Adaptation and Content Validation of a Patient-Reported Measure of Treatment Burden for use in Stroke Survivors (PETS-Stroke).

Context: Treatment burden is defined as the workload of healthcare for people with long-term conditions and the impact on wellbeing. Stroke survivors often live with considerable treatment burden because of high healthcare workload alongside deficiencies in care provision that can make navigating healthcare systems and managing health more difficult. Ways of measuring treatment burden after stroke are currently lacking. The Patient Experience with Treatment and Self-Management measure (PETS) is a 60-item patient-reported measure that was developed to measure treatment burden in a multi-morbid population. Although comprehensive, this is not a stroke-specific measure and therefore omits some burdens associated with stroke rehabilitation. Objective: Our aim was to adapt (PETS) (version 2.0, English), a patient-reported measure of treatment burden in multimorbidity, to create a stroke-specific measure (PETS-stroke), and to conduct content validity testing in a UK stroke survivor population. Study Design and analysis: PETS items were adapted to create PETS-stroke, using a previously developed conceptual model of treatment burden in stroke. Content validation involved three rounds of qualitative cognitive interviews with stroke survivors in Scotland recruited through stroke groups and primary care. Participants were asked for feedback on the importance, relevance and clarity of content of PETS-stroke. Framework analysis was used to explore responses. Setting: Community. Population studied: Stroke survivors. Instrument: Patient Experience with Treatment and Self-Management in stroke (PETS-stroke) scale. Results: Interviews (n=15) resulted in changes to the wording of instructions and items; location of items within the measure; answer options; and recall period. The final PETS-stroke tool has 34-items, spanning 13 domains. It includes 10 items unchanged from PETS, 6 new and 18 amended. Conclusions: The development of a systematic method of quantifying treatment burden from the perspective of stroke survivors will allow for the identification of patients at high risk of treatment burden and will aid the design and testing of tailored interventions aimed at lessening treatment burden.

Experiences of augmented arm rehabilitation including supported self-management after stroke: a qualitative investigation.

OBJECTIVE: To explore the experiences of stroke survivors and their carers of augmented arm rehabilitation including supported self-management in terms of its acceptability, appropriateness and relevance. DESIGN: A qualitative design, nested within a larger, multi-centre randomized controlled feasibility trial that compared augmented arm rehabilitation starting at three or nine weeks after stroke, with usual care. Semi-structured interviews were conducted with participants in both augmented arm rehabilitation groups. Normalization Process Theory was used to inform the topic guide and map the findings. Framework analysis was applied. SETTING: Interviews were conducted in stroke survivors' homes, at Glasgow Caledonian University and in hospital. PARTICIPANTS: 17 stroke survivors and five carers were interviewed after completion of augmented arm rehabilitation. INTERVENTION: Evidence-based augmented arm rehabilitation (27 additional hours over six weeks), including therapist-led sessions and supported self-management. RESULTS: Three main themes were identified: (1) acceptability of the intervention (2) supported self-management and (3) coping with the intervention. All stroke survivors coped well with the intensity of the augmented arm rehabilitation programme. The majority of stroke survivors engaged in supported self-management and implemented activities into their daily routine. However, the findings suggest that some stroke survivors (male >70 years) had difficulties with self-management, needing a higher level of support. CONCLUSION: Augmented arm rehabilitation commencing within nine weeks post stroke was reported to be well tolerated. The findings suggested that supported self-management seemed acceptable and appropriate to those who saw the relevance of the rehabilitation activities for their daily lives, and embedded them into their daily routines.

EBN perspectives: nursing issues.

EBN Perspectives brings together key issues from the commentaries in one of our nursing topic themes.

Co-creation and co-production in health service delivery: what is it and what impact can it have?

EBN engages through a range of online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

Development and evaluation of a nurse-led, tailored stroke self-management intervention.

BACKGROUND: Community nurses are well placed to promote and support stroke survivors to engage in self-management. The aim of this study was to develop a stroke self-management intervention that could be tailored towards stroke survivors' self-management needs, goals and levels of activation, in the first year post-stroke. METHODS: Mixed method study, designed in accordance with the British Medical Research Council's (MRC) guidance for the development and evaluation of complex interventions. The intervention was developed and evaluated in two phases. The intervention was underpinned by the theoretical concept of patient activation and was developed based on a review of published research on stroke self-management interventions and qualitative interviews and focus groups (phase 1). It was evaluated using qualitative interviews and focus groups with stroke survivors and stroke nurses (phase 2). Participants comprised 26 stroke survivors, between 3 and 12 months post stroke and 16 stroke nurses, from across three NHS Boards in Scotland. RESULTS: The intervention consisted of a tailored self-management action plan, incorporating an individualised assessment of stroke survivor's readiness to self-manage (using the Patient Activation Measure), goal setting and motivational interviewing. Evaluation showed that many of the individual components of the intervention were perceived as feasible and acceptable to both stroke survivors and stroke nurses. CONCLUSIONS: To our knowledge, this is the first UK study to explore the use of patient activation as a theoretical underpinning in stroke self-management research and to involve stroke survivors and stroke nurses in the design and development of a tailored, person-centred stroke self-management support intervention. The study findings provide the first step in understanding how to effectively develop and deliver stroke self-management support interventions to stroke survivors living at home in the first year following stroke. Further work is needed to develop and refine the intervention and identify how to effectively embed it into nurses' routine clinical practice.

Safety and immunogenicity of a delta inulin-adjuvanted inactivated Japanese encephalitis virus vaccine in pregnant mares and foals.

In 2011, following severe flooding in Eastern Australia, an unprecedented epidemic of equine encephalitis occurred in South-Eastern Australia, caused by Murray Valley encephalitis virus (MVEV) and a new variant strain of Kunjin virus, a subtype of West Nile virus (WNVKUN). This prompted us to assess whether a delta inulin-adjuvanted, inactivated cell culture-derived Japanese encephalitis virus (JEV) vaccine (JE-ADVAX™) could be used in horses, including pregnant mares and foals, to not only induce immunity to JEV, but also elicit cross-protective antibodies against MVEV and WNVKUN. Foals, 74-152 days old, received two injections of JE-ADVAX™. The vaccine was safe and well-tolerated and induced a strong JEV-neutralizing antibody response in all foals. MVEV and WNVKUN antibody cross-reactivity was seen in 33% and 42% of the immunized foals, respectively. JE-ADVAX™ was also safe and well-tolerated in pregnant mares and induced high JEV-neutralizing titers. The neutralizing activity was passively transferred to their foals via colostrum. Foals that acquired passive immunity to JEV via maternal antibodies then were immunized with JE-ADVAX™ at 36-83 days of age, showed evidence of maternal antibody interference with low peak antibody titers post-immunization when compared to immunized foals of JEV-naïve dams. Nevertheless, when given a single JE-ADVAX™ booster immunization as yearlings, these animals developed a rapid and robust JEV-neutralizing antibody response, indicating that they were successfully primed to JEV when immunized as foals, despite the presence of maternal antibodies. Overall, JE-ADVAX™ appears safe and well-tolerated in pregnant mares and young foals and induces protective levels of JEV neutralizing antibodies with partial cross-neutralization of MVEV and WNVKUN.

Consequences, control and appraisal: cues and barriers to engaging in self-management among people affected by colorectal cancer - a secondary analysis of qualitative data.

BACKGROUND: Little is known about peoples' self-management experiences and their desires or expectations to engage in self-management. As such, there is little understanding about individuals' perceived cues and barriers to engagement in self-management, particularly in people affected by cancer. OBJECTIVE: To understand cues and barriers to people's engagement in self-management during chemotherapy treatment for colorectal cancer. DESIGN: Secondary analysis of qualitative data from mixed methods, longitudinal study. SETTING AND PARTICIPANTS: Eleven participants undergoing treatment for colorectal cancer. Semi-structured interviews were conducted twice with each participant, at the start and end of a 6-month course of chemotherapy treatment in a Scottish cancer centre. RESULTS: Cues and barriers to engagement in self-management appeared to stem from perceptions of the impact and associated severity of side effects experiences as well as the perceptions about the efficacy of chosen self-management activities and perceptions of control in minimizing the consequences of cancer treatment. Severe, episodic or unexpected side effects coupled with perceptions of uncertainty, lack of control and lack of adequate preparation to engage in self-management were identified as key barriers to engagement. DISCUSSION AND CONCLUSION: Participants' reflection on, or appraisal of, their treatment-related experiences and personal abilities, confidence and preferences to manage the impact of these shaped their subsequent engagement in self-management. The findings highlight the importance of understanding individual's self-management experiences, perceptions, preferences, priorities and needs to help support, prepare and enable them to feel capable and confident to engage actively and effectively in self-management.

The accessibility and acceptability of self-management support interventions for men with long term conditions: a systematic review and meta-synthesis of qualitative studies.

BACKGROUND: Self-management support interventions can improve health outcomes, but their impact is limited by the numbers of people able or willing to access them. Men's attendance at existing self-management support services appears suboptimal despite their increased risk of developing many of the most serious long term conditions. The aim of this review was to determine whether current self-management support interventions are acceptable and accessible to men with long term conditions, and explore what may act as facilitators and barriers to access of interventions and support activities. METHODS: A systematic search for qualitative research was undertaken on CINAHL, EMBASE, MEDLINE, PsycINFO and Social Science Citation Index, in July 2013. Reference lists of relevant articles were also examined. Studies that used a qualitative design to explore men's experiences of, or perceptions towards, self-management support for one or more long term condition were included. Studies which focused on experiences of living with a long term condition without consideration of self-management support were excluded. Thirty-eight studies met the inclusion criteria. A meta-ethnography approach was employed to synthesise the findings. RESULTS: Four constructs associated with men's experience of, and perceptions towards, self-management support were identified: 1) need for purpose; 2) trusted environments; 3) value of peers; and 4) becoming an expert. The synthesis showed that men may feel less comfortable participating in self-management support if it is viewed as incongruous with valued aspects of their identity, particularly when activities are perceived to challenge masculine ideals associated with independence, stoicism, and control. Men may find self-management support more attractive when it is perceived as action-oriented, having a clear purpose, and offering personally meaningful information and practical strategies that can be integrated into daily life. CONCLUSIONS: Self-management support is most likely to be successful in engaging men when it is congruent with key aspects of their masculine identity. In order to overcome barriers to access and fully engage with interventions, some men may need self-management support interventions to be delivered in an environment that offers a sense of shared understanding, connectedness, and normality, and involves and/or is facilitated by men with a shared illness experience.

Undertaking qualitative health research in social virtual worlds.

AIMS: This paper discusses the methodological challenges of using the 3D social virtual world Second Life for research and offers some solutions on a range of research issues including research ethics committee approval, gaining consent, recruitment of sample, data collection and engagement with 'in - world culture'. BACKGROUND: The attraction of social virtual worlds to researchers is their ability to mimic the physical world, as they, are seen as 'places' where people have a feeling of presence (being there) and social presence (being there with others) through the use of a 'customisable' avatar (digital self-representation). Emerging research demonstrating the persuasive nature of avatars on health behaviours through virtual worlds, online games and the 3D web has increased the use of and interest in these areas for delivering health information, advice and support. However, conducting research can be challenging in a 3D world where people are represented as anonymous avatars in an environment unlike any other online media. DATA SOURCES: 25 semi-structured interviews were conducted in Second Life from September 2011-June 2012. IMPLICATIONS FOR NURSING: Nurses wishing to undertake research in social virtual worlds should spend time in-world to acquire technical skills and gain an understanding of the culture of the world. CONCLUSION: Our experience of an interview-based study in virtual worlds indicates that researchers require several virtual world technical skills to create innovative tools to recruit, gain consent and collect data and an understanding of in-world culture, language and social norms to increase the chances of successful research.

Social skills interventions for Thai adolescents with Autism Spectrum Disorder (ASD): a qualitative study of the perceptions and experiences of Thai adolescents, their caregivers and healthcare professionals.

BACKGROUND: Social skills interventions (SSIs) are effective for enhancing social skills and decreasing mental health problems in adolescents with autism spectrum disorder (ASD). However, these interventions have been designed and their effectiveness has been established in Western countries. Lack of culturally acceptable SSIs for Asian nations is a possible barrier to implementing effective and tailored interventions that address the unique requirements of ASD individuals across countries and cultures. This study aims to explore the needs and preferences of adolescents with ASD, their caregivers, and healthcare professionals (HPs) in Thailand regarding the components, delivery formats, and cultural adaptation required for an outpatient-based social skills intervention. METHODS: Qualitative data was collected via three focus groups of HPs (n = 20) and 24 paired interviews with adolescents with ASD and their caregivers from a child psychiatric hospital in Thailand. Purposive sampling was employed, and thematic analysis was used to analyse the data. RESULTS: Nine themes emerged from the data generated by HPs, and seven from adolescents with ASD and their caregivers. SSIs for Thai adolescents with ASD and their caregivers should emphasise specific social skills training and assess the abilities of adolescents as required. Incorporating various learning strategies is important. Parental involvement is essential and provides knowledge of an adolescent's symptoms and coaching skills, which are best used to support their adolescents. Cultural considerations include the need for social knowledge of Thai culture, promoting assertiveness and praising parents' abilities, implementing a programme in time to not interrupt academic achievement, and renaming a programme from social skills intervention to social communication intervention. Barriers to implementing a programme included HPs' need for specialised training and education and decreased workload. Also, the caregivers' and adolescents' stigma reduced attendance in a programme. Increased extra compensation and relocation days off are provided as policy support for staff who deliver the intervention. CONCLUSION: The results suggest that SSIs for Thai adolescents with ASD should be tailored to meet the needs for specific knowledge, skills, and parental collaboration as coaches for their adolescents. Additionally, it should incorporate Thai culture. It is necessary to consider staff knowledge, workload, and stigma in order to reduce barriers to implementation in practice.

MAGENTA: a Multinational patient survey assessing the Awareness, perceptions and unmet needs in GENetic Testing and counselling among patients with breAst cancer.

Objective: Genetic testing and counselling are critical in assessing breast cancer risk and tailoring treatment strategies. However, several barriers hinder patients from opting for genetic testing/counselling, leading to fewer than one-third of patients undergoing testing and even fewer being offered counselling. A granular understanding of these barriers is essential in overcoming them. Methods: A multinational survey developed by patient authors was conducted in 9 countries, to identify the specific local/regional barriers. The survey question pathway was individualized, based on responses to prior questions. Percentage responses to a response option were calculated based on the total number of respondents to that question. Chi-square tests were used to assess the significance of the results, if applicable. Results: The final analysis set (FAS) included 1,176 respondents, with a subset of this responding to all questions. In the FAS, 63% of respondents had undergone testing. Among those who got tested, 70% were offered testing. Among untested respondents, only 40% were offered the test but eventually did not get tested. In the tested population, 44% received counselling, which was significantly higher than 7% (p<0.00001) in the untested group. Among those reporting on awareness, 71% reported awareness level between 'very low' and 'moderate' prior to cancer diagnosis. Most respondents (71%) agreed that all breast cancer patients should undergo testing before treatment initiation. However, Asian patients were less likely to endorse this view compared to respondents from other regions (25% vs ≥50%; p<0.00001). A higher proportion of tested respondents were 'very willing' to get their family members tested (44%) versus untested respondents (11%), with relatively higher willingness among Australian (77%) and Russian respondents (56%), the regional variation being statistically significant (p<0.00001). Conclusions: Critical gaps remain in the access, awareness and perceived value of genetic testing and counselling, with regional variance or difference between the tested and untested groups. Most patients are not offered counselling, which may be associated with the low uptake of testing. Strategic action is needed to drive policy-shaping and improve access to testing and counselling, including raising patient awareness and improving patient experience for better treatment outcomes.

Investigating the Implementation of Community-Based Stroke Telerehabilitation in England; A Realist Synthesis Study Protocol.

Telerehabilitation (TR) shows promise as a method of remote service delivery, yet there is little guidance to inform implementation in the context of the National Health Service (NHS) in England. This paper presents the protocol for a realist synthesis study aiming to investigate how TR can be implemented to support the provision of high-quality, equitable community-based stroke rehabilitation, and under what conditions. Using a realist approach, we will synthesise information from (1) an evidence review, (2) qualitative interviews with clinicians (n ≤ 30), and patient-family carer dyads (n ≤ 60) from three purposively selected community stroke rehabilitation services in England. Working groups including rehabilitation professionals, service-users and policy-makers will co-develop actionable recommendations. Insights from the review and the interviews will be synthesised to test and refine programme theories that explain how TR works and for whom in clinical practice, and draw key messages for service implementation. This protocol highlights the need to improve our understanding of TR implementation in the context of multidisciplinary, community-based stroke service provision. We suggest the use of a realist methodology and co-production to inform evidence-based recommendations that consider the needs and priorities of clinicians and people affected by stroke.

Systematic review of reviews of behavioural HIV prevention interventions among men who have sex with men.

Men who have sex with men (MSM) remain one of the groups most at risk of HIV. The growing evidence-base on behavioural HIV prevention interventions includes systematic review-level evidence, including reviews specific to MSM populations. Here, we provide an up-to-date review of these systematic reviews in which we examined the effectiveness of behavioural HIV prevention interventions among MSM. A systematic search of electronic databases, including MEDLINE, EMBASE, Cochrane Database of Systematic Reviews, PsycInfo, from January 2000 to October 2010, along with hand searches of the reference lists of retrieved documents were conducted. Inclusion criteria included: study design limited to systematic reviews and meta-analyses; methodological quality; and review to focus on MSM and behavioural interventions. A narrative synthesis was conducted. Across the four included meta-analyses (102 studies; 52 independent studies), there was strong and consistent evidence for group- and community-level interventions being associated with reductions in UAI (27-30% and 30%, respectively) and increases in condom use amongst MSM, but inconsistent evidence for the effectiveness of individual-level interventions. Skills-building, trained professionals delivering the training and theory-based interventions were also consistently effective. The inherent limitations of the review of review method within a changing health domain meant it was difficult to develop contemporary and directly transferable guidance to HIV prevention policy development. However, the analysis does demonstrate a need for a step change in the kinds of data that are collated in the development of future systematic reviews of HIV prevention interventions among MSM.

What is important in supporting self-management in community stroke rehabilitation? A Q methodology study.

PURPOSE: Supported self-management (SSM) is an important part of adapting to life after stroke however it is a complex concept. It is unclear what SSM in stroke consists of or how stroke survivors, families, and clinicians can most effectively work together to support person-centred self-management. In this study, we aimed to explore what was most important in making SSM work in community stroke rehabilitation. METHODS: We conducted a Q-methodology study with stroke survivors (n = 20), community-based stroke clinicians (n = 20), and team managers (n = 8) across four health boards in Scotland, United Kingdom. Participants ranked 32 statements according to their importance in making SSM work. Factor analysis was used to identify shared viewpoints. RESULTS: We identified four viewpoints: (i) A person-centred approach to build self-confidence and self-worth; (ii) Feeling heard, understood, and supported by everybody; (iii) Preparation of appropriate resources; and (iv) Right thing, right place, right time for the individual. Important across all viewpoints were: a trusting supportive relationship; working in partnership; focusing on meaningful goals; and building self-confidence. CONCLUSIONS: Differing views exist on what is most important in SSM. These views could be used to inform quality improvement strategies to support the delivery of SSM that considers the preferences of stroke survivors. IMPLICATIONS FOR REHABILITATIONClinicians should be aware of their own viewpoint of supported self-management and consider how their perspective may differ from stroke survivors' and colleagues' perspectives of what's important to support self-management.Working in partnership with stroke survivors plus developing a trusting and supportive relationship with them are core components of supporting self-management in the longer term after stroke.Building a sense of self-worth and self-confidence, a focus on meaningful goals, training and support for staff, and tailoring support to people's needs at the right time are important considerations for supporting longer-term engagement in self-management.

Supporting stroke survivors to meet their personal rehabilitation needs in community-based arm rehabilitation: development of initial programme theories to explore what may work for whom, how and under what circumstances.

Objective: This study explored what worked for whom, how and under what circumstances in a community-based augmented arm rehabilitation programme that was designed to enable stroke survivors to meet their personal rehabilitation needs. Design: A mixed methods realist-informed study of data from a randomised controlled feasibility trial, comparing augmented arm rehabilitation after stroke with usual care. The analysis was designed to develop initial programme theories and refine these through triangulation of qualitative and quantitative trial data. Participants with a confirmed stroke diagnosis and stroke-related arm impairment were recruited from five health boards in Scotland. Only data from participants in the augmented group were analysed. The augmented intervention comprised evidence-based arm rehabilitation (27 additional hours over 6 weeks) including self-managed practice, and focused on individual rehabilitation needs identified through the Canadian Occupational Performance Measure (COPM). The COPM indicated to which extent rehabilitation needs were met following the intervention, the Action Research Arm Test provided data on changes in arm function, and qualitative interviews provided information about the context and potential mechanisms of action. Findings: Seventeen stroke survivors (11 males, age range 40-84 years, NIHSS median (IQR) 6 (8)) were included. Median (IQR) COPM Performance and Satisfaction scores (min.1-max.10) improved from pre-intervention 2 (5) to post-intervention 5 (7). Findings suggested that meeting rehabilitation needs was facilitated by strengthening participants' sense of intrinsic motivation (through grounding exercises in everyday activities linked to valued life roles, and enabling them to overcome barriers to self-managed practice), and via therapeutic relationships (through trust and expertise, shared decision-making, encouragement and emotional support). Collectively, these mechanisms enabled stroke survivors to build confidence and gain mastery experience necessary to engage in new self-managed practice routines. Conclusion: This realist-informed study enabled the development of initial programme theories to explain how and in what circumstances the augmented arm rehabilitation intervention may have enabled participants to meet their personal rehabilitation needs. Encouraging participants' sense of intrinsic motivation and building therapeutic relationships appeared instrumental. These initial programme theories require further testing, refinement, and integration with the wider literature.

Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors: the patient experience with treatment and self-management in stroke (PETS-stroke) measure.

PURPOSE: Stroke survivors often live with significant treatment burden yet our ability to examine this is limited by a lack of validated measurement instruments. We aimed to adapt the 60-item, 12-domain Patient Experience with Treatment and Self-Management (PETS) (version 2.0, English) patient-reported measure to create a stroke-specific measure (PETS-stroke) and to conduct content validity testing with stroke survivors. MATERIALS AND METHODS: Step 1 - Adaptation of PETS to create PETS-stroke: a conceptual model of treatment burden in stroke was utilised to amend, remove or add items. Step 2 - Content validation: Fifteen stroke survivors in Scotland were recruited through stroke groups and primary care. Three rounds of five cognitive interviews were audio recorded and transcribed. Framework analysis was used to explore importance/relevance/clarity of PETS-stroke content. COSMIN reporting guidelines were followed. RESULTS: The adapted PETS-stroke had 34 items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Interviews (n = 15) resulted in further changes to 19 items, including: instructions; wording; item location; answer options; and recall period. CONCLUSIONS: PETS-stroke has content that is relevant, meaningful and comprehensible to stroke survivors. Content validity and reliability testing are now required. The validated tool will aid testing of tailored interventions to lessen treatment burden.IMPLICATIONS FOR REHABILITATIONTreatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists.We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke).The items in PETS-stroke are relevant and meaningful to people with stroke.Further testing will examine construct validity, reliability, and useability.This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden.