Informal Caregiving in Musculoskeletal Conditions: A Systematic Review and Thematic Synthesis of Qualitative Studies
Nanati Legese Alemu, Temam Beshir Raru, Jennifer J. Watts, Suzanne Robinson, Gang Chen, Lan GaoBackground
Informal caregivers are central to community‐based health and social care systems, yet their contributions and support needs remain poorly integrated into formal service provision for people living with long‐term conditions, including musculoskeletal conditions (MSCs).
Objective
To synthesise qualitative evidence on informal caregivers’ experiences within community and healthcare systems when supporting adults with MSCs, incorporating care recipient perspectives where available.
Methods
This study is a systematic review of qualitative and mixed‐methods studies with extractable qualitative data. Searches were conducted in MEDLINE, Embase, CINAHL and PsycINFO. Title and abstract screening was undertaken by one reviewer, and full‐text eligibility assessment was conducted independently by two reviewers. Thematic synthesis was undertaken to identify inductively derived themes and to develop higher‐order analytical domains drawing primarily on caregiver accounts, with care recipient perspectives incorporated where available. Methodological quality was appraised using the CASP Qualitative Checklist.
Results
Eighteen studies were included. Informal caregivers, most commonly spouses or adult children, described caregiving as involving sustained emotional and physical demands, often undertaken with limited preparation or formal support. Five interrelated meta‐themes were identified: (1) caregiving as invisible and systemically marginalised work; (2) embodied and emotional labour; (3) relational reconfiguration and dyadic tension; (4) social and economic contraction of everyday life; and (5) meaning‐making and relational resilience. Care recipients reported emotional strain, guilt about being a burden and shared experiences of relational and social loss. Alongside cumulative burden, caregiving was also associated with strengthened relationships and personal meaning.
Conclusions
Informal caregiving in MSCs constitutes relational and embodied labour shaped by illness invisibility, fluctuating trajectories and limited recognition within services. Findings highlight the need for caregiver‐inclusive communication, information and support across community‐based musculoskeletal care pathways.