Family caregivers’ experience in the process of caring for older adults: a qualitative synthesis




Systematic review; Qualitative research; Aged; Frail elderly; Caregivers.


In this review, the main goal was to answer the question: What are the family caregivers’ experiences in the process of providing care to older people? To do so, a systematic literature review was carried out by consulting the MEDLINE, Cochrane, and Lilacs databases. Two reviewers selected the studies independently, and discrepancies were sorted out by a third reviewer. The Critical Appraisal Skills Programme was used to evaluate the methodological quality of the included studies, and thematic analysis was applied to synthesize the results. The analytical themes addressed in the synthesis were developed through researchers’ interpretations and new constructs. Confidence in the findings was reviewed using GRADE-CERQual. The study adhered to Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines. Eighteen studies were included in the synthesis. Three analytical themes emerged: "Mixed feelings", "You have no life. Your own life gets put on hold”, and "The need for increasing coping strategies". Several conflicting feelings emerged in the process of care, showing the complexity of the caregivers’ experience. Either way, the caregivers put their lives on hold to provide care and sought coping strategies, such as formal and informal support and spirituality. Therefore, both health professionals and policymakers must ensure comprehensive care for the older adults and their families, so that caregivers do not compromise their own lives and health in order to take care of others.


Barnett-Page, E., & Thomas, J. (2009). Methods for the synthesis of qualitative research: a critical review. BMC Medical Research Methodology, 9(1), 59.

Bombard, Y., Baker, G. R., Orlando, E., Fancott, C., Bhatia, P., Casalino, S., Onate, K., Denis, J., & Pomey, M. (2018). Engaging patients to improve quality of care: a systematic review. Implementation Science: IS, 13(1), 98.

Booth, A. (2016). Searching for qualitative research for inclusion in systematic reviews: a structured methodological review. Systematic Reviews, 5(1), 74.

Cabote, C. J., Bramble, M., & McCann, D. (2015). Family caregivers’ experiences of caring for a relative with younger onset dementia: a qualitative systematic review. Journal of Family Nursing, 21(3), 443-468.

CASP (2018). Critical Appraisal Skills Programme- CASP. Qualitative studies checklist. [Accessed January 10, 2021].

Clark, M., & Huttlinger, K. (1998). Elder care among mexican american families. Clinical Nursing Research, 7(1), 64-81.

Colvin, C. J., Garside, R., Wainwright, M., Munthe-Kaas, H., Glenton, C., Bohren, M. A., Carlsen, B., Tunçalp, O., Noyes, J., Booth, A., Rashidian, A., Flottorp, S., & Lewin, S. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 4: how to assess coherence. Implementation Science, 13(S1), 13.

Crist, J. D., García-Smith, D., & Phillips, L. R. (2006). Accommodating the stranger en casa: how mexican american elders and caregivers decide to use formal care. Research and Theory for Nursing Practice, 20(2), 109-126.

Crist, J. D., & Speaks, P. (2011). Keeping it in the family: when mexican american older adults choose not to use home healthcare services. Home Healthcare Now, 29(5).

Del-Pino-Casado, R., Rodríguez-Cardosa, M., López-Martínez, C., & Orgeta, V. (2019). The association between subjective caregiver burden and depressive symptoms in carers of older relatives: a systematic review and meta-analysis. PloS One, 14(5), e0217648.

Domingues, N. S., Verreault, P., & Hudon, C. (2018). Reducing burden for caregivers of older adults with mild cognitive impairment: a systematic review. American Journal of Alzheimer’s Disease and Other Dementias, 33(7), 401-414.

Furlong, K. E. & Wuest, J. (2008). Self-care behaviors of spouses caring for significant others with Alzheimer’s disease: the emergence of self-care worthiness as a salient condition. Qualitative Health Research, 18(12), 1662-1672.

Garner, S. L., & Faucher, M. A. (2014). Perceived challenges and supports experienced by the family caregiver of the older adult: a photovoice study. Journal of Community Health Nursing, 31(2), 63-74.

Ge, L. & Mordiffi, S. Z. (2017). Factors associated with higher caregiver burden among family caregivers of elderly cancer patients: a systematic review. Cancer Nursing, 40(6), 471-478.

Glenton, C., Carlsen, B., Lewin, S., Munthe-Kaas, H., Colvin, C. J., Tunçalp, Ö., Bohren, M. A., Noyes, J., Booth, A., Garside, R., Rashidian, A., Flottorp, S., & Wainwright, M. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 5: how to assess adequacy of data. Implementation Science, 13(S1), 14.

Goldblatt, H., Granot, M., & Zarbiv, E. (2019). “Death lay here on the sofa”: Reflections of young adults on their experience as caregivers of parents who died of cancer at home. Qualitative Health Research, 29(4), 533-544.

Greenwood, N., & Smith, R. (2015). Barriers and facilitators for male carers in accessing formal and informal support: A systematic review. Maturitas, 82(2), 162-169.

Greenwood, N., & Smith, R. (2016). The oldest carers: A narrative review and synthesis of the experiences of carers aged over 75 years. Maturitas, 94, 161-172.

Hashizume, Y. (2010). Releasing From the Oppression: Caregiving for the elderly parents of japanese working women. Qualitative Health Research, 20(6), 830-844.

Holroyd-Leduc, J., Resin, J., Ashley, L., Barwich, D., Elliott, J., Huras, P., Légaré, F., Mahoney, M., Maybee, A., McNeil, H., Pullman, D., Sawatzky, R., Stolee, P. & Muscedere, J. (2016). Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy. Research Involvement and Engagement, 2, 23.

Horrell, B., Stephens, C., & Breheny, M. (2015). Capability to care: Supporting the health of informal caregivers for older people. Health Psychology, 34(4), 339-348.

Jacobson, J., Gomersall, J. S., Campbell, J., & Hughes, M. (2015). Carers’ experiences when the person for whom they have been caring enters a residential aged care facility permanently: a systematic review. JBI Database of Systematic Reviews and Implementation Reports, 13(7), 241-317.

Lane, P., McKenna, H., Ryan, A. & Fleming, P. (2003). The experience of the family caregivers’ role: a qualitative study. Research and theory for nursing practice, 17(2), 137-51.

Larrañaga, I., Valderrama, M., Martín, U., Begiristain, J., Bacigalupe, A., & Arregi, B. (2009). Mujeres y hombres ante el cuidado informal: diferencias en los significados y las estrategias TT [Women and men facing informal caregiving: differences in strategies and meaning.] Rev. Fac. Nac. Salud Pública, 27(1), 50-55.

Lawrence, V., Murray, J., Samsi, K., & Banerjee, S. (2008). Attitudes and support needs of black caribbean, south asian and white british carers of people with dementia in the UK. The British Journal of Psychiatry: The Journal of Mental Science, 193(3), 240-246.

Lewin, S., Bohren, M., Rashidian, A., Munthe-Kaas, H., Glenton, C., Colvin, C. J., Garside, R., Noyes, J., Booth, A., Tunçalp, Ö., Wainwright, M., Flottorp, S., Tucker, J. D. & Carlsen, B. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings - paper 2: how to make an overall CERQual assessment of confidence and create a Summary of Qualitative Findings table. Implementation Science, 13(S1), 10.

Lewin, S., Booth, A., Glenton, C., Munthe-Kaas, H., Rashidian, A., Wainwright, M., Bohren, M. A., Tunçalp, Ö., Colvin, C. J., Garside, R., Carlsen, B., Langlois, E. V. & Noyes, J. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series. Implementation Science, 13(S1), 2.

Lewis, E. T., Harrison, R., Hanly, L., Psirides, A., Zammit, A., McFarland, K., Dawson, A., Hillman, K., Barr, M., & Cardona, M. (2019). End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 22(3), 405-414.

Lewis, M. B., Curtis, M. P., & Lundy, K. S. (1995). “He calls me his angel of mercy”: the experience of caring for elderly parents in the home. Holistic nursing practice, 9(4), 54-65.

Lopez Hartmann, M., Anthierens, S., Van Assche, E., Welvaert, J.,Verhoeven, V., Wens, J. & Remmen, R. (2016). Understanding the experience of adult daughters caring for an ageing parent, a qualitative study. Journal of Clinical Nursing, 25(11-12), 1693-1702.

Maree, J. E., Moshima, D., Ngubeni, M., & Zondi, L. (2018). On being a caregiver: The experiences of South African family caregivers caring for cancer patients. European Journal of Cancer Care, 27(2), e12801.

Mazza, M. M. P. R., & Lefevre, F. (2005). Caretaking within the family: social representation analysis of the relationship between the caretaker and the elderly. Rev Bras Cresc Desenv Hum, 15(1), 1-10.

Mbanaso, M. U., Shavelson, J., & Ukawuilulu, J. (2006). Elderly african americans as intragenerational caregivers. Journal of Gerontological Social Work, 47(1-2), 3-15.

McCabe, M., You, E., & Tatangelo, G. (2016). Hearing their voice: a systematic review of dementia family caregivers’ needs. The Gerontologist, 56(5), e70-88.

McGarry, J., & Arthur, A. (2001). Informal caring in late life: a qualitative study of the experiences of older carers. Journal of Advanced Nursing, 33(2), 182-189.

Moher, D., Shamseer, L., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., Stewart, L., A & Group, PRISMA-P. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Systematic Reviews, 4(1), 1.

Moral-Fernández, L., Frías-Osuna, A., Moreno-Cámara, S., Palomino-Moral, P. A., & Del-Pino-Casado, R. (2018). Primeros momentos del cuidado: el proceso de convertirse en cuidador de un familiar mayor dependiente. [The first moments of the carer: The process of becoming a caregiver of a dependent elderly relative] Atención Primaria, 50(5), 282-290.

Munthe-Kaas, H., Bohren, M. A., Glenton, C., Lewin, S., Noyes, J., Tunçalp, Ö., Booth, A., Garside, R., Colvin, C. J., Wainwright, M., Rashidian, A., Flottorp, S., & Carlsen, B. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings - paper 3: how to assess methodological limitations. Implementation Science, 13(S1), 9.

Noyes, J., Booth, A., Lewin, S., Carlsen, B., Glenton, C., Colvin, C. J., Garside, R., Bohren, M. A., Rashidian, A., Wainwright, M., Tunςalp, Ö., Chandler, J., Flottorp, S., Pantoja, T., Tucker, J. D., & Munthe-Kaas, H. (2018). Applying GRADE-CERQual to qualitative evidence synthesis findings–paper 6: how to assess relevance of the data. Implementation Science, 13(S1), 4.

Ouzzani, M., Hammady, H., Fedorowicz, Z., & Elmagarmid, A. (2016). Rayyan - a web and mobile app for systematic reviews. Systematic Reviews, 5(1), 210.

Paillard-Borg, S., & Strömberg, L. (2014). The importance of reciprocity for female caregivers in a super-aged society: a qualitative journalistic approach. Health Care for Women International, 35(11-12), 1365-1377.

Parker, K., Hickman, L. D., Phillips, J. L., & Ferguson, C. (2020). Interventions to optimise transitional care coordination for older people living with dementia and concomitant multimorbidity and their caregivers: a systematic review. Contemporary Nurse, 1-45.

Peacock, S., Sethi, B., Williams, A., Duggleby, W., Bayly, M., Swindle, J., Ploeg, J., & Markle-Reid, M. (2017). Older adult spouses with multiple chronic conditions: challenges, rewards, and coping strategies. Canadian Journal on Aging, 36(2), 209-222.

Pedreira, L. C., Ferreira, A. M. C., Silva, G. T. R., Silva, R. M. O., & Freitas, C. M. (2018). Older Brazilian caregivers and their lived experiences of caring - A hermeneutic phenomenological study. Journal of Clinical Nursing, 27(17-18), 3314-3323.

Piercy, K. W. (2007). Characteristics of strong commitments to intergenerational family care of older adults. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62(6), S381-S387.

Ringer, T., Hazzan, A. A., Agarwal, A., Mutsaers, A., & Papaioannou, A. (2017). Relationship between family caregiver burden and physical frailty in older adults without dementia: a systematic review. Systematic Reviews, 6(1), 55.

Rodger, D., Neill, M. O., & Nugent, L. (2015). Informal carers’ experiences of caring for older adults at home: a phenomenological study. British Journal of Community Nursing, 20(6), 280-285.

Saletti-Cuesta, L., Tutton, E.; Langstaff, D., & Willett, K. (2018). Understanding informal carers’ experiences of caring for older people with a hip fracture: a systematic review of qualitative studies. Disability and Rehabilitation, 40(7), 740-750.

Sandelowski, M., & Barroso, J. (2007). Handbook for Synthesizing Qualitative Research. (Springer Publishing Company, Hrsg.).

Scazufca, M. (2002). Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Revista Brasileira de Psiquiatria, 24(1), 12-17.

Six, S., Musomi, S., & Deschepper, R. (2019). Are the elderly perceived as a burden to society? The perspective of family caregivers in belgium and kenya: a comparative study. Journal of Transcultural Nursing, 30(2), 124-131.

Stern, C., Jordan, Z., & McArthur, A. (2014). Developing the review question and inclusion criteria. AJN, American Journal of Nursing, 114(4), 53-56.

Thomas, J., & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8(1), 45.

Thorne, S., Jensen, L., Kearney, M. H., Noblit, G. & Sandelowski, M. (2004). Qualitative metasynthesis: reflections on methodological orientation and ideological agenda. Qualitative Health Research, 14(10), 1342-1365.

Tong, A., Flemming, K., McInnes, E., Oliver, S., & Craig, J. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology, 12(1), 181.

Turato, E. R. (2005). Qualitative and quantitative methods in health: definitions, differences and research subjects. Revista de Saúde Pública, 39(3), 507-514.

Vallée, A., & Vallée, J. (2017). Experience for caregivers of dependent elderly persons with dementia. Gériatrie et Psychologie Neuropsychiatrie du Viellissement, 15(2), 138-144.

Watson, B., Tatangelo, G., & McCabe, M. (2019). Depression and anxiety among partner and offspring carers of people with dementia: a systematic review. The Gerontologist, 59(5), e597-e610.

WHO. World Health Organization (2015). The growing need for home health care for the elderly: home health care for the elderly as an integral part of primary health care services. World Health Organization.

WHO. World Health Organization. (2017). Integrated care for older people: guidelines on community-level interventions to manage declines in intrinsic capacity. Geneva: World Health Organization.

Williams, A., Sethi, B., Duggleby, W., Ploeg, J., Markle-Reid, M., Peacock, S., & Ghosh, S. (2016). A Canadian qualitative study exploring the diversity of the experience of family caregivers of older adults with multiple chronic conditions using a social location perspective. International Journal for Equity in Health, 15(1), 40.

Woodford, J., Farrand, P., Watkins, E. R., & LLewellyn, D. J. (2018). “I don’t believe in leading a life of my own, I lead his life”: a qualitative investigation of difficulties experienced by informal caregivers of stroke survivors experiencing depressive and anxious symptoms. Clinical Gerontologist, 41(4), 293-307.

Zimmer, L. (2006). Qualitative meta-synthesis: a question of dialoguing with texts. Journal of Advanced Nursing, 53(3), 311-318.




How to Cite

REZENDE, C. de P.; NASCIMENTO, M. M. G. do .; SANTOS, A. S. de A. .; OLIVEIRA, I. V. .; FILARDI, A. F. R. .; NASCIMENTO, Y. de A. .; OLIVEIRA, D. R. de . Family caregivers’ experience in the process of caring for older adults: a qualitative synthesis. Research, Society and Development, [S. l.], v. 10, n. 12, p. e27101220037, 2021. DOI: 10.33448/rsd-v10i12.20037. Disponível em: Acesso em: 29 feb. 2024.



Health Sciences