Cystic fibrosis self-management in adolescence
Research type
Research Study
Full title
Cystic fibrosis self-management in adolescence: A qualitative study to explore the safety concerns of adolescents, parents and healthcare professionals
IRAS ID
272766
Contact name
Anna-Sophia Wawera
Contact email
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
2 years, 9 months, 31 days
Research summary
Research Summary
This research aims to look at how families self-manage cystic fibrosis (CF) in adolescence. Delivering CF self-management care for adolescents at home can pose considerable challenges for families, as they carry out complex care tasks that once would have been only provided by health care professionals and are faced with various care responsibilities to adequately manage the child’s condition every day. The transfer of complex self-management roles and responsibilities from health care professionals to families along with the various stakeholders involved in the care of a young person with CF has the potential to lead to safety concerns for families and healthcare professionals. The primary interest of this study is therefore to explore how adolescents, parents and clinicians specialised in CF care perceive safety issues relating to CF self-management. In-depth, open-ended interviews will be used to explore the perspective of adolescents aged 10-18 with CF, their parents and CF healthcare professionals, utilising creative methods such as photography and drawing to elicitate the views of adolescents. Participants will be recruited through the Manchester University NHS Trust and the study is funded by the National Institute for Health Research (NIHR) through the Greater Manchester Patient Safety Translational Research Centre (GM PSTRC).
Summary of Results
I carried out a study to find out what life is like for children and young people who have cystic fibrosis (CF) and how children, young people and their parents managed it. I also wanted to find out what they found difficult, and how children and young people felt about being involved in carrying out their treatments. To do this, I spoke to 7 children/young people aged 10-17 years, 13 parents and 10 professionals who helped children and young people with CF.Families (children and young people and their parents) said that the daily CF care was very time-consuming and certain activities, such as physiotherapy, were boring and repetitive. Many families felt like they were living by the clock because treatment activities had to be carried out at certain times every day and in a specific order. For some families, carrying out the treatment could take up to three hours every day and most treatment activities had to be completed every morning and every evening.
Children and young people said they sometimes found it difficult to carry out the CF treatment every day. They felt that sometimes other activities, such as meeting with friends or going on trips, got in the way of carrying out the treatment. They did not always want to tell people they had CF because they were worried about what other people would think. They were sometimes sad that they had CF and could not always do what their friends were doing.
Parents said that they felt responsible for making sure that their child carried out the treatment every day, but they sometimes struggled to fit the treatment into their child’s days. They also wanted to help their child to carry out some of the treatment activities on their own as they got older, but they were worried that their child would not do the treatment properly without their help. They felt that they often had to remind their child to do the treatment.
Parents, children and young people said that they sometimes had to make adjustments to the treatment to live a normal life. Professionals said that they knew about the struggles of families to fit in the treatment every day. They wanted to help families to make healthy decisions about how they could adjust the treatment to fit better into their daily lives.
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
20/NW/0024
Date of REC Opinion
18 Feb 2020
REC opinion
Favourable Opinion