Well-Being and Self-Rated Health in Stroke: A Qualitative Study of Patients with Stroke in the Community - Primary Care Unit

Title:	Well-Being and Self-Rated Health in Stroke: A Qualitative Study of Patients with Stroke in the Community
Principal research question:	The aims of the study are to answer the following questions:1) Why do some patients with major disabilities from stroke have positive well-being and subjective health and vice-versa and what factors convey resilience and adaptive coping?2) What are the key aspects that determine the sense of well-being of patients with stroke and what interventions do they feel would lead to its improvement?
Background:	Patient well-being, quality of life and patient-centred assessments of health have become important elements of outcome measurement, both in the provision of services in healthcare and in research [1, 2]. Increasingly, evidence suggests that poor self-rated health (SRH), an overall subjective assessment of health involving mental, social and physical dimensions [3], may independently predict poor health outcomes. These include increased risks of developing some chronic diseases, worsened prognoses or mortality [4-6], even when objective biological measures have been accounted for [2, 5, 6]. Such patient-centred assessments also independently predict decline in functional ability, the need for hospital care, institutionalisation and home visits, especially in the elderly [7, 8].The role of well-being in the outcome of stroke is of increasing interest. Studies looking at the role of clinical depression in the long term outcome of stroke suggest that it may be an independent prognostic indicator [9]. However, many patients with stroke do not meet the criteria for clinical depression, yet generalised distress and poor subjective well-being after stroke are common [10]; evidence suggests that rather than clinical depression, it may be lack of general and emotional well-being that is associated with the risks of stroke [11]. Patients who report poor subjective health-related well-being in the form of poor self-rated health appear to be at a greater risk of death from stroke, even after adjustment for potential confounders including depression [12].There is evidence from qualitative work in people who have had a stroke that patient well-being and levels of physical disability and function do not always correspond, with some patients adapting well, while others with objectively less severe strokes being severely disabled [13]. Qualitative work seeking to understand human experiences in stroke and to identify the needs of stroke patients and their families has suggested that family and social support, social context and the ability to pursue pre-stroke goals are all important aspects of how patients adapt to stroke [14]. However, further work is required to understand the impact of stroke: indeed, reducing physical impairment through rehabilitation may not reduce disability maximally unless other aspects of well-being and behaviour are also influenced. Exploring patient perspectives of, and potential influences on well-being in stroke will aid in understanding how patients may be maximally helped to overcome limitations caused by their stroke. In view of the fact that longer term well-being may have independent effects on survival and function, a deeper understanding of what determines well-being in this cohort may potentially lead to interventions focused on improving well-being in patients with stroke and thus enhancing the rehabilitation process.
Methodology description:	We plan to carry out a series of qualitative interviews with stroke patients in their own homes 4-6 months after they have had a stroke. Evidence shows that physical function improves most quickly in the first few weeks after stroke, reaching a plateau at approximately 3 months [15]. We are looking to interview patients once they are likely to have reached their maximum physical recovery as we are particularly interested in studying self-rated health in people living with the longer term effects of stroke, rather in the immediate acute recovery phase, which may bring with it a different set of emotional responses.We will set up clinical access and permissions. Themes for investigation of well-being and self-rated health in the form of a semi-structured interview will be derived from study of previous literature. We also plan to run a focus group of patients prior to the start of this study in order to help explore further potential questions relevant to well-being of patients with stroke that could be incorporated into the interview schedule.
Sample group description:	Focus GroupsA small number of stroke patients (6-8) will be sought through local groups and asked to volunteer to participate in the focus group session. The Stroke Clinic in Cambridge, the Cambridgeshire Community Services Stroke Rehabilitation Team, the Stroke Research Network and the Patient and Public Involvement forum at Addenbrooke’s Hospital have all been contacted to request their help in recruiting participants.Qualitative Interviews Study sample and recruitment: Patients will be recruited from the Addenbrooke’s Trust Stroke Unit and will be assessed for inclusion into the study. All patients will have had detailed neuroimaging at the stroke unit (as part of usual clinical care) which will provide information on extent and location of the stroke. The lead stroke consultant is collaborating on the study, and is happy to assist with the identification of patients in the clinic. Suitable participants will be identified by their clinical consultant at the time of their routine clinic follow up appointment which takes place 6-8 weeks following their discharge from the Stroke Unit. Only patients whom the stroke consultants feel would be able to provide informed consent will be given the information sheet (by their consultant) and asked to meet the researcher after their appointment and consider taking part. Sample size: A sample size of 20-25 selected patients for interview is planned.
Outcome measure description:	Using any conclusions from the data and relevant existing literature, we will build a model of well-being in stroke in order to develop a theory-based intervention for improved well-being in patients with stroke. We will try to determine the importance of various factors within the model, whether internal or external to the patient’s environment, to determine the most appropriate intervention.
Project organisation
Start date:	1st February 2011
End date:	28th February 2012
Contact person:	Dr Kate Williams
Contact Details:	Primary Care Research Unit Institute of Public Health University Forvie Site, Robinson Way Cambridge Cambs CB2 0SR UK Telephone: (01223) 330332 E-mail: kmw36@medschl.cam.ac.uk
References and Publications
The results will be disseminated to the academic community through peer-reviewed publications and by presentation at meetings.We plan to produce a lay summary of findings for all study participants (including those not selected for interview).