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.

Tackling the escalating burden of care in Uganda: a qualitative exploration of the challenges experienced by family carers of patients with chronic non-communicable diseases

“…As the majority (approximately 84%) of Ugandans live in rural areas, most family carers are based in rural communities, which are likely to be remote and lack health service provision [ 11 ]. In this context, carers are central to maintaining the care needs of sick or disabled relatives [ 12 , 13 ], with similar findings identified in other low and middle-income countries (LMIC) [ 14 ].…”

“…This is in part due to the paucity of research into the needs of carers in Sub-Saharan Africa, with the WHO acknowledging that almost no information is available on unpaid carer needs in many Sub-Saharan countries including Uganda [ 2 ]. As such, family carer needs remain an invisible and neglected determinant of health care which deserve to be given due attention [ 12 ].…”

Burdens and Difficulties Experienced by Parental Caregivers of Children and Adolescents with Idiopathic Nephrotic Syndrome in Mainland China: A Qualitative Study [Letter]

“…This may limit the generalizability of the findings to INS caregivers in other regions. 3 Finally, the article also has limitations in social and economic representation, so the findings may not be fully relevant for INS caregivers from different social and economic backgrounds.…”

Culturally Informed Parenting Assessment: The Adaptation of the Alabama Parenting Questionnaire with Input from Ugandan Experts and Parents

“…For example, many Ugandan parents now have greater access to information from other cultures through the internet in uencing their approach to parenting. Further various contextual socioeconomic factors, such as poverty, caregiver health issues, the prevalence of diseases, and poor healthcare systems continue to mold the context of parenting in Uganda (Komuhangi et al, 2022).…”