ArticlePloS one2024
Exploring the unmet needs and experiences of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis - a qualitative study.
Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Caregiver experiences of social isolation and loneliness in chronic kidney disease: systematic review of qualitative studies.BMJ open · 2026Pooled it
- From patient to partner: reflections on being a patient leader in the COMFORT Nursing Programme.Research involvement and engagement · 2026Article
- 'It Just Wears You Down': A Qualitative Exploration of the Experiences and Wellness Needs of Organ Transplant Caregivers to Inform the Development of Support Resources.Healthcare (Basel, Switzerland) · 2026Article
- e-Mental Health Intervention Preferences Among Informal Caregivers of Adults Living with Chronic Kidney Disease: Semistructured Interview Study.JMIR human factors · 2026Article
- Attitudes and experiences of nurses and carers with the carer support needs assessment tool intervention (CSNAT-I).BMC nursing · 2025Article
- A qualitative exploration of cAregiver experienCes Of conseRvatively maNaged kidney failure: the ACORN study.BMC nephrology · 2025Article
- Informal Palliative Care at Home: A Focus Group Study Among Professionals Working in Palliative Care in Portugal.Healthcare (Basel, Switzerland) · 2025Article
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4 authors.
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Abstract
backgroundPatients 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.
aimThe 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.
designA 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/
participantsTwenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland.
resultsThree 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.
conclusionsCaregivers 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.
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