Family Experiences of Cystic Fibrosis
Research type
Research Study
Full title
What are the experiences of families in managing the dynamics around cystic fibrosis? - A qualitative photo elicitation study
IRAS ID
333858
Contact name
Rosalind Hatton
Contact email
Sponsor organisation
University of Leeds
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 6 months, 12 days
Research summary
This research is a single centre study based at a regional paediatric CF centre in a teaching hospital within Yorkshire, and will be a qualitative study taking approximately 12 months to complete. This research will focus on families with a child with cystic fibrosis and will explore the effect cystic fibrosis has on the whole family. Cystic fibrosis (CF) is a life-limiting condition, which often requires lengthy daily treatment routines (Gathercole, 2019). The treatment landscape of CF has changed significantly in recent years with the development of modulator drugs (De Boeck, 2020). This has likely greatly impacted on the whole family. Moreover, whilst some research has looked at the effect cystic fibrosis has on individuals, the researchers are not aware of any study looking at the family unit. To be able to offer the right support and resources, it is important to understand the impact that cystic fibrosis has on families. This study aims to recruit 3-5 families to explore this. Participants can decide which family members take part as all families are different. We will ask that at least 2 family members participate, with one of them being the child with CF. Previous research has demonstrated the usefulness of techniques such as photo elicitation – where participants choose photos to share – in opening up conversation, and we will adapt that for this study. We will ask each family member involved in the interview to prepare at least two creative items (e.g. photos / pictures / stories) that show how cystic fibrosis effects them. The family can also do this together. We will then meet with the family as a whole to discuss the creative items together. The interviews will be audio-recorded, transcribed and analysed using Interpretative Phenomenological Analysis, a popular method of analysing qualitative data that is suitable for analysing our interviews.
Lay Summary:
Study objectivesThis study aimed to develop an understanding of the experiences of families in managing the dynamics around cystic fibrosis (CF). A secondary aim of the study was to explore the experiences of individual family members as the treatment landscape of cystic fibrosis has changed greatly in recent years. This study planned to achieve these aims through an adapted photo elicitation methodology.
The following section confirms that this study met its objectivesSummary of main findings
This study identified a journey, starting from when cystic fibrosis (CF) is first diagnosed, that families with CF (FwCF) may embark on. The interviews suggest that this journey may start with fear and information overload but, in their own way, FwCF learn ways of adapting to life with CF. However, the journey is not linear due to the need for renegotiations around how the family live with CF, particularly as the child(ren) with CF (CwCF) develop(s) or their health needs change. Fear also exists around the child becoming unwell and things becoming overwhelming again.
Moreover, whilst FwCF may make sense of the condition together, individuals may experience points of the journey asynchronously. For example, the participating CwCF were not aware of the diagnosis when it was made but became aware of it as they grew older whilst their parents were thrown, with full awareness, into the CF world at diagnosis. Other findings are that CF is not well understood by the general public, potentially because it is a rare condition, and can make children stand out from their peers, which can be challenging for FwCF to cope with.Clinical implications
A CF diagnosis can be overwhelming for families, and clinical teams should consider how much information is initially delivered.
Hospital stays or treatment changes can challenge family coping strategies.
Families may need support to identify coping strategies that fit their unique needs.
Newly diagnosed families with CF may benefit from meeting families that have lived with a CF diagnosis for longer.Research Implications
The study showed that whole family interviews using VEI are feasible and allow for rich, meaningful insights to be made. These insights may even be new to the individual and family themselves. Children seemed able to say whether they want to participate in this methodology, and some enjoy the opportunity of bringing their own creative items to the interview. When using VEI with a whole family, the creative items likely purely act as stimuli for discussion as family members make sense of their experiences together rather than being led by the researcher. Creative items inherently allow for playfulness within the interview, which can help children engage. However, pre-existing dynamics around power and communication within the family will likely persist within the interview and affect the level of child participation. Additionally, whilst interviewing family members together can provide a supportive environment, it can also change what is shared and the details in which it is shared. It can be hard for families to hear about each other’s pain. Additionally, some families may find it more difficult to discuss things together and support each other than our participants did. This needs to be discussed when initially recruiting families and attended to when interpreting the results. If families struggle to engage in family-unit sense making (Koenig & Trees, 2006), then IPA analysis may be harder. Future studies using this methodology should consider how the creative items are displayed as well as the timing, location and length of the interview. It may also be helpful to state explicitly that it is hoped that all immediate family members, as defined by the family, participate if they themselves are willing. Additionally, it may be helpful for future research to provide clearer guidelines around who the research hopes to recruit as if the recruitment is too open, people may feel like it is not for them.
Dissemination of findings
The results of this study have been presented as follows:
Presentation
27/06/2025 Clinical Health and Neuropsychology Network, ACP. Presenter: Rosalind Hatton
15/07/2025 Cystic Fibrosis Yorkshire Reginal Network Day. Presenter: Rosalind Hatton
03/06/2026 European Psycho Social Interest Group at European Cystic Fibrosis Society. Presenter: Dr Tim Lee
Poster
06/2026 European Cystic Fibrosis Conference. Presenter: Dr Tim Lee
Publication
It is hoped that the results will also be published in a peer-reviewed journal.Feedback to Participants
A report of the findings was also emailed around the participating families.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
24/NE/0016
Date of REC Opinion
13 Feb 2024
REC opinion
Further Information Favourable Opinion