Young adults' experiences of decision-making
Research type
Research Study
Full title
Young adults' experiences of dialysis and kidney transplant decision-making and its impact on well-being
IRAS ID
253921
Contact name
Sarah Ofori-Ansah
Contact email
Sponsor organisation
London South Bank University
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Young adults with chronic illness, can become overwhelmed with the burden of long-term chronic illness (Coulter and Collins, 2011). Those with chronic kidney disease struggle to accept diagnosis and prognosis and to cope with the complex management of the illness (Ritchie et al., 2012; Ferris et al., 2016). Once their kidneys fail, they have to work with their healthcare professionals to make decisions to select a dialysis and kidney transplant choice in a process referred to as shared decision-making (NICE 2014; NICE, 2018), at least six to 12 months before the need to start.
Although various guidelines and policies promote patient rights, choice and involvement in treatment decisions and care, as outlined in the NHS long term plan (NICE, 2019a) and the Universal personalised care (NICE, 2019b), involvement is inconsistent and not all patients experience it (Joseph-Williams et al., 2017).
Despite kidney transplant being regarded as a better option, a survey of young people living with kidney failure reported that 51.8% of young adults started haemodialysis as their first kidney failure treatment and only14.1% received kidney transplant before the need to start dialysis (Hamilton et al., 2018), The reason for the trend is less understood and yet to be explored. Less studies have explored young adults’ decisions-making and its impact on their psycho-social and mental well-being from their perspective.
This study will use semi–structured interviews to explore young adults’ lived experiences of making decisions in selecting a dialysis or kidney transplant treatment to understand their experiences and its impact on their well-being. A purposeful sampling method will be used to identify and recruit 20 young adults with kidney failure, aged 18 to 30 years living in the UK to the study. The findings will be discussed with the renal community on how to better support young adults’ during the decision-making process and to reduce its impact on their psychosocial and mental well-being.
REC name
London - Bromley Research Ethics Committee
REC reference
19/LO/1855
Date of REC Opinion
9 Jan 2020
REC opinion
Further Information Favourable Opinion