Articles
| Open Access |
https://doi.org/10.55640/ijmm-04-02-02
INFORMAL CAREGIVING IN LOW-RESOURCE SETTINGS—ASSESSING BURDEN, CHALLENGES, AND POLICY IMPERATIVES
Abstract
An informal caregiver is someone who provides unpaid care to a friend, family member, or neighbor in need. They often help with daily tasks such as cooking, cleaning, and dressing, as well as support with managing appointments and finances.
The role of informal caregivers in patient recovery is multifaceted and often underappreciated, particularly within low-resource settings where formal support structures are limited. The provision of caregiving is integral to the continuum of care and can serve as a crucial determinant of patient outcomes. However, while caregivers facilitate recovery by providing physical, emotional, and logistical support, the responsibilities they assume frequently exact a significant toll on their own physical and mental well‐being. This duality of caregiving—as both indispensable and inherently burdensome—demands rigorous academic inquiry and public policy attention, especially given the growing number of patients who rely on informal care in the context of chronic illness, advanced age, and post‐surgical recovery.
Keywords
Informal Caregiving, Low-Resource Settings, Caregiver Burden, Challenges of Caregiving, Policy Imperatives (for Caregiving)
References
Abd Rahim, A., Abdul Manaf, R., Juni, M.H. and Ibrahim, N., (2021). Health system governance for the integration of mental health services into primary health care in the sub-Saharan Africa and South Asia region: A systematic review. INQUIRY: The Journal of Health Care Organization, Provision, and Financing, 58, p.00469580211028579.
Aljunaid, M.A., Alosaimi, R.M., Alazmi, E.A., Afandi, A.A., Musslem, M.T., Aljarameez, M.M. and Alzobaidi, H.H., (2024). Determinants of Depression in Caregivers of Geriatric Patients in Jeddah, Saudi Arabia: A Cross-Sectional Study. Medicina, 60(8), p.1368.
Buckle, N., Doyle, O., Kodate, N., Kinch, M. and Somanadhan, S., (2024, December). Caregiver-reported economic impacts of pediatric rare diseases—A scoping review. In Healthcare (Vol. 12, No. 24, p. 2578). MDPI.
Chase, J.A.D., Russell, D., Kaplan, D.B., Bueno, M.V., Khiewchaum, R. and Feldman, P.H., (2021). “Doing the right thing”: Family caregivers managing medical and nursing tasks in the postacute home health care setting. Journal of Applied Gerontology, 40(12), pp.1786-1795.
Chen, L.M., Inoue, M. and Buckley, N., (2024). Case studies on community care in Japan: considerations for mitigating social isolation and loneliness in older adults with dementia. Frontiers in Public Health, 12, p.1411217.
Chukwu, N., Agwu, P., Ajibo, H. and Aronu, N., (2022). Challenges faced by informal caregivers of patients in a Nigerian hospital and implications for social work. Journal of Social Work, 22(5), pp.1189-1206.
Clair, C.A., Tobin, K.E. and Taylor, J.L., (2023). Caregiver Burden and its Limitations in Describing Black Caregivers’ Experience. Current Geriatrics Reports, 12(4), pp.228-234.
Culberson, J.W., Kopel, J., Sehar, U. and Reddy, P.H., (2023). Urgent Needs of Caregiving in Ageing Populations with Alzheimer’s Disease and Other Chronic Conditions: Support Our Loved Ones. Ageing Research Reviews, p.102001.
Gallego-Alberto, L., Losada, A., Cabrera, I., Romero-Moreno, R., Pérez-Miguel, A., Pedroso-Chaparro, M.D.S. and Márquez-González, M., (2022). “I feel guilty”. Exploring guilt-related dynamics in family caregivers of people with dementia. Clinical Gerontologist, 45(5), pp.1294-1303.
Gaugler, J.E., (2022). Unpaid dementia caregiving: A policy and public health imperative. Public Policy & Aging Report, 32(2), pp.51-57.
Hammond, A., Arkorful, V.E., Diriye, A.W. and Budu, G., (2023). Caregivers’ Roles and Challenges, Evidence from Rural and Urban Somalia. In Global Encyclopedia of Public Administration, Public Policy, and Governance (pp. 1384-1393). Cham: Springer International Publishing.
Hladkowicz, E., Auais, M., Kidd, G., McIsaac, D.I. and Miller, J., (2024). “It’s a stressful, trying time for the caretaker”: an interpretive description qualitative study of postoperative transitions in care for older adults with frailty from the perspectives of informal caregivers. BMC geriatrics, 24(1), p.246.
Ikeorji, C.R., (2024). Caregiving practices for older persons in Africa: Changing trends and implications for transformative social work. Journal of Social Development in Africa, 39(1), pp.72-100.
Kayaalp, A., Page, K.J. and Rospenda, K.M., (2021). Caregiver burden, work-family conflict, family-work conflict, and mental health of caregivers: A mediational longitudinal study. Work & Stress, 35(3), pp.217-240.
King, E.M., Randolph, H.L., Floro, M.S. and Suh, J., (2021). Demographic, health, and economic transitions and the future care burden. World Development, 140, p.105371.
Kivimäki, M., Bartolomucci, A. and Kawachi, I., (2023). The multiple roles of life stress in metabolic disorders. Nature Reviews Endocrinology, 19(1), pp.10-27.
Komuhangi, A., Jenkins, C., Nakaggwa, F., Agaba, P., Githinji, F., Ewuzie, A., Apio, J., Namwanje, A.K., Santin, O., MacDonald, M. and McShane, C.M., (2022). The needs, challenges, and burden experienced by informal caregivers in Uganda: a scoping review. Discover Social Science and Health, 2(1), p.1.
Lauzier-Jobin, F. and Houle, J., (2021). Caregiver support in mental health recovery: A critical realist qualitative research. Qualitative health research, 31(13), pp.2440-2453.
Lohrasbi, F., Alavi, M., Akbari, M. and Maghsoudi, J., (2023). Promoting psychosocial health of family caregivers of patients with chronic mental disorders: A review of challenges and strategies. Chonnam medical journal, 59(1), p.31.
Malmir, S., Navipour, H. and Negarandeh, R., (2022). Exploring challenges among Iranian family caregivers of seniors with multiple chronic conditions: a qualitative research study. BMC geriatrics, 22(1), p.270.
Murfield, J., Moyle, W., O’Donovan, A. and Ware, R.S., (2024). The role of self-compassion, dispositional mindfulness, and emotion regulation in the psychological health of family carers of older adults. Clinical Gerontologist, 47(2), pp.316-328.
Nayak, M.G. and George, A., (2021). Effectiveness of multicomponent intervention on quality of life of family caregivers of cancer patients. Asian Pacific Journal of Cancer Prevention: APJCP, 22(9), p.2789.
Nguyen, H., Rahman, A., Ubell, A., Goodarzi, Z., Maxwell, C.J., Allana, S., Tate, K., Symonds-Brown, H., Weeks, L., Caspar, S. and Mann, J., (2024). Adult day programs and their effects on individuals with dementia and their caregivers (ADAPT-DemCare): a realist synthesis to develop program theories on the how and why. Systematic Reviews, 13(1), p.265.
Omolara, J. and Ochieng, J., (2024). Occupational Health and Safety Challenges Faced by Caregivers and the Respective Interventions to Improve their Wellbeing. International Journal of Innovative Science and Research Technology (IJISRT), 9(6), pp.3225-3251.
Onomuighokpo, O.H., Obohwemu, K.O., Oboratare, O., Ejiroghene, U.C., Ogheneruona, O.K., Onyeogo, I.D., Omofuoma, D. and Omokiti, D., (2025). Weak Correlations and Strong Implications: Patient Age, Functional Status, and Caregiver Burden. The American Journal of Interdisciplinary Innovations and Research, 7(01), pp.51-59.
Safiri, S., Ghaffari Jolfayi, A., Fazlollahi, A., Morsali, S., Sarkesh, A., Daei Sorkhabi, A., Golabi, B., Aletaha, R., Motlagh Asghari, K., Hamidi, S. and Mousavi, S.E., (2024). Alzheimer's disease: a comprehensive review of epidemiology, risk factors, symptoms diagnosis, management, caregiving, advanced treatments and associated challenges. Frontiers in Medicine, 11, p.1474043.
Sun, Y., Ji, M., Leng, M., Li, X., Zhang, X. and Wang, Z., (2022). Comparative efficacy of 11 non-pharmacological interventions on depression, anxiety, quality of life, and caregiver burden for informal caregivers of people with dementia: A systematic review and network meta-analysis. International journal of nursing studies, 129, p.104204.
Szlamka, Z., Hanlon, C., Tekola, B., Pacione, L., Salomone, E., WHO CST Team, Servili, C. and Hoekstra, R.A., (2022). Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities. Plos one, 17(9), p.e0272077.
Taban, M., Nooraeen, S., Tanha, K., Moradi-Lakeh, M. and Malakouti, S.K., 2024. Effectiveness and cost-effectiveness of community-based mental health services for individuals with severe mental illness in Iran: a systematic review and meta-analysis. BMC psychiatry, 24(1), p.256.
Velloze, I.G., Jester, D.J., Jeste, D.V. and Mausbach, B.T., (2022). Interventions to reduce loneliness in caregivers: An integrative review of the literature. Psychiatry Research, 311, p.114508.
Williams, A. P., & Lum, J. M. (2020). "Three: Unpaid informal carers: The ‘shadow’ workforce in health care". In Support Workers and the Health Professions in International Perspective. Bristol, UK: Policy Press. Retrieved Feb 12, 2025, from https://doi.org/10.51952/9781447352112.ch003
Yao, H., Li, K., Li, C., Hu, S., Huang, Z., Chen, J. and Xu, Y., (2024). Caregiving burden, depression, and anxiety in informal caregivers of people with mental illness in China: a cross-sectional survey. BMC psychiatry, 24(1), p.824.
Zembe-Mkabile, W., (2023). Social protection as a nutrition-sensitive instrument to address malnutrition in sub-Saharan Africa: Examining the utility of the UNICEF conceptual model of care for maternal and child nutrition. Journal of International and Comparative Social Policy, 39(3), pp.295-305.
Zhang, J., Wang, J., Liu, H. and Wu, C., (2023). Association of dementia comorbidities with caregivers’ physical, psychological, social, and financial burden. BMC geriatrics, 23(1), p.60.