Experiences of Healthcare Professionals and Patients in Paediatric Cystic Fibrosis: Making and Breaking Bonds

Electronic versions


  • Samantha Jones


This thesis explores the experience of Cystic Fibrosis (CF) in young people and healthcare professionals across three papers. Firstly, a systematic literature review explores the experiences of peer support for young people with CF, including peer support with CF peers, non-CF peers, impact of segregation, diagnosis disclosure, need for and purpose of peer support and parental and peer relationships. The need for social support in the lives of young people with CF was highlighted. The findings emphasised the need to continue addressing social needs of youth with CF, particularly finding ways to reduce the risk of cross-infection if youth choose to pursue friendships with CF peers. Limitations to the evidence base prevented reciprocal associations, bi-directional relationships and changes over time to be examined. Future research needs to consider the paucity of literature on peer support for young people with CF and potential avenues for future research are discussed. The second paper presents findings from an empirical study, qualitatively exploring the lived experiences of healthcare professionals (HCPs) working with children and adolescents with CF and the transition to adult services. This study was undertaken according to the principles of interpretative phenomenological analysis (IPA), with semi-structured interviews conducted with seven participants. Three superordinate themes emerged from the data, all dynamically intertwined and represent the interplay between both professional and (inter)-personal dynamics within CF care. Implications for clinical practice and future research are discussed. The third paper discusses implications for theory and clinical practice emerging from the first two papers. Discussion emphasises how this study examined an under-represented area and expands the opportunity to bring HCPs’ experiences and social needs of young people with CF to the foreground. This paper concludes with personal reflections on the research process and outcomes.


Iaith wreiddiolSaesneg
Sefydliad dyfarnu
Goruchwylydd / Goruchwylwyr / Cynghorydd
    Dyddiad dyfarnuIon 2016