The Treatment Experiences of Adolescents with Cystic Fibrosis
Research type
Research Study
Full title
Exploring the Treatment Experiences of Adolescents Living with Cystic Fibrosis.
IRAS ID
304374
Contact name
David McCormack
Contact email
Sponsor organisation
Queen’s University Belfast
Duration of Study in the UK
0 years, 9 months, 28 days
Research summary
This study aims to explore the treatment experiences of adolescents, aged 14-18 years living with Cystic Fibrosis (CF). The study aims to recruit ten participants, aged 14-18, with a diagnosis of CF. Participants will be recruited through purposive sampling from a specialist regional CF clinic. A qualitative research design will be used. Semi-structured interviews will be conducted, and the data obtained from these will be analysed using Interpretative Phenomenological Analysis. Interviews will be expected to last between 30-60 minutes. Interviews will be conducted in a private room at the CF clinic or the Clinical Psychology Department at the Royal Belfast Hospital for Sick Children or via video call using MS teams (the participant will be offered a choice of interview location/format). While there has been qualitative research that has provided an insight into the lived experiences of children and adolescents with CF, this research has either focused too narrowly on treatment adherence or the experience of specific treatments (e.g., needle-related pain and distress) or taken too broad a focus on what it is like to grow up with CF. In addition, much of this lived experience research has been conducted over 20 years ago, and there have been significant changes in life expectancy and treatment burden over this time, as novel treatments have continued to be added to an already complex treatment regimen. Finally, there is no current research exploring how adolescents with CF have experienced recent changes in their treatments, including the introduction of new CFTR modulator therapies and changes related to the COVID-19 pandemic. To address these gaps in the literature, this study aims to investigate the treatment experiences of adolescents with CF and the impact of recent changes in their treatments.
REC name
HSC REC A
REC reference
22/NI/0072
Date of REC Opinion
19 Oct 2022
REC opinion
Further Information Favourable Opinion