Aim
The aim of this qualitative study was to develop a series of patient story videos capturing PWCF talking about their experiences of managing nebulised medication as part of their overall CF treatment. The videos produced would be part of the BCI on the website.
Design
A qualitative study was undertaken by the Health Experiences Research Group at the University of Oxford (Oxford, UK). They used purposive sampling based on objectively measured adherence to nebulised medication, lung function and sociodemographic characteristics. Inclusion criteria for PWCF were as follows:
- age ≥ 16 years
- not on the active transplant list
- not post lung transplant or in the palliative phase of the disease.
All participants had high and/or improved levels of adherence.
Methods
In-depth qualitative interviews were carried out with 14 PWCF from five UK CF centres. A total of 14 participants (aged 20–57 years) were interviewed between November 2015 and August 2016 by a female senior qualitative researcher from the Health Experiences Research Group (Susan Kirkpatrick). The researcher did not establish a relationship with participants prior to the research. Participants knew that the aim of the research was to create videos. The approach taken was phenomenological in that participants talked about their experiences. Face-to-face interviews were conducted in participants’ homes and video-recorded. Interviews lasted between 45 and 60 minutes. A topic guide was used to explore participants’ experiences of living with CF, to reflect on times when their nebuliser adherence level had been lower and to reflect on how and why they had improved their use of nebulised medication. Written consent was obtained by the researcher for participation in an interview and for selected clips being used on the website prior to editing and publication.
Analysis
Interview transcripts were analysed thematically using NVivo. The research team reviewed each transcript to select suitable content for inclusion on the CFHealthHub website. Criteria for inclusion of content was the identification of talk about making positive changes to adherence or reflecting on times of difficulties and how these had been overcome. These video clips were checked by participants.
Results
We created a library of short ‘talking heads’ videos that are hosted on the CFHealthHub website as part of the complex intervention. Emerging topics from the transcripts were identified and those selected were arranged into video categories, for example ‘Coping with feeling low’ and ‘Juggling treatment and life’. There was a total of 66 videos across 16 different categories (Table 2). The descriptions of the categories were created by the PPI panel.
| Categories | Examples of video descriptions created by PPI panel |
|---|---|
| Advice to younger self | PWCF talks openly about the risks of underestimating his condition, missing treatment and how you are the person who can make the biggest positive change |
| Coping with feeling low | There will always be peaks and troughs with CF; it’s important to keep motivated |
| Juggling treatment and life | PWCF talks about how seeing adherence data motivates him and supports what he wants to achieve in life |
| Going to university | PWCF talks about what motivated him to do his treatment and not rely on i.v. therapy |
| The importance of nebulisers | PWCF discusses thinking long term and doing your treatment to help you live a normal life |
| Keeping motivation up | Treatments are not a chore; you should look at them like drinking water – just something you have to do |
| Having a routine | PWCF explains that the key to doing her treatment is organisation and accepting that everyone slips once in a while |
| Finding support | PWCF shares her views on why it’s important to talk to others with CF |
| Nebuliser tips | Not cleaning your nebuliser will increase your treatment times |
| Having a normal life | PWCF talks about what routine works for her, being a mum with CF |
| Being normal | PWCF explains that doing her nebulisers allows her to be well enough to do the fun things in life, rather than just seeing them as a burden |
| Advice to others | PWCF talks about how to find a way to make nebulisers fit into your life |
| Late diagnosis | PWCF explains that, after discovering that he had CF later in life, the nebulised medicines he started to take completely changed his life for the better. The stark improvement in health after beginning his treatment is all the motivation he needs to take them |
| Growing up with CF | PWCF talks about the positive relationship with his CF team. Even though he was critical of them when he was younger, he reflects that they were only trying to help him |
| General tips | PWCF provides a tip to help when coughing in a public place |
| Talking to others | PWCF talks about the benefit of talking to other people with CF – being able to offer your experience. Hearing stories from those who are much older with CF has also made him feel much more positive about life expectancy |
Conclusions
This WP produced a series of ‘talking head’ video clips from qualitative interviews with PWCF in which PWCF shared their experiences and passed on knowledge to others about how they adhered to their treatments. These were used as part of the intervention.