Informing the development of an intervention to support informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis (EVOLVE Study)

Abstract

Introduction:
Patients receiving haemodialysis experience substantial symptom burden. These symptoms are complex and are associated with reduced physical function, poor treatment tolerance, impaired psychological and emotional wellbeing, all of which have a negative impact on their overall health related quality of health. Patients with ESKD receiving haemodialysis find it increasingly difficult to manage these symptoms and are becoming more dependent on informal caregivers to support them. Informal caregivers of patients with ESKD receiving haemodialysis assume many roles and responsibilities to support their loved ones such as assisting with personal and domestic tasks, managing medications and diet and fluid intake, monitoring health and managing complications, communicating with healthcare providers and offering emotional and psychological support. Informal caregivers often struggle to provide the level of support required which has a subsequent negative impact on their informal caregiving experience.

Aim
To explore the experiences and unmet needs of informal caregivers of patients with ESKD receiving haemodialysis and to identify components of a supportive intervention to support this cohort of informal caregivers in their caregiving role.

Methods
A qualitative exploratory study informed by the transactional stress theory was employed in the study. Data was collected through semi-structured interviews with informal caregivers of patients with ESKD receiving haemodialysis (n=24), two focus groups (n=17) and a deliberative renal workshop (n=42). The semi-structured interviews and focus groups were audiotaped and transcribed verbatim. The data was analysed using a thematic approach, and NVivo was used to help manage the data.

Results
Three overarching themes were revealed from the semi-structured interviews with informal caregivers of patients with ESKD receiving haemodialysis: psychological and emotional challenges associated with informal caregiving, challenges associated with provision of direct patient care, factors influencing a more positive caregiving experience and what would enhance the informal caregiving experience? For healthcare professionals involved in the care of patients with ESKD receiving haemodialysis and their informal caregivers, barriers identified by healthcare professionals in the development of a supportive intervention for informal caregivers of patients with ESKD undergoing haemodialysis and building components of a supportive intervention for informal caregivers of patients with ESKD undergoing haemodialysis. In the deliberative renal workshop participants identified potential components to be included in a supportive intervention for informal caregivers of patients with ESKD receiving haemodialysis and how such an intervention might be delivered in the practice setting.

Discussion
While there are some positive aspects associated in providing informal care to patients with ESKD receiving haemodialysis, the majority of informal caregivers find it challenging to fulfil the requirements of their informal caregiving role. The guidance and support offered from healthcare professionals is limited and informal caregivers were generally left to acquire their own knowledge and develop skills to assist them in the delivery of informal care, resulting in informal caregivers becoming anxious, depressed, and unable to meet the care needs of their loved ones. There is clearly an opportunity to understand the experiences and perspectives of this cohort of informal caregivers, and so develop a supportive intervention to assist them in the delivery of their informal caregiving role.

Conclusion
The current study makes an original contribution to knowledge by advancing understanding about the needs and experiences of informal caregivers of patients with ESKD receiving haemodiaysis. Recommendations have been made in respect of the components to be included within a supportive intervention, the aim of which is to ensure meaningful therapeutic communication between informal caregivers and healthcare professionals. Furthermore, a supportive intervention should be tailored to the informal caregivers’ specific needs as their loved one moves along the illness trajectory.

Thesis is embargoed until 31 December 2028.

Date of Award	Dec 2026
Original language	English
Awarding Institution	Queen's University Belfast
Sponsors	Northern Ireland Kidney Research Fund
Supervisor	Clare McKeaveney (Supervisor), Joanne Reid (Supervisor) & Helen Noble (Supervisor)