Qualitative social experiences of young people with cystic fibrosis
Research type
Research Study
Full title
A qualitative exploration of the social experiences of young people with Cystic Fibrosis (CF) within a U.K. outpatient hospital setting.
IRAS ID
275378
Contact name
Jessica Seddon
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
1 years, 2 months, 30 days
Research summary
Summary of Research
A qualitative exploration of the social experiences of young people with Cystic Fibrosis (CF) receiving care at Birmingham Children’s Hospital (BCH). The research is idiographic, aiming to capture the qualitative experiences of young people with CF through the use of semi-strucutured audio-recorded interviews. There will be an option to interview parents/carers in the event that recruitment of suffiicient young people proves challenging (Aiming for 6-8 to allow for meaningful qualitative anlysis). Participants will be recruited via members of the clinical team during routine clinics, with Participant Information Sheets handed out including CI contact details.
As the research is exploratory and idiographic in nature, the aim is not to explain or make causal links but to explore the experiences and sense-making of young people with CF. Therefore, the interview schedule will allow for some deviation and flexibility, dependant on the salient discussion points for each participant. The findings will build upon research conducted in the United States and Canada exploring the social experiences of young people with CF, in light of cross-infection control guidelines (Toth et al., 2013; Moola, 2018). In the United Kingdom, NICE guidelines recommend that those with CF are prevented from making face-to-face contact and these guidelines are strictly adhered to in hospital settings. It is anticipated that due to these guidelines, there may be barriers to social interaction between young people with Cystic Fibrosis. An additional question will enquire about the perceived usefulness of a video-confering intervention, in principle only. This question and subsequent answers will be analysed separately.Transcribed interviews will be analysed using Interpretative Phenomenological Analysis (IPA), a qualitative methodology that aims to capture individual experiences and sense-making. This will enable the researcher explore and capture individual experiences of those with CF, whilst remaining mindful of the role the reseacher plays within the analysis process.
Summary of Results
Following Interpretative Phenomenological Analysis, two superordinate and six subordinate themes were identified to represent the social experiences of the five recruited adolescents with Cystic Fibrosis (CF).
A superordinate theme of ‘A desire to belong and be understood in the context of CF was identified with the following four sub-themes: 'Not wanting to be treated differently because of CF', The burden of disclosure' and the 'Importance of trust', 'Finding common ground' and 'Connecting in other ways'. Disclosure for individuals with Cystic Fibrosis can lead to challenging experiences with peers who are not familiar with the condition. Adolescents shared varied experiences with regards to preferences when choosing who to build and maintain friendships. For some participants, finding common ground and sharing their experiences of CF with each other was considered paramount. For others, they shared a preference to surround themselves with peers who did not have Cystic Fibrosis as this meant they could feel "normal". All participants shared experiences of connecting to others, with and without CF, via various means, including social media, streaming and gaming platforms.
A second superordinate theme ‘The relationship between increasing independence and social relationships in the context of CF’ was organised into two sub-themes: 'Experiences of defiance and conflict with others' (e.g. family) and 'Independence as a process - Reflections and mixed emotions.' The adolescent participants all shared experiences of increased autonomy with regards to their Cystic Fibrosis treatment, including daily medication and physio. Experiences with independence varied, with some participants expressing relief and gratitude for being less reliant on family as they increased their independence. For others, the increased autonomy was met with feelings of anxiety and fear.
In conclusion, increasing independence is experienced differently for adolescents with CF and sometimes involves conflict, with others or within the self. The importance of trust and social support from others socially was considered important across both superordinate themes. The social experiences of adolescents with CF bear some similarity to the experiences of their peers and to those with other chronic health conditions. However, some individual differences, such as a necessity to not meet others due to cross-infection control guidelines and reduced life expectancy mean that adolescents with CF have additional social experiences to contend with. An awareness of the varied and individual patient experiences of adolescents with Cystic Fibrosis will helpfully enable clinicians to ensure that they can effectively support them in their transition from child to adult services.
REC name
Wales REC 6
REC reference
20/WA/0163
Date of REC Opinion
9 Jun 2020
REC opinion
Favourable Opinion