‘I feel useless and dependent on others’: South Asian patient experiences of haemodialysis

Abstract

Background: Owing to language barriers, less is known about how patients of South Asian origin cope with the haemodialysis (HD) treatment regimen, despite increased risk of end-stage renal disease. In the current study, focus groups were conducted with patients who communicate primarily in Gujarati, Punjabi or Urdu, with the aim of unearthing experiences of living with renal failure. Methods: Seven focus groups facilitated by bilingual researchers, were held across four NHS Trusts. Twenty-eight patients participated (15 males and 13 females). Thematic Analysis was used to explore the data. Findings: Six themes were identified; the instability of day-to-day life, social support as a double- edged sword, lifestyle restrictions, mood on dialysis, access to organs and communication with health professionals. Discussion: There are commonalities in patient experiences across different cultural groups, signalling the challenges associated with HD and living with renal failure. For those with limited English, communication through other people poses a barrier to illness ownership. Depressive symptoms feature prominently in patient descriptions of mood on dialysis and warrant advances in culturally relevant screening and intervention.