent an under-investigated category of family caregivers [ 21 ].

The mainly qualitative approach and research designs of the reviewed studies focused on small collectives give evidence of the scholars’ need for drawing the young family caregivers’ profile and the caregiving dynamics they experience. Given the different role of caregivers included in the selected studies (i.e. primary, secondary, auxiliary and tertiary), this literature review allows us to capture the experience of young and young adults caregivers of older people from different perspectives. Moreover, the reviewed studies have explored the practical aspects of the caregiving relationship (tasks performed, motivations, meaning, coping strategies), and the amount of care provided, thereby confirming the classification of young and young adult caregivers into primary [ 19 , 22 , 23 ] and secondary/auxiliary [ 20 , 21 ].

The comparative approach adopted by three studies [ 25 , 26 , 40 ] allowed us to better understand the experiences and the different effects of caregiving connected to the role played by young and young adult caregivers in the family environment (i.e. adult children vs grandchildren or caregivers vs non-caregivers), and to their age [ 26 ].

In accordance with the literature [ 16 , 17 ], the selected studies showed that among young family caregivers, females are more involved than males in caregiving activities.

As far as the impact of caregiving is concerned, this review increases the knowledge about the impact of caregiving on young caregivers’ psychological health [ 45 , 47 ] and social life [ 28 , 49 , 50 ]. Accordingly with the literature [ 68 ], this review showed that caregiving activities can have, even simultaneously, a positive and a negative impact on the youngsters’ different life realms. For example, some studies highlighted an improvement in self-image [ 5 , 25 , 26 , 40 , 64 , 65 ], and one of these [ 5 ] even reported a worsening on it. Some studies underlined negative effects on social life in and outside the family environment [5; 25, 64, 42], while others recorded positive ones [ 5 , 26 ].

Moreover, this review allowed us to raise the specificities of caregiving relationship between young people and older relatives in comparison to the caregiving experience of adult caregivers, as conceptualized in the CSA theoretical framework [ 55 ]. In this regard, the results suggest that the CSA model [ 55 ] is just partly applicable to young caregivers for reasons that are mainly due to the young age of the caregivers. In particular, according to this model indeed, the subjective appraisal of the elder’s need for care determines the amount of care which the caregiver thinks it is to provide, so assuming that caregivers are able to appraise the care recipient’s disability and the more suitable response to his/her needs. Conversely, young caregivers may not be able to make a realistic appraisal of the care needs, due to their young age and the dearth of experience and knowledge. Moreover, the CSA model [ 55 ] considers the “overload” a secondary appraisal, so assuming that caregivers are able to identify their level of overload by assessing their own situation and their feelings about caring. This perspective seems to be not appropriate for describing the experience of young caregivers and their level of self-awareness. Furthermore, given that this review highlights that the young caregivers provide more care when their parents experience greater care burden [ 41 ], the role of the parent’s burden in providing care should be taken into account for determining the hours of informal care (“primary appraisal” in the CSA model [ 55 ]) and the young caregivers overload (“secondary appraisal” in the CSA model [ 55 ]). Conversely, a common point of CSA model [ 55 ], which considers adult family caregivers, and the results of this review, focused on young family caregivers, lies in the quality of the relationship between the adult family carer as an element which can affect the perception of the caregiving experience and so the caregivers’ well-being.

The youngsters, even knowing the terms related to the cared-for illness and responding to the parents’ requests for help, often do not fully understand pathology risks [ 26 ]. This exposes them to greater feelings of inadequacy, fear, and frustration [ 26 ] than adult caregivers on whom they often rely for information acquisition [ 27 ], thereby confirming the findings of Järkestig-Berggren et al. [ 46 ]. These findings suggest to improve the Yates model [ 55 ] by highlighting the relevance of this mismatch between the care demand and the young caregivers’ knowledge and emotional resources as factors that could play an important role in determining the caregiving outcomes. Moreover, given that the awareness of this mismatch could encourage adult family members to reshape the requests to young caregivers, this could be an important factor able to reduce the young caregivers burden. Despite these theoretical consequences, this mismatch should be taken into account by professionals responsible for health and social care services and policy makers, in order to provide training interventions and support policies for young and adult caregivers. A relevant aspect that has to be added in the CSA model [ 55 ] is the relevance of supporting young caregivers in understanding the care recipient’s illness. This is related to a communication aspect that could be included in the set of factors stated by the CSA model [ 55 ] and directed at how caregivers appraise the needs for care (primary appraisal). Furthermore, as stated by the CSA model [ 55 ] and confirmed by Chappell et al. [ 69 ] the perceived social support, such as emotional support from family and friends, is strongly related to caregiver’s well-being and unrelated to the burden. Given that the emotional support is relevant also for young caregivers [ 25 , 40 ], providing interventions that address this aspect or specifically focused to develop skills to elicit desired emotional support from family and friends is an important aspect for improving caregivers’ quality of life even with caregiving burden in their lives.

Finally, in light of the insights on the role of the father caregiver in influencing children’s perception of caregiving experience and social responsibility [ 41 ], the relationship of the caregiver with other family members might provide an interesting reading key to identify those “family-embedded” factors that contribute to determine the effects of caregiving on young people in the present as well as in the future (e.g. the willingness to keep on providing care).

Weaknesses of the reviewed studies and suggestion for future research

A key-point in research on young caregivers is the lack of a homogeneous definition of the age range for identifying a young caregiver and of a categorization of different sub-groups of caregivers according to their age. The latter might indeed help scholars capture how motivation to care, needs for help and coping strategies change in different phases of life.

Conscious of this general bias, the selected studies were not without specific weaknesses. The first limitation is the small sample size and the co-presence of individuals carrying out different caregiving activities. Thus, future studies should consider whether to include in samples youngsters playing the role of primary, or secondary or auxiliary caregivers, or whether to include all these categories, and how to control the confounding factors that each role entails (e.g. amount of care and caregiving activities).

Secondly, in the selected studies the illness of the care recipient was not sufficiently analysed as a factor influencing caregiving activities and relationships. Hence, particular attention in the design of future studies should be directed to the impact of different types of care recipient’s illness on the youngsters’ perception of the assistance provided. Given that research has shown specific difficulties to care for older people with dementia [ 70 ], it could be interesting to understand whether cognitive and physical impairment generate different feelings and coping strategies among young caregivers [ 26 ].

Another aspect that could be further investigated concerns the context of care i.e. the grandchildren-grandparents housing condition. Cohabiting with the care recipient, indeed, was not within the sample inclusion criteria of the majority of the reviewed studies, and only one article treats this topic [ 27 ]. Nevertheless, in light of the articles cross-reading, living in a multigenerational environment where there is a grandparent in need of care seems to be a driver for involving the youngest in the caregiving activities, especially if the grandparent(s) suffer from cognitive impairment, dementia, Alzheimer disease [ 41 ]. Thus, further studies that deepen the association between the context of care and the involvement of the young family members in the caregiving activities are welcome.

Moreover, the sex gap is worthy of further study to understand possible differences in reacting to adverse or difficult situations due to care between girls and boys. The supports available for and needed by young caregivers were still inadequately explored. Conversely, the analysis of available public support services allows us to understand to what extent welfare state measures are able to identify and help young family caregivers.

The reviewed studies included in the samples mostly white individuals. Recent literature states that belonging to black and minority communities can be a driver for being a young caregiver [ 47 ] and underlines the influence of cultural patterns on the construction of the meaning of care by young family caregivers [ 71 ]. Thus, it would be important to develop studies involving different minority groups, as well as different countries, since all selected studies have been carried out in the U.S.

One study [ 25 ] highlighted how the perception of care burden can change in accordance with the type of relationship and of emotional bond with the care recipient (e.g. children or grandchildren of the cared-for person). Thus, more studies on the influence of the relational bond on the young caregivers’ experience would be welcome. Moreover, research based on larger and longitudinal samples would allow us to analyze how the caregiving relationship evolves over the years and the effects that it might produce on young people even after the death of the care recipient. In this regard, it is interesting to highlight that none of the reviewed studies investigates the association between the duration of care and the effects of caregiving. This is an aspect which deserves more attention from future studies.

It would also be important to plan research studies able to investigate the cases in which the caregiver provides care to more than one person, including the support offered to primary caregivers [ 65 ]. Furthermore, in light of the contradictory findings concerning the caregiving outcomes on youngsters’ physical, psychological and social well-being, future studies should search for possible factors that can favor the predominance of negative or positive effects and the extent to which the latter can compensate the former.

Suggestions for teachers, health and social workers

Particular attention should also be paid to spread awareness and knowledge of this phenomenon among health and social service professionals, in order to facilitate the identification of young caregivers, offer them support, and make their recruitment by researchers easier. These actions should be taken into account for improving the young caregivers’ well-being and should be added to interventions focused on developing skills to elicit desired emotional support from family and friends, as argued by the CSA model proposed by Yates et al. [ 55 ] and Chappell [ 69 ]. An important topic for future interventions on young caregivers of older relatives will be to explore ways to help their self-identification as caregivers. Furthermore, future studies should consider the welfare and healthcare systems where the caring relationship took place, since this analysis could help us understand to what extent the reasons for caring are driven by exogenous and systemic factors (e.g. availability of services, tailored policies, informal care networks) or by personal ones (e.g. resilience, psychological sources).

Limitations

The searches of the articles were limited to five databases (PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost) accessed by the first author over a specific period of time (January 2019). In order to be more inclusive, the authors added studies selected through a bibliographic research. Moreover, the terms and the Boolean operator applied might not be comprehensive: in particular, specific terms related to the subjects, such as “senior”, “grandparent”, “grandchildren”, “children”, and terms related to a specific pathology, were not included as search terms. Given that our search could not cover all the terms related to the main topic of this article, the results of this systematic review could be not exhaustive and, unknowingly and unintentionally, some papers might have been omitted. Another factor that contributed to the reduction of the included studies is the age ranges adopted for defining young (adult) caregivers and older care recipients. In particular, some studies did not exclusively concern the relationship between young (adult) caregivers and older care recipients and include caregivers older than 40 years or care recipients younger than 60 years. Finally, a further limitation concerns the absence of studies located in the USA, Canada, Europe and Australia among the selected manuscripts. In fact, although the interest of the social sciences for intergenerational relations was born in the USA at the end of the last century and it spread to Europe since the early 2000s, few studies have focused on caregiving relationships within the dyad young grandchild-grandparent (aged 60 and over) i.e. mainly between grandchildren and grandparents [ 72 , 73 , 74 , 75 , 76 ]. This represents a limit of this systematic literature review however not attributable to the authors who explored valuable and rich databases.

The phenomenon of young and young adult caregivers of older family members in need of care is still largely uncovered. Further reflections for finding “shared definitions” are needed, as well as quantitatively large sample and mixed-methods studies for deepening the different aspects of caregiving relationships that have been studied so far. In fact, as stated by the CSA model [ 55 ], caregiving is itself a complex experience whose effects and meanings go beyond the mere dyadic relationship between young caregiver and old care recipient, including the whole family. Considering the CSA model [ 55 ], assumed as theoretical model for framed the findings of this review, this article adds some specific factors related to the young age of the caregivers, such as the role of the parents’ burden in determining the young caregivers’ load and the difficulties presented by young caregivers in understanding the care recipient’s illness. These evidences could improve the CSA model [ 55 ] in order to better analyze the young caregivers’ well-being.

Availability of data and materials

The data are available in the articles included in the review.

Change history

22 march 2022.

A Correction to this paper has been published: https://doi.org/10.1186/s12877-022-02804-2

Abbreviations

Activities of Daily Living

Caregiving stress appraisal (model)

Instrumental Activities of Daily Living

Mixed Methods Appraisal Tool

Preferred Reporting Items for Systematic Reviews and Meta-Analysis

Hoffmann F, Rodrigues R. Informal carers: who takes care of them? Vienna: European Centre For Social Welfare Policy and Research; 2010. https://www.euro.centre.org/downloads/detail/1256 . Accessed 24 Nov 2019.

Google Scholar  

European Commission. Informal care in Europe. Exploring formalization, availability and quality. 2018 https://ec.europa.eu/social/main.jsp?catId=738&langId=en&pubId=8106&furtherPubs=yes . Accessed 27 Oct 2019.

National Alliance for Caregiving & AARP Public Policy Institute. Caregiving in the U.S. Research report. 2015. https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Executive-Summary-June-4_WEB.pdf . Accessed 21 Oct 2019.

Brody EM. Women in the middle, their parent-care years. Fam Relat. 1990;39:471–2.

Article   Google Scholar  

Fruhauf CA, Jarrott SE, Allen KR. Grandchildren’s perceptions of caring for grandparents. J Fam Issues. 2006;27(7):887–911.

Townsend AL, Franks MM. Quality of the relationship between elderly spouses: influence on spouse caregivers’ subjective effectiveness. Fam Relat. 1997;46:33–9.

Celdrán M, Triadó C, Villar F. “My grandparent has dementia”: how adolescents perceive their relationships with grandparents with a cognitive impairment. J Appl Gerontol. 2011;30:332–52.

Penrod JD, Kane RA, Kane RL, Finch MD. Who cares? The size, scope, and composition of the caregiver support system. Gerontologist. 1995;35(4):489–97.

Article   CAS   PubMed   Google Scholar  

Dilworth-Anderson P, Williams SW, Cooper T. Family caregiving to elderly African Americans: caregiver types and structures. J Gerontol B Psychol Sci Soc Sci. 1999;54(4):S237–41.

Piercy KW, Chapman JG. Adopting the caregiver role: a family legacy. Fam Relat. 2001;50(4):386–93.

Liu S, et al. Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China. J Clin Nurs. 2017;26(9–10):1291–300.

Article   PubMed   Google Scholar  

Oh S, Yu M, Ryu YM, Kim H, Lee H. Changes in family dynamics in caregiving for people with dementia in South Korea: a qualitative meta-synthesis study. Qual Health Res. 2020;30(1):60–72.

Kovaleva M, Spangler S, Clevenger C, Hepburn K. Chronic stress, social isolation, and perceived loneliness in dementia caregivers. J Psychosoc Nurs Ment Health Serv. 2018;56(10):36–43.

Schultz R, Monin JK. Suffering and compassion in older adults caregiving relationships. In: Boll T, Ferring D, Valsiner J, editors. Cultures of care Charlotte. NC (USA): Information Age Publishing Inc.; 2018. p. 213–42.

Hellström I, Håkanson C, Eriksson H, Sandberg J. Development of older men's caregiving roles for wives with dementia. Scand J Caring Sci. 2017 Dec;31(4):957–64.

Keating N, Eales J. Social consequences of family carers of adults: a scoping review. Int J Care Caring (IJCC). 2017;1(2):153–73.

Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family - caregivers of people with mental illnesses. World J Psychiatry. 2016;6(1):7–17.

Article   PubMed   PubMed Central   Google Scholar  

Metzing-Blau S, Schnepp W. Young carers in Germany: to live on as normal as possible – a grounded theory study. BMC Nurs. 2008;7:15.

Becker F, Becker S. Young adult carers in the UK: experiences, needs and services for carers aged 16–24. 2008. http://static.carers.org/files/yac20report-final-241008-3787.pdf . Accessed 19 Oct 2019.

East PL. Children’s provision of family caregiving: benefit or burden? Child Dev Perspect. 2010;4(1):55–61.

Stelle C, Fruhauf CA, Orel N, Landry-Meyer L. Grandparenting in the 21st century: issues of diversity in grandparent-grandchild relationships. J Gerontol Soc Work. 2010;53(8):682–701.

Cooklin A. Children as carers of parents with mental illness. Psychiatr. 2006;5(1):32–5.

Harstone A, Charles G. Children of parents with mental illness: young caring, coping and transitioning into adulthood. Relational Child and Youth Care Practice (RCYCP). 2012;25(2):14–27.

Doutre G, Green R, Knight-Elliott A. Listening to the voices of young carers using interpretative phenomenological analysis and a strengths-based perspective. Educ Child Psychol. 2013;30(4):30–43.

DellmannJenkins M, Blankemeyer M, Pinkard O. Young adult children and grandchildren in primary caregiver roles to older relatives and their service needs. Fam Relat. 2000;49(2):177–86.

Fruhauf CA, Orel NA. Developmental issues of grandchildren who provide care to grandparents. Int J Aging Hum Dev. 2008;67(3):209–30.

Orel NA, Dupuy P, Wright J. Auxiliary caregivers: the perception of grandchildren within multigenerational caregiving environments. J Intergener Relatsh. 2004;2(2):67–92.

Aldridge J, Becker S, editors. Children who care: inside the world of young carers. Loughborough University: Department of Social Sciences; 1993.

Beach DL. Family caregiving: the positive impact on adolescent relationships. The Gerontologist. 1997 Apr 1;37(2):233–8.

Brimblecombe N, Pickard L, King D, Knapp M. Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for. Health Soc Care Comm. 2017;25(2):435–46.

Rutherford A, Bu F. Issues with the measurement of informal care in social surveys: evidence from the English longitudinal study of ageing. Ageing Soc. 2018;38(12):2541–59.

Eurocarers. Young carers policy paper. 2019. https://eurocarers.org/publications/eurocarers-policy-paper-on-young-carers/ . Accessed 24 Oct 2019.

Stamatopoulos V. One million and counting: the hidden army of young carers in Canada. J Youth Stud. 2015;18(6):809–22.

Australian Bureau of Statistics Census of Population and Housing: Reflecting Australia-Stories from the Census. 2016 https://www.abs.gov.au/ausstats/[email protected]/Lookup/by%20Subject/2071.0~2016~Main%20Features~Young%20Carers~143#:~:text=The%20Census%20found%20that%20there,of%20all%20households%20in%20Australia.&text=Young%20carer%20households%20were%20more,were%20not%20carers%20(20%25) . Accessed 4 Nov 2019.

Office for National Statistics. Providing unpaid care may have an adverse effect on young carers’ general health. 2013. https://webarchive.nationalarchives.gov.uk/20160107224205/ http://www.ons.gov.uk/ons/rel/census/2011-census-analysis/provision-of-unpaid-care-in-england-and-wales--2011/sty-unpaid-care.html. Accessed 15 Oct 2019.

Me-We Consortium. Enabling young carers to pursue their goals in life and reach their full potential. European policy brief 2019. https://me-we.eu/wp-content/uploads/2019/05/Me-We-European-brief.pdf . Accessed 20 Sep 2019.

Santini S, Socci M, D’Amen B, Di Rosa M, Casu G, Hlebec V, Lewis F, Leu A, Hoefman R, Brolin R, Magnusson L, Hanson E. Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice. Int J Environ Res. 2020;17(18):6593.

Joseph S, Sempik J, Leu A, Becker S. Young carers research, practice and policy: an overview and critical perspective on possible future directions. Adolescent Res Rev. 2020;5(1):77–89.

Becker S. Global perspectives on children’s unpaid caregiving in the family: research and policy on ‘young carers’ in the UK, Australia, the USA, and sub-Saharan Africa. Glob Soc Policy. 2007;7(1):23–50.

Dellmann-Jenkins M, Brittain L. Young adults’ attitudes toward filial responsibility and actual assistance to elderly family members. J Appl Gerontol. 2003;22(2):214–29.

Hamill SB. Caring for grandparents with Alzheimer’s disease: help from the “forgotten” generation. J Fam Issues. 2012;33(9):1195–217.

Orel NA, Dupuy P. Grandchildren as Auxiliary Caregivers for Grandparents with Cognitive And/or Physical Limitations: Coping Strategies and Ramifications. Child Study J. 2002;32(4):193–214.

Cree VE. Worries and problems of young carers: issues for mental health. Child Fam Soc Work. 2003;8(4):301–9.

Hill S. The physical effects of caring on children. J Young Carers Work. 1999;3(1):6–7.

Early L, Cushway D, Cassidy T. Perceived stress in young carers: development of a measure. J Child Fam Stud. 2006;15(2):165–76.

JärkestigBerggren U, Bergman AS, Eriksson M, Priebe G. Young carers in Sweden - a pilot study of care activities, view of caring, and psychological well-being. Child Fam Soc Work. 2019;24(2):292–300.

Thomas N, Stainton T, Jackson S, Cheung WY, Doubtfire S, Webb A. Your friends don’t understand’: invisibility and unmet need in the lives of ‘young carers. Child Fam Soc Work. 2003;8:35–46.

Carers Trust. Invisible and in distress: prioritising the mental health of England’s young carers. 2016. https://carers.org/invisible-and-distress-prioritising-mental-health-englands-young-carers . Accessed 4 Nov 2019.

Hamilton MG, Adamson E. Bounded agency in young carers’ lifecourse-stage domains and transitions. J Youth Stud. 2013;16(1):101–17.

Becker S, Leu A. Young carers. In: Montgomery H, editor. Oxford bibliographies in childhood studies. New York: Oxford University Press; 2014. p. 1–21.

Greene J, Cohen D, Siskowski C, Toyinbo P. The relationship between family caregiving and the mental health of emerging young adult caregivers. J Behav Health Serv Res. 2017;44:551–63.

Hoyt MA, Mazza MC, Ahmad Z, Darabos K, Applebaum AJ. Sleep quality in young adult informal caregivers: understanding psychological and biological processes. Int J Behav Med. 2020; https://doi.org/10.1007/s12529-019-09842-y .

Pakenham KI, Bursnall S, Chiu J, Cannon T, Okochi M. The psychosocial impact of caregiving on young people who have a parent with an illness or disability: comparisons between young caregivers and noncaregivers. Rehabil Psychol. 2006;51(2):113–26.

Petticrew M, Roberts H. Systematic reviews in the social sciences: a practical guide. Oxford: Blackwell Publishing; 2006.

Book   Google Scholar  

Yates ME, Tennstedt S, Chang BH. Contributors to and mediators of psychological well-being for informal caregivers. J Gerontol B Psychol Sci. 1999;54:12–22.

Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontology. 1990;30:583–94.

CAS   Google Scholar  

Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A. Measuring caregiving appraisal. J Gerontol B Psychol. 1989;44:61–71.

Lawton MP, Moss M, Kleban MH, Glicksman A, Rovine M. A two-factor model of caregiving appraisal and psychological wellbeing. J Gerontol B Psychol Sci. 1991;46:181–9.

Hong QN, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, et al. Mixed Methods Appraisal Tool (MMAT), version 2018. Registration of copyright (#1148552). Canadian Intellectual Property Office, Industry Canada. http://mixedmethodsappraisaltoolpublic.pbworks.com/w/file/fetch/127916259/MMAT_2018_criteria-manual_2018-08-01_ENG.pdf . Accessed 20 Jun 2019.

Pluye P, Gagnon MP, Griffiths F, Johnson-Lafleur J. A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. Int J Nurs Stud. 2009;46(4):529–46.

Glaser B, Strauss AL, editors. The discovery of grounded theory strategies for qualitative research. Chicago: Aldine Publishing; 1967.

United Nations. World Population Prospects: The 2017 Revision. 2017. https://population.un.org/wpp/Publications/Files/WPP2017_DataBooklet.pdf . Accessed 17 Sep 2019.

Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Inter Med. 2009;151(4):264–9.

Dellmann-Jenkins M, Blankemeyer M, Pinkard O. Incorporating the elder caregiving role into the developmental tasks of young adulthood. Int J Aging Hum Dev. 2001;52(1):1–8.

Blanton PW. Family caregiving to frail elders: experiences of young adult grandchildren as auxiliary caregivers. J Intergener Relatsh. 2013;11(1):18–31.

Lim MG, Jennings GH. Marital satisfaction of healthy differentiated and undifferentiated couples. Fam J (TFJ). 1996;4(4):308–15.

Penick N, Jepsen D. Family functioning and adolescent career development. Career Dev Q. 1992;40(3):208–22.

Joseph S, Becker S, Becker F. Manual for measures of caring activities and outcomes for children and young people. 2009. http://www2.westsussex.gov.uk/LearningandDevelopment/MPG/L149%20p208%20Young%20carers%20manual_for_measures_outcomes.docx . Accessed 21 Aug 2020.

Chappell NL, Reid RC. Burden and well-being among caregivers: examining the distinction. Gerontologist. 2002;42:772–80.

Bertrand RM, Fredman L, Saczynski J. Are all caregivers created equal? Stress in caregivers to adults with and without dementia. J Aging Health. 2006;18(4):534–51.

Evans BC, Coon DW, Belyea MJ, Ume E. Collective care: multiple caregivers and multiple care recipients in Mexican American families. J Transcult Nurs. 2017;28(4):398–407.

Odyssey Institute for Training and Education and UNESCO Institute for Education. International Conference on Intergenerational Programmes. 1999; Maastricht, the Netherlands.

Newmann S, Hatton-Yeo A. Intergenerational learning and the contribution of older people. Ageing Horizons. 2008;8:31–9.

Kaplan M, Wagner J, Larson C. Child care/senior adult care links: making them work. NHSA Dialog: A Research-to-Practice Journal for the Early Intervention Field. 2001;4(3):384–402.

Kaplan M, Larkin E. Launching intergenerational programs in Early childhood settings: a comparison of explicit intervention with an emergent approach. Early Child Educ J. 2004;31:157–63.

Davis RH, Westbrook GJ. Intergenerational dialogues: a tested educational program for children. Educ Gerontol. 1981;7:383–96.

Download references

Acknowledgements

The authors would like to thank researchers, professionals and organisations who contributed to the ME-WE project. In particular, authors thank the partner organisations of the ME-WE project (www.me-we.eu), namely: Linnaeus University (Sweden), coordinator; Eurocarers (Belgium); University of Sussex (United Kingdom); Carers Trust (United Kingdom); Kalaidos University of Applied Sciences (Switzerland); Netherlands Institute for Social Research (Netherlands); Vilans (Netherlands); National Institute of Health and Science on Ageing (IRCCS INRCA) (Italy); Anziani e Non Solo (Italy); University of Ljubljana (Slovenia).

The study was conducted in the framework of the ME-WE project, which has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 754702. This work was also partially supported by Ricerca Corrente funding from Italian Ministry of Health to IRCCS INRCA. This funding body did not play any role in designing the study nor in data collection, analysis and interpretation, nor in writing this paper.

Author information

Authors and affiliations.

Centre for Socio-Economic Research on Aging, IRCCS INRCA - National Institute of Health and Science on Aging, Via Santa Margherita 5, 60124, Ancona, Italy

Barbara D’Amen, Marco Socci & Sara Santini

You can also search for this author in PubMed   Google Scholar

Contributions

BD conceptualised and designed the study and drafted the manuscript. MS, SS assisted with the study design. BD, MS and SS analysed the data. All authors provided intellectual content to the manuscript, critical feedback and approved the final version.

Corresponding author

Correspondence to Marco Socci .

Ethics declarations

Ethics approval and consent to participate.

Not applicable as this was a systematic review.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no conflicts of interest.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

D’Amen, B., Socci, M. & Santini, S. Intergenerational caring: a systematic literature review on young and young adult caregivers of older people. BMC Geriatr 21 , 105 (2021). https://doi.org/10.1186/s12877-020-01976-z

Download citation

Received : 19 February 2020

Accepted : 21 December 2020

Published : 05 February 2021

DOI : https://doi.org/10.1186/s12877-020-01976-z

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Young caregivers
• Young adult caregivers
• Older people
• Systematic literature review
• Mixed methods appraisal tool (MMAT)

BMC Geriatrics

ISSN: 1471-2318

• General enquiries: [email protected]

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings
• My Bibliography
• Collections
• Citation manager

Save citation to file

Email citation, add to collections.

• Create a new collection
• Add to an existing collection

Add to My Bibliography

Your saved search, create a file for external citation management software, your rss feed.

• Search in PubMed
• Search in NLM Catalog
• Add to Search

Caregiving for ageing parents: A literature review on the experience of adult children

Affiliations.

• 1 36513University of Humanistic Studies, The Netherlands.
• 2 120694Tilburg University, The Netherlands.
• PMID: 31755349
• DOI: 10.1177/0969733019881713

Background: More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.

Aim: This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.

Method: A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The 'SPIDER' eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.

Ethical consideration: Ethical requirements were respected in every phase of the research process.

Findings: Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children's caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.

Discussion: Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.

Conclusion: Caring for ageing parents is a continuous quest for giving the best possible care and living up to one's personal values, within the context of the parent's declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

Keywords: Ageing parents; filial caregiving experience; review.

PubMed Disclaimer

Similar articles

• Changing dynamics of caregiving: a meta-ethnography study of informal caregivers' experiences with older immigrant family members in Europe. Shrestha S, Arora S, Hunter A, Debesay J. Shrestha S, et al. BMC Health Serv Res. 2023 Jan 17;23(1):43. doi: 10.1186/s12913-023-09023-4. BMC Health Serv Res. 2023. PMID: 36650497 Free PMC article. Review.
• Normative tensions in filial caring for a mother with dementia: A narrative perspective. Luichies I, Goossensen A, van der Meide H. Luichies I, et al. Dementia (London). 2021 Nov;20(8):2766-2778. doi: 10.1177/14713012211014003. Epub 2021 Apr 29. Dementia (London). 2021. PMID: 33913773
• Moral aspects of filial concern for a parent living with dementia: Social imaginaries in contemporary narratives. Luichies I, van der Meide H, Goossensen A. Luichies I, et al. J Aging Stud. 2024 Jun;69:101233. doi: 10.1016/j.jaging.2024.101233. Epub 2024 May 16. J Aging Stud. 2024. PMID: 38834248
• Understanding the experience of adult daughters caring for an ageing parent, a qualitative study. Lopez Hartmann M, Anthierens S, Van Assche E, Welvaert J, Verhoeven V, Wens J, Remmen R. Lopez Hartmann M, et al. J Clin Nurs. 2016 Jun;25(11-12):1693-702. doi: 10.1111/jocn.13195. Epub 2016 Feb 16. J Clin Nurs. 2016. PMID: 26879727
• A qualitative meta-synthesis of the caregiving experiences of adult children providing care for cancer patients in China: Implications for multidisciplinary healthcare teams. He L, Wu H, Li M, Deng X. He L, et al. Health Soc Care Community. 2022 Nov;30(6):e3829-e3842. doi: 10.1111/hsc.14073. Epub 2022 Oct 19. Health Soc Care Community. 2022. PMID: 36259247 Review.
• Acceptance Theory of Family Caregiving. Feliciano A, Feliciano E, Palompon D, Gonzales F. Feliciano A, et al. Belitung Nurs J. 2022 Apr 26;8(2):86-92. doi: 10.33546/bnj.2004. eCollection 2022. Belitung Nurs J. 2022. PMID: 37521897 Free PMC article.
• Dyadic relationship, carer role, and resources: a theory-driven thematic analysis of interviews with informal carers focusing on the stability of home-based care arrangements for people living with dementia. Köhler K, Dreyer J, Hochgraeber I, Pinkert C, von Kutzleben M, Holle B, Roes M. Köhler K, et al. BMC Geriatr. 2022 Nov 28;22(1):908. doi: 10.1186/s12877-022-03618-y. BMC Geriatr. 2022. PMID: 36437442 Free PMC article.
• Association between living arrangements and cognitive decline in older adults: A nationally representative longitudinal study in China. Yu Y, Lv J, Liu J, Chen Y, Chen K, Yang Y. Yu Y, et al. BMC Geriatr. 2022 Nov 8;22(1):843. doi: 10.1186/s12877-022-03473-x. BMC Geriatr. 2022. PMID: 36348275 Free PMC article.
• Ethical considerations in design and implementation of home-based smart care for dementia. Hine C, Nilforooshan R, Barnaghi P. Hine C, et al. Nurs Ethics. 2022 Jun;29(4):1035-1046. doi: 10.1177/09697330211062980. Epub 2022 Feb 1. Nurs Ethics. 2022. PMID: 35105196 Free PMC article. Review.

Publication types

• Search in MeSH

LinkOut - more resources

Full text sources.

• Ovid Technologies, Inc.
• MedlinePlus Health Information

Miscellaneous

• NCI CPTAC Assay Portal

• Citation Manager

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List

Assessing the impact of caregiving on informal caregivers of adults with a mental disorder in OECD countries: A systematic literature review of concepts and their respective questionnaires

Leonarda g. m. bremmers.

Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands

Isabelle N. Fabbricotti

Eleonora s. gräler, carin a. uyl-de groot, leona hakkaart-van roijen, associated data.

All relevant data are within the paper and its Supporting information files.

We conducted a systematic literature review to identify and review the concepts and questionnaires used to assess the impact of caregiving on caregivers for adults with a mental disorder. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts. Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit and Google Scholar were systematically searched for articles from 1 January 2004 to 31 December 2019. Eligible articles were peer-reviewed studies that assessed the impact of caregiving for informal caregivers of adults with a reported mental disorder by means of a questionnaire. The complete study protocol can be found on PROSPERO (CRD42020157300). A total of 144 questionnaires were identified that assessed the impact of caregiving. Based on similarities in meaning, concepts were classified into 15 concept clusters. The most frequently assessed concept clusters were mental health, caregiving burden, other caregiving consequences, family impact, and overall health-related outcomes. The use of concept clusters differed per diagnosis group, with diagnoses, such as schizophrenia, using a wide range of caregiving impact concepts and other diagnoses, such as personality disorders, only using a limited range of concepts. This is the first study that identified and reviewed the concepts and questionnaires that are used to assess the impact of caregiving. Caregiving is researched from a broad array of perspectives, with the identification of a variety of concepts and dimensions and use of non-specific questionnaires. Despite increasing interest in this field of research, a high degree of variability remains abundant with limited consensus. This can partially be accredited to differences in the naming of concepts. Ultimately, this review can serve as a reference to researchers who wish to assess the impact of caregiving and require further insight into concepts and their respective questionnaires.

Introduction

The mid-twentieth century saw a rise in the international consensus on the need for decentralized psychiatric care and new policy strategies for mental health patients. This consensus resulted in a radical deinstitutionalization movement across the USA, England, Continental Europe, and Scandinavia, with other countries later following suit [ 1 ]. The movement was characterized by a shift of care from the institutions to community-based services, with a strong focus on the reintegration and rehabilitation of patients [ 1 , 2 ]. However, fragmented community-based services often fail to address patients’ complex health needs [ 2 ], as suggested by the high prevalence of incarceration, homelessness, loneliness, victimization, and poor physical health outcomes of patients [ 2 – 6 ]. Consequently, patients are increasingly reliant on the care and support provided by their loved ones, hereinafter referred to as informal care [ 7 , 8 ]. The health care sector relies heavily on informal care, as it complements and substitutes services provided by formal care providers [ 9 – 12 ].

The provision of informal care is often characterized as a significant source of distress for the loved ones of patients and can have a detrimental impact on their daily lives and wellbeing [ 13 ]. Hence, the impact of caregiving should be considered in healthcare practice and policy [ 14 , 15 ]. Perspectives on the impact of caregiving and mental illness have evolved with the introduction of deinstitutionalization [ 16 , 17 ]. Before the turn of the century, caregiver research centered on two concepts, the negative impact of the patient on the caregiver (i.e., caregiving burden) and the negative impact of the caregiver on the patient (i.e., expressed emotion). This research was largely concentrated on caring for patients with schizophrenia; however, burden was also assessed for caregivers of patients with mood disorders. Over the decades, additional concepts have been developed to assess the rewarding aspects of caregiving, such as caregiving reward [ 18 ]. However, Harvey et al. found that caregiver outcomes reported in peer-reviewed articles are still restricted in scope and primarily focus on wellbeing, the caregiving experience, and need for professional support [ 19 ].

Despite the impact of caregiving being studied since the start of deinstitutionalization [ 18 ], the operationalization and conceptualization of these concepts has received limited academic attention [ 20 ]. There are a limited number of conceptual frameworks grounded in psychological and social theories for this caregiving population, with the existing frameworks primarily focused on familial responses to mental disorders [ 21 ]. Consequently, researchers report an inconsistent use of theoretical definitions and operationalization across the same concepts [ 21 , 22 ]. Ergo, the conceptualization and operationalization of the impact of caregiving may vary greatly between studies. To the best of our knowledge, no systematic literature review has yet investigated the conceptualization and operationalization of the impact of caregiving in this caregiver population. A literature review conducted by Schene, Tessler, and Gamache compiled caregiving questionnaires and their respective domains; however, this was limited to one concept, namely caregiving burden [ 23 ].

A complete overview of the conceptualization and operationalization of the impact of caregiving could improve the understanding of these concepts [ 24 ] and aid in determining how they are used in scientific research. By systematically identifying the similarities and discrepancies of concepts and their respective dimensions across questionnaires, an in-depth insight can be gained into the perspectives that are used in caregiver research. These insights may help researchers to select the appropriate concepts and questionnaires and improve comparability of results across studies. Therefore, we conducted a systematic literature review to identify and review the concepts and questionnaires that are used to assess the impact of caregiving on caregivers for adult patients with mental disorders in OECD countries. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts.

This systematic literature review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Refer to S1 Table for the completed PRISMA checklist [ 25 ]. The complete study protocol is registered on PROSPERO (CRD42020157300).

Search strategy and data sources

The search strategy was constructed a priori with an information specialist using terms related to “informal caregivers,” “mental disorders,” and “questionnaires” [ 26 ]. On December 6, 2019, Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit, and Google Scholar were searched. The search was restricted to include articles published from January 1, 2004, onwards. For the complete search strategy refer to S1 File .

Selection criteria

We included quantitative and mixed-method studies published in scientific journals, which reported original data and assessed the impact of caregiving by means of a questionnaire. The informal caregivers had to provide care and support to adults with a reported mental disorder. Relevant mental disorders were identified with the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders [ 27 ]. Neurocognitive disorders and delirium were not considered, because the nature of these disorders and conditions is not comparable to other mental disorders [ 28 ] and thus has a significant impact on the reported caregiving experience [ 29 , 30 ]. Additionally, care recipients with a physical comorbidity were excluded because they have different care needs and their caregivers are at a higher risk for adverse outcomes and events [ 31 – 34 ]. Care recipients and caregivers had to be at least 18 years of age. Studies needed to be conducted in countries within the Organization for Economic Co-operation and Development (OECD) region [ 35 ] to avoid cultural specificity that could be caused by differing cultural norms and perceptions [ 19 ]. Lastly, the review was restricted to empirical and peer-reviewed studies that were published in English.

Selection of studies

Prior to the formal screening of hits, the selection criteria were piloted and adjusted amongst the research team (LB, LH, IF) using a randomly selected sample of hits (n = 50). A four-stage screening process was implemented using the selection criteria. First, all search hits were imported into Endnote X6, and duplicates were removed using a reproducible de-duplication method [ 36 ]. Second, title and abstract screening were conducted by two independent reviewers (LB, EG). Any disagreements concerning title and abstract eligibility were discussed with the other members of the research team (IF, LH). Third, the full-text articles were retrieved if the review criteria were met or if there was insufficient information in the abstract to assess eligibility. Fourth, full texts were independently screened by two reviewers (LB, IF) and those that met the inclusion criteria were included [ 25 ]. Any disagreements concerning article eligibility were discussed with a third reviewer from the research team (LH).

Data extraction

Data were extracted by the primary researcher (LB) using a data extraction matrix. Relevant data included: country, study design, disorder of care recipient, questionnaire name, questionnaire author, concept studied, dimensions, operationalization of each dimension, and the original target population of the questionnaire. Given that some of the questionnaire data were not reported in the articles, it was sometimes necessary to refer to the questionnaires’ reported source article(s).

Data analysis

All concepts were clustered according to the common phenomenon that they assessed. These clusters formed concept clusters which were then titled using the higher-order concept that they assessed. The concept clusters were generated by LB and then reviewed by the other co-authors (IF, CU and LH).

Meta summaries [ 37 ] were generated for each concept cluster and reported the dimensions of each questionnaire, including their operationalization. If the operationalization of the dimensions could not be found, then this was reported in the meta-summary as “not reported” (NR). For each meta summary, dimensions were grouped by theme. An overview and explanation of all relevant terms can be found in Table 1 .

To investigate trends, the extracted data were grouped by concept clusters and graphed against the number of times it was assessed from 2004–2019. Additionally, the assessment of concept clusters was determined per diagnosis group.

Literature review and study characteristics

The systematic search yielded a total of 24,314 reference with 9,772 duplicates. Title and abstract screening resulted in the exclusion of 13,659 papers. A total of 883 full-text articles were reviewed. The main reasons for full-text exclusion were, as follows: did not assess the impact of caregiving (n = 236), performed in non-OECD country (n = 98) or was not a peer-reviewed article (n = 91). A total of 173 papers fulfilled the eligibility criteria and were included ( Fig 1 ).

All articles reported observational study designs, including cross-sectional (n = 131, 75%), case-control (n = 21, 12%), prospective cohort study designs (n = 19, 11%), and case-control and cross-sectional (n = 3, 2%). These studies were conducted in OECD countries across Asia, Australia, Europe, North America, and South America, with a majority of the studies being conducted in the United States of America (n = 33, 19%), the United Kingdom (n = 30, 17%), and Spain (n = 26, 15%). A variety of mental disorders were studied; however, the most common disorders were schizophrenia and other primary psychotic disorders (n = 72, 41%), depressive disorders (n = 19, 11%) and eating disorders (n = 19, 11%). Forty-seven of the articles (27%) did not specify the mental disorder that was studied. For a comprehensive list of study characteristics refer to S2 Table .

Description of questionnaires

A total of 144 questionnaires were identified that assessed the impact of caregiving. Impact of caregiving concepts were categorized into 15 concept clusters, namely caregiving burden , caregiving needs , caregiver service use , characteristics of caregivers , conceptions of mental illness , family impact , mental health , overall caregiving situation , physical health , overall health , quality of life , satisfaction , social impact , work impact , and other caregiving consequences , ( Table 2 ). Three types of questionnaires were identified based on the original target population, namely “specific mental disorder” (n = 32; 22%) “non-specified mental disorder” (n = 46; 32%) and “other” (n = 67; 46%). The specific mental disorders were autism spectrum disorder (n = 3), eating disorders (n = 3), mood disorders (n = 4), personality disorders (n = 4), and primary psychotic disorders (n = 15), and primary psychotic disorders and personality disorders (n = 2). A total of 20 non-validated questionnaires (13%) were identified that were specifically developed for the purpose of those studies.

Impact of caregiving

Conceptualization and operationalization.

The concept clusters are described in detail below. The dimensions and operationalization of each concept (cluster), including all references, can be found in the meta-summaries reported in the S2 File .

Caregiving burden . Caregiving burden assesses the strain and negative consequences of caregiving, with objective and subjective burden emerging as two distinct conceptualizations. Objective burden is the negative occurrences that resulted from caregiving, including the interruption of personal time, missing work, and financial strain. Subjective burden are the affective responses exhibited by the informal caregiver due to their caregiving, including subjective worry and distress. Caregiving burden was assessed for individual caregivers and families that took on a caregiving role. From 28 questionnaires, a total of 70 dimensions were identified. Caregiving burden was operationalized into overall caregiving burden, the impact of caregiving on their daily lives and wellbeing, the caregiver-care recipient relationship, and self-rated incompetence. Overall caregiving burden was assessed as non-specific evaluations of objective and subjective burden and the duration of various caregiving tasks. The impact of caregiving included negative and positive consequences that affected the caregiver’s appraisal of their caregiving situation, their care recipient, and their everyday lives. The effect of caregiving on the caregiver’s everyday life was widespread and included their health, wellbeing, financial situation, work, leisure, and relationships. The effect of caregiving on the family focused on the dynamics of the household, the relationship with their partner, and the impact on individual family members, especially the children. The framing of the caregiver-care recipient relationship was negative and focused on tensions that existed due to the care recipient’s condition and the caregiving situation. Caregiver incompetence was operationalized as the caregiver’s valuation of their caregiving abilities.

Caregiving needs . Caregiving needs refers to the desires and necessities of the informal caregiver due to their caregiving responsibilities. These needs were identified for the family, relatives and other individuals that took on the caregiving role. A total of nine questionnaires operationalized caregiving needs into 25 dimensions. Needs were identified in relation to the caregiving situation and the personal life of the caregiver. Caregiving situation needs were the needs for caregiver support and other needs related to the care recipient’s symptoms and behavior. Caregiver support was identified for different caregiving tasks and caregiver support services. Additionally, caregiver needs in their personal life were identified and operationalized for the caregiver’s social life, work/study, and finances.

Caregiver service use . Caregiver service use is conceptualized as the informal caregiver’s utilization of informal and formal services due to their informal care provision. Caregiver service use was operationalized by six questionnaires into six dimensions. Overall service use was identified as a general service use dimension that considered service use from medical services, community-based and criminal justice service contacts, and different forms of caregiver support use. Caregiver support services included assistance provided to the caregiver on behalf of a variety of informal and formal community-based sources. Medical care use were dimensions that assessed specialized health service utilization (i.e., mental, and physical health services) and primary care service utilization.

Characteristics of caregivers . Characteristics of caregivers are concepts that defined the daily lives of informal caregivers and were impacted by caregiving. Four questionnaires operationalized these concepts into 19 dimensions. These dimensions assessed different aspects of the informal caregiver’s daily life, their caregiving intentions for the future, and sense of coherence. The informal caregiver’s daily life concerned stressful events that could occur, their religion, their involvement in the community, and self-care priorities. The intention to provide care was assessed for different caregiving tasks that the individual would be willing to perform in the future. Sense of coherence refers to the adaptive dispositional orientation of a person that enables them to cope with adverse experiences.

Conceptions of mental illness . Conceptions of mental illness is defined as the informal caregiver’s personal understanding and opinions of mental illness and their care recipient and considered how this was affected by caregiving. This was conceptualized as the informal caregiver’s overall knowledge and their assessment of disease-related behaviors and attitudes. A total of six questionnaires was operationalized into 25 dimensions. Knowledge and understanding of mental disorders were the caregiver’s understanding of the different stages of the patient’s disease trajectory. Stigma emerged as a separate dimension, which concerned the negative or false personal beliefs that the caregiver may have about mental illness or individuals suffering from a mental illness. Personal blame assessed the caregiver’s attribution of blame directed towards themselves and the care recipient for the mental disorder.

Family impact . Family impact is conceptualized as the positive and negative consequences that caregiving and the care recipient have on the family unit. These concepts assessed the family’s dynamics and the family caregiver’s attitudes towards specific mental disorders. Sixteen questionnaires operationalized family impact into 42 dimensions. The dimensions assessed family functioning and communication, expressed emotion, and characterized the family’s caregiving situation. Different aspects relating to family functioning were identified, such as the family’s ability to problem solve and family cohesion. Expressed emotion is a measure of the family environment based on how family members spontaneously talk about their mentally ill relative [ 195 ]. The caregiving situation was characterized by the caregiving tasks that were performed and the family’s responses to caregiving and the care recipient.

Mental health . Mental health refers to informal caregiver’s diagnosable psychiatric disorders, psychological wellbeing and distress, and emotional wellbeing measures that were impacted by caregiving. Thirty-three questionnaires assessed mental health concepts and operationalized them into 65 dimensions. Several psychiatric disorders were operationalized, namely burnout, mood disorders, anxiety disorders, obsessive compulsive disorders, and primary psychotic disorders. Dimensions assessing subjective sense of personal worth were found that assessed the informal caregiver’s purpose in life and personal growth. Negative dimensions relating to emotional wellbeing were identified, such as grief and stress. Environmental mastery is a dimension that assesses the informal caregiver’s self-rated sense of control and competence in managing their external environment and making effective use of their surrounding opportunities. Overall psychological measures were operationalized as either negative (i.e., psychological distress) and positive dimensions (i.e., psychological wellbeing).

Overall caregiving situation . Overall caregiving situation refers to the informal caregiver’s appraisal of their caregiving experience and their involvement in the care recipient’s care. A total of 9 questionnaires assessed the overall caregiving situation . From these questionnaires, 29 dimensions were identified. These dimensions assessed the informal caregiver’s appraisal of their caregiving abilities and situation, caregiver support, and care recipient characteristics. The informal caregiver’s appraisal of their caregiving abilities was largely comprised of self-efficacy. Self-efficacy is the informal caregiver’s perceived ability to succeed in specific situations. Caregiver’s appraisal of their caregiving situation was operationalized into negative and positive dimensions that assessed specific aspects of their caregiving situation, such as interaction guilt and good aspects of the relationship. Caregiving support is the availability and quality of particular caregiver support services. The informal caregiver’s appraisal of the care recipient included negative behaviors, symptoms, and aggression exhibited by the care recipient.

Physical health . Physical health is conceptualized as the caregiver’s overall physical health and specific physical ailments that were impacted by caregiving. From six questionnaires, a total of 14 dimensions were identified. Physical health was operationalized into general health-related characteristics, overall physical health, and physical conditions. General health-related characteristics are factors that may influence the caregiver’s overall physical health, including lifestyle and demographic measures. Overall physical health is the caregiver’s self-rated poor physical health days. Physical conditions are a range of disorders across the major human bodily systems.

Overall health . Overall health is conceptualized as the informal caregiver’s general health status, functioning, and wellbeing due to caregiving. A total of 9 questionnaires assessed overall health and was operationalized into 41 dimensions. The dimensions included the caregiving situation and the informal caregiver’s overall health status. In relation to the caregiving situation, negative characteristics of the care recipient, day-to-day life as a caregiver, safety, and the caregiver-care recipient relationship were identified as relevant domains. Overall health was operationalized as the caregiver’s overall functioning, health, and social wellbeing.

Quality of life . Quality of life is the overall quality of life measures that were impacted by caregiving. Quality of life was conceptualized as general quality of life measures and quality of life measures related to the care and health domains. Six questionnaires operationalized quality of life into 24 dimensions. The domains assessed the caregiver’s environment, which refers to their financial resources, residence, socioeconomic status, and physical environment. The family of the caregiver was evaluated, wherein the dimensions considered the interactions between family members and their overall happiness. Caregiver health was operationalized into domains that assessed their ability to function in terms of their mental, physical, and overall health.

Satisfaction . Satisfaction is defined as a measure of the informal caregiver’s overall fulfilment of their expectations, needs, and wishes in relation to their caregiving situation and other aspects of their life. The concepts were evaluated for families and other individuals that took on the caregiving role. Seven questionnaires operationalized satisfaction into 21 dimensions. Satisfaction with life was operationalized as the informal caregiver’s life being close to ideal, having the important things that they want in life, and having no desire to change anything if they could live their life over. Satisfaction with caregiver support was the caregiver’s satisfaction with respite care, their support from different health providers, and caregiver’s involvement in the care recipient’s treatment. Family satisfaction is satisfaction relating to the functioning of the family as a whole and between spouses.

Social impact . Social impact are the consequences of caregiving on the informal caregiver’s social life and was conceptualized as experienced stigma, social participation, and negative social impact. The concepts were operationalized by six questionnaires with a total of 16 dimensions. The dimensions included the nature of social contacts, social support and participation, and stigma. The nature of social contacts was framed as negative social consequences and the frequency of contact. Negative social consequences included social isolation and rejection. Two different types of social support were identified, namely emotional and practical social support. Social participation evaluated engagement in activities and community-based organizations, such as charitable organizations.

Work impact . Work impact refers to the impact that caregiving had on the informal caregiver’s paid and unpaid work. Three questionnaires assessed work impact-related concepts. From these questionnaires, eight dimensions were identified. These dimensions included productivity loss, labor force participation, and sources of income. Two types of productivity loss were operationalized, namely absenteeism and presenteeism.

Other caregiving consequences . Other caregiving consequences includes impact of caregiving measures that were not domain specific. A total of 10 questionnaires were identified. These concepts were operationalized into 30 dimensions. These dimensions classified consequences based on who was affected by the caregiving situation. Other consequences for the caregiver were operationalized by questionnaires as negative and positive framing of consequences and included consequences for their daily lives, self-development, the relationship with the care recipient, and the caregiving situation.

Trends in concept cluster use

The five most frequently assessed concept clusters were mental health (n = 75), caregiving burden (n = 65), other caregiving consequences (n = 30), family impact (n = 22), and overall health (n = 22). Mental health and caregiving burden had distinct increases in assessment over the years compared to other concept clusters. The other concept clusters had no clear assessment trends, with some random assessment spikes.

Use of concept clusters per diagnosis group

Concept use was determined for all diagnosis groups ( Table 3 ). The distribution of concept use differed per diagnosis group. Select diagnosis groups, namely schizophrenia and other primary psychotic disorders, eating disorders, bipolar disorders, depressive disorders, and autism spectrum disorders, employed a broad scope in impact of caregiving. The other diagnosis groups only used a limited number of concept clusters. For anxiety disorders, autism spectrum disorder, bipolar and related disorders, eating disorders, personality disorders, schizophrenia and other primary psychotic disorders, and trauma- and stressor-related disorders, the most assessed concept cluster was mental health . Quality of life was the most assessed concept cluster for anxiety disorders and obsessive compulsive and related disorders. Caregiving burden was the top concept cluster for attention deficit hyperactivity disorder, depressive disorders, and substance-related and addictive disorders.

Notes . ADHD = attention deficit hyperactivity disorder; ASD = autism spectrum disorder; ED = eating disorders

This is the first systematic literature review to generate an overview of the questionnaires and concepts used to assess the impact of caregiving. We found that caregiving has a widespread impact on the lives of informal caregivers; however, the assessment of impact was often limited to domain specific measures. Moreover, there was a high degree of variability in the conceptualization and operationalization of the impact of caregiving. Despite the increasing number of publications in this field of research, there is no clear consensus on the use of concepts and questionnaires. The results of the review indicate that over the last 15 years, a variety of concepts were used to assess the impact of caregiving, irrespective of the type of mental disorder and timeframe. The variability can partly be accredited to the terminology used to define the respective area of impact. When concepts were clustered, the impact of caregiving was conceptualized into 15 concept clusters.

In our study, we found that the current conceptualization and operationalization of caregiving impact does not align with theoretical frameworks in the field. The current caregiving research paradigm aims to understand the experience of having a relative with a mental disorder [ 21 ] and allows for the negative and positive assessment of informal caregiving [ 196 ]. These theoretical models include theories of resilience [ 197 , 198 ] and stress-coping approaches [ 199 ] and form the basis of some of the questionnaires that were identified in the review, such as the Experience of Caregiving Inventory [ 22 ]. These respective concepts were classified as other caregiving consequences and overall caregiving situation and address the shortcomings of concepts that are not grounded in psychological and social theories (i.e., caregiving burden ). Caregiving burden is critiqued for being difficult to operationalize [ 21 , 22 ] and unable to recognize the rewarding aspects of caregiving [ 200 ]. However, as evidenced by our review, concepts such as caregiving burden remain popular in caregiving research. This could be due to the historical use of this concept in caregiving research [ 18 ] and methodological limitations of studies that support the negative assessment of informal caregiving [ 196 ].

The assessment of the caregiving impact differed across disease groups, with certain disease groups assessing a range of concepts and others only assessing a limited number of concepts. Further research is needed to determine whether the impact of caregiving is truly less widespread for particular disease groups. This trend appeared to correspond with the number of times that a disease group was studied. Schizophrenia and other primary psychotic disorders were the most studied disease group in our review and have received academic attention since the start of deinstitutionalization [ 18 ]. This may be due to the symptomology of primary psychotic disorders [ 201 ] and disease-related stigma [ 202 , 203 ]. Symptomology of disorders can have a significant impact on caregivers, regardless of diagnosis [ 204 ]. For example, positive symptoms of schizophrenia patients are received differently by caregivers than negative symptoms [ 201 ]. Similarly, caregiver burden has been found to fluctuate due to varying behavior exhibited by bipolar patients across manic and hypomanic episodes [ 205 ]. Nonetheless, peer-reviewed literature is generally focused on investigating the impact of caregiving for specific mental disorders and not symptoms [ 206 – 208 ].

The sensitivity of identified questionnaires may not be sufficient to detect the impact of caregiving for this study population, because almost half of the questionnaires were not originally developed for psychiatric disorders. The lived experiences of caregivers for patients with mental disorders are complex [ 209 ] and differ to that of other informal caregivers [ 33 , 210 ]. They are often left vulnerable to structural discrimination, which can adversely affect their social interactions and access to certain social roles [ 211 – 214 ]. Likewise, the symptoms of severe mental disorders have been identified as strong predictors of depression and anxiety [ 215 ]. Caregivers state that they often have difficulties understanding the symptoms and behavior of their loved ones [ 216 ]. They are also required to navigate fragmented medical, legal, and governmental systems to ensure that their loved ones receive adequate medical care. These formal systems often neglect the informal caregiver and undervalue their role [ 209 , 217 ]. Currently, limited data is available to determine the acceptability, reliability, and validity of questionnaires for this caregiving population [ 19 ]. However, the comparability of questionnaires across studies and conditions should also be considered when selecting a questionnaire.

Future research recommendations

The results of this review give an initial insight into the operationalization and conceptualization of the impact of caregiving; however, further research is needed to: (a) ensure the completeness of concepts and dimensions, (b) validate the formulation of our concept clusters, (c) explore the prioritization of concepts by informal caregivers, (d) determine whether the lived experiences of this caregiving population warrant the use of specific questionnaires, and (e) investigate how the conceptualization and operationalization of caregiving impact may differ across diagnosis groups.

Methodological limitations

There are some limitations that should be explored. Firstly, the paper should be scrutinized for categorical bias. Categorical bias could have occurred during the generation of the concept clusters because the process required a degree of personal interpretation. Secondly, the transferability of our findings to other cultural settings is limited, due to the exclusion of non-English publications and non-OECD research. The cultural norms and perceptions concerning informal caregiving has been found to vary greatly across countries and could have impacted our identification of concepts [ 19 ]. Thirdly, studies and questionnaires could not be identified for some mental disorders. These factors may have affected the selection of concepts and their respective operationalization. Lastly, the generalizability of our study was limited to adult caregivers and care recipients. The age of the care recipient and caregiver is a factor that not only alters the caregiving experience, but also plays a role in the impact of caregiving. For example, concepts such as parentification are not relevant for adults and was not included in our concept list but should be considered for minors [ 218 ].

Supporting information

NR = not reported.

Acknowledgments

The authors wish to thank dr. Maarten F. M. Engel from the Erasmus MC Medical Library for developing and updating the search strategies.

Funding Statement

The authors received no specific funding for this work.

Data Availability

Young Carers, The Overlooked Caregiving Population: Introduction to a Special Issue

• Published: 13 September 2021
• Volume 38 , pages 487–489, ( 2021 )

Cite this article

• Melinda S. Kavanaugh 1 &
• Vivian Stamatopoulos 2  

4306 Accesses

6 Citations

17 Altmetric

Explore all metrics

Avoid common mistakes on your manuscript.

“Young carers”, or “caregiving youth”, have existed on the fringes of the caregiving literature, programming and support for decades, beginning the UK in the early 1990’s (Leu & Becker, 2017 ), which has informed over two decades of targeted young carer programs, services and funding. Yet, the overall inclusion of children and youth into the larger caregiving literature has lagged, often due to social norms or expectations as to what constitutes a “caregiver” and what is considered outside the social constructs of the role children and youth have in families.

Despite these considerations children and youth caregivers persist, as does the extensive care they provide, in relative obscurity. Their hidden nature is exacerbated by their being left outside most state caregiving policy in the developed world, particularly North America, where in the US, national caregiving policy begins at the age of 18 (Kavanaugh et al., 2015 ) or in Canada, where supports are connected to income tax credits geared towards working adults (Stamatopoulos, 2015 ). The lack of attention paid to young carers, particularly in North America, was confirmed by an updated global comparison of in-country awareness and policy responses to young carers (Leu & Becker, 2017 ). Here, and as was the case in its preceding global typology (Becker, 2007 ), the United Kingdom retained its placement as the only “advanced” model of awareness, recognition and social service provisioning for young carers, with no country found to have a fully “incorporated/sustainable” set of legal rights and policy interventions to meet young carers’ needs and promote their overall health, well-being and development (Leu & Becker, 2017 ).

This special issue of Child and Adolescent Social Work Journal, addresses several of these issues, by drawing attention to the lack of research on young carers around the globe, the broader conceptualization and enumeration of these young people, the development of programs and services to support them and their family members, and the unequal conditions of care that are connected to intersecting axes of discrimination, including but not limited to gender, race/ethnicity, sexuality, disability and class.

To start off the special issue, Hendricks, Kavanaugh & Bakitas ( 2021a ) point to the overall lack of attention to young carers in their scoping review of primarily US young carer research. Building off an earlier 2015 scoping review conducted by Kavanaugh et al. ( 2015 ), which found a paltry 22 peer reviewed papers on young carers compared to the thousands of peer reviewed publications addressing adult caregivers, this updated review was only able to find an additional four publications over the ensuing 6 years. Indeed, very few questions poised in the initial review were answered given the small number of studies, including how caregiving varies by race/ethnicity and location. By underscoring the continued lack of attention and awareness paid to young carers in the US, often considered the leader of the developed world, this review re-affirms how far behind the US remains vis-a-vis the basic acknowledgement of the role children and youth play as caregivers, as well as the provision of care supports targeting their unique needs.

The second paper in the series provides an intersectional approach to the unequal conditions of care. In an ethnographic investigation of young carers and their families in the West Midlands (UK), Alexander  ( 2021 ) highlights the need for an expanded emphasis on how supportive policies take on a different character (i.e. more or less supportive, more or less punitive) dependent on the social location of the young carer. By drawing on positions of privilege, including but not limited to class, ‘race’/ethnicity and citizenship, Alexander reveals how important markers shape family circumstances and young carers’ experiences within those families. By drawing our focus to the heterogeneity of experience and supports within the broader young carer community, this research draws our focus to how policies can seek to improve and/or alter the experiences of young carers whose often intersecting inequalities contribute to further marginalization of their care work and access to available supports.

Third in the series, we have Bernardi, Chalmers & Heather’s  ( 2021 ) contribution highlighting the contradictions seen in adult caregivers—that of the ability to show compassion to others in the form of care, yet struggling with self-compassion. Young carers possessed high levels of compassion, yet were largely unable to feel self-compassion—or identify ways to care for themselves while also struggling to receive the same level of compassion from family members. Moreover, this problem was particularly pronounced among older young carers in the sample, where self-care was seen as a character flaw connected to selfishness and guilt for taking off time for self-care. By teasing out the contradiction whereby young carers are quick to help others before helping themselves, this study corroborated other research demonstrating the tendency of young carers, particularly older ones, to put the needs of others before their own.

Next up, Hendricks, Vo, Dionne-Odom & Bakitas  ( 2021b ) put a much-needed spotlight on those caregiving dynamics marked by the concept of “parentification” whereby the young carer takes on of adult roles and responsibilities as either a feature of parental neglect but also parental illness or incapacitation. By teasing out how a lack of support from self and family may have to do with how caregiving is conceptualized, and whether the role of the young carer crosses over into “parenting” the ill parent, this paper teases out the differences and similarities between the young carer and parentification literatures, which for long have been kept separate due to a resistance by young carer scholars to apply the concept of parentification to the case of young carers (Frederick et al., 2020 ). Using the Rodgers’ evolutionary method to amalgamate existing literature on parentification of young carers, the authors review 25 articles to then chart the antecedents, attributes and consequences of parentification among young carers. Their resulting framework provides a fruitful foundation for further research in this currently understudied area while helping to draw catered supports to parentified young carers in order to mitigate its more harmful consequences.

Whether the youth is parentified, or has a lack of support, what is exceedingly clear is the overall need for services for these young people, exemplified in Phelps’ ( 2021 ) paper. The UK has one of the most robust and well established young carer programming in the world, with the majority delivered at the community level with the intent to provide localized and targeted services However, not all young carer families are actually receiving the services. In an evaluation of young carer programs in the Hampshire area UK, Phelps details not only the services needed by young carers and their families, but specifically how the provision of services impacted the well-being of the family as a whole. Results highlight the many ways in which young carers are supported by no longer feeling alone, having similar peers and opportunities for respite. While parents feel supported by having access to staff members who understand their situation, with the opportunity to build relationships with these staff. These data underscore the critical need for not only localized services, but those run by staff who are dedicated to support and engagement with young carers and their families. Sadly, these programs are not replicated across the globe, primarily due to cost and lack of a socialized care system, but most critically due to a lack of awareness and attention paid to the role of young carers.

Kettell’s  ( 2021 ) contribution extends the conversation around young carer service provisioning by addressing the absence of a validated tool or measure with which to identify such young people for potential programming. With this in mind, Kettell set out to develop a global screening tool for use with young carers of a family member with a progressive or long-term illness or disability. By working in a participatory fashion with young carers and health, social care and education professionals from the UK, USA and Canada, the resulting Carers’ Alert Thermometer (CAT-YC) contains an identification question followed by 10 areas of need across two themes of ‘current caring situation’ and ‘carer’s health that can be used as a standardized assessment for young carers in any number of settings. Not only can this tool be used to identify the need for supports and appropriately triage young carers for said supports but it can also be used an empirical tool to help establish prevalence estimates in countries that do not nationally enumerate for the presence of informal caregiving among younger populations.

The final contribution in the series bring much of the above discussion together by seeking to assess how young carers feel about their experiences. Here, Hamill ( 2021 ) highlights her development of a new “Feelings About helping” scale to assess feelings of care among a US sample of high-school aged young carers providing care to grandparents. Results highlighted three primary factors, burden, meaning, and negative physiological responses—all critical to informing how support programs can be developed. Moreover, the focus on how youth feel about helping addresses two understudied areas, that of the physiological impacts of care and care provided by young people to older adults. However, what Hamill addresses is that youth are indeed affected physiologically and that we should be drawing more research focus on how our aging population will continue to draw more youth into grandparent caregiving roles.

The papers in this special issue are much needed in the advancement of not only the science of young carer research, but the development and delivery of support programs and services for a uniquely vulnerable, isolated, and understudied caregiving population. The hope for this edition is to not simply add to the literature, but to raise awareness for the broader need to include all caregivers, not merely adult caregivers, in local, national and international research and state policy agendas. It is imperative that we continue to elevate the voices of young carers to caregiving policy and make it widely known that they are a significant and growing caregiver cohort that requires our attention and support.

Alexander, C. (2021). Unequal conditions of care and the implications for social policies on young carers. Child and Adolescent Social Work Journal . https://doi.org/10.1007/s10560-021-00781-w

Article   Google Scholar  

Becker, S. (2007). Global perspectives on children’s unpaid caregiving in the family. Global Social Policy, 7 (1), 23–50.

Bernardi, Y., Chalmers, H., & Ramey, H. (2021). Unfolding what self-compassion means in young carers’ lives. Child and Adolescent Social Work Journal . https://doi.org/10.1007/s10560-021-00791-8

Frederick, T., Vitopoulos, N., Stamatopoulos, V., & Kidd, A. S. (2020). Brief Report: Youth homelessness, youthful caregiving, and resilience. Journal of Child and Family Studies . https://doi.org/10.1016/j.childyouth.2021.106177

Hamill, S. (2021). Assessing young caregivers’ feelings about helping: pilot test of a new scale. Child and Adolescent Social Work Journal . https://doi.org/10.1007/s10560-021-00792-7

Hendricks, B., Kavanaugh, M. S., & Bakitas, M. (2021a). How far have we come? An updated scoping review of young carers in the U.S. Child and Adolescent Social Work Journal . https://doi.org/10.1007/s10560-021-00783-8

Hendricks, B., Vo, J., Dionne-Odom, J., & Bakiatas, M. (2021b). Parentification among young carers: A concept analysis. Child and Adolescent Social Work Journal . https://doi.org/10.1007/s10560-021-00784-7

Kavanaugh, M. S., Stamatopoulos, V., Cohen, D., & Zhang, L. (2015). Unacknowledged caregivers: A scoping review of research on caregiving youth in the United States. Adolescent Research Review . https://doi.org/10.1007/s40894-015-0015-7

Kettell, L., O’Brien, M., Jack, B., & Knighting, K. (2021). Development of the Carers’ Alert Thermometer for Young Carers (CAT-YC) to identify and screen the support needs of young carers: a mixed method consensus study. Child and Adolescent Social Work Journal . https://doi.org/10.1186/s12904-015-0010-6

Leu, A., & Becker, S. (2017). A cross-national and comparative classification of in-country awareness and policy responses to "young carers”. Journal of Youth Studies, 20 , 750–762.

Phelps, D. (2021). What changes for young carers? a qualitative evaluation of the impact of dedicated support provision for young carers. Child and Adolescent. Social Work Journal .

Stamatopoulos, V. (2015). One million and counting: The hidden army of young carers in Canada. Journal of Youth Studies, 18 (6), 809–822.

Download references

Author information

Authors and affiliations.

Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, Milwaukee, USA

Melinda S. Kavanaugh

Ontario Tech University, Oshawa, Canada

Vivian Stamatopoulos

You can also search for this author in PubMed   Google Scholar

Corresponding author

Correspondence to Melinda S. Kavanaugh .

Additional information

Publisher's note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Kavanaugh, M.S., Stamatopoulos, V. Young Carers, The Overlooked Caregiving Population: Introduction to a Special Issue. Child Adolesc Soc Work J 38 , 487–489 (2021). https://doi.org/10.1007/s10560-021-00797-2

Download citation

Accepted : 01 September 2021

Published : 13 September 2021

Issue Date : October 2021

DOI : https://doi.org/10.1007/s10560-021-00797-2

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Find a journal
• Publish with us
• Track your research

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

• View all journals
• Explore content
• About the journal
• Publish with us
• Sign up for alerts
• Open access
• Published: 19 March 2021

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

• Claudia Zanini   ORCID: orcid.org/0000-0002-3863-061X 1 , 2 ,
• Julia Amann   ORCID: orcid.org/0000-0003-2155-5286 1 , 3 ,
• Mirjam Brach 1 , 2 ,
• Armin Gemperli   ORCID: orcid.org/0000-0002-2363-0625 1 , 2 &
• Sara Rubinelli 1 , 2  

Spinal Cord volume  59 ,  pages 493–503 ( 2021 ) Cite this article

3430 Accesses

10 Citations

2 Altmetric

Metrics details

• Quality of life
• Risk factors

Study design

Qualitative exploratory study.

To explore the lived experience of SCI caregivers, with a focus on the challenges of their role.

Caregivers of people with SCI living in the community in Switzerland.

Data were collected through semi-structured interviews. Thematic analysis was performed.

The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs.

Conclusions

Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

Similar content being viewed by others

Exploring the contextual transition from spinal cord injury rehabilitation to the home environment: a qualitative study

Perspectives on medical assistance in dying amongst persons with traumatic spinal cord injury: a qualitative study

Development of the International Spinal Cord Injury Basic Data Set for informal caregivers

Introduction.

A spinal cord injury (SCI) changes a person’s life overnight, requiring them to relearn the most basic tasks. People with a SCI who do not achieve complete independence rely on support to manage their condition and carry out daily activities. This support contributes to their quality of life and ability to participate in society and is often provided by family members [ 1 ]. Moreover, caregivers provide support not only for mobility and household chores, but also for respiratory care, body care, bowel and bladder management, and eating and drinking [ 2 , 3 ]

Research in the field of other chronic conditions, such as cancer, Alzheimer’s disease, and Parkinson’s disease, shows that caregiving often disrupts the life of the caregiver, including their professional, social, and familial relationships [ 1 , 4 , 5 , 6 ]. Furthermore, studies have reported the perceived impact that the role of caregiving has on a caregiver’s life (e.g., caregiver burden) [ 7 , 8 ].

In the context of SCI, recent reviews of the literature have reported caregivers having high levels of burden, depression and anxiety, physical symptoms, and reduced life satisfaction, as well as feelings of isolation and a loss of identity [ 9 , 10 ]. This might be due to the fact that, unlike caregiving in other conditions, caregiving in SCI can last decades, as the life expectancy of people with SCI has increased, and these caregivers often take on the role in early-middle age [ 9 , 11 ].

Caregiving is an evolving experience that is shaped by an interplay of contextual and relational factors. To better support caregivers, it is necessary to identify the challenges they encounter in caring for a loved one and assess the appropriateness of the healthcare system’s response to their needs [ 12 ]. This study will explore the lived experience of SCI caregivers, with a focus on the challenges that they face over time. While research in the field of SCI has emphasized the caregiver burden (e.g., predictors, impact on health) [ 3 , 13 , 14 ], this study looks at the evolution of the role of caregiver as experienced by those in this position.

Study design, sampling, and recruitment

This qualitative exploratory study is part of a larger project about informal caregivers of people with SCI in Switzerland. The project included a quantitative study [ 2 ] and a qualitative study with a subgroup of participants. Overall, the latter aimed to identify targets for the empowerment of informal caregivers in terms of support, information services and self‐management resources. Some of its findings are presented in this manuscript.

To recruit participants, we contacted the people with SCI included in the address lists of the national longitudinal survey (Swiss Spinal Cord Injury Cohort Study) [ 15 , 16 ], cross-referenced with the membership database of the Swiss Paraplegic Association and patient databases of the four SCI-specialized clinics in Switzerland. Those with SCI were asked to give the enclosed survey to their primary family caregiver. The caregivers who completed the survey ( N  = 717) could indicate in the informed consent form their availability to take part in an interview.

All the caregivers who indicated in the survey, their availability to take part in an interview, were considered potential participants. Among them, we recruited a purposive sample of participants for this study. The participants fulfilled the following inclusion criteria: being >18 years of age, speaking an official Swiss language (French, German, or Italian) fluently, providing at least 10 h per week of care to a family member with SCI who has been a wheelchair user for at least 4 years, and perceiving either a high or low burden in relation to caregiving. This information was retrieved from the survey. To capture a wide range of perspectives on SCI caregiving, we also considered factors that might affect the experience of caregiving [ 17 , 18 , 19 , 20 ] such as gender and age (for caregiver and care recipient), linguistic region, relationship between caregiver and care recipient (partner, parent, adult child), financial expenditures due to caregiving, and number of years of caregiving.

The potential participants were contacted via phone or via email, depending on the contact method that they indicated as preferred in the survey. We tried to join 34 caregivers, of which 22 actually participated in the study. We stopped trying to recruit a potential participant after having called three times at different times of the day or after having sent two reminders without answer.

Participation in the study was voluntary, and written consent was obtained from all interviewees. During the first contact, the researcher would quickly present the aim of the study and what the participation consisted of. If the person showed an interest in participating, the study information and a copy of the informed consent were sent home. Later on, the interview was scheduled. The day of the interview, the researcher would remind the most important issues linked to the declaration of informed consent and the interviewee would sign the document.

Data collection

Data were collected through audio-recorded semi-structured interviews. The interview guide was developed by CZ and revised in collaboration with the research team. The questions explored the experiences of caregiving and their evolution over time. Knowing from the literature that caregiving can be a disruptive event and that caregivers often reported negative outcomes, we included questions that covered these aspects. In addition, and in line with other scientific literature, we asked questions to uncover the positive aspects of caregiving, as well as resources and strategies that caregivers put into place. The main questions of the interview guide are presented in Table  1 . The questions would guide the conversation but there was the opportunity to follow-up on issues raised by the participants.

Three pilot interviews were conducted to test the interview guide after which no major changes were made, but the wording was improved. The pilot interviews were therefore included in the analysis.

The first author and a trained research assistant (NL) conducted all interviews in the interviewees’ preferred language (German, French, or Italian) and in a location of their choosing (i.e., home, workplace, bar). The interviewers kept a field diary in which they took notes of initial analysis thoughts, interpretations, and questions as well as of feelings during the interviews and first impressions. The interviewers also discussed issues emerged in the conduction of the interviews (e.g., how to best support a caregiver who is crying, how to deal with the own emotions).

Data analysis

The interviews lasted an average of 70 min (±SD = 33), were transcribed verbatim and analyzed following the principles of thematic analysis [ 21 ]. The analysis included both a deductive and an inductive phase: The first author (CZ) conducted the first deductive coding of six interviews and JA and NL of each three interviews. The three researchers met then to compare the coding and solve disagreement. A similar procedure was followed for the inductive coding. The data of each theme were constantly compared to ensure their homogeneity as well as their distinctiveness from other themes. Thematic saturation was reached.

To ensure trustworthiness, the researchers involved in the analysis documented their personal reflections on the data and had regular informal peer debriefings. They also performed investigator triangulation (e.g., by checking preliminary findings and interpretations against the raw data) to reduce researcher bias. They kept track of their discussions on themes, labeling, etc. to remember how and why decisions were made.

The interviews were analyzed in their original language, and excerpts were translated only for the purpose of scientific publications. The software MAXQDA™ (Release 12.2.0) was used to organize and store the data.

More details are presented in the Supplementary file  1 .

The final sample included 22 participants (16 women) with a mean age of 61 years (±SD = 10.4) who had been caregivers for an average of 18 years (±SD = 13.5). The majority of the participants were the life partners ( n  = 15) of the care recipient. Participants’ characteristics are presented in Table  2 .

The analysis indicated that the experience of SCI caregiving had two phases. The first phase covered the period in which the family member became a caregiver. In most cases, this happened after the patient’s discharge from their first rehabilitation. However, in some cases, caregiving began later (e.g., partners met after SCI onset and became caregivers once they moved in together). The second phase began after a new routine had been arranged.

Many participants claimed the beginning of caregiving was a “natural” consequence of the relationship they had with the care recipient, anchored in social norms (e.g., a wife is expected to take care of her husband) and an expectation of reciprocity (i.e., she/he would have done it for me) (illustrative quotes are presented in Table  3 , Q1). In their views, being a caregiver was a part of their duties as a mother or life partner (Q2) and some explained that helping was part of their nature or personality (Q3). Among the reasons mentioned for having become caregivers, the participants often referred to a desire to protect the family privacy and to avoid dependence on homecare providers (Q4). However, in other cases, it was the concurrence of certain life circumstances (e.g., being unemployed and a nurse by training when the accident happened); expressions like “I slipped into it” stressed the accidental way the caregiving began (Q5). Other reasons for “slipping into caregiving” were not finding any appropriate assisted living facility or the expectation of the injured person to be assisted by the family member (Q6).

Despite the different ways in which the participants described the beginning of caregiving, they seemed to have experienced a number of similar challenges. The first phase was characterized by specific challenges that seemed to mirror how the caregiving started: unexpected and disruptive. Dealing with these challenges allowed the family member to embed the caregiver role into their life. The second phase was marked by recurrent challenges and subsequent adjustments. In the following, we provide an in-depth exploration of the challenges that characterize the lifelong process of becoming and being a caregiver (Fig.  1 ).

Overview of the findings.

Challenges related to adjusting to the role as caregiver

Dealing with the shock.

In situations in which the care recipient and caregiver already had a relationship before SCI onset (e.g., parent–child, partners), the analysis highlighted that the caregiver had to deal with shock and realize that the disability was permanent. The participants reported that during the acute rehabilitation phase they had to understand what happened, manage their expectations for recovery, and start coming to terms with the situation (Q7).

Feeling unprepared

The participants reported a lack of information, training, and guidance (Q8). When looking back, some interviewees stated that the focus was always on the person with SCI and resented a lack of support in preparing them for a “lifetime job” as a caregiver (Q9).

Adapting life and habits

Becoming a caregiver required adaptations in many domains: professional life (e.g., reducing working time), social life (e.g., less time for friends and hobbies), and family life (e.g., moving because the house could not be adapted) (Q10). Even in the cases of caregivers who took on the task years after SCI onset, there was a need to adapt their lives to the new situation (Q11). Adapting their lives and habits gave rise to new routines, which were often fixed and based around the needs of the care recipient (e.g., self-management activities such as emptying the bladder or laying down to prevent pressure injuries) (Q12).

Challenges related to housing, bureaucracy, and financial issues

Lacking appropriate housing.

Housing for people with SCI are lacking, in particular for young people, for whom neither nursing homes nor assisted living facilities for individuals with learning disabilities are adequate solutions (Q13). Moreover, caregivers who had started to feel the consequences of ageing wondered about who would take on caregiving when they are no longer able to provide the needed care. This worry especially affected caregivers whose care recipient was not accustomed to receiving assistance from homecare providers (Q14). In some cases, this worry was reinforced by bad experiences with nursing care facilities (Q15).

Dealing with bureaucracy

Several participants mentioned the challenges of dealing with the bureaucracy of insurance providers. They mostly complained about the complexity of the reimbursement system (Q16) or the strict rules (e.g., reimbursement for psychological support) (Q17). Some interviewees also stressed how mentally exhausting the process of applying for reimbursement or allowances could be (Q18).

Facing financial uncertainty

The participants reported that the often very long procedures to define disability benefits left families in limbo and facing financial uncertainty. The situation could be more or less difficult, depending on their financial situation prior to SCI onset and the caregiver’s work situation. Among the participants facing financial difficulty, some decided to continue working even after reaching official retirement age. Among those who were in a comfortable situation, some expressed worry for the future (Q19).

Challenges related to finding a balance between caregiving and personal life

Having to prioritize caregiving over personal wishes.

Some participants acknowledged that caregiving required sacrifice in terms of personal aspirations and freedom (Q20). Some interviewees stated that they had to give up vocational retraining or new professional experiences because these were not compatible with their caregiver role (Q21). Several others reported having to refuse invitations or give up activities when these did not fit with their caregiving schedule. Many caregivers acknowledged that caregiving affected their ability to make spontaneous plans (Q22).

Negotiating tasks and workload

Some caregivers described how they negotiated their workload and tasks (Q23). For example, the fear of mixing the roles of partner and caregiver led to a clear division of tasks: personal care (e.g., bowel management) was delegated to homecare providers, while the partner took on assistance (e.g., mobility). The analysis highlighted that this negotiation is an iterative process and can be triggered by several factors; for example, caregivers might realize that the situation is not sustainable anymore because of ageing, other commitments, or unclear role boundaries (e.g., being caregiver, life partner, and working partner), or care recipients might develop new needs that require new arrangements (Q24).

Finding time for themselves

Caregiving was often perceived as a full-time job, and a major challenge for caregivers was to find time for themselves (Q25). With good organization, it was possible to create free time, but such organization could be demanding. Some caregivers stressed that an activity had to be worthwhile; otherwise, the planning effort exceeded the pleasure (Q26). Furthermore, in many cases this would require the care recipient to accept external support, which was often undesired (Q27).

This study found that SCI caregiving most often begins unexpectedly and is characterized by two phases. The first phase is relatively short and central to becoming a caregiver, and it is marked by challenges related to adjusting to the role of caregiver and embedding this in their lives. The second phase, which is lifelong, is characterized by a number of recurrent challenges related to finding a balance between caregiving and personal life. The challenges related to housing, bureaucracy, and financial issues take place in both phases. Caregivers have to deal with these challenges to stay apprised of life changes (e.g., retirement) and newly emerging needs (e.g., how to deal with ageing in SCI).

These finding have two major implications. First, by describing how family members become caregivers, a time point in which vulnerable caregivers can be identified is suggested. Second, by describing the challenges and their timing, inputs for developing tailored programs and assessing the adequacy of the services available are provided.

In relation to the first point, the “birth” of a caregiver offers the earliest opportunity to identify people in need of support. Indeed, as past research has documented, becoming a caregiver is a turning point in one’s life trajectory [ 22 ], and for relatives, it seems to be less a matter of choice than a matter of responsibility and reciprocity [ 23 , 24 ]. Considering that feelings of control in caregiving relate to caregivers’ wellbeing and that the decision to become a caregiver is an indicator of control [ 25 ], caregivers who choose to take on caregiving might experience higher levels of control than caregivers who “slipped into it”. In addition, research has shown that less control in caregiving is associated with a lower household income, a lower subjective social position, and a higher objective caregiver burden [ 25 ]. Thus, it might be important to assess these factors to identify vulnerable caregivers in a timely manner.

The moment a person becomes a caregiver is a turning point. However, our findings indicate that being a caregiver is more a process than a state. Consequently, caregivers have to find resources throughout their lives to assist the care recipient without jeopardizing their own well-being. In line with earlier research [ 3 , 26 , 27 ], we believe that routine need-and-outcome assessments may be useful. In practice, rehabilitation clinics could offer a “caregiver checkup” in tandem with the checkup offered to the people with SCI. This is in accordance with Chan [ 28 ], who stressed the importance of considering a caregiver and care recipient as a single unit to promote understanding and preparedness post discharge.

During the “caregiver checkup”, caregivers could be screened with regard to the challenges they may be facing and the care recipient’s health status and functional independence, as these are associated with caregiver outcomes [ 29 , 30 ]. Such support might not only benefit caregivers, it could also positively influence the care recipient and the relationship between the two [ 13 , 31 ]. Furthermore, positive caregiver outcomes would ensure the caregiving is sustainable, thereby contributing greatly to the healthcare system.

The findings of this study might also provide an opportunity to check if the services available support caregivers in addressing the challenges they encounter over time. While adjusting to their new role, caregivers often feel unprepared and struggle with shock. Therefore, the effectiveness of educational programs in increasing caregivers’ confidence and competence in providing safe and effective care could be evaluated, as could the services addressing distress [ 32 , 33 ]. Similarly, the adequacy of services to support caregivers in dealing with challenges linked to housing, bureaucracy, financial issues, and balancing caregiving and personal life needs to be assessed. In Switzerland, several services (e.g., homecare providers, respite care) are available, but their use is limited and dependent on the characteristics of both the caregiver and the care recipient [ 2 , 34 ]. In about half of all cases, there seems to be no need of these services; however, sometimes costs, limited flexibility and care receiver’s rejection of external assistance are barriers to using these services [ 2 ].

Furthermore, our findings suggest that the timing of existing services should be considered. Indeed, a limitation is that most of these services, including caregiver education, are offered during or shortly after discharge from acute care or rehabilitation [ 35 ]. For educational programs this is problematic, as receiving too much information at once or at the wrong time might not be helpful [ 36 ] (p.153). Hence, we endorse the suggestion of Graf and colleagues [ 26 ] to offer support at different points in time. Based on the results of a “caregiver checkup”, rehabilitation clinics could identify caregivers in need and direct them to the appropriate services or provide them with tailored information. Linking caregivers to resources would help them find the appropriate support when it was most needed. In this regard, the introduction of case management programs could also help; in a recent study in Switzerland nearly half of the respondents reported that their need for case management was at best partially fulfilled [ 37 ].

This study has some methodological limitations. First, it relied on the memories of participants, who were reporting their (often very long) caregiving experiences. Prospective longitudinal studies could further explore the specific challenges of caregiving directly after first rehabilitation; however, the fact that saturation was reached supports the existence of several shared challenges. Second, the composition of our sample did not allow for performing comparisons among groups (e.g., caregivers with different relationships with the care recipient, male vs female caregivers). It is nonetheless important to notice that in Switzerland caregivers of people with SCI are mostly life partners and female [ 2 ], as in our sample. Finally, some of the challenges presented in this article might be specific to the Swiss context.

The findings of this study suggest that SCI caregivers go through two phases and that their lives are characterized by continuous adjustment to the ever-evolving role of caregiver. Furthermore, describing how family members become caregivers and the challenges they face over time might help improve the societal response to SCI by developing tailored interventions aimed at equipping caregivers with the necessary knowledge and skills. This will not only benefit caregivers, it is also likely to have a positive impact on the care recipient and the relationship between the two. Caring for caregivers is a way of giving back to these family members who support the healthcare system with their often invisible, but extremely valuable, work.

Data archiving

The transcripts of the interviews analyzed in the current study are available from the corresponding author on request. Transcripts will be provided in the original language (mostly German).

Smith EM, Boucher N, Miller WC.Caregiving services in spinal cord injury: a systematic review of the literature.Spinal Cord. 2016;54:562–9.

Article   CAS   Google Scholar  

Gemperli A, Rubinelli S, Zanini C, Huang J, Brach M, Pacheco et al. Family caregivers of persons with spinal cord injury. J of Rehabilit Med. (in press).

Post M, Bloemen J, De Witte L. Burden of support for partner of persons with spinal cord injuries. Spinal Cord. 2005;43:311–9.

Houldin AD. A qualitative study of caregivers’ experiences with newly diagnosed advanced colorectal cancer. Oncol Nurs forum. 2007;34:323–30.

Article   Google Scholar  

Grimmer K, Moss J, Falco J. Becoming a carer for an elderly person after discharge from an acute hospital admission. The Internet J of Allied Health Sci and Prac. 2004;2:1–8.

Google Scholar  

Silva-Smith AL. Restructuring life: preparing for and beginning a new caregiving role. J Fam Nurs. 2007;13:99–116.

Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108:23–7.

Brewin A. The quality of life of carers of patients with severe lung disease. Br J Nurs. 2004;13:906–12.

Lynch J, Cahalan R. The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review. Spinal Cord. 2017;55:964–78.

Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin Rehabil. 2017;31:45–60.

Savic G, DeVivo M, Frankel H, Jamous M, Soni B, Charlifue S. Long-term survival after traumatic spinal cord injury: a 70-year British study. Spinal Cord. 2017;55:651–8.

International perspectives on spinal cord injury. World Health Organization & The International Spinal Cord Injury Society 2013.

Tough H, Brinkhof MW, Siegrist J, Fekete C. Subjective caregiver burden and caregiver satisfaction: the role of partner relationship quality and reciprocity. Arch Phys Med Rehabil. 2017;98:2042–51. Epub 2017/03/14

Fekete C, Tough H, Siegrist J, Brinkhof MW. Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland. BMJ Open. 2017;7:e017369. Epub 2017/12/25

Post MW, Brinkhof MW, von Elm E, Boldt C, Brach M, Fekete C, et al. Design of the Swiss spinal cord injury cohort study. Am J Phys Med Rehabil. 2011;90:5–16.

Brinkhof MW, Fekete C, Chamberlain JD, Post MW, Gemperli A. Swiss national community survey on functioning after spinal cord injury: Protocol, characteristics of participants and determinants of non-response. J Rehabil Med. 2016;48:120–30.

Lai DWL. Effect of financial costs on caregiving burden of family caregivers of older adults. SAGE Open. 2012;2:2158244012470467.

Hu X, Dolansky MA, Zhang F, Qu M. Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China. Nurs Health Sci. 2016;18:105–12.

Saunders MM. Factors associated with caregiver burden in heart failure family caregivers. West J Nurs Res. 2008;30:943–59.

Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA 2014;311:1052–60.

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3:77–101.

Mandelbaum DG. The study of life history: gandhi. Curr Anthropol. 1973;14:177–206.

Pertl MM, Sooknarine-Rajpatty A, Brennan S, Robertson IH, Lawlor BA. Caregiver choice and caregiver outcomes: a longitudinal study of Irish spousal dementia caregivers. Front Psychol. 2019;10:1801. Epub 2019/08/29

Schulz R, Beach SR, Cook TB, Martire LM, Tomlinson JM, Monin JK. Predictors and consequences of perceived lack of choice in becoming an informal caregiver. Aging Ment Health. 2012;16:712–21.

Fekete C, Tough H, Brinkhof MWG, Siegrist J. Does well-being suffer when control in productive activities is low? A dyadic longitudinal analysis in the disability setting. J Psychosom Res. 2019;122:13–23. Epub 2019/05/28

Graf R, LeLaurin J, Schmitzberger M, Freytes IM, Orozco T, Dang S, et al. The stroke caregiving trajectory in relation to caregiver depressive symptoms, burden, and intervention outcomes. Top Stroke Rehabilitation. 2017;24:488–95.

Stucki G, Bickenbach J. The implementation challenge and the learning health system for SCI initiative. Am J Phys Med Rehabil. 2017;96:S55–s60. Epub 2017/01/07

Chan RCK. How does spinal cord injury affect marital relationship? A story from both sides of the couple. Disabil rehabilitation. 2000;22:764–75.

Springate BA, Tremont G. Dimensions of caregiver burden in dementia: impact of demographic, mood, and care recipient variables. Am J Geriatr Psychiatry. 2014;22:294–300.

Lu N, Liu J, Lou VWQ. Exploring the reciprocal relationship between caregiver burden and the functional health of frail older adults in China: a cross-lag analysis. Geriatr Nurs. 2016;37:19–24.

Bakas T, Clark PC, Kelly-Hayes M, King RB, Lutz BJ, Miller EL, et al. Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association and American Stroke Association. Stroke 2014;45:2836–52. Epub 2014/07/19

Reinhard S, Given B, Petlick N, Bemis A. Supporting family caregivers in providing care. In: Hughes R, editor. patient safety and quality: an evidence-based handbook for nurses. Rockville: Agency for Healthcare Research and Quality 2008.

Chien LY, Chu H, Guo JL, Liao YM, Chang LI, Chen CH, et al. Caregiver support groups in patients with dementia: a meta-analysis. Int J Geriatr psychiatry. 2011;26:1089–98. Epub 2011/02/11

Huang J, Pacheco Barzallo D, Rubinelli S, Münzel N, Brach M, Gemperli A. What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers. Spinal Cord. 2019;57:924–32.

Visser-Meily A, van Heugten C, Post M, Schepers V, Lindeman E. Intervention studies for caregivers of stroke survivors: a critical review. Patient Educ counseling. 2005;56:257–67. Epub 2005/02/22

Coon DW, Gallagher-Thompson D, Thompson LW. Innovative interventions to reduce dementia caregiver distress: a clinical guide. New York: Springer; 2003. P.

Trezzini B, Brach M, Post M, Gemperli A. Prevalence of and factors associated with expressed and unmet service needs reported by persons with spinal cord injury living in the community. Spinal Cord. 2019;57:490–500. Epub 2019/01/31

Download references

Acknowledgements

We would like to express our gratitude to the Swiss National Science Foundation for funding this project as well as to the participants for their time and engagement. We also acknowledge the team of the Informal Care Project for their support and Natalie Lustenberger (NL) for her commitment and rigor in the recruitment and data collection as well as in the transcription of the interviews. We are grateful to Lisa Adey, who carefully checked the translation of all quotes from the interviews. Thank you also to the SwiSCI Steering Committee with its members Xavier Jordan, Fabienne Reynard (Clinique Romande de Réadaptation, Sion); Michael Baumberger, Hans Peter Gmünder (Swiss Paraplegic Center, Nottwil); Armin Curt, Martin Schubert (University Clinic Balgrist, Zürich); Margret Hund-Georgiadis, Kerstin Hug (REHAB Basel, Basel); Laurent Prince (Swiss Paraplegic Association, Nottwil); Heidi Hanselmann (Swiss Paraplegic Foundation, Nottwil); Daniel Joggi (Representative of persons with SCI); Nadja Münzel (Parahelp, Nottwil); Mirjam Brach, Gerold Stucki (Swiss Paraplegic Research, Nottwil); Armin Gemperli (SwiSCI Coordination Group at Swiss Paraplegic Research, Nottwil).

This project was supported by the Swiss National Science Foundation [grant number: 160158]. Open Access funding provided by Universität Luzern.

Author information

Authors and affiliations.

Swiss Paraplegic Research, Nottwil, Switzerland

Claudia Zanini, Julia Amann, Mirjam Brach, Armin Gemperli & Sara Rubinelli

Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland

Claudia Zanini, Mirjam Brach, Armin Gemperli & Sara Rubinelli

Department of Health Sciences and Technology, Health Ethics and Policy Lab, ETH, Zurich, Switzerland

Julia Amann

You can also search for this author in PubMed   Google Scholar

Contributions

CZ was involved in the design of the study, supervised data collection, conducted data analysis and interpreted the findings, was responsible for drafting, revising, and finalizing the manuscript for submission. JA was involved in interpreting the findings, drawing implications for practice as well as in drafting, revising, and finalizing the manuscript for submission. SR developed the study protocol and contributed to revising the manuscript. AG and MB developed the study protocol, provided feedback, and approved the manuscript draft.

Corresponding author

Correspondence to Claudia Zanini .

Ethics declarations

Conflict of interest.

The authors declare no competing interests.

We certify that all applicable institutional and governmental regulations concerning the ethical treatment of human volunteers were followed throughout the study. The Ethics Committee of Northeast and Central Switzerland claimed no jurisdiction because no health-related data were collected. All participants have signed a written consent form.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

Consolidated criteria for reporting qualitative studies (coreq 32-item checklist), rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ .

Reprints and permissions

About this article

Cite this article.

Zanini, C., Amann, J., Brach, M. et al. The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury. Spinal Cord 59 , 493–503 (2021). https://doi.org/10.1038/s41393-021-00618-4

Download citation

Received : 06 July 2020

Revised : 23 February 2021

Accepted : 24 February 2021

Published : 19 March 2021

Issue Date : May 2021

DOI : https://doi.org/10.1038/s41393-021-00618-4

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Quick links

• Explore articles by subject
• Guide to authors
• Editorial policies