Abstract
OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.