Background
Introduction
Stroke
Stroke and self-management support
Patient activation and tailoring of self-management support
Activity | Aims | Methods/Sources/Analysis |
---|---|---|
Systematic literature review | i) To identify the feasibility, acceptability, and effectiveness of self-management interventions for community-dwelling stroke survivors to inform the development of the intervention in this study | • Published literature sourced via key health-related databases (including Cinahl, Medline, Embase, PsycInfo & Cochrane Controlled Trials Register), published in English language, between 2000 and 2012, using terms related to ‘self-management’ and ‘stroke’ as keywords and subject headings |
• Relevant studies meeting the following criteria were included: quantitative or qualitative evaluation of an intervention, focussed on community-dwelling stroke survivors aged 18 years and over, and where the intervention was labelled as ‘self-management’ or clearly underpinned by the principles of a ‘person-centred’ approach to self-management (as developed by Lawrence and Kinns, 2012) | ||
ii) To identify gaps in existing research on stroke self-management interventions | ||
• Data extracted from relevant studies and quality appraisal conducted (by SR, LK, ML, JB, AR) | ||
• Findings synthesised and presented narratively | ||
Qualitative semi-structured interviews & focus groups | i) To understand stroke survivors’ perceptions towards self-management | • Qualitative semi-structured interviews with 20 stroke survivors & qualitative focus groups/telephone interviews with 11 stroke nurses from three Scottish health boards (conducted by SR & LK). |
• All interviews/focus groups lasted approximately one hour. | ||
ii) To understand stroke nurses’ perceptions towards stroke self-management and stroke self-management support | • Interviews with stroke survivors were conducted in participants’ homes and specifically explored their perceptions and attitudes towards self-management and self-management support, in particular their needs, abilities and preferences. | |
• Focus groups with stroke nurses were conducted in their practice base and specifically explored their perceptions and attitudes towards self-management, their current provision of tailored stroke self-management support and the context of, and barriers and facilitators to, its implementation in practice (including training and support needs). The interviews also aimed to discuss their views on what should be incorporated into the stroke self-management intervention that could be delivered within the context of their daily clinical practice and their specific training needs for delivering this. •Interviews/focus groups were audio-recorded, | ||
• Transcribed and thematically analysed to identify key issues and themes within the data (Braun and Clarke, 2006). | ||
• Emerging codes and themes were consistently questioned and reviewed by members of the research team (LK, SR, ML, JB, AR) and the advisory group to ensure credibility, transparency and trustworthiness of the emerging findings. | ||
Completion of the Patient Activation Measure | i) To obtain a quantifiable measurement of patient activation | • Completion of the Patient Activation Measure (PAM),2 with 20 stroke survivors, which was designed to provide a quantifiable measurement of how able and confident each individual felt to engage in their self-management (conducted by SR) |
ii) To determine ‘level of activation’ across the study sample | • The Patient Activation Measure is a patient-reported outcome measure (PROM) containing a series of 13 statements designed to assess the extent to which an individual feels that they have the responsibility, confidence and knowledge to self-manage (Hibbard and Gilburt, 2014). Individuals are asked to rate the degree to which they agree or disagree with each statement; responses are combined to provide a single score of between 0 and 100, which represents the individual’s perception of themselves as an active self-manager (higher scores = greater perceptions of activation) (Hibbard and Gilburt, 2014). | |
iii) To ‘test out’ the PAM and identify any preliminary issues in its use (prior to evaluation phase) | ||
• PAM data were analysed using descriptive statistics (AR) | ||
• During the interviews, stroke survivors were also asked for their thoughts on the content and wording of the questions in the PAM and its ease of use. |
Complex interventions and the MRC Framework
Methods
Study aim and design
Ethical approval
Participants and recruitment
Development phase methods & procedure
Evaluation phase methods & procedure
The Intervention
Procedure, training and fidelity
Evaluation questionnaires and focus group
Results
“It was a shock for me, and I was very scared about never being able to dance and exercise. So I worked very hard on myself, you know, even when I got home and I could only manage fifteen minute walk but, you know, I set myself little goals. My goal is, you know, to work towards my regaining, you know, my total fitness again for example I mean I am not unfit just now but…I want to try and get that back again.” (SS9, Highland) | |
“I set myself goals, certainly at the beginning of things I was going to do and I’ve managed to do that so I think and now I’ve got the goal, if you like, of going back to work and I mean I think ‘oh I’m going to have to do it soon’, so I am organising that at the moment and that’s my next thing.” (SS14, Fife) | |
“They [health professionals] don’t really want to know about you as an individual they just really want to dish out medicines and …erm… you know, they are all about risk rather than about helping someone to self-manage and live healthily with whatever has happened to them. My needs weren’t listened to. There isn’t really any facility really to pay attention to someone who wants to take responsibility for their own health, you know, there is no encouragement really to be able to do that.” (SS9, Fife) | |
“The stroke nurse is very good and the physiotherapist, they always leave their phone number “phone me if ever you want to speak to me about anything” well okay that is very good but you never do it, or seldom do it. It’s only when push comes to shove that you do it.” (SS10, Lanarkshire) | |
“I don’t think I’ve done anything off my own back. I always tell people like the physios I tell them what and I say “now is this okay or not okay” and they have been very keen for me to do this [exercising].” (SS10, Lanarkshire) |
“What hinders us is the lack of resources and services that are in Highland, and how remote our caseload is …erm… you’ve got some people that live in Inverness that have got access to services everywhere, which is fantastic, and then you’ve got patients fifty miles away that can’t access anything …and that is a severe barrier to being able to … get these people to self-manage, it’s just because they are on their own, you know, [and] unless they have got familyit’s very difficult.” (SN1, Highland) | |
“There’s new websites, the new workbook, the lifestyle [course] you’ve [speaking to another nurse] been doing it a few years but it’s still a new concept and so it’s, what do you offer people? You know, somebody said “there is people that you don’t offer anything to if it’s appropriate” [sic] they are not at that stage or are never going to want that type of thing or there are people that are maybe at different stages and not maybe a group person and nobody wants to work through a manual and not everybody can go online. my view about some of the interventions as well, none of them are golden goose eggs in the sense that they help people in their recovery well some help some people …erm… but there is nothing that’s like some sort of magic wand.” (SN4, Lanarkshire) | |
“I think that’s the challenges … we are always trying to find better ways to do things and [the question is] how that’s all joined up because, you know … there is always [sic] people coming up with different ways and ideas to look at things, and how does that become… joined up …?” (SN4, Fife) | |
Intervention | |
“Depending on what else you are doing that visit … you know, if you were going into this individuals’ to do that then it probably is okay … but if you had anything else to go over on that visit then no, it probably is a bit long … and to try and keep a stroke patients concentration for that long is very difficult, because I find myself, after about thirty minutes, you have lost them … (SN1, Highland) |
Q: Did you find the questions easy to understand? | |
“Yes but people who have suffered worse than me might prefer more specific questions.” (SS1) | |
“The questions were in plain English and straightforward.” (SS3) | |
“The questions were easy to understand and appeared to be structured in such a way that answering them was simplistic. All you had to do was be honest and express your true feelings. [The questions] made you more aware of how your condition was impacting on everyday life.” (SS5) | |
Q: How helpful did you find having the opportunity to identify and discuss your own goals/things that were important to you? | |
“Very helpful…helps me to move forward in achieving my goal.” (SS2). | |
“Very important to have something to aim for after a stroke to help with your recovery” (SS4). | |
“It was helpful to discuss goals with my nurse. By working together I was able to suggest goals and we both decided if my suggestions were relevant to my condition, and most importantly, achievable. Small steps still get you to your destination.” (SS5) | |
Q: How helpful did you find the specific self-management advice that was offered? | |
“It was very helpful. It helped me to focus on the areas that were most important to me instead of trying to address all issues at the same time. If these areas can be improved, everything else could hopefully improve.” (SS5) | |
“It was helpful as I was unsure of certain things.” (SS6) | |
Q: Did you feel the advice you were offered was relevant and appropriate to your needs? | |
“Yes very much so…we discussed in great detail where I wanted to be and how best to achieve this. It was a great help to speak to someone who had a high level of understanding of the problems I was facing and help to work out solutions.” (SS5) | |
“Very relevant as I needed a lot of advice.” (SS6). | |
Q: Do you feel you’ve learnt anything you didn’t know about your condition or managing things in your l ife that you didn’t know before? | |
“I’ve learnt a lot and I am more able to understand things more.” (SS1) | |
“Felt the people I talked to were very helpful and reassuring.” (SS3) | |
“Definitely. [Stroke nurse] spent time explaining how stroke was impacting on my life i.e. the side effects I was experiencing. She also gave me more confidence by praising how well I was coping with the side effects.” (SS5) | |
Q: Have you done anything differently to manage things in your life? | |
“I’ve looked more into managing things by myself in my life.” (SS1) | |
“I am eating better now after having problems and better after advice. I am no wiser about my condition though.” (SS4) | |
“Having a better understanding allows me to now voice concerns which previously I didn’t as I thought the problems I was having were par for the course.” (SS5) | |
“I now have definitely more focus on the important things to help me improve. There is also a more structured system in place for my daily activities as now I have a plan to follow. I praise myself more for achieving my own goals and I can now adjust these goals realistically. (SS5). | |
Q: Do you feel more confident to manage things in your life than you felt before? | |
“Yes…because of various agencies. I feel more confident to manage my condition.” (SS3) | |
“No as I still need assistance at all times…I am no wiser about my condition.” (SS4) | |
“Yes. I no longer allow the small setbacks to affect me as much. Previously my expectations were too high and I could feel dismayed if I did not meet them. I now have realistic goals which can be adjusted to suit my progress.” (SS5). |
V1: | But probably you would have gone through the same process but just recorded it in your notes whereas you’re recording it in a goal format … |
LK:
| How different was it? |
V1: | Hugely different [all voice agreement]. |
V4: | I suppose we are doing goal setting just now anyway we are just doing it differently. We are not doing the recording stage of it so how do you know what, I mean our patients still have goals; they say “this is what I want to do” and we are going to help them through that process. We are just not formally writing it. |
V1: | And recording it. |
V3: | … the girl I have done it with, she wouldn’t have verbalised that without me asking ‘what’s that goal that you want to be achieving?’ I was asking her about the forms, and she said…”It gives you a focus to know that’s there, and I’ve filled this in [the goal setting sections] |
V2: | Well I had a man like that that was questioning all that “I don’t know what you mean by that and I don’t know what you mean by that” [referring to individual PAM questions]. |
V3: | Whereas my lady was just “oh uh huh, yeah, aye, oh I agree with that, oh aye I agree with that”. |
V1: | And it’s not something that the majority of people are familiar doing when it’s that type of thing, you know, the kind of questionnaire things are usually yes, no or whereas it was a bit more. |
V3: | Aye so strongly agree was 4 and she’s got 1, 2, 3, 4, 5, 6, 7, 8, 9 [counting up the PAM question responses] ‘4’s and then the others [referring to other PAM question responses] are ‘3’s. |
LK:
| Yeah so that would kind of put her at the top end of the scale… |
V3: | Yeah, [the scores indicate] she’s definitely gonna do that [self-manage]. |
LK:
| You mean that it suggests she’s a very active self-manager and you wouldn’t say that she was? |
V3: | She’s not doing anything. |
V4: | Yep there was 1 or 2 he [referring to her patient] said that the language he didn’t feel was appropriate he felt that it was some of the words he knew what they meant but he was like that “this is really difficult”. |
V4: | [my man] was thinking of other people and he was like that “I don’t think a lot of your patients with communication problems [would be able to understand the questions].” |
V4: | I can’t say I have been trying it with absolutely everybody …erm… I’ve had quite a difficult run of the types of patients I have had…there has been bigger issues [than self-management] I suppose that had to get dealt with. |
LK: |
Yeah so it’s kind of been a kind of difficult caseload you’ve had?
|
V3: | And it’s absolutely time. |
V1: | And it’s adding onto your…[workload]. |
V3: | And that’s not what we would normally do. |
V1: | And it’s trebling the workload. |
LK: |
Yep so you think in terms of kind of workload it would put extra pressure on you?
|
V3: | See but the goal setting part I don’t think is unachievable I think it’s more if you’ve to fill in all these other things afterwards [the action plan and PAM]. |