Family Practice Advance Access originally published online on August 27, 2008
Family Practice 2008 25(5):355-361; doi:10.1093/fampra/cmn048
Secondary prevention of stroke: using the experiences of patients and carers to inform the development of an educational resource
a Devon Primary Care Trust, Stroke Unit, Newton Abbot Hospital, Devon TQ12 4PT, UK
b Peninsula Medical School (Primary Care), St Lukes Campus, Magdalen Road, Exeter EX2 1LU, UK
c Brunel University, Kingston Lane, Uxbridge, Middlesex UB8 3PH, UK
Correspondence to Rhoda Allison, Devon PCT, Stroke Unit, Newton Abbot Hospital, Devon TQ12 4PT, UK; Email: rhoda.allison{at}nhs.net
Received 11 January 2008; Revised 7 July 2008; Accepted 29 July 2008.
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Abstract |
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Background. Patients who have had one stroke are at increased risk of another. Secondary prevention strategies that address medical risk factors and promote healthy lifestyles can reduce the risk. However, concordance with secondary prevention strategies is poor and there has been little research into patient and carer views.
Objectives. To explore the experiences of patients and carers of receiving secondary prevention advice and use these to inform the development of an educational resource.
Methods. A total of 38 participants (25 patients and 13 carers) took part in the study which used an action research approach. Focus groups and interviews were undertaken with patients and carers who had been discharged from hospital after stroke (between 3 and 24 months previously). Framework analysis was used to examine the data and elicit action points to develop an educational resource.
Results. Participants’ main concern was their desire for early access to information. They commented on their priorities for what information or support they needed, the difficulty of absorbing complex information whilst still an in-patient and how health professionals’ use of language was often a barrier to understanding. They discussed the facilitators and barriers to making lifestyle changes. The educational resource was developed to include specific advice for medical and lifestyle risk factors and an individual action plan.
Conclusion. An educational resource for secondary prevention of stroke was developed using a participatory methodology. Our findings suggest that this resource is best delivered in a one-to-one manner, but further work is needed to identify its potential utility.
Keywords. Action research, lifestyle change, secondary prevention, stroke.
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Introduction |
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The term stroke refers to a clinical syndrome, of presumed vascular origin, typified by rapidly developing signs of disturbance of cerebral function, lasting more than >24 hours.1 Stroke is the second commonest cause of death in adults worldwide2 and the most significant cause of severe disability in the UK.3 Patients who have had one stroke have an increased risk of between 30% and 43% of having another within the next 5 years.4 Thus, the prevention of stroke is of paramount importance although a complex process requiring action at multiple levels.5
Educational intervention to affect behaviour change is a key strand in the effort to reduce the incidence of stroke. The National Clinical Guidelines for Stroke6 recommend that patients recovering from stroke are given advice and treatment to reduce the chance of a further event (secondary prevention). Secondary prevention strategies can be divided into two elements: (i) the optimum control of medical conditions that predispose to stroke, such as hypertension, hyperlipidaemia, atrial fibrillation and use of anti-thrombotic therapies and (ii) advice on lifestyle factors which can impact on risk for instance smoking, exercise, alcohol and diet.
A number of studies have attempted to assess the level of awareness of secondary prevention amongst patients who have had a stroke. Croquelois and Bogousslavsky7 interviewed 164 patients 3 months following a stroke in hospital outpatient clinics in Switzerland and reported that 65% were not aware of the origin of their stroke, and only 47% of those with hypertension recognized it as a risk factor. In addition, there is evidence that sustaining lifestyle change is difficult. Bak et al.8 found that only 22% of smokers stopped smoking within 6 months of their stroke.
Whilst several studies9,10 have attempted to quantify the success of different methods of education provision for patients following stroke, there is no published work exploring the experience of patients with stroke of receiving advice and only limited evidence of using of patient views in developing education interventions.11 Therefore, action research, which has been used to inform the development of health educational resources for patients with other conditions such as pre-diabetes,12 was purposively selected as an approach for this study to explore patient and carer experience of receiving and acting upon secondary prevention information with the goal of collaboratively developing an educational resource with patients. In doing so, this study aims to contribute new knowledge to the debate on how best to give patients and carers information post-stroke.
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Methods |
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Action research is a form of participatory research which involves carrying out research with and for patients in the context of its application rather than undertaking research on them.13 It differs from other forms of participatory research in its focus on action involving cycles of diagnosing, planning, action and evaluation.14 Its strength therefore lies in being able to address problems identified in the clinical setting and developing solutions in context to improve practice; the problem highlighted in this study as requiring intervention was the relevance of information given to patients after stroke. Focus groups and semi-structured interviews were used to systematically generate data.
Participants
Patients registered in one of three PCTs in South West England who had sustained a stroke were invited to participate, along with their carers. Potential participants were identified from hospital records using the ICD-10 codes for stroke. This sample was selected purposively to ensure that a variety of patients were invited to participate, including individuals characterized by a range of age, gender, time since stroke and impact of stroke (identified using the proxy of hospital length of stay). When it was not possible to interview patients with severe communication or cognitive impairment, their carers were included in the project. Table 1 summarizes the participant characteristics.
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Action research cycles
In all, 4 focus groups and 25 face-to-face interviews were conducted with participants. Patients and carers chose to either attend a community-based focus group or to take part in an interview in their home. Data collection focussed on three stages: exploration, intervention and evaluation13 (Fig. 1). For ease of description, the study is described using this structure, although in practice the phases overlapped somewhat. Such an approach reflects the nature of action research, responding flexibly to issues arising during the course of the fieldwork and in direct response to feedback from participants.
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The data were audio-taped and transcribed verbatim. As the literature has shown that peoples knowledge of potential risk factors for stroke to be poor,7 a simplified guide to secondary prevention (based on the stroke unit's care pathway and including medical and lifestyle factors associated with stroke) was presented and used in the discussions with study participants.
Exploration phase.. In this phase, views were gathered from patients and carers who had experience of stroke within the past 2 years. A topic schedule developed from the relevant literature was used to help guide semi-structured interviews and focus groups whilst still allowing participants to raise issues of personal importance. The schedule was based on open questions around individual experiences but covered areas of health and lifestyle associated with higher risk of stroke, such as knowledge of the risk of hypertension, smoking and so on.6 Three focus groups and three interviews were held to gain insight into participant's experiences of receiving information and data were analysed to examine current experience and help define the focus of the study. Participants’ comments on risk factors for stroke and how this information could be presented were captured and examined.
Intervention phase.. A further action cycle was implemented, involving the same participants in five interviews and one focus group. Feedback on the developing educational resource was collected and an iterative approach was used to refine the document.
Evaluation phase.. In the evaluation phase, a different group of 14 patients and 8 carers, who had received stroke care more recently and who volunteered to participate, were invited to comment on their experiences and on the developing resource. The topic schedule was modified to reflect some of the emerging themes from the data generated in previous stages. A different cohort of participants were purposively selected for this phase to ‘field test’ the utility and usability of the resource. Following analysis of their comments, further revisions of the educational material were made.
Data analysis
Data were analysed using content analysis15 in a framework.16 Analysis followed a step-wise method including identification of themes, generation of codes to label transcript passages, revision of themes and coding as data accumulated, code application to the final data set and exploration of theme relationships both within and between participants.
All transcripts were analysed by the principal investigator (RA). To strengthen the validity and trustworthiness of findings, one-third of the transcripts were also analysed by a second researcher (CK) providing triangulation through multiple analysis.17 Any differences in interpretation were resolved by mutual agreement. The codes and themes developed were further reviewed with the supporting data by a primary care clinician (PHE).
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Results |
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Two main themes strongly emerged from the data. Firstly, the process and timing of receiving secondary prevention advice with related subthemes related to priorities for information, the ability to comprehend information, understanding the diagnosis and the language of stroke and recalling information. Secondly, the theme of health beliefs and change which included subthemes around perceived risk and fear of a further stroke, and making lifestyle change. In addition, a significant number of comments relating to the developing educational resource were made.
Receipt and timing of information exchange
Receiving information and timing included subthemes around priorities for information, the ability to comprehend information, understanding the diagnosis and the language of stroke and recalling information.
Priorities for information.. Participants expressed varying priorities for information provision after stroke. For some, information regarding secondary prevention was extremely important:
‘I was a mechanical engineer by trade so I want to know what's happened, ... my priority is to stop having another one.’Participant 12 (age 68, 5 months post-stroke)
For others, particularly those coping with more severe stroke, the immediate priorities were different:
‘... regards prevention of further strokes well I wouldn't have been able to cope with that because I have to switch off from that ... I was just concerned about day to and it was the only way to handle it.’Carer 4 (age 66, 22 months after husband's stroke)
Ability to comprehend information.. Even those who wanted information described difficulties in processing information while in hospital. Half the participants indicated that they would be better able to understand information some time after the acute phase, but for half this difficulty persisted longer term due to difficulties with memory or language:
‘I think that for me it was about survival and just getting home and all this sort of stuff (information) would have been irrelevant ... its about when you are in a position to actually accept the information that would have been at least in my case 3 months.’Participant 2 (age 46, 24 months post-stroke).
Understanding the diagnosis and the language of stroke.. The majority of the participants and their carers interviewed recalled being given a diagnosis of stroke. For some, their diagnosis and future management was explained in a way they could understand, but for others, variation in the language used to describe and explain stroke led to confusion about diagnosis and potential misunderstanding:
‘... he did say the name of it (the stroke) but like all doctors they like to say it in Latin ... something like PP, PTA whatever it is ...’Participant 18 (age 37, 3 months post-stroke)
Recalling information on secondary prevention.. Although many of the participants could recall their diagnosis, they were less clear on advice regarding secondary prevention. A minority of the participants did not feel it was relevant to receive detailed information on medicines, preferring to follow medical advice.
‘We just rely on the doctor––we don't query it really.’Participant 22 (age 85, four months post-stroke).
Others wanted much more in-depth information and sought further knowledge for themselves, often via the internet. A number commented on the difficulty of knowing which sources to trust.
‘We looked at the Internet ... but one conflicts with another as to what you should be eating, what you should be doing so its, it's very difficult, very unclear.’Participant 17(age 57, 5 months post-stroke).
Health beliefs and change.. Health beliefs and change included subthemes around perceived risk and fear of a further stroke, and making lifestyle change, including barriers to change.
Perceived risk and fear of a further stroke.. Over half of the participants with stroke articulated the fear of having another event.
‘... you never know when it's going to happen ... it has affected my vision, memory, some speech and thought––they are things that you can more of less cope with but if it was to take anything else well––I don't know whether I would be able to carry on coping.’Participant 1(age 60, 19 months post-stroke).
‘I am forever feeling my pulse and I have to clutch my wrist and make sure that I am not on fibrillation again––I am so frightened of it.’
Participant 4 (age 68, 10 months post-stroke).
This corroborates the findings of Hare et al.18 who also found that fear of another stroke was a main concern of stroke survivors.
Making lifestyle change.. There was a mixed response to advice on changing lifestyle to reduce the risk of stroke. For a number of participants, the stroke provided an impetus for lifestyle change, whilst others felt a sense of unfairness if they felt their previous lifestyle had been good.
‘I lost weight because I was told I had to and the stroke was the kick up the backside I needed so I thought right ... now I'm over half a stone lighter.’Participant 9 (age 64, 24 months post-stroke).
There were a number of barriers to making change. The majority of participants stated they felt too old to make lifestyle changes, and others articulated the difficulty in sustaining change over time. Conflicting advice was also mentioned by one-fifth of the participants:
‘... the trouble with lifestyle is it's too late for me.’Participant 20 (age 80, 10 months post-stroke).
‘... you get very conflicting information from the doctors you get the complete opposites––I have discovered, I have to, I am sorry but I have to adjust my own tablets because one tells me one thing and other one tells me the complete opposite.’
Participant 3 (age 67, 9 months post-stroke).
Developing the educational resource
Whilst discussing their experiences, patients and carers expressed a need for consistent and personalized advice on secondary prevention. Their feedback and suggestions were used to inform the development of the educational resource.
The simplified guide to risk factors used at the start of the study was a single sheet outlining the management of both cerebral haemorrhage, infarct and lifestyle factors. During the exploratory phase, it became apparent that participants and carers wanted more specific information, so the resources were customized into three separate guides for medical management of haemorrhage, for infarct and lifestyle changes. Following feedback in the intervention and evaluation action cycles, these resources were further developed to contain more detailed information (Table 2). The final document contains facts on all potential risks for stroke, national recommendations for targets such as blood pressure, common medicines used and more specific lifestyle advice such as the expected intensity of exercise. Also included is an action plan which enables identification of the individual's risk factors and for setting personal targets.
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A proposal to develop an organized programme of group education post-discharge was not popular as the majority of participants felt they would not be able to engage in this. The need for knowledge about equipment, benefits, driving and so on was raised and led to the development of another package of general information. This resource incorporated a list of recommended web sites and signposts for further details. The majority of participants stressed the need for information to be discussed with them rather than just given.
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Discussion |
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This is the first study to use an action research approach to rigorously explore patient and carer experiences of receiving and acting upon secondary stroke prevention advice and make use of these insights for developing a resource that is firmly grounded in the patient and carer perspective. This study gives clinicians a rigorously developed educational resource to use with patients post-stroke which has been developed using a bottom-up approach and which engages meaningfully with patients at this stage of their illness.
Although previous studies have demonstrated the lack of effectiveness of education initiatives after stroke,8,9 no studies were found that explored the patient or carer experiences of receiving information. Furthermore, few studies have utilized patient views in the development of educational resources.11 Thus, findings from this study contribute to this identified gap in the literature. In addition, this study gives insight into the multiple factors which impact on the ability of patients to receive and act on secondary prevention education. For some patients, secondary prevention was not a priority in the face of surviving a major stroke, and others preferred to put their trust in clinical staff without a need for in-depth information. Yet for those who do want information, timing of when this is provided remains an issue and requires more investigation. Most studies of stroke prevention indicate that the risk of a further stroke is highest early after stroke, leading to recommendations that secondary prevention strategies are implemented rapidly.4 Ovbiagele et al.19 have suggested that initiating formal education sessions of prevention whilst patients are still in hospital may improve adherence to treatment regimes. However, findings from this study suggest that patients may find it very difficult to absorb detailed information whilst still an in-patient and are likely to need repeated opportunities to access information and education after discharge from hospital; information provided should be highly individualized and delivered one to one.
Findings in this study suggest that a positive approach to lifestyle change may be linked to the recognition of perceived benefits. There were, however, significant barriers to making lifestyle change including patients’ perceptions that they were too old to undertake this change. Those who had been successful in implementing lifestyle change initially discussed the difficulties in maintaining this long term.
A particular strength of this study is the high level of engagement of patients and carers which was instrumental in improving the relevance, acceptability and, thus, validity of the educational resource. Limitations of the study were that the average age of participants with stroke was 69 years, which is lower than the average age of someone experiencing stroke in the UK20 and the relatively small number of participants. Previous patient and public involvement works in the local health community suggest that many people have difficulty engaging with service reviews and development in the first few years after stroke, possibly because they are still recovering. Drawing participants from a predominantly rural area in the South West is unlikely to produce a sample generalizable to a broader population from the UK, so some caution should be exercised before translating these results to other geographical areas, such as those with larger ethnic populations.
The study has led to the development of a robust resource for secondary prevention education that is meaningful to patients and carers and can be used in clinical practice. Furthermore, findings have given an important insight into patients’ and carers’ experiences of receiving secondary prevention advice after stroke, particularly with regard to priorities, ability to receive information and beliefs and are reflective of the complexity of behavioural change following a serious life event. Development of a behavioural intervention based on this work would require more attention particularly to pre-clinical work to review relevant theory and to theoretical modelling to further define the intervention's components and their relationships.5 Further work is needed to ascertain the time points of delivery and establish the effectiveness of the resource in the overall goal of ameliorating the devastating effects of stroke.
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Declaration |
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Funding: This project was funded by a grant from the Peninsula Primary Care Research Network.
Ethical considerations: Ethical approval for the study was obtained from the South Devon Ethics Committee (REC: 06/Q2104/14).
Conflicts of interest: None.
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Acknowledgments |
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The authors are grateful to all the patients with stroke and their carers who participated in the study, to the South Devon Stroke Patient and Public Involvement Group for their advice on the project, to Jacky Youngman for her assistance with focus groups and transcribing the data and to Joy Choules for her assistance with revisions to the manuscript.
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Notes |
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Rhoda A, Evans PH, Kilbride C and Campbell JL. Secondary prevention of stroke: using the experiences of patients and carers to inform the development of an educational resource. Family Practice 2008; 25: 355–361.
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References |
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