Key characteristics (sex, age range, and number of chronic conditions) for the interviewees, the focus group, and participatory workshops are presented in Table 2.
The qualitative analysis generated two main themes: shared community experiences and PCC.
Theme one: shared community experiences
Several important shared community experiences shaped how people approached any statutory service, including health.
Being known: belonging
Participants consistently described ‘being known’ within their community, which fostered an important sense of belonging and cohesiveness for many. Although not always the case, most people experienced strong supportive relationships with their neighbours. The community was a safe space, where participants experienced high social capital that could be utilised to manage health:
‘… my point of view, everybody knows everybody. Even though you don’t know one person, somebody else knows that person, and vice versa. As I said, one of my neighbours, I’ve known her since I was a child, and she’s been a neighbour of me for, oh — a neighbour, literally a neighbour — for about 30 odd years. So, even though, as I said, we’re all different people in the community, but the people that know each other, they’re always there for each other.’
(Interviewee (I)23: female, aged 63 years)
Being known: shared social stigma
However, this ‘belonging’ extended to stigmatisation from those outside the area and a shared community experience of stigma was universally described. People felt that wider society thought of their area in a negative light, condemning it for high levels of antisocial behaviour and addiction:
‘… but people outside [Area X], like, the media, the telly, the newspapers, things like that, when something happens in [Area X], oh it’s right there in front of you. But I don’t read papers, because papers are just, from my point of view, papers are just a waste of paper. But they just throw it right there and then. So, that’s why we get a bad character because it’s [people] outside [Area X].’
(I23: female, aged 63 years)
Such stigmatisation was deeply ingrained: when people shared their stories at the community groups they commonly started with statements like ‘I know people say that folk from [Area X] are … but I am …’ to pre-empt this expectation of judgement.
Participants resisted stigma in several ways by:
The first of these, highlighting positives in the community, related to how people actively highlighted aspects of their community they felt were not understood or recognised. These positive aspects were often ingrained as part of their identity and served to defend them (even if only to themselves and wider family and friends) from the judgement of society:
‘So, like, a lot of my clients’ families [in affluent areas] will say, and where are you from? And I’ll say, [Area X]. And some of them, you actually see their face, like … do you know. And I tell them openly, I’m like, I love [Area X]. I went, I love where I live. I said, I’ve got great neighbours, I says, I’m still in a tenement close. And they’re like, you’re what? I’m like that, yeah, some I can … well it’s a top flat, I said, my neighbours are fabulous. I said, we have big gatherings round the back, whether it’s somebody’s birthday and they’re having a party and then everybody comes and puts big gazebos up.’
(Participatory workshop 2, Participant [P]4, female, aged 50 years)
The second of these, othering, related to how some participants felt the stigma was partially justified but blamed a vague description of ‘others’, not them, who ‘deserved’ the stigma the wider area experienced. With high rates of antisocial behaviour, participants could understand why their community had developed a reputation. However, they then differentiated themselves, and their families, emphasising such behaviour did not represent the entire community. Stigma was therefore resisted by transferring judgement to these ‘others’:
‘I mean, I don’t like the fact, I’ve got proper illnesses, and that, and I’ve not brought them on myself. Most of them, I go down, and I have to wait for a prescription sometimes, and they just walk in, and they get hit with their morphine. I know they just want them in and out, no hassle, so I understand that. But when you’ve been standing 10, 15 minutes, and they just get seen right away, you know. It just gets your blood boiling a wee bit, you know.’
(I18: male, aged 47 years)
The final one of these, framing within the universal experience of poverty, related to how stigma was also resisted by discussing how conditions within their area were no different to other parts of the city experiencing high rates of poverty. Critically, this meant that judgement regarding their community was not because of something peculiar about the residents themselves but rather a wider societal demonisation of poor communities. Therefore, participants situated the stigma within a wider lens of poverty and lack of job opportunities:
‘Aye, I’m sure that’s the same with a lot of schemes [slang to describe deprived housing schemes within the city]. I’ve not had a great experience, I was in [Area C], and it just looked as if I was, I’d been dropped from [Area X] and put in another street, you know, it’s just so similar, it was unreal. But that was just one [street], in one part of it. I don’t know other schemes, but I’m sure they all have these problems.’
(I14: male, aged 67 years)
None of the systems work
An additional shared community experience of none of the systems working was reported frequently. It was felt statutory systems were not set up for them, that they were less likely to be listened to, and that when they tried to push back this was perceived as aggressive. This was not just health systems, it was all statutory services, and it was not just that the system did not work for them, it did not work for anyone they knew. The grinding effect of this persistent and consistent experience was discussed in-depth at both asset-based workshops. Some participants articulated they felt people in more affluent areas had a different experience, based on discussions from friends and colleagues living elsewhere:
‘Aye, and I believe there’s other… I don’t know. I just feel that more is done by doctors in these areas for where there’s people with more money, better housing, I just feel they’re listened to more than an area like [Area X]. That’s how I really feel.’
(I17: male, aged 73 years)
Influence of shared community experiences on healthcare experience
Crucially, these shared experiences fundamentally altered how people approached statutory systems, including health. The community was where people felt known and understood, for many it felt safe compared with outside where they assumed they were being judged. Unless there was good reason not to, people treated health services as another place they would be judged and where it was reasonable to suppose the system would not work for them. This assumption was often validated by experience. This in turn heavily influenced how they engaged, and their capacity to self-manage their health.
The experience of ‘none of the systems working’ created feelings of helplessness that manifest in two ways: getting angry or apathetic. Many shared stories of ‘losing it’ with receptionists or healthcare staff. There was a widespread recognition that although wrong, it was borne out of their frustration of not being listened to:
P1:‘You’re in the doctors, you’re in the hospital, you’re in anywhere and you’re right, if something happens, you’re not happy, there’s a way that you can express yourself that’ll mean that people can phone the police and get you taken away. There seems to be in poverty speakin’, or working-class communities, there’s vocabulary that is limited and that limited vocabulary means that you can only communicate to a certain … ’
P2:‘A certain level.’
P1:‘Aye. And you’re limited in expressing yourself. And if you’re limited in expressing yourself and you’ve also never been shown how to soothe or nurture yourself, then maybe your way of communicating anger and frustration is going to be animated, boisterous, and aggressive. But the truth is, that’s not appropriate. And the truth is how do you express yourself in a different way?’ (Participatory workshop 1: P1, male, aged 36 years; P2, male, aged 39 years)
However, the more common response was to simply disengage and accept life as it was. Raised hope caused hurt; believing change was possible was ultimately crushing when nothing changed. These responses, while understandable, created a negative feedback loop: people could be excluded from services or developed a passivity regarding their ability to make changes that became normalised.
Theme two: PCC
Participants identified key qualities of the practitioner–patient relationship that were particularly enabling. These were:
Patient as person
Being seen as a person by a practitioner rather than being defined by LTCs was important. It had a positive influence on, but was not required to have, a strong therapeutic relationship:
‘Back there [old GP surgery] I felt it was personal. They give you that personal touch, because you go in, and this person really is interested in your life. They [current GP] say … you think it’s their job. I don’t know if you see the difference, it’s like it’s my job, I’ll do my job and that’s it.’
(I13: female, aged 48 years)
Therapeutic relationship
A strong, trusted relationship, particularly with the primary care team, was highly valued. When present it had a positive influence on engagement in care and was an essential prerequisite to power sharing. Three things contributed to the establishment of strong therapeutic relationships.
First, connection and trust — participants had to feel a connection to their practitioner, that they ‘had their back’, and were trustworthy. Of note it often took time for this relationship to develop:
‘I think it is probably more the comfort thing. You know that you can go, and you can speak to them, and you can ask them questions and things like that, rather than being a bit wary and thinking, no, I am not going to bother, I will just leave it, it will be fine.’
(I9: female, aged 58 years)
Second, continuity of care — seeing the same practitioner who knew you, your family, and your conditions was important. People felt they experienced better treatment because their doctor understood how their LTCs flared. It also meant they were more willing to contact and engage with the surgery when struggling. Conversely, the experience of unknown doctors, needing to share their history from scratch, and having symptoms dismissed made people avoid attending their GP unless they had to:
‘And then every time you go down, you’re seeing a locum. And then you’ve got to sit for about half an hour and explain your history ‘cause they can’t be bothered looking through the computer. Whereas if I see my own doctor, he knows, or she knows, what I’ve been through ‘cause they’ve been dealing with me for the last 10 years.’
(I24: male, aged 63 years)
Finally, challenge and enable contributed to the establishment of strong therapeutic relationships. Participants expected their GP to challenge and support them to make required changes. Challenge, provided it was delivered in the context of a secure relationship, was enabling. One participant described her doctor ‘chasing her up’ about her weight, unlike previous doctors who had ignored it:
‘She [the GP] said yes, you have put weight on. She said, what do you want to do? Do you want to go back to weight management, or do you want to do it yourself?’
(I19: female, aged 56 years)
Power sharing
Power, and the sharing of power, was important in how enabled participants felt to manage their health. Although this could involve decisions about specific medical treatments, it more often involved participants feeling empowered to focus on the social impact of disease or discuss the symptoms that were most problematic to them rather than just focus on disease parameters (such as blood pressure [BP] or haemoglobin A1C test targets). Where power sharing occurred, participants saw themselves as active participants. This required a strong therapeutic relationship with, at least, their GP and sometimes other healthcare teams. People who felt enabled to make healthcare decisions with their GP also appeared to feel enabled, and interested, in managing their own LTCs:
‘No, I suggested it because I’d told the doctor that my normal coping mechanisms, everything that I normally do, weren’t working and I knew that I needed to actually take medication.’
(I10: female, aged 45 years)
Coordination of care
The importance of someone who could coordinate care across all their LTCs became more critical later in the study in the aftermath of the pandemic. Participants recognised they had not realised its importance until it was no longer there post-pandemic. People struggled navigating an increasingly fragmented health system. This was particularly so for older participants who struggled with new technology:
‘No, I wouldn’t blame the health service hen. I just, I feel like, I mean, when you used to go and see the doctor, you seen the doctor, and then they gave you a pill, or whatever you had to get done, or they took bloods off you, and all that carry-on. I don’t blame the health centre, nothing to do with the health centre, this is something to do with the Government itself. I mean, there’s too many people out there now telling you, you go online to do this, and you go online to do that. Well, I don’t do online, I don’t do Facebook, and I don’t do that Google, no, not Google, that face-to-face thing. I’m old school, my point of view is, I’m saying, if you need a doctor, you phone up a doctor, and then you get a doctor’s appointment to go and see a doctor.’
(I23: female, aged 63 years)
Barriers to power sharing in the practitioner–patient relationship
Power sharing was judged as particularly important in enabling management of MLTCs but rarely happened. There were several key reasons for this:
misunderstanding regarding health conditions;
lack of agency within practitioner relationship;
lack of agency within the system; and
being a good patient.
Critically, apart from lack of agency within the system, these are (at least partially) invisible to practitioners, meaning that the dynamic and its negative impact is liable to persist.
The first of the key reasons, misunderstanding regarding health conditions, related to how confusion regarding LTCs influenced whether power sharing could occur. If people misunderstood what was wrong or did not realise there were actions they could take to improve outcomes, then no decision making, let alone shared decision making, could occur:
‘… they were checking my bloods, etcetera, they said, your sugar levels are high. But again, I didn’t understand totally what they were referring to, I just continued and continued. I was maybe having, like, three litres of energy juice.’
(I18: male, aged 47 years, discussing the year leading up to his diabetes diagnosis)
The second of the key reasons, lack of agency within practitioner relationship, related to how more commonly people had an awareness of not fully understanding their LTC but tackling this was constrained by a lack of agency within the practitioner relationship. Some participants described feeling unable to challenge their practitioner, or that concerns or priorities were dismissed, within primary care appointments:
I22:‘No, they just tell you on the phone, it is fine.’
Interviewer:‘It is fine, okay, so you put all that work into [checking your BP at home] and you knew some of the measurements were high.’
I22:‘Yes, I have kept them, I will show you the notes I had on them. I thought, no.’
Interviewer:‘You don’t understand why you were told it was fine? … Did you ask? Did you say that to them?’
I22:‘Yes, I said to the nurse, I went, but look at that one there and look at that one there. They are above what they should be. High not like you get moderate and then high, they were high. You just give up now.’ (female, aged 72 years, discussing home BP monitoring)
The third of the key reasons, lack of agency within the system, related to how people struggled navigating a complex health system, this created powerlessness in the face of a disorganised and inflexible system. This was in turn disenabling to shared decision making. Often a primary care practitioner could support navigation that was beneficial. However, particularly post-pandemic participants felt their GPs were also struggling with a broken system:
‘I went to my doctor and said I wasn’t happy about that and I got an appointment to speak to him again. And I went in and he … and I sat down and had a good wee chat with the surgical consultant. And he said to me … he said, so if I can get your pain fixed, you’ll be happy about that. I said, that’s what I was saying to you in the first place. And he went, right, I’ll get back to you. And I’ve never heard from him since.’
(I4: male, aged 60 years, persistent pain, referred between multiple specialties, not sure of diagnosis or current plan, almost a year since last appointment)
Finally, the last key reason, being a good patient, related to how participants experienced societal expectations to be ‘a good patient’. Enhanced by the pandemic, this included recognising how busy their doctors were, and the importance of not bothering them or wasting their time. However, this meant many did not feel they could ‘waste time’ clarifying self-management with resultant worry about whether they were doing the right thing:
I24:‘Well, I’ve got to be careful now ‘cause when I’m reading up on this thing it’ll say at any time I could take a stroke. Whether I believe that anyway I’m not really sure. But they’ve given me tablets which I’m not really comfortable with ‘cause I feel sick every day. I’m hoping to get seen at cardiology so I can try and … maybe try a different medication, something that doesn’t make me feel nausea every single morning.’
Interviewer:‘Right. And did you mention that to your GP when you were in seeing him about your COPD [chronic obstructive pulmonary disease]?’
I24:‘Yeah, they said, oh this is the best one for you. And I went, okay, no bother. Well, I’ve been … I’m beginning to question, you know, and then I’m going … I really need to have a sit down with them and say, do I really need to take all this medication? But getting appointment’s one thing and obviously with COVID and backlogs and people so busy.’ (male, aged 63 years)
PCC and wider shared community experiences
It seemed, in this context, PCC was particularly valuable because of its potential to ameliorate wider shared community experiences. When participants had experienced stigma and nothing working, any interaction with a practitioner carried a risk. Alternatively, where people felt seen, understood, and unjudged by practitioners this had a powerful positive impact. It shifted health care from being one of the services ‘that didn’t work’ to one that was ‘for them’.
Although rare, true power sharing between participants and health practitioners was enabling — people reported engagement in their health care and making decisions in line with their values. It may be that power sharing was particularly positive in this context because the experience of ‘none of the systems working’ created a collective experience of powerlessness. However, post-pandemic struggles to access primary care were particularly negative for those who had until recently felt their GPs were different and that their practice did work, and care, for them. Additionally, strong therapeutic relationships may have been particularly enabling because they mirrored valued community experiences, enhancing the experience of being known while negating the impact of stigma.
