Quality of life domains among caregivers of children with special health care needs in South Asia: a qualitative evidence synthesis.
4 affiliations
- 1Department of Health Policy, National Center for Child Health and Development, 2-10-1 Okura, Setagaya, Tokyo, 157-8535, Japan. [email protected].
- 2Department of Health Policy, National Center for Child Health and Development, 2-10-1 Okura, Setagaya, Tokyo, 157-8535, Japan.
- 3Center for Outcomes Research and Economic Evaluation for Health, National Institute of Public Health, 2-3-6 Minami, Wako, Saitama, 351-0197, Japan.
- 4Graduate School of Medicine, Yokohama City University, Yokohama, Kanagawa, 236-0027, Japan.
Abstract
Background
Increasing survival of children with chronic and developmental conditions has intensified reliance on informal family caregiving, particularly in South Asia, where formal long-term care systems remain limited. The quality of life (QoL) of caregivers, therefore, represents an emerging yet underexamined health system and social concern. This qualitative evidence synthesis examines the domains that shape caregiver QoL and situates them within broader social and health system contexts.Methods
A two-stage search strategy was employed. First, five databases (MEDLINE, Embase, PsycINFO, CINAHL, and Cochrane Library) were searched from inception to January 2025 to identify systematic reviews; titles, abstracts, and full texts were independently screened by two reviewers. These systematic reviews served solely as a structured vehicle to identify primary studies conducted in South Asia, which were then retrieved, supplemented through hand searching, and independently screened against predefined eligibility criteria. Eligible studies were qualitative or mixed-method studies, conducted in South Asia, focused on informal caregivers of children under 18 years with special health care needs, and reporting verbatim caregiver narratives. Thematic synthesis was conducted using Braun and Clarke's six-phase approach, and the findings were interpreted using Bronfenbrenner's Ecological Systems framework.Results
Eighteen primary studies (2010-2024) from Bangladesh, India, Nepal, Pakistan, and Sri Lanka met the inclusion criteria. Eleven interrelated domains were identified, spanning psychological and physical strain, family dynamics, stigma and social exclusion, gendered role expectations, faith-based coping, financial hardship, and structural resource constraints. Caregiver QoL was shaped not only by individual caregiving demands but also by intersecting family, community, and systemic influences, including incomplete financial protection and limited long-term care infrastructure.Conclusions
Informal caregivers' QoL in South Asia is deeply embedded in structural, gendered, and health-system contexts. Improving caregiver well-being requires strengthening and expanding caregiver support through health and social protection systems, including improving financial risk protection, expanding decentralized long-term care services, and recognizing caregiving as a shared societal responsibility to reduce caregiver burden and prevent widening socioeconomic inequities.
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BibTeX
@article{pathirathna2026quality,
title = {{Quality of life domains among caregivers of children with special health care needs in South Asia: a qualitative evidence synthesis.}},
author = {Malshani Lakshika Pathirathna and Motoko Tanaka and Emi Kamono and Kunio Ogawa and Eri Hoshino},
journal = {International journal for equity in health},
year = {2026},
month = jul,
doi = {10.1186/s12939-026-02966-0},
url = {https://europepmc.org/article/MED/42972413},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Quality of life domains among caregivers of children with special health care needs in South Asia: a qualitative evidence synthesis.
AU - Malshani Lakshika Pathirathna
AU - Motoko Tanaka
AU - Emi Kamono
AU - Kunio Ogawa
AU - Eri Hoshino
PY - 2026
DA - 2026/07/31
JO - International journal for equity in health
DO - 10.1186/s12939-026-02966-0
UR - https://europepmc.org/article/MED/42972413
AB - Background Increasing survival of children with chronic and developmental conditions has intensified reliance on informal family caregiving, particularly in South Asia, where formal long-term care systems remain limited. The quality of life (QoL) of caregivers, therefore, represents an emerging yet underexamined health system and social concern. This qualitative evidence synthesis examines the domains that shape caregiver QoL and situates them within broader social and health system contexts.Methods A two-stage search strategy was employed. First, five databases (MEDLINE, Embase, PsycINFO, CINAHL, and Cochrane Library) were searched from inception to January 2025 to identify systematic reviews; titles, abstracts, and full texts were independently screened by two reviewers. These systematic reviews served solely as a structured vehicle to identify primary studies conducted in South Asia, which were then retrieved, supplemented through hand searching, and independently screened against predefined eligibility criteria. Eligible studies were qualitative or mixed-method studies, conducted in South Asia, focused on informal caregivers of children under 18 years with special health care needs, and reporting verbatim caregiver narratives. Thematic synthesis was conducted using Braun and Clarke's six-phase approach, and the findings were interpreted using Bronfenbrenner's Ecological Systems framework.Results Eighteen primary studies (2010-2024) from Bangladesh, India, Nepal, Pakistan, and Sri Lanka met the inclusion criteria. Eleven interrelated domains were identified, spanning psychological and physical strain, family dynamics, stigma and social exclusion, gendered role expectations, faith-based coping, financial hardship, and structural resource constraints. Caregiver QoL was shaped not only by individual caregiving demands but also by intersecting family, community, and systemic influences, including incomplete financial protection and limited long-term care infrastructure.Conclusions Informal caregivers' QoL in South Asia is deeply embedded in structural, gendered, and health-system contexts. Improving caregiver well-being requires strengthening and expanding caregiver support through health and social protection systems, including improving financial risk protection, expanding decentralized long-term care services, and recognizing caregiving as a shared societal responsibility to reduce caregiver burden and prevent widening socioeconomic inequities.
SN - 1475-9276
ER -