Themes that emerged from analysis of each set of interviews are presented below. Findings from HCP interviews are detailed first before findings from patient interviews are reported.
HCP interviews
HCPs perceptions of benefits to patients
The guidebook was seen by HCPs as an appropriate aide memoire that patients could turn to when they needed information as and when required. This in particular was aided by the guidebook featuring a clear format and language which avoided clinical terminology or jargon. First, the GPs and nurses suggested that the guidebook clarified perceived patient confusion between osteoarthritis and rheumatoid arthritis and clarified what kind of disease they have.
A second reason for the guidebook’s benefit that HCPs suggested was because it provided patients with a description of causality and prognosis:
I think that really helps with patients understanding what arthritis is, that it isn’t a disease some people catch and some people don’t catch and that just because your mother has it you might get it, I think people understand the process more that’s it’s a dynamic process it’s not just a one way slope (GP6).
As the example highlights, HCPs argued that patients benefited from biomedical information about the aetiology of OA, insofar it clarifies ‘lay’ understandings of OA causation and suggests that OA is not necessarily debilitating.
HCPs thought a key strength of the guidebook was that it provided a description of the underlying disease process of OA:
So I think improving patients understanding of what’s happening with the kind of flare and repair idea makes them understand that they can reduce their pain during a flare so that their body’s constantly trying to repair and that they can encourage that (GP2).
Providing correct information about ‘disease’ was argued to be what patients would take from the guidebook. Whilst HCPs framed these issues as being beneficial to patients, arguably they highlighted the things directly related to their practice.
Managing consultations
The benefits that patients were thought to gain from the guidebook coincided with how GPs thought that the guidebook helped them to back up the key messages they delivered regarding the treatment and management of OA:
It’s always good to be able to sort of back up what you’re saying to a patient with something written, I’m never sure how much of the book they actually do read but those who are engaged hopefully will take that opportunity (GP7).
Whilst the GP expresses some uncertainty regarding the likelihood of all patients reading the guidebook, she outlines its usefulness for highlighting key topics in the guidebook during consultations and encouraging patients to focus on them.
GPs also thought that consultations could ‘empower’ patients to look after their own condition. The guidebook was depicted as a tool to help this process:
‘Your book, your thing, I want you to read it all. I want you to bring any questions.’ Making them in charge of their health, responsibility of their problem, engaging them, almost, and I hate this word, but empowering them (GP4).
The guidebook was a symbolically useful object, conveying to the patient that by giving them their personal booklet they were expected to be responsible for their condition.
Furthermore, GPs contended that when they handed out the guidebook it helped bring consultations to a more comfortable conclusion:
I always felt talking about things like the footwear and exercise and weight loss that patients are just a bit weary of it and go away sometimes thinking “you know my doctor’s not done anything for me” but to actually give them that backed up with written information I really think that makes a difference to the impact (GP8).
GPs interpreted providing something tangible containing condition specific information was acceptable for patients because it meant they had gained at least one thing from the consultation. In turn this, in part, symbolised a successful, well managed, consultation for GPs because it had been neatly ended. Thus, for GPs, the guidebook provided a resource with which to back up key messages about self-management, an aid to empowering patients and for ending consultations smoothly.
Nurses also suggested that the guidebook helped aid consultations. They emphasised that the guidebook helped explain the disease process of OA and how it affected patients from the outset:
I would say in the first consultation probably just as a way of helping to explain what OA was (Nurse2).
Thus, for nurses the guidebook as a consultation resource helped to ‘set the scene’ by providing a description of the condition to patients and it formed a launch pad for subsequent care they provided.
Nurses, like the GPs, found it a useful resource for reiterating the key messages about self-management (for example keeping active or taking medication) that they delivered as part of the intervention:
The guide book was good because the doctors gave those out and they’d read a little bit about what we were going to do prior to coming to see me so all I did was sort of reinforce the information so that was good (Nurse3).
The guidebook helped reinforce key messages, but unlike GPs nurses focussed less on the ‘empowering’ utility of the guidebook. Whilst nurses positioned the guidebook as useful for reinforcing basic messages about ‘keeping active’ and ‘exercising’ they used supplementary sheets produced by Arthritis Research UK to demonstrate particular muscle strengthening exercises. This was because they thought that the guidebook lacked specific information about muscle strengthening exercises they were encouraged to discuss with patients as part of the intervention training. In summary, for nurses the guidebook played less of a role in aiding consultations and mainly featured at the outset or as an occasional tool to bolster the advice they sought to convey.
Patient interviews
Clarifying and explaining OA
The general sentiment expressed by participants was encapsulated by one participant who stated “I think it was well written and easy to understand”. The majority of patients outlined how previously they had not obtained consistent or digestible written information and this was compounded by not being given a detailed description of OA by GPs. Thus, participants suggested that the guidebook helped to make up for the shortfall and provided an explanation about what OA is. Patients outlined two ways in which OA was explained and clarified. First, they discussed how the guidebook explained the onset of OA and the underlying disease process:
I found it very interesting and it gave me a different insight. Okay, yes, I had a medical background, but somehow it’s different when you have it yourself. And I think it sunk in more, and it’s not always hereditary, it can be trauma, it can be all sorts of things, weight, etc. And just seeing the joints and how it affects the joints I found very helpful and very interesting (Patient26).
This participant had worked as nurse before her retirement. She outlines how despite her ‘medical’ training she was unsure about OA’s mechanics and causal factors, and the guidebook was useful because it related to her current situation as a patient.
Second, patients appreciated that the guidebook contained a prognosis. Again, they interpreted that the information exceeded what they were offered by GPs:
I think one thing that stood out was that the condition can get better; it doesn’t have to get worse. Initially my wife was told that in her case the cartilage is worn and that’s it basically, she’s never going to get it back. So therefore you can soldier on for a while but the pain’s going to get worse and the mobility is going to get worse and in the end you’re going to have to have a knee replacement. But now it seems that, for whatever reason, people are now suggesting that it can replace itself or regenerate itself or it can rebuild in some way. So that’s encouraging (Patient18).
This participant was not given a prognosis and also invokes the experience of his wife who had interpreted the advice given in a previous consultation as meaning her future inevitably featured disability and operations. He compares the experience of his wife with the guidebook which explains that OA is part of a process of repair rather than degeneration. He has gained a sense of optimism and reassurance because it offers a more positive outlook to life with OA.
Other participants knew they had a form of ‘arthritis’ , but were not quite sure which type. They were relieved to find out that OA was not likely to lead to incapacity:
I’m glad to know that I haven’t got the one that… rheumatoid. You get one and it will cripple you and you get another one that you can actually live with. So I was quite pleased when I found out the information out of the book (Patient17).
As this quote exemplifies, the guidebook offered clarification about disease type, and reassurance that OA was not equated to an inexorable decline and a reduction in quality of life.
In summary, the guidebook provided a more detailed explanation of why patients had pain, its cause and the likely future outcome of OA, which offered a sense of reassurance.
Providing a sense of inclusion
The positive aspects of the guidebook patients discussed transcended the provision of biomedical information because it provided them with a sense they were not alone:
This bit about where it tells you about people with this, saying the symptoms, I thought that was quite good you know it makes, you know, it makes you feel that you’re not on your own don’t it (Patient4).
As this participant exemplifies, reading about symptoms and concerns being common and normal makes the problem seem less of a personal burden and unique worry.
Other patients emphasised the value of the guidebook containing quotes about emotional experiences of others. This woman spoke about the frustration she felt at pain limiting her activities:
I mean there was quotes and in reading them it’s sort of, yes I feel like that sometimes and you know, so it’s almost as though you’re not alone (Patient23).
By reading about issues as stated by other ‘regular’ people who felt similarly frustrated she gained a sense of inclusion and she felt reassured that her thoughts and feelings were reasonable, common and natural.
A final way that the guidebook promoted a sense of inclusion related providing details of groups or health-care professionals to reach out to in order to avoid isolation and obtain advice. For participants, the guidebook helped ease anxiety by signposting the way to getting appropriate help, support or advice.
Aiding self-management
Participants already engaged in some form of self-management, either self-learned from experience or disseminated via social networks. They had also received advice on self-management during consultations with nurses and they discerned a clear role for the guidebook. First, participants used it in tandem with advice from nurses for reassurance that existing activities or hobbies were helpful or not harmful:
It confirms what you’re suspecting yourself, but you’re not sure. It just inspires you to say, ‘right, well, I will carry on doing this, this obviously seems to be the way forward’ (Patient29).
This participant was pleased to find that she could continue existing physical activities without worry about damaging joints or causing additional pain. Other participants focused on how the guidebook reassured them about how they used painkillers or supplements (and reinforced the advice provided by nurses on this topic).
Second, participants gained information about what they did not know, or what had not been discussed during consultations with the nurse such as using TENS machines, or aids and devices.
Third, patients used the guidebook as a counterbalance to things they had discussed with the nurse but had not felt entirely comfortable with:
The bits I found most interesting and probably the most helpful, are the bits about exercise, about keeping mobile, keeping moving. Finding something you enjoy doing, because there’s a lot of stuff I don’t like doing; I hate sports (Patient28).
Being advised to find an activity that suited their preferences was not only practical advice, but delivered in a way that made sense and was acceptable. It also counterposed the nurse’s focus who concentred on muscle strengthening exercises and aerobic fitness, which was not always something patients wanted to do.
In summary, the guidebook provided a flexible tool with which to support individuals’ preferred self-management approaches, which may or may not directly mirror professional advice.
Patient criticisms of the guidebook
The guidebook was not without criticism from patients. Whilst all patients found an element of the guidebook useful, some described misgivings about the relevance, usefulness and presentation of some of the material. Some (n = 2) participants suggested that the guidebook did not resonate with their personal situation. Both participants were in their late 40s and thought that the images of older adults engaged in activities did not relate to their identities as ‘young’ people.
A complaint from a small group of participants (n = 3) was that the guidebook duplicated lifestyle messages they had already obtained because of co-morbidities. One man commented that “in the booklet there’s a lot on diet and then the Stroke Association stuff, again, there was a lot on diet, and they overlap”. For him it felt like another indistinguishable set of materials about lifestyle. However, these participants did at the same time appreciate other aspects of the guidebook such as the explanation of OA and its prognosis.
One participant asserted that the guidebook adopted a patronising tone: “Some of it (long pause) I found was (long pause) a bit like you were talking to a child. I like to think I’ve got quite a bit of common sense, so it seemed a bit irrelevant”. This participant acknowledged that for other people the guidebook would be helpful and was the only individual to raise this issue.