Authors: Kai Jun Chan, Hui-Chen Chen, Koon Zhi Hazel Lim, Ching Siang Cindy Lee
Background: The diagnosis of End-Stage Renal Disease (ESRD) and requiring dialysis is an event that can shock a family. The concept of caregiver stress, burden, and strains were explored in existing literature to capture the impact on family members who assumed the caregiving role. However, the overall experience of caregiving, psychosocial needs and seeking support remains virtually untouched. Understanding the caregiving experience, psychosocial needs, and process of seeking support can shed light on the resources current use, and exposed areas in need of further development. Aim: The aim of the study was to understand the caregiving experience of caregivers who were caring for adult patients with ESRD in Singapore. Method: An exploratory qualitative approach was adopted for this study. Purposive sampling was used to recruit 16 caregivers for patients with ESRD in a tertiary hospital in Singapore. Data was collected using a semi-structured face-to-face interview and analysed using thematic analysis. Result: Four themes were generated: intrusion of illness, immersion in illness, embracing positive conceptualizations and experience with support. Among which, it was highlighted that ESRD is a chronic illness with acute changes to long haul with unstable phases, and that forced caregivers to accept intrusion and immerse in the illness quickly. Despite caregiving being a difficult experience, caregivers were able to embrace positive conceptualizations with the appropriate social support. Conclusion and Implications: Caregivers of patients with ESRD faced multiple psychosocial problems and thus, there is a need for interventions. Based on findings of this study, nurses could implement self-care education that focus on bringing out the strengths of the caregiving experience. Intermittent home care services could also be developed to better prepare, train and support caregivers in future.
Keywords: Caregiver, End-Stage Renal Disease, qualitative, experience