Flourishing together: research protocol for developing methods to better include disabled people's knowledge in health policy development.

BACKGROUND: To positively impact the social determinants of health, disabled people need to contribute to policy planning and programme development. However, they report barriers to engaging meaningfully in consultation processes. Additionally, their recommendations may not be articulated in ways that policy planners can readily use. This gap contributes to health outcome inequities. Participatory co-production methods have the potential to improve policy responsiveness. This research will use innovative methods to generate tools for co-producing knowledge in health-related policy areas, empowering disabled people to articulate experience, expertise and insights promoting equitable health policy and programme development within Aotearoa New Zealand. To develop these methods, as an exemplar, we will partner with both tangata whaikaha Maori and disabled people to co-produce policy recommendations around housing and home (kainga)-developing a nuanced understanding of the contexts in which disabled people can access and maintain kainga meeting their needs and aspirations. METHODS: Participatory co-production methods with disabled people, embedded within a realist methodological approach, will develop theories on how best to co-produce and effectively articulate knowledge to address equitable health-related policy and programme development-considering what works for whom under what conditions. Theory-building workshops (Phase 1) and qualitative surveys (Phase 2) will explore contexts and resources (i.e., at individual, social and environmental levels) supporting them to access and maintain kainga that best meets their needs and aspirations. In Phase 3, a realist review with embedded co-production workshops will synthesise evidence and co-produce knowledge from published literature and non-published reports. Finally, in Phase 4, co-produced knowledge from all phases will be synthesised to develop two key research outputs: housing policy recommendations and innovative co-production methods and tools empowering disabled people to create, synthesise and articulate knowledge to planners of health-related policy. DISCUSSION: This research will develop participatory co-production methods and tools to support future creation, synthesis and articulation of the knowledge and experiences of disabled people, contributing to policies that positively impact their social determinants of health.

Implementation in rehabilitation: a roadmap for practitioners and researchers.

Purpose: Despite growth in rehabilitation research, implementing research findings into rehabilitation practice has been slow. This creates inequities for patients and is an ethical issue. However, methods to investigate and facilitate evidence implementation are being developed. This paper aims to make these methods relevant and accessible for rehabilitation researchers and practitioners.Methods: Rehabilitation practice is varied and complex and occurs within multilevel healthcare systems. Using a "road map" analogy, we describe how implementation concepts and theories can inform implementation strategies in rehabilitation. The roadmap involves a staged journey that considers: the nature of evidence; context for implementation; navigation tools for implementation; strategies to facilitate implementation; evaluation of implementation outcomes; and sustainability of implementation. We have developed a model to illustrate the journey, and four case studies exemplify implementation stages in rehabilitation settings.Results and Conclusions: Effective implementation strategies for the complex world of rehabilitation are urgently required. The journey we describe unpacks that complexity to provide a template for effective implementation, to facilitate translation of the growing evidence base in rehabilitation into improved patient outcomes. It emphasizes the importance of understanding context and application of relevant theory, and highlights areas which should be targeted in new implementation research in rehabilitation.Implications for rehabilitationEffective implementation of research evidence into rehabilitation practice has many interconnected steps and a roadmap analogy is helpful in defining them.Understanding context for implementation is critically important and using theory can facilitate development of understanding.Research methods for implementation in rehabilitation should be carefully selected and outcomes should evaluate implementation success as well as clinical change.Sustainability requires regular revisiting of the interconnected steps.

Development of a self-guided web-based exercise intervention (SPIN) to treat shoulder pain in people living with spinal cord injury: protocol of a mixed methods study.

INTRODUCTION: Chronic shoulder pain is common after spinal cord injury (SCI) and limits community mobility. This leads to loss of independence and reduced quality of life. Evidence suggests that exercises can help reduce shoulder pain. However, cost, expertise and transport barriers frequently limit access to treatment services. The objective of this study is to develop an evidence-based, acceptable, usable and persuasive self-guided web-based exercise intervention to treat shoulder pain in people living with SCI. METHODS AND ANALYSIS: An iterative and phased person-based approach (PBA) will capture users' perspectives on usability and acceptability to develop guiding principles that will shape the design of the intervention. The intervention will be based on key elements identified through participant input and from evidence identified through systematic and narrative reviews, to ensure the intervention addresses participants' needs and increase the likelihood of uptake. The prototype will be iteratively refined through focus groups and think-aloud sessions. Review data will be synthesised drawing on systematic and narrative review conventions. Qualitative data will be analysed using conventional content analysis (planning phase) and directed content analysis (development phase) to inform intervention design and refinement. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Auckland University of Technology Ethics Committee (AUTEC) in Auckland, New Zealand. The results of the study will be published in a peer-reviewed journal and presented at relevant national and international conferences. A summary of findings will be presented to key stakeholder groups. We will progress to a definitive trial should the findings from this intervention development study indicate the intervention is acceptable and usable.

Who is in control? Clinicians' view on their role in self-management approaches: a qualitative metasynthesis.

OBJECTIVE: To explore clinician perceptions of involvement in delivery of self-management approaches. SETTING: All healthcare settings. DESIGN: EBSCO, Scopus and AMED databases were searched, in July 2013, for peer-reviewed studies in English reporting original qualitative data concerning perceptions of clinicians regarding their involvement in or integration of a self-management approach. Of 1930 studies identified, 1889 did not meet the inclusion criteria. Full text of 41 studies were reviewed by two independent reviewers; 14 papers were included for metasynthesis. Findings and discussion sections were imported into Nvivo-10 and coded line-by-line. Codes were organised into descriptive themes and cross-checked against original sources to check interpretation, and refined iteratively until findings represented an agreed understanding. Studies were appraised for quality. RESULTS: Delivering self-management in practice appeared to be a complex process for many clinicians. The issue of 'control' arose in all studies, both in the qualitative data and authors' interpretations. The first theme: Who is in control?--represented ways clinicians talked of exercising control over patients and the control they expected patients to have over their condition. The second theme: Changing clinician views--reflected what appeared to be an essential transformation of practice experienced by some clinicians in the process of integrating self-management approaches into the practice. A range of challenges associated with shifting towards a self-management approach were reflected in the third theme, Overcoming challenges to change. Tensions appeared to exist around forming partnerships with patients. Strategies found helpful in the process of change included: dedicating time to practice reciprocity in communication style, peer support and self-reflection. CONCLUSIONS: A consistent finding across studies is that 'control' is a key feature of how self-management is viewed by clinicians. They described challenges associated with the paradigm shift required to share or let go of control. Future research should identify whether strategies described by clinicians are key to successful self-management.

Bridging the gap between goal intentions and actions: a systematic review in patient populations.

PURPOSE: To evaluate the evidence for the effectiveness of if-then implementation intentions (if-then plans) in adult patient populations. Outcomes of interest included adherence, goal pursuit and physical health outcomes. METHODS: Keywords were used to search electronic databases without date or language restrictions (up to 30 April 2014). Studies were included if they (1) concerned a patient population; (2) used if-then plans as a sole intervention or as part of treatment, therapy or rehabilitation; (3) if they were randomised controlled trials. The PEDro scale was used to evaluate study quality. Guidance as set out by the Cochrane Collaboration was used. Two reviewers independently extracted data, discrepancies were discussed and if required referred to a third reviewer. RESULTS: In total, 18 of the 2141 articles were identified as potentially relevant and four studies of people with epilepsy, chronic back pain, stroke and obesity met the inclusion criteria. People who form if-then plans achieved better outcomes on epilepsy and stroke medication adherence and physical capacity than controls. CONCLUSIONS: Of the four studies that used an if-then plan, only one (people with epilepsy) looked at the intervention as a stand-alone strategy. Further research needs to explore if this simple approach improves rehabilitation outcomes and is a helpful and feasible strategy for people experiencing disabilities. Implications for Rehabilitation Steps involved in achieving goals, such as doing exercises or completing other goal related tasks, can be compromised for people with chronic health conditions particularly resulting from difficulties in self-regulating behaviour. If-then plans are implementation intention tools aimed at supporting people to deal more effectively with self-regulatory problems that might undermine goal striving and goal attainment, and have been found to be effective in health promotion and health behaviour change. This systematic literature review identified four studies completed with patient populations, with three demonstrating effectiveness. If-then plans provide an opportunity for clinicians to develop better ways of implementing rehabilitation.

Living well with disability: needs, values and competing factors.

BACKGROUND: Obesity is more prevalent for disabled people (estimated as being between 27-62%) compared to the general population (17-22%). Disabled people are more likely to report poorer general health and acquire a range of obesity-related secondary conditions. Although there are many physical activity and nutrition initiatives aimed at obesity prevention, little is known about whether these options are relevant and accessible for disabled people. The Living Well Study aimed to better understand the issues faced by disabled people when engaging in physical activity and healthy eating. METHODS: The study drew on a participatory action research design involving key stakeholders. There were two core cyclical phases (A and B), in which data collection was followed by a period of analysis, reflection and refinement. Focus groups and interviews were held with individuals who experience a range of disabilities, family members, service providers and representatives from disability advocacy groups. We sought to explore the importance and meaning of physical activity and healthy eating and factors that influenced engagement in these. Data in phase A were analysed using conventional content analysis drawing on constant comparative methods to identify themes of importance. In phase B, data analysis occurred alongside data collection, using a structured template to summarise participants' agreement or disagreement with the draft themes and recommendations, until the themes and recommendations were refined based on participants' corroboration. RESULTS: 146 participants aged between 10-69 years, from both rural and urban areas and of different cultural backgrounds participated. Seven interconnecting themes that related to engagement in living well behaviours emerged with a wide range of external factors (such as people, knowledge, time, cost, identity and the environment) impacting on living well options. The central theme - It depends: needs, values and competing factors - emphasised the complexity faced by a disabled person when balancing the external factors with their own personal values and needs in order to arrive at a decision to engage in healthy living behaviours. CONCLUSIONS: Although disabled people experience similar issues when participating in healthy living behaviours as those living without disability, additional factors need to be addressed in order to improve opportunities for 'living well' in these populations. This information has implications for health professionals to target the relevance and content of interventions.

Exploring the facilitators and barriers to engagement in physical activity for people with multiple sclerosis.

PURPOSE: To explore the relationship that cognitive behavioural and other previously identified variables have with physical activity engagement in people with multiple sclerosis (MS). METHODS: This study adopted a cross-sectional questionnaire design. Participants were 282 individuals with MS. Outcome measures included the Physical Activity Disability Survey--Revised, Cognitive and Behavioural Responses to Symptoms Questionnaire, Barriers to Health Promoting Activities for Disabled Persons Scale, Multiple Sclerosis Self-efficacy Scale, Self-Efficacy for Chronic Diseases Scales and Chalder Fatigue Questionnaire. RESULTS: Multivariable stepwise regression analyses found that greater self-efficacy, greater reported mental fatigue and lower number of perceived barriers to physical activity accounted for a significant proportion of variance in physical activity behaviour, over that accounted for by illness-related variables. Although fear-avoidance beliefs accounted for a significant proportion of variance in the initial analyses, its effect was explained by other factors in the final multivariable analyses. CONCLUSIONS: Self-efficacy, mental fatigue and perceived barriers to physical activity are potentially modifiable variables which could be incorporated into interventions designed to improve physical activity engagement. Future research should explore whether a measurement tool tailored to capture beliefs about physical activity identified by people with MS would better predict participation in physical activity.

Interferon beta, PHARMAC, and political directives: in the best interests of people with multiple sclerosis?

Interferon beta is prescribed for people with multiple sclerosis in an attempt to reduce the number of relapses occurring and to slow progression of disability. The current cost of the subsidy provided by PHARMAC for this drug is over NZ$5 million annually and is likely to rise. The history of funding decisions for interferon beta, the evidence for cost-effectiveness of the drug, and other possible ways of improving outcomes for people with multiple sclerosis other than this particular pharmaceutical subsidy are considered in this article. The authors conclude that the evidence for cost-effectiveness of interferon beta is not compelling, and other options need to be considered in an integrated package of health services for all people with MS in New Zealand.