The needs, challenges, and burden experienced by informal caregivers in Uganda: a scoping review

Abstract Background The impact of informal caregiving is increasingly recognised as an important but often particularly neglected area of research in low and middle income countries. It is important to understand not only the effect of care on patient outcomes, but also the impact of caring on caregivers’ health and wellbeing. Methods Guided by the Arksey and O’Malley (Res Methodol 8:19–32, 2005) framework, this scoping review sought to collate and chart existing research on the needs, burdens and challenges experienced by caregivers in Uganda. Results The results of this review indicate that research focusing on the needs of caregivers for individuals with communicable disease, particularly HIV, has been well developed in Uganda, however, there is a lack of research on caregiving related to non-communicable diseases. Research has been dominated by small qualitative studies that are informative for understanding roles, burdens and contextually-specific aspects of care, but there is a need for larger studies that develop and test interventions designed to support the needs of caregivers. Conclusions Recurrent themes identified within this review, such as challenges in providing physical support and accessing treatment services, financial costs of care, psychological and mental health impacts and the experience of stigma, should help to inform well targeted and contextually-appropriate future research and interventions.