Patient Experiences of Communication with Healthcare Professionals on Their Healthcare Management around Chronic Respiratory Diseases
Abstract
:1. Introduction
2. Methods
2.1. Study Design, Participant Recruitment, and Data Collection
2.2. Data Analysis
3. Results
3.1. Involving Communication
3.1.1. Community-Led Support Increased the Patients’ Social Interaction with Peers
‘it’s a nice sociable way without any pressure to talk about your… you know that you’ve all got similar problems. Your sympathetic and they’re always right.’(P10)
‘But very positive experience...pulmonary rehab…just carried on and it’s been great through COVID-19…So that’s a really positive group experience.’(P6)
3.1.2. Allied-HCP-Led Support Increased Patients’ Satisfaction
‘Charing Cross team offer a park walk and there’s always one of the respiratory team there, so I was having a chat with XX (a person name) who’s one of the physios there on the walk as well.’(P11)
‘I agree on pulmonary rehabilitation that, it’s a nice sociable way without any pressure to talk about your rehabilitation.’(P10)
‘I was very fortunate, that a lot of the people I spoke with were consultants and very specialized people. And that was the one of the big things that instead of appointments being 10 min or five minutes (with GPs), appointments were half an hour and they were available by phone and various things. So, I was very fortunate, really.’(P9)
3.2. Communication Needs to Be Improved
3.2.1. Disliked Being Repeatedly Asked the Same BASIC Information
‘I always get asked about smoking... And yet nobody ever says to me. Do you have a wood stove? And of course, I wouldn’t dare. This was the problem. The neighbor’s wood stove...’(P1)
‘And allergies and nothing else. Yes, and maybe road traffic? Maybe road traffic now, but nobody ever says you know where you live...’(P1)
‘If you have to repeat somethings that you’ve told them before...’(P11)
‘Now I feel like I’m about 5 and I’m very stupid and you know …he seems to have the view that patients do not need to know this.’(P2)
‘The only thing in risk management that I’ve been told over and over again, and considering the fact that after my first exacerbation in 2014, I haven’t done this…So how stupid do they actually think people are?’(P5)
‘I don’t know what they put on their system. Maybe they don’t put everything that they supposed to. And then I have to kind of repeat myself all the time.’(P13)
3.2.2. Unengaged Communication
‘...it’s quite sad because how many patients aren’t involved in those decisions in their care because they can’t articulate what they’re trying to say, or because they can’t interpret their results or their letters, or are empowered enough, because it hasn’t been explained to them.’(P2)
‘I feel like they treat us as a number.’(P13)
‘whatever your condition is, if they could immediately put that into perspective for you… it would reduce the anxiety of very significant amount...’(P6)
‘… a 20-min appointment and then you get to the end of it. And it’s like ohh, I’ll just go and see what the consultant says, so they’ll nip next door and they’ll come back and say, ohh, we’ll just carry on with what we’re doing. See you in six months.’(P3)
‘I find it confusing because I think I understand for myself what my risk factors might be. But this is not something that I can discuss with my team, or if I do, it feels like there’s a heavy dose of reassurance going on, and I don’t necessarily feel that reassurance is anything, I feel it’s misplaced because I didn’t want reassurance. I just wanted to have an adult discussion about my health.’(P2)
3.2.3. Conversation Lacked Personal Specifics
‘you know, this all comes down to the fact that not everybody’s the same. You know some people have different attitudes to things.’(P11)
‘A bit tailored like I don’t need to be confronted with some with the risk cause I’m aware of it, but it will be helpful…’(P2)
‘So, it’s a really difficult thing to do because at its core it’s statistics and percentages and you know a lot of us don’t deal with that on daily basis and it can be quite difficult. So I often found it was. It was easier when they communicated in analogies, you know, metaphors or stories and that type of thing…’(P9)
‘I feel like the personal life one might be more likely… I want them to understand how it relates to me.’(P2)
3.2.4. Medical Terminologies Used Affect Communication
‘I can’t interpret…I spent three hours while translating my consultant’s letter and I literally write scientific papers. I still couldn’t… turned out like he was using a definition of asthma that literally no one else uses. So, I was very puzzled by it and I spent a while. And after a lot of digging through PubMed, I think I finally understood what he was on about.’(P2)
‘You know, it’s immediate panic basically… they give you a percentage and things like that of your chance of death in the next five years. And how do you interpret that? And then it’s sort of well, what’s the next stages.’(P9)
‘I feel like every patient should have the right to be able to be involved in those conversations and it’s really sad that only at the point that you can almost prove to the consultant that you can engage in those conversations.’(P2)
3.2.5. Lack of Sufficient Information/Services
‘When you’re first told it’s a bit of a shock. The important part really would be if they could immediately put that into perspective for you, I think it would in my particular case, it would reduce the anxiety of very significant amount.’(P5)
‘When you’ve been seen by lots of different specialists...sometimes when you go to a different consultant, he tells you something different to what you’ve been told…’(P4)
‘...even just seeing the same person every time is a big thing because you build up a relationship with that person.’(P3)
‘The only sad thing was there was really no follow up…I think it would have done a lot of good to a lot of people.’(P7)
‘I wondered whether the problem is that in my case my file must be huge. In the notes, I wonder whether they have a top page that actually just lists anything important, like the things you’re sensitive to, your allergies, or the most recent tests, or the fact that you’re a non-smoker. Cause I could almost feel that the consultant sort of going back wading through all these pages. I thought does he not have a summary page on top?’(P1)
4. Discussion
5. Conclusions
6. Patient and Public Involvement
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Focus Group Discussion Guideline
- When did you last discuss with your HCP your healthcare management or topics related to risk factors?
- A.
- Discuss with the participants what good communication should look like
- B.
- Discuss health-related risk factors/healthcare management with the participants
- C.
- Discuss risk prediction models and personalising risk models with the participants
- D.
- Discuss the value of discussion and support with healthcare professionals
- Is there anything else you’d like to say about today’s topic?
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Themes | Sub-Themes | Quote Examples |
---|---|---|
Communication needs to be improved | Disliked being repeatedly asked the same basic information | ‘And allergies and nothing else. Yes, and maybe road traffic? Maybe road traffic now, but nobody ever says you know where you live...’ (P1) ‘Now I feel like I’m about 5 and I’m very stupid and you know …he seems to have the view that patients do not need to know this.’ (P2) ‘If you have to repeat somethings that you’ve told them before...’ (P11) |
Unengaged communication | ‘...it’s quite sad because how many patients aren’t involved in those decisions in their care because they can’t articulate what they’re trying to say, or because they can’t interpret their results or their letters, or are empowered enough, because it hasn’t been explained to them.’ (P2) ‘I feel like they treat us as a number.’ (P13) | |
Conversation lacked personal specifics | ‘You know, this all comes down to the fact that not everybody’s the same. You know some people have different attitudes to things.’ (P11) ‘I feel like the personal life one might be more likely… I want them to understand how it relates to me.’ (P2) | |
Medical terminologies used affected communication | ‘I can’t interpret...I spent three hours while translating my consultant’s letter and I literally write scientific papers. I still couldn’t… turned out like he was using a definition of asthma that literally no one else uses. So, I was very puzzled by it and I spent a while. And after a lot of digging through PubMed, I think I finally understood what he was on about.’ (P2) ‘You know, it’s immediate panic basically… they give you a percentage and things like that of your chance of death in the next five years. And how do you interpret that? And then it’s sort of well, what’s the next stages...’ (P9) | |
Lack of sufficient information | ‘…The important part really would be if they could immediately put that into perspective for you, I think it would in my particular case, it would reduce the anxiety of very significant amount.’ (P5) ‘When you’ve been seen by lots of different specialists...sometimes when you go to a different consultant, he tells you something different to what you’ve been told…’ (P4) | |
Involving communication | Community-led support increased the patients’ social interaction with peers | ‘it’s a nice sociable way without any pressure to talk about your… you know that you’ve all got similar problems. Your sympathetic and they’re always right.’ (P10) |
Allied-HCP-led support increased patients’ satisfaction | ‘Charing Cross team offer a park walk and there’s always one of the respiratory team there, so I was having a chat with XX (a person name) who’s one of the physios there on the walk as well.’ (P11) |
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Zhang, X.; Buttery, S.C.; Sterniczuk, K.; Brownrigg, A.; Kennington, E.; Quint, J.K. Patient Experiences of Communication with Healthcare Professionals on Their Healthcare Management around Chronic Respiratory Diseases. Healthcare 2023, 11, 2171. https://doi.org/10.3390/healthcare11152171
Zhang X, Buttery SC, Sterniczuk K, Brownrigg A, Kennington E, Quint JK. Patient Experiences of Communication with Healthcare Professionals on Their Healthcare Management around Chronic Respiratory Diseases. Healthcare. 2023; 11(15):2171. https://doi.org/10.3390/healthcare11152171
Chicago/Turabian StyleZhang, Xiubin, Sara C. Buttery, Kamil Sterniczuk, Alex Brownrigg, Erika Kennington, and Jennifer K. Quint. 2023. "Patient Experiences of Communication with Healthcare Professionals on Their Healthcare Management around Chronic Respiratory Diseases" Healthcare 11, no. 15: 2171. https://doi.org/10.3390/healthcare11152171