Aims
The aims of WPs 2.1A and 2.1B were to explore PWCF’s perceptions of their illness and their treatments, perceptions of barriers to and facilitators of medication adherence using nebulisers, and the acceptability of visual displays of their recent medication adherence.
Methods
Sarah J Drabble undertook 18 face-to-face semistructured qualitative interviews with PWCF in the Sheffield CF centre. Sarah J Drabble is a female research associate with a doctoral degree, psychology training and experience in qualitative research. The proposal stated that 20–24 interviews would be undertaken. Our research physiotherapist Marlene Hutchings approached people who met our sampling strategy criteria to obtain permission to pass on their details to our qualitative researchers. She did this in a variety of ways, such as face to face and by e-mail. A total of 21 PWCF agreed to have their details passed on, 20 of whom gave informed consent for an interview. A total of 18 of these were available for interview. We used purposive sampling to identify adults with different objectively measured adherence levels. We knew their objectively measured adherence rates because the Sheffield CF centre had introduced measurement using chipped nebulisers. In addition, we undertook maximum diversity sampling by asking the research physiotherapist to approach adults of different genders, ages and socioeconomic backgrounds.
The stance taken was phenomenological in that we were interested in patient experiences of CF and adherence. The participants did not know Sarah J Drabble prior to the research. She was clear with participants that she had no prior experience of CF. Interviews were undertaken in people’s homes. Usually only the participant was present, although in two interviews the participant’s partner was present. The topic guide used for the interviews is included as Report Supplementary Material 7. This developed over time after the first couple of interviews. We audio-recorded the interviews and made field notes after each interview. Interviews lasted 65–147 minutes (mean 99 minutes).
We used framework analysis31 deductively to code high and low levels of adherence behaviour into the theoretical domains framework (TDF)32 and inductively to identify perceptions of CF and treatments and to explore the acceptability of the adherence graphs. Two researchers coded the data using NVivo (QSR International, Warrington, UK). There was no participant checking but the findings were discussed with the PPI panel.
We followed consolidated criteria for reporting qualitative research (COREQ) guidance (see Report Supplementary Material 4).
Findings
The detailed findings were published in two journal articles33,34 and are briefly summarised here with illustrative quotations.
Perceptions of cystic fibrosis and treatments
Key contextual issues
- Being normal: PWCF wanted to fit in and be like other peopleI just think I’m not doing it today just because I just want to be normal for a day or I just don’t want to do it.Participant (P)3, very low level of adherence
- Openness about having CF and adherence: some PWCF discussed having CF with friends but others did notI do tell people you know. I’m quite open minded I like to let people know if I’m not OK.P4, very low level of adherenceI think the telling of people – I have this big thing about they’d treat me differently.P17, high level of adherence
- Forgetting: talk of ‘forgetting to take medication’ could be used to exercise control in the context of the moral obligation to adhere to treatment (see Drabble et al.33)[. . .] probably when I’m socialising and going out and things you know so if I go out an earlier time I might forget to have it.P4, very low level of adherence
- Health belief: some PWCF were driven to keep healthy until a cure was found (high-level adherers), whereas others experimented on themselves and actively decided which treatments worked for themMy nebulisers. I’ve just sort of tested them. Just not took them until next time I’ve been in clinic just to see what effect it would have. Like my lung capacity and stuff like that.P16, high level of adherence
- Treatment burden: varied within the sample and could be all consuming for those with more severe CF symptoms and other health conditionsThis time my weight had gone up but my lung function had gone down, so I am trying to find that balance.P10, low level of adherence
- Tiredness: CF and daily life activities caused fatigue, leading to non-adherenceWhen you’re using a lot of effort just to breathe, then it takes away your efforts on other places, other parts.P11, moderate level of adherence
- Emotions: some of our interviewees described how adherence behaviour was often emotionally driven depending on their feelings about aspects of their lives. How they felt about their CF could affect their motivation to adhere to treatmentsIf I get up and it’s one of those days I can’t be [bothered] to do anything, I just won’t do it.P2, very low level of adherence
Barriers to and facilitators of medication adherence using the theoretical domains framework
Factors influencing adherence to treatment included all 14 domains of the TDF,34 most of which varied by adherence level:
- skills
- memory and decision-making
- behavioural regulation
- environmental context and resources
- social influences
- beliefs about consequences
- beliefs about capability
- reinforcement
- social role and identity
- intentions
- optimism
- emotions.
Factors identified by PWCF in higher and lower adherence level categories are summarised in Table 1.
| Factor | Quotation |
|---|---|
| Identified by PWCF in higher adherence level categories | |
| Believing that complete adherence was unachievable | In a way you sort of think you can’t remember every timeP18, high level of adherence |
| Concerns about bacterial resistance to treatment | I’m on antibiotics. Sort of the more you take them, the less effective they getP16, high level of adherence |
| Having a habit for treatment | It has got to a stage since that that in my head now, routine. I don’t need a checklistP15, high level of adherence |
| Fear about becoming ill | Just that fear, know I could be unwell some days. Just sort of striving to do it reallyP16, high level of adherence |
| Identified by PWCF in lower adherence level categories | |
| Feeling worse as a result of treatment | What runs through my head like especially the Promixin [Profile Pharma Ltd, Chichester, UK; colistimethate sodium] is that 3 months where I took it and still end up on [i.v. therapy]. And then end up having a reaction to the i.v. [therapy] from of itP5, very low level of adherence |
| Being rebellious or disorganised | If I don’t see no point in doing it, I won’t do it no matter what anybody saysP7, low level of adherence |
| Feeling that treatment was difficult when tired | I think Fridays I’m always tired from the whole week so I just always went to bed early or so I might just put it offP6, low level of adherence |
| Finding stressful events a barrier to and being in hospital a facilitator of adherence | I was really good at taking it then [in hospital] because I have got a watchful eye over meP5, very low level of adherence |
| Forgetting | When I remembered to tick it off it were alright but ‘cos I put it in the cupboard at side of me bed I just forgot about itP3, very low level of adherence |
| Avoiding thinking about CF | I know it will all affect me in the long run but I just don’t think about itP6, low level of adherence |
| Declining support | He does look after me but when I’m alright and walking around and stuff I don’t want him to have to do thatP3, very low level of adherence |
| Feeling in conflict with health-care professionals | I’ve had a doctor tell me before [laughs] if you took your nebuliser you wouldn’t be on [i.v. therapy]. But he said it so confrontationalP5, very low level of adherence |
Acceptability of adherence graphs
People with CF in the sample generally found the charts interesting and easy to understand. They found the different ways of looking at adherence, overall, by week or by time of day, useful because they could see different patterns in their adherence:
I like the graph idea, if it gives you a visual aid. This is basically what you’ve done since your last visit.
They identified ways of improving the visual attractiveness of the charts. We also identified that there was a need for the research team to identify an approach to measuring adherence in the context of multiple and changing prescriptions.
Conclusions
The findings from this WP shaped the intervention in three ways. First, the findings on the perceptions of CF and treatment identified aspects of any intervention that were important to attend to, and in particular that an intervention should not increase treatment burden. Second, the findings from the TDF domains identified how different people faced different barriers so that it was important to tailor the intervention to individuals; these findings also helped to identify key content for different components of the intervention. Third, the findings on acceptability of the graphs offered confidence that PWCF welcomed the graphs and identified ways of improving the presentation of data in these graphs.