Informing the development of an intervention to support informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis (EVOLVE 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. <br><br>Results<br>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. <br><br>Discussion<br>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. <br><br>Conclusion<br>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.<br><br><i> Thesis is embargoed until 31 December 2028.</i>