Using co-design methods to develop new personalised support for people living with Long Covid: The 'LISTEN' intervention.

INTRODUCTION: Many Covid-19 survivors are living with unresolved, relapsing and remitting symptoms and no 'one size' of treatment is likely to be effective for everyone. Supported self-management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co-design framework to guide replication and evaluation. METHODS: We used the improvement methodology, Experience-Based Co-Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from 'Bridges Self-Management' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co-designed resources are also central to Bridges. Adults who self-identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co-design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. RESULTS: People with LC (n = 28), and HCPs (n = 9) supported co-design of a book (hard-copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co-design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co-design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. CONCLUSION: We have developed a new personalised support intervention, with core principles to be used in one-to-one sessions delivered by trained HCPs, with a new co-designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the 'LISTEN' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. PATIENT AND PUBLIC CONTRIBUTION: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co-design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co-authors of this paper.

An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid.

BACKGROUND: Around one in ten people who contract Covid-19 report ongoing symptoms or 'Long Covid'. Without any known interventions to cure the condition, forms of self-management are routinely prescribed by healthcare professionals and described by people with the condition. However, there is limited research exploring what strategies are used to navigate everyday life with Long Covid, and experiences that initiate development of these strategies. Our study aimed to explore the range and influence of self-generated strategies used by people with Long Covid to navigate everyday life within the context of their own condition. METHODS: Forming part of the Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) project, we conducted a qualitative study using narrative interviews with adults who were not hospitalised with Covid-19. Participants aged over 18 years, who self-identified with Long Covid, were recruited from England and Wales. Data were analysed with patient contributors using a reflexive thematic analysis. RESULTS: Eighteen participants (mean age = 44 years, SD = 13 years) took part in interviews held between December 2021 and February 2022. Themes were constructed which depicted 1) the landscape behind the Long Covid experience and 2) the everyday experience of participants' Long Covid. The everyday experience comprised a combination of physical, emotional, and social factors, forming three sub-themes: centrality of physical symptoms, navigating 'experts' and the 'true colour' of personal communities, and a rollercoaster of psychological ambiguity). The third theme, personal strategies to manage everyday life was constructed from participants' unique presentations and self-generated solutions to manage everyday life. This comprised five sub-themes: seeking reassurance and knowledge, developing greater self-awareness through monitoring, trial and error of 'safe' ideas, building in pleasure and comfort, and prioritising 'me'. CONCLUSIONS: Among this sample of adults with Long Covid, their experiences highlighted the unpredictable nature of the condition but also the use of creative and wide ranging self-generated strategies. The results offer people with Long Covid, and healthcare professionals supporting them, an overview of the collective evidence relating to individuals' self-management which can enable ways to live 'better' and regain some sense of identity whilst facing the impact of a debilitating, episodic condition. TRIAL REGISTRATION: LISTEN ISRCTN36407216.

How do stroke survivors and their caregivers manage post-stroke fatigue? A qualitative study.

OBJECTIVES: The primary objective was to gain insight into the lived experiences of using day-to-day strategies to manage post-stroke fatigue. DESIGN: Qualitative, descriptive study. SETTING: Community telephone interviews. PARTICIPANTS: A purposive sample of 20 stroke survivors with current, or previous, post-stroke fatigue, and 8 caregivers, who provided informal care or support, were recruited. MAIN MEASURES: Semi-structured telephone interviews were undertaken. Data were analysed using a framework approach. RESULTS: Most participants had found their own ways of coping and their personal strategies included acceptance of having fatigue; 'pacing' (spreading activities out and interspersing with rest periods); keeping a diary in order to plan activities and to identify 'trigger' activities which induced fatigue; talking to (and educating) others about having fatigue; using relaxation; and accessing professional advice and support. The burden placed on caregivers was considerable and they often had to oversee the post-stroke fatigue management strategies used. CONCLUSIONS: Post-stroke fatigue is managed in different ways and there was not one particular strategy that seemed effective for everyone. Most people in our study had had to devise their own ways of coping practically. Given the scale of this problem, which profoundly impacts the lives of both stroke survivors and caregivers, the management of post-stroke fatigue merits more attention and evaluation. However, this must be directly informed by those with lived experience.

Expression of Endogenous Putative TSH Binding Protein in Orbit.

Thyroid stimulating antibodies (TSAB) cause Graves' disease and contribute to Graves' Orbitopathy (GO) pathogenesis. We hypothesise that the presence of TSH binding proteins (truncated TSHR variants (TSHRv)) and/or nonclassical ligands such as thyrostimulin (α2ß5) might provide a mechanism to protect against or exacerbate GO. We analysed primary human orbital preadipocyte-fibroblasts (OF) from GO patients and people free of GO (non-GO). Transcript (QPCR) and protein (western blot) expression levels of TSHRv were measured through an adipogenesis differentiation process. Cyclic-AMP production by TSHR activation was studied using luciferase-reporter and RIA assays. After differentiation, TSHRv levels in OF from GO were significantly higher than non-GO (p = 0.039), and confirmed in ex vivo analysis of orbital adipose samples. TSHRv western blot revealed a positive signal at 46 kDa in cell lysates and culture media (CM) from non-GO and GO-OF. Cyclic-AMP decreased from basal levels when OF were stimulated with TSH or Monoclonal TSAB (M22) before differentiation protocol, but increased in differentiated cells, and was inversely correlated with the TSHRv:TSHR ratio (Spearman correlation: TSH r = -0.55, p = 0.23, M22 r = 0.87, p = 0.03). In the bioassay, TSH/M22 induced luciferase-light was lower in CM from differentiated GO-OF than non-GO, suggesting that secreted TSHRv had neutralised their effects. α2 transcripts were present but reduced during adipogenesis (p < 0.005) with no difference observed between non-GO and GO. ß5 transcripts were at the limit of detection. Our work demonstrated that TSHRv transcripts are expressed as protein, are more abundant in GO than non-GO OF and have the capacity to regulate signalling via the TSHR.

Mucosal inflammation downregulates PHD1 expression promoting a barrier-protective HIF-1α response in ulcerative colitis patients.

The HIF hydroxylase enzymes (PHD1-3 and FIH) are cellular oxygen-sensors which confer hypoxic-sensitivity upon the hypoxia-inducible factors HIF-1α and HIF-2α. Microenvironmental hypoxia has a strong influence on the epithelial and immune cell function through HIF-dependent gene expression and consequently impacts upon the course of disease progression in ulcerative colitis (UC), with HIF-1α being protective while HIF-2α promotes disease. However, little is known about how inflammation regulates hypoxia-responsive pathways in UC patients. Here we demonstrate that hypoxia is a prominent microenvironmental feature of the mucosa in UC patients with active inflammatory disease. Furthermore, we found that inflammation drives transcriptional programming of the HIF pathway including downregulation of PHD1 thereby increasing the tissue responsiveness to hypoxia and skewing this response toward protective HIF-1 over detrimental HIF-2 activation. We identified CEBPα as a transcriptional regulator of PHD1 mRNA expression which is downregulated in both inflamed tissue derived from patients and in cultured intestinal epithelial cells treated with inflammatory cytokines. In summary, we propose that PHD1 downregulation skews the hypoxic response toward enhanced protective HIF-1α stabilization in the inflamed mucosa of UC patients.

Addressing social determinants of noncommunicable diseases in primary care: a systematic review.

OBJECTIVE: To explore how primary care organizations assess and subsequently act upon the social determinants of noncommunicable diseases in their local populations. METHODS: For this systematic review we searched the online databases of PubMed®, MEDLINE®, Embase® and the Health Management Information Consortium from inception to 28 June 2019, along with hand-searching of references. Studies of any design that examined a primary care organization assessing social determinants of noncommunicable diseases were included. For quality assessment we used Cochrane's tool for assessing risk of bias in non-randomized studies of interventions. We used narrative data synthesis to appraise the extent to which the assessments gathered data on the domains of the World Health Organization social determinants of health framework. FINDINGS: We identified 666 studies of which 17 were included in the review. All studies used descriptive study designs. Clinic-based and household surveys and interviews were more commonly used to assess local social determinants than population-level data. We found no examples of organizations that assessed sociopolitical drivers of noncommunicable diseases; all focused on sociodemographic factors or circumstances of daily living. Nevertheless, the resulting actions to address social determinants ranged from individual-level interventions to population-wide measures and introducing representation of primary care organizations on system-level policy and planning committees. CONCLUSION: Our findings may help policy-makers to consider suitable approaches for assessing and addressing social determinants of health in their domestic context. More rigorous observational and experimental evidence is needed to ascertain whether measuring social determinants leads to interventions which mitigate unmet social needs and reduce health disparities.

Restraint minimisation in mental health care: legitimate or illegitimate force? An ethnographic study.

Coercive practices, such as physical restraint, are used globally to respond to violent, aggressive and other behaviours displayed by mental health service users.1 A number of approaches have been designed to aid staff working within services to minimise the use of restraint and other restrictive practices. One such approach, the 'REsTRAIN Yourself' (RYS) initiative, has been evaluated in the UK. Rapid ethnography was used to explore the aspects of organisational culture and staff behaviour exhibited by teams of staff working within 14 acute admission mental health wards in the North West region of the English NHS. Findings comprise four core themes of space and place; legitimation; meaningful activity; and, therapeutic engagement that represent characteristics of daily life on the wards before and after implementation of the RYS intervention. Tensions between staff commitments to therapeutic relations and constraining factors were revealed in demarcations of ward space and limitations on availability of meaningful activities. The physical, relational and discursive means by which ward spaces are segregated prompts attention to the observed materialities of routine care. Legitimation was identified as a crucial discursive practice in the context of staff reliance upon coercion. Trauma-informed care represents a potentially alternative legitimacy.

Supporting self-management after traumatic brain injury: Codesign and evaluation of a new intervention across a trauma pathway.

BACKGROUND: Supported self-management (SSM) is a recognized approach for people with long-term conditions but, despite the prevalence of unmet needs, little is known about its role for people with traumatic brain injury (TBI). OBJECTIVES: To codesign an SSM intervention with people with TBI and evaluate feasibility of implementation through multidisciplinary staff across a trauma pathway. SETTING AND PARTICIPANTS: People who had previously been admitted to a Major Trauma Centre following TBI and family members participated in a series of codesign activities. Staff attended SSM workshops and used the intervention with patients in acute and rehabilitation settings. METHODS: We used Normalization Process Theory constructs to guide and interpret implementation. Knowledge, beliefs and confidence of staff in SSM were assessed through pre- and post-training questionnaires, and staff, patients' and families' experiences were explored through semi-structured interviews. Qualitative data were analysed thematically, and clinical measures were mapped against a matched sample. RESULTS: Codesigned resources were created and used within an SSM approach for which 110 staff participated in training. Evaluation demonstrated significant differences in staff SSM confidence and skills, following training. Qualitative evaluation revealed adoption by staff, and patients' and families' experiences of using the resources. Challenges included reaching staff across complex pathways to achieve collective implementation. CONCLUSION: This is the first project to demonstrate feasibility of SSM for people after TBI starting in an acute trauma setting. Through an open approach to codesign with a marginalized group, the SSM resources were valued by them and held meaning and relevance for staff.

A qualitative study exploring therapists' experiences of implementing a complex intervention promoting meaningful activity for residents in care homes.

OBJECTIVES:: To explore the experiences of occupational therapists and physiotherapists and to reveal any factors that can facilitate delivering a complex care home intervention promoting meaningful activity. DESIGN:: Qualitative interview study using data from three focus groups conducted longitudinally post intervention implementation. Data were analysed thematically. SETTING:: Three residential care homes in South London, UK. SUBJECTS:: All therapists involved in the implementation of the intervention: three occupational therapists and three physiotherapists. RESULTS:: Three interconnected themes emerged from the analysis: (1) developing trusting relationships, (2) empowering staff and (3) remaining flexible. Therapists described how successfully implementing a complex care home intervention was dependant on developing trusting relationships with care staff. This enabled the therapists to empower care staff to take ownership of the intervention and help embed it in care home culture, facilitating long-term change. The therapists described how remaining flexible in their approach helped keep care staff engaged for the duration of implementation. CONCLUSION:: This study has revealed several important factors that can help facilitate therapists delivering complex interventions in care homes.

Rehabilitation following lumbar fusion surgery (REFS) a randomised controlled feasibility study.

PURPOSE: Following lumbar fusion surgery (LFS), 40% of patients are unsure/dissatisfied with their outcome. A prospective, single-centre, randomised, controlled trial was conducted to evaluate the feasibility (including clinical and economic impact) of a theoretically informed rehabilitation programme following LFS (REFS). METHODS: REFS was informed by an explicit theoretical framework and consisted of 10 consecutive weekly group rehabilitation sessions (education, low-tech cardiovascular, limb and spine strengthening exercises, and peer support). Participants were randomised to REFS or 'usual care.' Primary feasibility outcomes included recruitment and engagement. Secondary outcomes, collected preoperatively and 3, 6, and 12  months postoperatively, comprised the Oswestry disability index, European Quality of Life 5 dimensions score, pain self-efficacy questionnaire, hospital anxiety and depression scale and the aggregated functional performance time. Economic impact was evaluated with the Client Services Receipt Inventory. RESULTS: Fifty-two of 58 eligible participants were recruited, and engagement with REFS was > 95%. REFS participants achieved a clinically meaningful reduction in unadjusted mean short-term disability (- 13.27 ± 13.46), which was not observed in the 'usual care' group (- 2.42 ± 12.33). This was maintained in the longer term (- 14.72% ± 13.34 vs - 7.57 ± 13.91). Multilevel regression analyses, adjusted for body mass index, baseline depression, and smoking status reported a statistically significant short-term improvement in disability (p = 0.014) and pain self-efficacy (p = 0.007). REFS costs £275 per participant. CONCLUSIONS: Results suggest that REFS is feasible and potentially affordable for delivery in the National Health Service. It is associated with a clinically meaningful impact. A multicentre randomised controlled study to further elucidate these results is warranted. These slides can be retrieved under Electronic Supplementary Material.

Relationship between work-family conflict and unhealthy eating: Does eating style matter?

There is increasing evidence to suggest that work-family conflict is implicated in poor eating patterns. Yet, the underlying mechanism remains unexplored. The objectives of the present study were to demonstrate the interplay between work-family conflict, eating style, and unhealthy eating, and to test whether body mass index (BMI) and its interactions further explicate the relationships. In this study, 586 Malaysian adults (normal weight n = 437, overweight n = 149) completed a questionnaire, which included demographic variables, work-family scales, eating style measures, namely, restrained, emotional or external eating and reported food intake. As hypothesized, results showed that family-to-work conflict (FWC), emotional eating and external eating were positively related to unhealthy food consumption. In addition, emotional eating was found to moderate the impact of FCW on eating. These findings are consistent with research that has revealed emotional eating can indeed increase the positive association between stress such as conflict and unhealthy food choices. However, we found no clear support for the interactive effects of BMI. Our research builds on the findings of existing research as it demonstrates the role of eating style in explaining the association between work-family conflict and unhealthy eating. This conclusion has potential implications for appropriate interventions and calls for the enhancement of various policies to tackle obesity and other health problems.

Implementing an interprofessional model of self-management support across a community workforce: A mixed-methods evaluation study.

The importance of implementing self-management support (SMS) is now widely accepted, but questions remain as to how. In 2015, we facilitated the implementation of an interprofessional model of SMS (Bridges Self-Management) for people with complex multiple long-term conditions through community rehabilitation and social care services in one Southeast England locality. Over 90 professionals and support workers from this workforce received interprofessional training to integrate SMS into their care and rehabilitation interactions. This gave an opportunity to explore how SMS can be implemented in practice. We conducted a mixed-methods study with unequal weighting (qualitative emphasis), concurrent timing, and embedded design. Staff provided written feedback and case reflections, participated in group discussions, and completed a survey of self-management beliefs and attitudes. We recruited a convenience sample of 10 service users and conducted qualitative interviews and standardised questionnaires. Findings showed that staff appreciated and benefited from the interprofessional learning environment. Staff reported changes in their interactions with service users and colleagues and had gained knowledge and confidence to support individuals to self-manage. Data also highlighted the need to facilitate SMS practice at the level of service organisation. Service user data illustrated the impact of interactions with staff, and how SMS had increased service users' confidence and encouraged different skills to manage life with their conditions. This project has shown how multi-agency community teams can benefit from interprofessional training to enhance SMS for people living with long-term conditions, build a shared understanding of SMS, and integrate effective SMS strategies into everyday practices.

It's the talk: a study of involvement initiatives in secure mental health settings.

BACKGROUND: A study of involvement initiatives within secure mental health services across one UK region, where these have been organized to reflect alliances between staff and service users. There is little previous relevant international research, but constraints upon effective involvement have been noted. OBJECTIVE: To explore and evaluate involvement initiatives in secure mental health settings. DESIGN: A case study design with thematic analysis of qualitative interviews and focus groups. SETTING AND PARTICIPANTS: Data collection was carried out between October 2011 and February 2012 with 139 staff and service users drawn from a variety of secure mental health settings. FINDINGS: Our analysis offers four broad themes, titled: safety and security first?; bringing it all back home; it picks you up; it's the talk. The quality of dialogue between staff and services users was deemed of prime importance. Features of secure environments could constrain communication, and the best examples of empowerment took place in non-secure settings. DISCUSSION: Key aspects of communication and setting sustain involvement. These features are discussed with reference to Jurgen Habermas's work on communicative action and deliberative democracy. CONCLUSIONS: Involvement initiatives with service users resident in secure hospitals can be organized to good effect and the active role of commissioners is crucial. Positive outcomes are optimized when care is taken over the social space where involvement takes place and the process of involvement is appreciated by participants. Concerns over risk management are influential in staff support. This is germane to innovative thinking about practice and policy in this field.

Interprofessional teamwork in stroke care: Is it visible or important to patients and carers?

Interprofessional teamwork is seen in healthcare policy and practice as a key strategy for providing safe, efficient and holistic healthcare and is an accepted part of evidence-based stroke care. The impact of interprofessional teamwork on patient and carer experience(s) of care is unknown, although some research suggests a relationship might exist. This study aimed to explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care. Critical incident interviews were conducted with 50 patients and 33 carers in acute, inpatient rehabilitation and community phases of care within two UK stroke care pathways. An analytical framework, derived from a realist synthesis of 13 'mechanisms' (processes) of interprofessional teamwork, was used to identify positive and negative 'indicators' of teamwork. Participants identified several mechanisms of teamwork, but it was not a subject most talked about readily. This suggests that interprofessional teamwork is not a concept that is particularly important to stroke patients and carers; they do not readily perceive any impacts of teamwork on their experiences. These findings are a salient reminder that what might be expected by healthcare professionals to be important influences on experience may not be perceived to be so by patients and carers.

The Swedish Stroke Self-Efficacy Questionnaire: translation and cross-cultural adaptation.

OBJECTIVE: To translate and cross-culturally adapt the Stroke Self-Efficacy Questionnaire (SSEQ) from English to Swedish and to evaluate psychometric properties of the questionnaire. METHODS: A cross-sectional study design, where the translation followed a process including initial translation, synthesis, backward translation, expert committee, and pretest. Content validity was assessed using Content validity index (CVI). Psychometric assessments included floor-ceiling effects and internal consistency. RESULTS: Language and cultural congruence were achieved, and content validity index scores were high (0.923-1). The psychometric evaluations provided acceptable outcomes concerning internal consistency, with Cronbach's alpha scores for the total scale (0.902), the activities subscale (0.861) and the self-management subscale (0.818) respectively. Ceiling effects were evident, but no floor effects. CONCLUSION: This study found the Swedish version of the SSEQ promising as a tool for assessment of self-efficacy in a Swedish stroke care setting, although further psychometric assessments are recommended in future studies.

Building Bridges between People with Stroke, Families, and Health Professionals: Development of a Blended Care Program for Self-Management.

Evidence-informed interventions for stroke self-management support can influence functional capability and social participation. People with stroke should be offered self-management support after hospital discharge. However, in Portugal, there are no known programs of this nature. This study aimed to develop a person-centered and tailored blended care program for post-stroke self-management, taking into account the existing evidence-informed interventions and the perspectives of Portuguese people with stroke, caregivers, and health professionals. An exploratory sequential mixed methods approach was used, including qualitative methods during stakeholder consultation (stage 1) and co-production (stage 2) and quantitative assessment during prototyping (stage 3). After ethical approval, recruitment occurred in three health units. Results from a literature search led to the adaptation of the Bridges Stroke Self-Management Program. In stage one, 47 participants were interviewed, with two themes emerging: (i) Personalized support and (ii) Building Bridges through small steps. In stage two, the ComVida program was developed, combining in-person and digital approaches, supported by a workbook and a mobile app. In stage three, 56 participants evaluated prototypes, demonstrating a strong level of quality. Understandability and actionability of the developed tools obtained high scores (91-100%). The app also showed good usability (A-grade) and high levels of recommendation (5 stars).

Self-management programmes for people post stroke: a systematic review.

OBJECTIVE: To examine the evidence base underlying self-management programmes specific to stroke survivors. DATA SOURCES: Eleven electronic databases were searched using combinations of keywords related to stroke and self-management. REVIEW METHODS: Studies involving adults with a clinical diagnosis of stroke, which explored self-management interventions, were included. Study selection was verified by two reviewers who independently conducted methodological quality appraisal and data extraction using a tool developed by The American Academy for Cerebral Palsy and Developmental Medicine. RESULTS: Fifteen studies were included in this review. Significant treatment effects in favour of the self-management intervention were found in six out of nine randomized controlled trials, and three out of six non-randomized trials in our review. Four randomized controlled trials involving more than 100 participants per trial reported statistically significant results in favour of the self-management group in relation to measures of disability, confidence in recovery, the stroke specific quality of life (sub-scales of family roles and fine motor tasks), and the physical component scale of the short form SF-36 Score. The wide range of outcome measures used prevented comparison across studies. CONCLUSIONS: This review provides some preliminary support for the potential importance of self-management interventions after stroke. The most appropriate content and best approach for delivery of these interventions remains to be determined. Further high-quality randomized controlled trials are needed to test the feasibility, acceptability, and efficacy of stroke self-management programmes.

A randomized trial of written emotional disclosure interventions in school teachers: controlling for positive expectancies and effects on health and job satisfaction.

Writing expressively about distressing experiences has been found to have beneficial health effects. This study examined the effects of written emotional disclosure (WED) interventions on the self-reported health and job satisfaction of school teachers, and compared standard WED instructions with two commonly used more prescriptive variants. The study also controlled and measured the between-condition comparability of participants' post-writing benefit expectations. Teachers (final N = 77) were randomized to a control writing condition or one of three WED conditions that varied the number and/or type of experiences participants wrote about. All teachers wrote for 20 min on three consecutive days at home. Psychological health, physical health, and job satisfaction were assessed at baseline, two weeks, two months, and six months post-intervention. Participants' expectations of benefit following writing were equivalent across conditions. There was no significant effect of any of the three WED interventions, compared to control writing, on psychological or physical health or job satisfaction. There was, however, a significant and sizeable improvement in physical health across writing conditions from baseline to two-month follow-up, and this was maintained at six months. The findings show that control writing can produce comparable expectations of benefit to WED, and are consistent with the possibility that benefit expectancies can effect health improvements following disclosure or control writing. Most previous studies have examined WED with students or patient groups, and the findings also raise an important question about the feasibility of multi-session writing interventions for mid-life working samples. Further studies with occupational groups are warranted, as is further investigation into the role of positive expectancies in WED effects.

How to develop a patient and carer advisory group in stroke care research.

AIM: The aim of this paper is to inform and advise researchers on the practical issues associated with involving stroke patients and their carers in research. BACKGROUND: The involvement of patients and carers in research is increasingly recognised as important, yet researchers are often unclear on how to do this in practice. This is particularly evident in the field of stroke care, where there is limited information available about how to involve stroke patients and their carers in research effectively, or about the difficulties associated with this. DATA SOURCE: Experience of developing a patient and carer advisory group. REVIEW METHODS: This paper reflects on the process the authors undertook when developing a stroke patient and darer advisory group as part of a research study exploring the effect of interprofessional team working on the experiences and outcomes after stroke of patients and carers. DISCUSSION: This paper discusses the challenges and the benefits of deveong a stroke patient and carer and advisory group, and offers advice to other researchers undertaking a similar process. It aims to provide some practical suggestions that may aid researchers wishing to involve stroke patients and carers in their research. CONCLUSION: Stroke patients are likely to be older and have long-term physical disabilities or communication problems that may make their involvement in research more challenging to implement. However, with planning and consideration and the allocation of sufficient time and resources, stroke patients and their carers can be effectively involved, resulting in benefits to the research process and output, and to researchers, patients and carers. IMPLICATIONS FOR PRACTICE/RESEARCH: Pay attention to planning and the practical details of involving stroke patients and their carers in research, ensuring that meetings are arranged in an accessible venue. Use straightforward language in all forms of communication. Listen carefully to their views and perspectives and be prepared to make changes to the study and revise methods if appropriate.