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
Summary of Research
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.
Summary of Results
Study Title: Exploring the Treatment Experiences of Adolescents Living with Cystic Fibrosis.
Authors
Jade Alexander1,4, Dr David McCormack 1, Dr Joanne Menary2, Dr Karen Keown3, Dr Mairead Mullen3
1 School of Psychology, Queen’s University Belfast, Belfast, Northern Ireland
2 Southern Health and Social Care Trust, Northern Ireland
3 Belfast Health and Social Care Trust, Northern Ireland
4 Correspondence should be directed to Jade Alexander, School of Psychology, Queen’s University Belfast; jalexander11@qub.ac.ukSponsor: Queen’s University Belfast
No potential conflict of interest was reported by the authors.
The treatment landscape for adolescents living with Cystic Fibrosis has changed rapidly in recent years and as such there is a need for updated research exploring their treatment experiences. The aims of this study were to explore the treatment experiences of adolescents aged 14-18 years living with Cystic Fibrosis. Ten adolescents with a diagnosis of Cystic Fibrosis were recruited for the study. Participants were recruited from a specialist regional Cystic Fibrosis clinic. Semi-structured interviews were completed with participants and interviews were transcribed and analysed using Interpretative Phenomenological Analysis. This study offers valuable insights into the treatment experiences of adolescents living with CF and the impact of recent treatment changes. The analysis uncovered multifaceted themes, including the emotional impact of treatment, its influence on everyday life, a shifting treatment landscape, and empowerment through individual efforts and support from others. Moving forward, further research on adolescents lived experiences and perspectives of CF would be useful for addressing their evolving needs and ensuring optimal support.
Exploring the treatment experiences of adolescents living with cystic fibrosis Alexander, J. (Author). Dec 2024 Student thesis: Doctoral Thesis › Doctorate in Clinical Psychology
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REC name
HSC REC A
REC reference
22/NI/0072
Date of REC Opinion
19 Oct 2022
REC opinion
Further Information Favourable Opinion