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.

Development of a Programme Theory for Early Intervention Vocational Rehabilitation: A Realist Literature Review.

Purpose Little is currently known about how early intervention vocational rehabilitation (EIVR) works for people with newly acquired neurological conditions such as traumatic brain injury, acquired brain injury and spinal cord injury. This study aims, from a realist framework, to identify relevant literature and develop an initial programme theory to understand how EIVR might work for people experiencing acquired neurological disability. Realist reviews are ideally placed to address the identified knowledge gap as they assist in gaining a deeper understanding of how the intervention works, for whom it works best, and the contexts that promote the activation of desired outcomes. Methods We used a seven-step iterative process to synthesise literature using a realist approach. The steps included: development of initial programme theory, literature search, article selection, extracting and data organising, synthesis of evidence and programme theory refinement. We performed a literature search using the following databases: Cinahl, Embase, EMcare, Medline, PsychInfo and Scopus. Articles were selected if they contributed to the knowledge describing what is EIVR and how it works in newly acquired neurological conditions. Data were extracted and synthesised to develop a programme theory for EIVR. Results Following screening of 448 references, 37 documents were eligible for data extraction. We developed a refined programme theory of EIVR consisting of three contexts (prioritisation of exploring work options, return to work discussed as an option, and workplace support), nine mechanisms (ensuring rehabilitation teams' culture, fostering hope, exploring options, optimising self-efficacy, maintaining worker identity, staying connected, setting goals, engaging employer, and flexing roles) and three outcomes (confidence in ability to work, psychological adjustment, and engagement in solution focussed options). Conclusions This appears to be the first paper to explore how EIVR works, for whom and in what situations. We have produced a programme theory that may provide an initial understanding of EIVR following acquired neurological conditions.

Designing studies and reviews to produce informative, trustworthy evidence about complex interventions in rehabilitation: a narrative review and commentary.

According to Cochrane Rehabilitation's recently published definition for research purposes, rehabilitation is inherently complex. Rehabilitation teams frequently implement multiple strategies concurrently, draw on input from a range of different health professionals, target multiple outcomes, and personalize therapeutic plans. The success of rehabilitation lies not only in the specific therapies employed, but also in how they are delivered, when they are delivered, and the capability and willingness of patients to engage in them. In 2021, the UK Medical Research Council (MRC) and the National Institute of Health Research (NIHR) released the second major update of its framework for developing and evaluating complex interventions. This framework has direct relevance to the development and implementation of evidence-based practice in the field of rehabilitation. While previous iterations of this framework positioned complex interventions as anything that involved multiple components, multiple people, multiple settings, multiple targets of effect, and behavior change, this latest framework expanded on this concept of complexity to also include the characteristics and influence of the context in which interventions occur. The revised MRC-NIHR framework presents complex intervention research as comprising the following four inter-related and overlapping phases: 1) development or identification of the intervention; 2) feasibility; 3) evaluation; and 4) implementation, with different methods and tools required to address each of these phases. This paper provides an overview of the MRC-NIHR framework and its application to rehabilitation, with examples from past research. Rehabilitation researchers are encouraged to learn about the MRC-NIHR framework and its application. Funders of rehabilitation research are also encouraged to place greater emphasis on supporting studies that involve the right design to address key uncertainties in rehabilitation clinical practice. This will require investment into a broader range of types of research than simply individual-level randomized controlled trials. Rehabilitation research can both learn from and contribute to future iterations of the MRC-NIHR framework as it is an excellent environment for exploring complexity in clinical practice.

Early Opportunities to Explore Occupational Identity Change: Qualitative Study of Return-To-Work Experiences After Stroke.

BACKGROUND: Rates of return-to-work after stroke are low, yet work is known to positively impact people's wellbeing and overall health outcomes. OBJECTIVE: To understand return-to-work trajectories, barriers encountered, and resources that may be used to better support participants during early recovery and rehabilitation. PARTICIPANTS: The experiences of 31 participants (aged 25-76 years) who had or had not returned to work after stroke were explored. METHODS: Interview data were analysed using reflexive thematic analysis methods within a broader realist research approach. RESULTS: Participants identified an early need to explore a changed and changing occupational identity within a range of affirming environments, thereby ascertaining their return-to-work options early after stroke. The results articulate resources participants identified as most important for their occupational explorations. Theme 1 provides an overview of opportunities participants found helpful when exploring work options, while theme 2 explores fundamental principles for ensuring the provided opportunities were perceived as beneficial. Finally, theme 3 provides an overview of prioritized return-to-work service characteristics. CONCLUSION: The range and severity of impairments experienced by people following stroke are broad, and therefore their return-to-work needs are diverse. However, all participants, irrespective of impairment, highlighted the need for early opportunities to explore their changed and changing occupational identity.

Access to community support workers during hospital admission for people with spinal cord injury: a pilot study.

STUDY DESIGN: A descriptive qualitative study. OBJECTIVES: To evaluate a pilot project enabling people with spinal cord injury (SCI) to have their support workers accompany them into a non-SCI specialist/public hospital (excluding ICU) to perform selected care. SETTING: The study was conducted in New Zealand. METHODS: Interviews and focus groups with people with SCI, support workers, care agency staff, and hospital staff who participated in the pilot project. RESULTS: Twenty-five individuals participated in the study. Two themes captured participants' experiences of the pilot: 'Maintaining individualised care' and 'Role, tasks and responsibilities. Support workers were described as knowledgeable about SCI care needs and being better positioned to provide individualised care for people with SCI than general nursing staff. Participants with SCI felt less anxious having a support worker with them, and perceived less risk of acquiring secondary health complications during the hospital admission. Good communications is important to ensure there is a shared understanding of the role and responsibilities of having an unregistered support worker in the hospital environment. CONCLUSIONS: Having their regular support worker during admission to public hospital improved the SCI-specific care received. Support workers reduced the demand on hospital nursing staff who did not always have the time or specialist SCI knowledge to provide individualised care. People with SCI may be more likely to access medical assistance earlier and not defer hospital admissions if they can have support workers accompany them into hospital.

Early vocational rehabilitation for people with spinal cord injury: a research protocol using realist synthesis and interviews to understand how and why it works.

INTRODUCTION: Return to work after spinal cord injury (SCI) is linked to well-being and better physical and mental health outcomes. In New Zealand, work rates after SCI are lower than the general population. Vocational rehabilitation is one method of supporting return to work. Although the best model has not been determined, there is evidence supporting early intervention. However, most vocational rehabilitation research focuses on return to work outcomes without considering why vocational rehabilitation works, for whom and under what circumstances. Given this knowledge gap, we detail a realist synthesis protocol aiming to explain how contextual factors trigger relevant mechanisms to facilitate return to work after SCI. METHODS AND ANALYSIS: This study will use a realist synthesis approach, following Realist And MEta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. First, we will undertake a realist review of existing published and grey literature. Second, to assist with theoretical conceptualisation, we will interview people with SCI who have received vocational rehabilitation. Finally, we will survey people with SCI who received early vocational rehabilitation for theoretical testing and refinement. ETHICS AND DISSEMINATION: University of Otago Ethics Committee (Reference H19/170) has been obtained. A knowledge translation event will address issues relevant to wider implementation of the intervention and study findings. Findings will be also be disseminated through peer reviewed journals, conference presentations and formal reports.

Implementing a 'Safe Recovery' fall prevention program: Refining intervention theory using realist methods.

OBJECTIVES: This research aimed to explain how the Safe Recovery Programme (SRP) may best work to reduce falls in older adults undergoing rehabilitation in four wards in an older person's health and rehabilitation service. METHODS: Qualitative realist methods were used, including surveys completed by patients and staff, and qualitative interviews or focus groups exploring views of patients, ward staff and SRP educators. RESULTS: Emphasising different types of information for patients with different pre-existing understandings may facilitate their responses to SRP messaging. Consistency and coherence of SRP messaging within ward routines varied in response to staff SRP training and ongoing feedback mechanisms from SRP educators. CONCLUSIONS: Tailored individualised approaches for patients with specific characteristics may lead to patients being less likely to engage in risky behaviours. Staff training and processes for facilitating ongoing feedback between patients, SRP and ward staff are required to ensure consistency and coherence of SRP messaging.

Evaluating the effectiveness of therapeutic horse riding for children and young people experiencing disability: a single-case experimental design study.

Purpose: Therapeutic horse riding aims to improve the health of children and young people experiencing disability; however, its benefits across a range of health domains, particularly the impact on participation outcomes, are not well known. This research evaluated to what extent there was a change in riders balance, functional performance, social responsiveness, quality of life and participation outcomes as a result of therapeutic horse riding.Methods: A multiple-baseline across participants (n = 12) single-case experimental design, with randomly allocated baseline phase lengths, quantitatively evaluated how riders responded to a 20-week intervention.Results: Social participation outcomes measured using the Canadian Occupational Performance Measure demonstrated the most consistent positive between-phase differences (performance ES = 1.20, 95% CI [0.82, 1.63]; satisfaction ES = 1.11, 95% CI [0.73, 1.55]). A causal relationship was seen in three riders, but improvements only reached clinical significance for two riders when accounting for phase data trends. No significant outcome patterns were found comparing riders with principally physical impairments to those with principally psychosocial impairments.Conclusions: Being involved in therapeutic horse riding may improve rider's social participation in home, school and community settings. We postulate that rider self-concept development may be a mechanism of treatment effect leading to participation-level changes.Implications for rehabilitationSocial participation was the health outcome demonstrating the most consistent change following therapeutic horse riding, regardless of rider impairment.Therapeutic horse riding can improve social participation in settings beyond the riding arena.Greater intervention tailoring based on rider responses may enhance therapeutic horse riding intervention effects.

Compared to what? An analysis of the management of control groups in Cochrane reviews in neurorehabilitation.

BACKGROUND: Control groups are used in clinical trials to increase confidence that any improvements in patient outcomes are due the therapy under investigation and not to other factors. The reported effect size of any intervention is estimated from differences in outcomes achieved by intervention participants in comparison to control participants. Clinical heterogeneity in control groups across different studies can make the pooling of data from these studies in one meta-analysis questionable or reduce certainty in their results. AIM: The aim of this study was to evaluate: 1) the variability in the types of control groups used in studies that have been pooled in meta-analyses in Cochrane reviews on neurorehabilitation interventions; and 2) how authors of Cochrane reviews on neurorehabilitation interventions have taken information about control groups into consideration when making decisions to undertake meta-analyses and interpreting their results. METHODS: We searched the Cochrane library for reviews on neurorehabilitation interventions published between 2012 and 2016 that included at least one meta-analysis involving a control group. We extracted data from included reviews on the review characteristics, the characteristics of the included meta-analyses, and any information on how the review authors managed control groups in the conduct and interpretation of meta-analyses. RESULTS: The 43 included reviews pooled data from 358 clinical trials, with an average of 5±5 clinical trials (range: 2-45) contributing to each meta-analysis. The majority of clinical trials involved a control group containing active treatments (61.7%; 221 of 358), often "treatment as usual" controls without any additional placebo or sham intervention. Over half (58.1%; 25 of 43) of the included meta-analyses involved pooling of data from studies with a mix of different types of control groups, with an additional 25.6% pooling data from studies where control participants had received a range of different active treatments. The influence of different control groups on the summary results from meta-analyses was not analyzed in 21 (48.8%) of the included reviews. CONCLUSIONS: Further work is needed to develop: standardized ways to categorize control conditions in rehabilitation trials; more guidance on reporting criteria for control groups in rehabilitation trials; and agreed methods for managing different control types in one meta-analysis.

Optimizing the real-world impact of rehabilitation reviews: increasing the relevance and usability of systematic reviews in rehabilitation.

BACKGROUND: Despite a growing portfolio of rehabilitation reviews, uptake of review findings into practice remains slow, with review findings perceived to be lacking in relevance and usability for stakeholders. Key aspects of review design, production and dissemination have been identified to contribute to this knowledge translation (KT) gap. AIM: The aim of this study is to identify strategies relevant to rehabilitation review design, production and dissemination which have the potential to optimize uptake of review findings into practice. RESULTS: Two strategies are discussed, drawing on case examples of existing rehabilitation reviews, including: 1) involving stakeholders in review design, production and dissemination; and 2) moving towards theory-based, mixed methods review design. The merits of these strategies are discussed with reference to the unique and specific characteristics of the rehabilitation context, where there is complexity inherent in the multiple interacting components across population, intervention, context and implementation processes. CONCLUSIONS: Moving towards theory-based, mixed methods reviews which involve stakeholders may be a critical first step in supporting uptake of review findings into rehabilitation practice. Doing so also has the potential to support advances in knowledge and practice in rehabilitation through theory development, as well as creating the context for evidence-based practice.

Using cannabis for pain management after spinal cord injury: a qualitative study.

Study design: A descriptive qualitative study. Objectives: To explore why individuals with spinal cord injury (SCI) choose to use cannabis to manage their pain and their experiences in doing so. Setting: Community-dwelling adults with SCI in New Zealand. Methods: Semi-structured interviews were conducted with individuals who had a SCI, experienced pain, and self-reported use of cannabis to manage their pain. Interviews were recorded, transcribed, and subject to thematic analysis. Results: Eight individuals participated in this study. We interpreted six themes that captured the participants' perspectives regarding their choice to, and perceptions of, using cannabis to manage SCI pain. Participants were motivated to use cannabis when other pain management strategies had been ineffective and were well-informed, knowledgeable cannabis consumers. Participants reported cannabis reduced their pain quickly and enabled them to engage in activities of daily living and participate in life roles without the drowsiness of traditional prescribed pain medication. Despite the positive aspects, participants were concerned about the irregularity of supply and inconsistent dosage. Conclusions: Findings show that cannabis is used to reduce pain after SCI and enable increased community participation. Findings suggest that future studies examining the efficacy of cannabinoids in managing pain include function and participation outcome measures rather than solely focusing on measuring pain intensity. Focusing on meaningful outcomes may contribute to a greater understanding of the experiences of people with SCI.