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Background <p>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.</p> Methods <p>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.</p> Results <p>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.</p> Conclusions <p>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.</p>

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Quality of life domains among caregivers of children with special health care needs in South Asia: a qualitative evidence synthesis

  • 期刊论文

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  • 发表日期：

    2026年7月31日

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  • Malshani Lakshika Pathirathna,
  • Motoko Tanaka,
  • Emi Kamono,
  • Kunio Ogawa,
  • Eri Hoshino

摘要

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.