Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis – a qualitative study

• DOI: 10.1371/journal.pone.0302525
• Publication Date: 2024-05-09T17:49:45Z
• Authors: Michael Matthews; Clare McKeaveney; Helen Noble; Joanne Reid
• Keywords: End-stage kidney disease

Background Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients their informal caregivers. Caregivers anxiety, depression, social isolation negatively impacting overall wellbeing resulting in caregiver burden. The needs of this group caregivers have been largely neglected, little emphasis placed on supportive interventions that might assist support them caring role. Aim aim study Is to explore the unmet experiences ESKD haemodialysis, determine components a intervention. Design A qualitative using semi-structured interviews (n = 24) An interpretive framework was employed generate rich understanding Data analysed thematic analysis. Interviews were transcribed verbatim data management assisted through NVIVO version 11. Setting/Participants Twenty-four purposively recruited from two settings within Northern Ireland. Results Three themes identified: (1) negative impact distress, due caregiving responsibilities (2) Inadequate information knowledge about complexities renal care (3) benefits spiritual beliefs, stress peer relieving Conclusions are at increased risk psychological distress burden arising unpredictable nature treatment impacts adds not always adequately met they subsequently lack appropriate knowledge, skills, guidance Supportive essential enhance capability deliver effective improve quality life.