Specifying the role of renal carers in psychological interventions for haemodialysis patients from South Asian backgrounds

Background: Depression is common amongst patients being treated by haemodialysis (HD) and known to negatively impact health related quality of life and treatment outcomes. Much of what is known about psychological adjustment to HD and linked to this, suitable intervention has been gleaned from studies with predominantly white English speaking patients despite a significant proportion of HD service users belonging to Black and Asian Minority Ethnic (BAME) backgrounds. Over the past 5 years, a team of multi-disciplinary researchers from across the UK have begun to try and unearth suitable depression screening practices and key components of intervention for those from South Asian backgrounds (with origins in India, Pakistan and Bangladesh). South Asian patients represent the largest of ethnic minority HD service users and across some units in the country are the dominant patient group. Thus far we have been successful in overcoming language and cultural barriers by providing opportunities to participate in focus groups, and psychological assessment for 4 distinct South Asian subgroups. This was achieved through the use of trained bilingual researchers and high quality translations of patient reported outcome measures. Key findings of the programme of research to date have been that (1) South Asian patients describe symptoms akin to depression when asked about mood on HD (2) patients are willing to participate in culturally tailored depression screening, which seems to work well at tapping into problematic symptoms (3) any intervention for South Asian patients would benefit from being framed within the context of the family as many patients rely on carers as a source social support including as an aid to facilitate treatment understanding and engagement.

Aims: In this research, we aim to use a qualitative focus group methodology to find out more about the role of carers of South Asian HD patients in order to explore their:
• Experiences of supporting patient adjustment to HD.
• Thoughts and feelings about the most effective strategies for engaging patients in psychological intervention for low
mood.
In doing so, we will focus on the carers of patients from Gujarati and Pakistani backgrounds since these subgroups are the most highly represented across renal services in the UK. We will provide own language based focus groups to encourage diverse carer participation.

Outcomes: The findings of this research will provide the final piece of information needed before specifying and piloting a psychological intervention for South Asian HD patients aimed at tackling low mood/ depression. As such, the project will bring together the outcomes of individual pieces of work and lead to sharing of expertise on engaging patients from BAME backgrounds in research, and providing them with equal access to depression screening as well as treatment.