Starting on haemodialysis: A qualitative study to explore the experience and needs of incident patients

Abstract

Dialysis can be very stressful with the initial months onto treatment being highly critical in terms of both adaptation and mortality. This qualitative study aimed to explore the lived experiences of incident haemodialysis patients in Singapore. Topics related to the end-stage renal disease diagnosis and haemodialysis treatment were raised with 13 incident haemodialysis patients in the form of semi-structured interviews, and interpretative phenomenological analysis was undertaken as the framework for data analysis. Emotional distress, treatment-related concerns and social support emerged as main issues following a critical review of themes. Our study revealed that incident haemodialysis patients have emotional and informational needs, highlighting the importance of intervention programmes in particular to this patient group to promote better psychosocial adjustment to the disease and its treatment.

A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis

“…Participants expressed frustration, because dialysis required relocation or reduced the time and energy available to care for family members or carry out family duties (27)(28)(29)35). Some participants were now dependent on family for care or assistance and worried that they had become a burden to them (28)(29)(30)37,38). Participants who thought their dialysis dependence had restricted their families' activities, such as holidays, also reported guilt (29,30,35).…”

“…When dialysis commenced, participants reported that they lost ambitions for the future, such as traveling and enjoying retirement (28,29,37,39). With dependence on dialysis, they were confronted with their own mortality (28-32,35,37,39), and this could be reinforced by the deaths of other patients in the dialysis unit (30,31,39).…”

“…Additionally, patients have fluid and dietary restrictions to which they are expected to adhere. These restrictions were often cited as sources of distress and adversely affected quality of life (24,25,(28)(29)(30)(31)33,(35)(36)(37)39,40). Participants described weighing up adherence to these restrictions against effects on their quality of life (28,30,(35)(36)(37)39).…”

“…Those required to give up employment reported this affected their sense of self as reliable and able to provide for their families (29,35,40). Additionally, dialysis affected the physical self through the creation of vascular access and other changes in appearance (25,29,36,37,39).…”

“…Changing Identity. When commencing hemodialysis, some participants struggled with feelings of vulnerability and their dependency on both dialysis treatment and caregivers (24,26,(28)(29)(30)(31)(32)(35)(36)(37)(38)(39)(40). The "assembly line" (26) nature of dialysis and lack of interest shown by staff could result in a loss of personal identity (24,26,28,35).…”