Experiences of family relationships and managing cystic fibrosis
Research type
Research Study
Full title
Experiences of family relationships and managing cystic fibrosis in adolescence using Interpretative Phenomenological Analysis
IRAS ID
228143
Contact name
Frieda Whelan
Contact email
Sponsor organisation
NHS Highland
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
Background
Cystic fibrosis (CF) is a life-limiting genetic condition, causing difficulties in several organs including the lungs and digestive system. Recent improvements in treatment have meant that those with CF are living longer. However, people with CF and their caregivers experience greater levels of anxiety and depression, meaning it is important that they are well supported psychologically. Support may be particularly important at certain times of a young person’s life, for example, when they become an adolescent and may take on more responsibility for their treatment.Aims
The present study seeks to ask how young people with CF experience becoming older and how family relationships may affect this process?Methods
Adolescents (aged 13-18) who have CF and caregivers will be recruited from CF services in two hospitals in NHS Highland and NHS Greater Glasgow & Clyde. Participants will be invited to take part in one semi-structured hour-long interview, asking about their experiences of growing up with CF (or having a child with CF) and how family relationships may have been experienced as helpful/unhelpful. Participants will not be invited to take part if it would be difficult for them to participate in an interview. Recordings of interviews will be typed up and analysed for common themes across participants.Implications
The study may lead to a greater understanding of how families experience CF and its management during adolescence and how relationships can potentially help or hinder the process. This can help to inform CF teams how best to offer support to families.REC name
South East Scotland REC 01
REC reference
17/SS/0138
Date of REC Opinion
10 Nov 2017
REC opinion
Further Information Favourable Opinion