ACORN: Caregiver experiences of conservative management of ESKD
Research type
Research Study
Full title
Exploration of CAregiver experienCes Of conseRvatively maNaged end-stage kidney disease to inform development of a psychosocial intervention: The ACORN Study
IRAS ID
306036
Contact name
Helen Noble
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
1 years, 11 months, 29 days
Research summary
End-stage kidney disease (ESKD) is an illness where a person's kidneys can no longer filter their blood. Some patients with ESKD can receive a kidney transplant or filter their blood through dialysis, other patients though choose conservative management. Conservative management (CM) is where a person does not receive dialysis and instead their symptoms and quality of life are prioritized. The experiences and needs of carers of people with ESKD receiving CM are not well understood, meaning there is limited support for carers. This is a particular problem as patients experience difficult symptoms, and their mental health and quality of life are also impacted. It is important that there is support available for carers of people with ESKD receiving CM particularly as the patient is approaching death. This study aims to address this gap by carrying out interviews with carers of people with ESKD receiving CM in Northern Ireland and London, to explore their experiences of providing care to someone with ESKD receiving CM. We will also conduct focus groups with healthcare professionals who have worked with patients with ESKD receiving CM, to identify unmet needs of carers. Finally, the findings from these interviews and focus groups will be explored in two national workshops, one in Northern Ireland and the other in England, where we will develop the first parts of an intervention to help support the needs of carers of patients with ESKD receiving CM.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
22/EE/0089
Date of REC Opinion
7 Jun 2022
REC opinion
Further Information Favourable Opinion