Illness, normality and identity: the experience of heart transplant as a young adult

Abstract

Purpose: End stage heart failure and transplant present great opportunities and challenges for patients of all ages. However, young adulthood may present additional specific challenges associated with the development of identity, career and romantic relationships. Despite recognition of greater mortality rates in young adults, consideration of the experience of transplant during this life stage has been largely overlooked in the literature. The aim of this study was to explore the experience of heart transplant in young adults.Method: Interviews were conducted with nine participants across three transplant services in the United Kingdom and the data subject to interpretative phenomenological analysis.Results: Analysis identified three themes. “Separating from illness” and “working toward normality” involved limiting the influence of illness on identity, as well as reengaging with typical functioning in young adulthood. “Integrating transplant into identity” involved acknowledging the influence of living with a shortened life expectancy.Conclusions: The need for support that recognizes specific challenges of transplant as a young adult is discussed (e.g. the development of age specific end of life pathways, improved communication between transplant recipients, their families and teams), including consideration of the impact of societal discourses (e.g. gift of life) which provided additional challenges for patients.IMPLICATIONS FOR REHABILITATIONHeart transplant presents specific challenges according to the recipient’s life stage.The needs of young adult recipients should be considered.Transplant professionals should consider providing opportunities for peer support and addressing the identities and values of young adult transplant recipients during rehabilitation.