My husband is my responsibility:” motivations and activities of informal caregiving for patients with chronic diseases in Uganda

Informal care is a vital part of care for many people with chronic diseases in sub-Saharan Africa. Though challenging and demanding, many individuals are involved in the provision of this care. However, it is unclear what motivates people in sub-Saharan Africa to provide informal care. Therefore, this study explored the motivations to becoming informal caregivers of patients with chronic diseases in Uganda. Focus group discussions (FGDs) were conducted among 33 informal caregivers of patients with chronic diseases at Mbarara Regional Referral Hospital in Uganda. The participants were purposively sampled into one of five FGDs. Discussions were audio-recorded, transcribed verbatim and manually analysed using thematic analysis. The informal caregivers were aged 18 to 67, with 72.7% being females. They were all related to their respective care recipients. Six themes describing the motivations for becoming a caregiver emerged including reciprocity, love, caring as a responsibility, availability to care, desire to improve the patient’s health and desire to protect others from burden of care. Also, themes for caregiver activities were: approach to caregiving, activities of daily living, activities that require medical training, activities that motivate the patient and activities that support other informal caregivers. The results indicate that multiple factors motivate people to become informal caregivers and that their activities benefit both the patients and other caregivers. These findings highlight the need for policymakers to design a framework that would enable health workers to collaboratively work with informal caregivers to achieve better experiences and outcomes for both patients and caregivers.