ObjectiveTo explore barriers and facilitators to staying in work following stroke.DesignQualitative analysis of posts regarding staying in work following stroke using the archives of an online forum for stroke survivors.Participants60 stroke survivors (29 male, 23 female, 8 not stated; mean age at stroke 44 years) who have returned to work, identified using terms ‘return to work’ and ‘back at work’.SettingPosts from UK stroke survivors and family members on Talkstroke, the forum of the Stroke Association, between 2004 and 2011.ResultsStroke and transient ischaemic attack (TIA) survivors reported residual impairments that for many had impact on work. Most impairments were ‘invisible’, including fatigue, problems with concentration, memory and personality changes. Participants described positive (eg, back at work being better than expected) and negative work experiences, including being at risk of losing the job because of stroke-related impairments. Barriers to successfully staying in work included lack of understanding of stroke—in particular invisible impairments—of survivors, employers and general practitioners (GPs), and lack of support in terms of formal adjustments, and ‘feeling supported’. Stroke survivors described how they developed their own coping strategies, and how workplace and employer helped them to stay in work.ConclusionsDespite having been able to return to work after a stroke, people may still experience difficulties in staying in work and risking losing their job. There is a need to improve awareness, in particular of invisible stroke-related impairments, among stroke survivors, work personnel and clinicians. This might be achieved through improved assessments of residual impairments in the workplace and in general practice. Future studies should investigate the effect of unrecognised fatigue and invisible impairments on staying in work following stroke, and explore the potential role for primary care in supporting stroke survivors who have returned to employment.
ObjectiveTo describe the characteristics of participants of an online stroke forum, their reasons for posting in the forum and whether responses addressed users' needs.MethodsDescriptive analysis of the population of 2004–2011 archives of Talkstroke, the online forum of the Stroke Association, and comparison with patients admitted to hospital with stroke (Sentinel Stroke National Audit Programme, SSNAP). Thematic analysis of posts from a sample of 59 participants representative of age at stroke and sex.SettingsUK.Main outcome measuresCharacteristics of participants: age, sex, survivor versus patient by third party, side of stroke (R, L), social class; (from the sample of 59 participants): level of disability, stroke type, classification of users' intents for writing a post in the forum, quantification of needs addressed by the forum, topics of discussion.Participants2348 participants (957 stroke survivors, 1391 patients with stroke talked about by third party).ResultsPatients of both sexes and from a wide range of ages at stroke (0 to 95 years) and degrees of disability were represented in the forum, although younger than the UK stroke population (mean age 52 years vs 77 years in SSNAP). Analysis of 841 posts showed that the main users' intents for writing in the forum were requests/offers of information and support (58%) and sharing own experiences of stroke (35%). Most information needs were around stroke-related physical impairments, understanding the cause of stroke and the potential for recovery. Up to 95% of the users' intents were met by the replies received.ConclusionsPatients' needs expressed in the online forum confirm and widen the evidence from traditional research studies, showing that such forums are a potential resource for studying needs in this population. The forum provided an opportunity for patients and families to give and receive advice and social support.
Background: Emotions may be important in patients' decisions to seek medical help for symptoms suggestive of cancer.Objectives: The aim of this systematic literature review was to examine quantitative literature on the influence of emotion on patients' help-seeking for symptoms suggestive of cancer. The objectives were to identify the following: (a) which types of emotions influence help-seeking behaviour, (b) whether these form a barrier or trigger for seeking medical help and (c) how the role of emotions varies between different cancers and populations.Methods: We searched four electronic databases and conducted a narrative synthesis. Inclusion criteria were studies that reported primary, quantitative research that examined any emotion specific to symptom appraisal or help-seeking for symptoms suggestive of cancer.Results: Thirty-three papers were included. The studies were heterogeneous in their methods and quality, and very few had emotion as the main focus of the research. Studies reported a limited range of emotions, mainly related to fear and worry. The impact of emotions appears mixed, sometimes acting as a barrier to consultation whilst at other times being a trigger or being unrelated to time to presentation. It is plausible that different emotions play different roles at different times prior to presentation.Conclusions: This systematic review provides some quantitative evidence for the role of emotions in help-seeking behaviour. However, it also highlighted widespread methodological, definition and design issues among the existing literature. The conflicting results around the role of emotions on time to presentation may be due to the lack of definition of each specific emotion.
Side effects of secondary prevention medications and statins in particular, cause anxiety and resentment in some patients, and their concerns are not always addressed by practitioners. Practitioners could consider more proactive strategies to manage such side effects. Forum feedback was appropriate and supportive of the practitioners' advice received. Our findings from peer-to-peer online conversations confirm and widen previous research.
BackgroundEvidence about how primary care can best enable survivors of transient ischaemic attack (TIA)/stroke return to work is limited.AimThis study explored the role of primary care in supporting survivors of transient ischaemic attack (TIA)/stroke return to work with stakeholders from a local UK community.DesignA qualitative study using framework analysis.MethodFour focus groups were carried out in Cambridgeshire, UK, between September and November 2015. The 18 participants included survivors of TIA/stroke, carers, an employer representative, GPs, occupational therapists (OTs), and clinical commissioners.ResultsThere was a mismatch between patient and carer needs and what is provided by primary care. This included: lack of GP awareness of invisible impairments; uncertainty how primary care could help in time-limited consultations; and complexity of return-to-work issues. Primary care physicians were not aware of relevant services they could refer patients to, such as OT support. In addition, there was an overall lack of coordination between different stakeholders in the return-to-work process. Linking with other services was considered important but challenging because of ongoing changes in service structure and the commissioning model. Suggestions for improvement include: a central contact in primary care for signposting to available services; a rehabilitation assessment integrated with the electronic record; and a patient-held shared-care plan at discharge from stroke wards.ConclusionImproving the role for primary care in helping survivors of TIA/stroke return to work is challenging. However, primary care could play a central role in initiating/coordinating vocational rehabilitation. Through focus group discussions with stakeholders from a local community, patients, carers, and clinical commissioners were able to put forward concrete proposals to address the barriers identified.
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