Using the consolidated Framework for Implementation Research to integrate innovation recipients' perspectives into the implementation of a digital version of the spinal cord injury health maintenance tool: a qualitative analysis.

BACKGROUND: Despite advances in managing secondary health complications after spinal cord injury (SCI), challenges remain in developing targeted community health strategies. In response, the SCI Health Maintenance Tool (SCI-HMT) was developed between 2018 and 2023 in NSW, Australia to support people with SCI and their general practitioners (GPs) to promote better community self-management. Successful implementation of innovations such as the SCI-HMT are determined by a range of contextual factors, including the perspectives of the innovation recipients for whom the innovation is intended to benefit, who are rarely included in the implementation process. During the digitizing of the booklet version of the SCI-HMT into a website and App, we used the Consolidated Framework for Implementation Research (CFIR) as a tool to guide collection and analysis of qualitative data from a range of innovation recipients to promote equity and to inform actionable findings designed to improve the implementation of the SCI-HMT. METHODS: Data from twenty-three innovation recipients in the development phase of the SCI-HMT were coded to the five CFIR domains to inform a semi-structured interview guide. This interview guide was used to prospectively explore the barriers and facilitators to planned implementation of the digital SCI-HMT with six health professionals and four people with SCI. A team including researchers and innovation recipients then interpreted these data to produce a reflective statement matched to each domain. Each reflective statement prefaced an actionable finding, defined as alterations that can be made to a program to improve its adoption into practice. RESULTS: Five reflective statements synthesizing all participant data and linked to an actionable finding to improve the implementation plan were created. Using the CFIR to guide our research emphasized how partnership is the key theme connecting all implementation facilitators, for example ensuring that the tone, scope, content and presentation of the SCI-HMT balanced the needs of innovation recipients alongside the provision of evidence-based clinical information. CONCLUSIONS: Understanding recipient perspectives is an essential contextual factor to consider when developing implementation strategies for healthcare innovations. The revised CFIR provided an effective, systematic method to understand, integrate and value recipient perspectives in the development of an implementation strategy for the SCI-HMT. TRIAL REGISTRATION: N/A.

Disrupted mana and systemic abdication: Maori qualitative experiences accessing healthcare in the 12 years post-injury.

BACKGROUND: Maori have been found to experience marked health inequities compared to non-Maori, including for injury. Accessing healthcare services post-injury can improve outcomes; however, longer-term experiences of healthcare access for injured Maori are unknown. This paper reports on data from the longitudinal Prospective Outcomes of Injury Study - 10 year follow up (POIS-10) Maori study in Aotearoa/New Zealand (NZ), to qualitatively understand Maori experiences of accessing injury-related healthcare services long-term. METHODS: Follow-up telephone interviews were conducted with 305 POIS-10 Maori participants, who were injured and recruited 12-years earlier, experiencing a range of injury types and severities. Free text responses about trouble accessing injury-related health services were thematically analysed. RESULTS: Sixty-one participants (20%) reported trouble accessing injury-related health services and provided free text responses. Three related themes describing participants' experiences were connected by the overarching concept that participants were engaging with a system that was not operating in a way it was intended to work: 1) Competing responsibilities and commitments encapsulates practical barriers to accessing services, such as a lack of time and having to prioritise other responsibilities such as work or whanau (family); 2) Disrupted mana refers to the feelings of personal disempowerment through, for example, receiving limited support, care or information tailored to participants' circumstances and is a consequence of patients contending with the practical barriers to accessing services; and 3) Systemic abdication highlights systemic barriers including conflicting information regarding diagnoses and treatment plans, and healthcare provider distrust of participants. CONCLUSIONS: Twelve years post-injury, a considerable proportion of Maori reported experiencing barriers to accessing healthcare services. To restore a sense of manaakitanga and improve Maori access to healthcare, Maori-specific supports are required and systemic barriers must be addressed and removed.

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.

Shining a light on the road towards conducting principle-based co-production research in rehabilitation.

Moving from participatory approaches incorporating co-design to co-production in health research involves a commitment to full engagement and partnership with people with lived experience through all stages of the research process-start to finish. However, despite the increased enthusiasm and proliferation of research that involves co-production, practice remains challenging, due in part to the lack of consensus on what constitutes co-production, a lack of guidance about the practical steps of applying this approach in respect to diverse research methods from multiple paradigms, and structural barriers within academia research landscape. To navigate the challenges in conducting co-produced research, it has been recommended that attention be paid to focusing and operationalising the underpinning principles and aspirations of co-production research, to aid translation into practice. In this article, we describe some fundamental principles essential to conducting co-production research (sharing power, relational resilience, and adopting a learning mindset) and provide tangible, practical strategies, and processes to engage these values. In doing so, we hope to support rehabilitation researchers who wish to engage in co-production to foster a more equitable, ethical, and impactful collaboration with people with lived experience and those involved in their circle of care.

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.

Measuring disability: An agreement study between two disability measures.

BACKGROUND: The Washington Group Short Set (WGSS) is increasingly being included in surveys worldwide to improve the quality and comparability of disability data within and between nations. However, compared to commonly employed binary impairment measures, the WGSS appears to have a relatively high threshold for disability indication. Empirical evidence is required to quantify this potential difference and its impact. OBJECTIVE: To determine the agreement between a binary disability question (BDQ) and the WGSS measure administered concurrently in a large representative survey of adults. Two WGSS indication scenarios were considered: one using the recommended threshold to indicate disability (WGSS1); and another using a lower threshold (WGSS2). METHODS: A cross-sectional agreement study nested within the 2018 Canterbury Wellbeing Survey of randomly selected adults aged ≥18 years resident in the greater Christchurch region. RESULTS: From 2807 valid observations, 493 (17.6%), 259 (9.1%), and 822 (28.7%) participants were identified as having a disability by the BDQ, WGSS1 and WGSS2 measures, respectively. While concordance was high between BDQ and WGSS1 measures (85.3%), agreement was only fair (κ = 0.37) and discordance was significantly asymmetrical (p < 0.001). Participants were more likely to be indicated as 'disabled' using the BDQ but not indicated using the WGSS1 than vice versa. CONCLUSIONS: Different WGSS thresholds produce widely varying disability estimates, and the recommended WGSS1 resulted in an importantly reduced disability prevalence compared to a binary impairment measure when administered concurrently. This has profound implications for inclusivity and policy for people living with disability.

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.

Relationships and the transition from spinal units to community for people with a first spinal cord injury: A New Zealand qualitative study.

BACKGROUND: Spinal Cord Injury (SCI) can have substantial consequences for the injured person, and also their family/whanau (Maori word for extended family and social networks). Family members can adopt either formal or informal care roles when the person returns home, and people with high-level care requirements may also need non-family support workers. OBJECTIVE: This study considers how SCI can impact relationships during the transition from spinal rehabilitation units to home. METHOD: Nineteen SCI participants from the New Zealand longitudinal study were interviewed six months post-discharge from either of New Zealand's two spinal units. Data were analysed using the framework method. RESULTS: Three themes captured participants' relationship experiences during the time of transition: Role Disruption, examines how participants' pre-SCI family/whanau relationships underwent change as previously understood parameters of engagement were disrupted. A Balancing Act, explores the challenge of renegotiating previously-understood parameters between participants and whanau. The Stranger in My/Our Room focuses on how the relationship between participants and support workers was (necessarily) new to the participant and their family/whanau who now had an 'outsider' episodically or continuously in their home. The specifics of 'their' relationship was also new to the support worker; and negotiating the parameters of this relationship could only occur on transition home. CONCLUSION: SCI necessitates a renegotiation of relationships and, for some, also involves the negotiation of a new type of relationship with support workers. Understanding the ways a SCI may affect relationships can enable rehabilitation services to best support people with SCI and their family to prepare for their transition home.

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.

Respondent driven sampling of wheelchair users: A lack of traction?

BACKGROUND: Internationally wheelchair users are an emerging demographic phenomenon due to their rapidly increasing life-span coupled with accelerated general population ageing. While having significant healthcare and social implications, basic robust epidemiological information of wheelchair users is often lacking due in part to this population's "hidden" nature. Increasingly popular in epidemiological research, Respondent Driven Sampling (RDS) provides a mechanism for generating unbiased population-based estimates for hard-to-reach populations, overcoming biases inherent within other sampling methods. This paper reports the first published study to employ RDS amongst wheelchair users. METHODS: Between October 2015 and January 2016, a short, successfully piloted, internet-based national survey was initiated. Twenty seeds from diverse organisations were invited to complete the survey then circulate it to peers within their networks following a well-defined protocol. A predetermined reminder protocol was triggered when seeds or their peers failed to respond. All participants were entered into a draw for an iPad. RESULTS: Overall, 19 people participated (9 women); 12 initial seeds, followed by seven second-wave participants arising from four seeds . Completion time for the survey ranged between 7 and 36 minutes. Despite repeated reminders, no further people were recruited. DISCUSSION: While New Zealand wheelchair user numbers are unknown, an estimated 14% of people have physical impairments that limited mobility. The 19 respondents generated from adopting the RDS methodology here thus represents a negligible fraction of wheelchair users in New Zealand, and an insufficient number to ensure equilibrium. While successful in other hard-to-reach populations, applying RDS methodology to wheelchairs users requires further consideration. Formative research exploring areas of network characteristics, acceptability of RDS, appropriate incentive options, and seed selection amongst wheelchair users is needed.

Attending to biographical disruption: the experience of rehabilitation following tetraplegia due to spinal cord injury.

PURPOSE: To explore the experience of rehabilitation from the perspective of individuals with tetraplegia. METHODS: Semi-structured interviews of between 40 and 60 min were conducted with three men and one woman, with spinal injuries at C7 or higher, within 6 months of discharge from inpatient spinal cord injury (SCI) rehabilitation. Data were subject to an Interpretive Phenomenological Analysis (IPA). RESULTS: Participants described their injuries as more than a biological impairment that limited certain functional abilities. For them, SCI was a sudden event that also disrupted one's "life biography". Interviews uncovered three key themes essential to an individual's ability to restore feelings of self-agency and biographical continuity: The importance of information, regaining control, and restoring a sense of personal narrative. CONCLUSION: Findings from studies using IPA have much to contribute to discussion and debate at the level of rehabilitation theory and can guide future research directions. The findings of the present study support a growing body of literature that argues that rehabilitation research needs to focus more intensely on the biographical disruption caused by SCI. Implications for Rehabilitation Participants in the present study experienced a significant disruption to their biographical narratives following a SCI as they entered an unknown and uncertain world. The findings from the present study provide an evidence-base that is best applied to discussion regarding psychosocial adjustment at the level rehabilitation theory. The concepts of identity and biographical disruption are appearing more frequently in qualitative literature and both merit further investigation to assess their prevalence among the wider SCI populations.