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

Abstract

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