Empowerment in young people with CF during key life transitions
Research type
Research Study
Full title
Developing a grounded theory of empowerment in children and young people with cystic fibrosis during key life transitions.
IRAS ID
234289
Contact name
Naomi Fairweather
Contact email
Sponsor organisation
Canterbury Christ Church University
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Cystic fibrosis (CF) is a life-limiting genetic condition affecting 10,800 people in the UK (Cystic Fibrosis Trust, 2017). CF is a multisystemic condition requiring complex daily treatment. Adults with long term health conditions who feel empowered have better health and social outcomes (Powers & Bendall, 2003; Bajorek, Hind & Bevan, 2016). Much of what is known about patient empowerment focuses on adults and little is known about the influences on and impact of empowerment during key childhood life transitions such as changing schools, becoming more independent at home, developing friendships and romantic relationships, moving from paediatric to adult CF services and moving out of the family home. Therefore, this project aims to develop a theory of empowerment in children and young people growing up with CF by exploring how children and young people, their parents and clinicians experience empowerment during key life transitions, and what the perceived facilitators, barriers and consequences of empowerment are. Children and young people aged 11-19 with CF, their parents and clinicians will be invited to take part in interviews about growing up with CF in different contexts (home, school, hospital/clinic). Interviews will be individual, take place in an NHS location familiar to the participant or via video-conferencing (e.g. Skype) and will usually last less than 1 hour, with some participants being invited for an optional second interview. Information from interviews will be analysed using a qualitative (word based) methodology called grounded theory. Grounded theory involves constructing a model (explanation) from themes identified in the data (in this case transcripts of interviews with children and young people, parents and clinicians). It is hoped that a better understanding of empowerment in children and young people with CF during times of transition could lead to recommendations which may result in improved physical, psychological and social outcomes.
REC name
London - Bromley Research Ethics Committee
REC reference
18/LO/0450
Date of REC Opinion
15 Jun 2018
REC opinion
Further Information Favourable Opinion