Findings from a pragmatic cluster randomised controlled feasibility trial of a music and dance programme for community dwelling older adults.

INTRODUCTION: Functional decline, chronic illness, reduced quality of life and increased healthcare utilisation are common in older adults. Evidence suggests music and dance can support healthy ageing in older adults. This study explored the feasibility, potential for effect and cost effectiveness of the Music and Movement for Health (MMH) programme among community-dwelling older adults using a pragmatic cluster-randomised, controlled feasibility trial design. METHODS: Community-dwelling adults aged 65 years or older were recruited to seven clusters in the Mid-West region of Ireland. Clusters were block randomised to either the MMH intervention or control. Primary feasibility outcomes included recruitment, retention, adherence, fidelity, and safety. Secondary outcomes measured physical activity, physical and cognitive performance, and psychosocial well-being, along with healthcare utilisation were assessed at baseline and after 12 weeks. RESULTS: The study successfully met feasibility targets, with recruitment (n = 100), retention (91 %), adherence (71 %), data completeness (92 %) and intervention fidelity (21 out of 24) all meeting predetermined criteria. Both groups exhibited an increase in self-reported physical activity and improved physical function. Participants in the intervention group scored consistently better in psychosocial measures compared to the control group at follow-up. The health economic analysis confirmed the feasibility of the methodology employed and points to the potential cost-effectiveness of the MMH relative to the control or no organised programme. DISCUSSION AND IMPLICATIONS: The MMH intervention and study design were found to be feasible and acceptable with important findings to inform future evaluation of the clinical and cost-effectiveness of a definitive randomised controlled trial.

The role of occupational therapy in providing vocational rehabilitation for inflammatory arthritis: A scoping review protocol.

INTRODUCTION: Inflammatory arthritis (IA) significantly impacts people's ability to continue in work roles, despite advances in medical management. Employment is acknowledged as important for health and wellbeing. Facilitating work participation and employment reduces social welfare dependence for income, minimising societal cost. Internationally, pathways and processes are developing to maintain people with acquired conditions in the workplace. Occupational Therapy supports this process, with its biopsychosocial approach, giving a framework to consider the complex dynamic of a person's vocational rehabilitation (VR) needs. A scoping review framework was chosen to explore the diverse VR process and emerging focus on Occupational Therapy's role in providing VR for the IA population. METHODS: The methodological framework for scoping reviews will be used to guide the process and structure of the scoping review. A search strategy will be implemented in all the major peer reviewed databases along with grey literature repositories for English language studies. Study selection will use the PRISMA-ScR flow chart against an agreed eligibility criteria by two independent reviewers. Data extraction from the final selection will be mapped out using tables and a supporting descriptive review reflecting on the original scoping review aim and objectives completed. DISSEMINATION: Findings will be disseminated at all levels and in various formats to bring them to the attention of clinicians, researchers and policy makers as VR pathways are established and prioritised for the early IA population.

Preliminary findings from the early phases of the Music and Movement for Health study: the feasibility of an arts-based health programme for older adults.

Introduction (including aim): There is a lack of community-based programmes for older adults in Ireland. Such activities are vital to enable older people to (re)connect after COVID-19 measures, which had a detrimental effect on physical function, mental health and socialisation. The aims of the preliminary phases of the Music and Movement for Health study were to refine stakeholder informed eligibility criteria, recruitment pathways and obtain preliminary measures for feasibility of the study design and programme, which incorporates research evidence, practice expertise and participant involvement. METHODS: Two Transparent Expert Consultations (TECs) (EHSREC No: 2021_09_12_EHS), and Patient and Public Involvement (PPI) meetings were conducted to refine eligibility criteria and recruitment pathways. Participants from three geographical regions in the mid-west of Ireland will be recruited and randomised by cluster to participate in either a 12-week Music and Movement for Health programme or control. We will assess the feasibility and success of these recruitment strategies by reporting recruitment rates, retention rates and participation in the programme. RESULTS: Both the TECs and PPIs provided stakeholder-informed specification on inclusion/ exclusion criteria and recruitment pathways. This feedback was vital in strengthening our community-based approach as well as effecting change at the local level. The success of these strategies from phase 1 (March-June) are pending. DISCUSSION: Through engaging with relevant stakeholders, this research aims to strengthen community systems by embedding feasible, enjoyable, sustainable and cost-effective programmes for older adults to support community connection and enhance health and wellbeing. This will, in turn, reduce demands on the healthcare system.Note: We would like to thank and acknowledge those who participated in the PPIs for their time and invaluable feedback.

A cross-sectional survey investigating wheelchair skills training in Ireland.

PURPOSE: Wheelchair skills trainings are a vital aspect wheelchair provision yet are arguably overlooked and extent to which training is provided in the Irish context is highly variable. The primary aim of this study was to quantify whether a need exists to further develop wheelchair skills training in Ireland. METHODS: A cross sectional survey was conducted using SurveyMonkeyTM. Irish health professionals involved in wheelchair service delivery were asked how they offer wheelchair skills trainings and what components of wheelchair skills they train. To collect qualitative information, questions also explored how health professionals would like training to develop. RESULTS: Consensus among respondents was that training is often provided to new users (n = 91, 89%), however, it is limited to mostly transfers and simple mobility techniques. Further, it was reported that advanced mobility skills are sometimes (n = 81, 51%) or never taught (n = 81, 21%). The respondent's confidence instructing various skills corresponded with the frequency of instruction. The responses captured a shared interest in developing standardised training programs and the development of continued education training in the area. CONCLUSION: The findings from this study reinforce that a present need exists to further develop wheelchair skills training in Ireland, with the aim of improving Irish wheelchair service providers' knowledge and confidence in advanced wheelchair skills needed to mobilise and perform activities of daily living.IMPLICATIONS FOR REHABILITATIONCurrent clinical practice in Irish wheelchair service delivery includes basic wheelchair skills training, whereas training in advanced skills needed for improved independent mobility is highly variable.This study raises awareness that health professionals seek formal education and training in wheelchair skills to improve their knowledge and confidence in providing wheelchair skills training.There is a need to develop wheelchair skills training opportunities, both as a requirement for stakeholders involved in wheelchair provision and to address an unmet need for wheelchair users.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol.

PURPOSE: Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries. METHODS: This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized. IMPLICATIONS AND DISSEMINATION: The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators' Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.Implications for RehabilitationA comprehensive examination of wheelchair service provision education could help develop strategies to address the unmet need for wheelchair services globally.Findings for this review will facilitate the planning and development of an evidence-based education package that could bridge the existing knowledge gaps related to safe and effective wheelchair service provision among health professionals involved.This review will also inform the potential barriers and enablers for effective integration and implementation of wheelchair service provision education worldwide.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review.

PURPOSE: This review aimed to collate and summarize available research literature about wheelchair service provision education available to healthcare professional students, healthcare personnel and educators across low- to high-resourced settings. METHODS: The Joanna Briggs Institute methodological steps for scoping reviews were followed. Included studies were mainly sourced from Medline, Embase, CINAHL, Scopus, Academic Search Complete and ProQuest. Independent title, abstract and full-text screening with defined inclusion and exclusion criteria was performed. All screening and extraction were performed independently by two authors. A thematic approach was used to synthesize results. Data extracted from included studies were charted according to a template that we created. The study quality was also appraised. RESULTS: A total of 25 articles were included (11, 36% from high-income settings) with 12 (48%) observational studies and 13 (52%) experimental studies. The literature addressed three main topics: (1) assessing wheelchair service provision knowledge, (2) implementing training interventions using in-person, online and/or hybrid learning approaches and (3) describing current wheelchair service provision education globally. The most frequently reported training programs used were the Wheelchair Skills Program and the World Health Organization Wheelchair Service Training Package - Basic Level. CONCLUSION: Limited information has been published about the integration of wheelchair content into the curricula of professional rehabilitation programs. Efforts to build international partnerships, improve the quality and currency of training programs and build resources that can assist educators in the integration of wheelchair-related content into professional rehabilitation programs should be prioritized.Implications for RehabilitationThis is the first review that examined and synthesized the current state of wheelchair service provision education for rehabilitation students and personnel across low- to high-income countries.Findings from this review indicate that there is limited information about the integration of wheelchair-related content into professional rehabilitation programs.Efforts to build international partnerships, standardize wheelchair service provision content and evaluation and integrate training into professional rehabilitation programs worldwide should be prioritized.

"Unknown world of wheelchairs" A mixed methods study exploring experiences of wheelchair and seating assistive technology provision for people with spinal cord injury in an Irish context.

AIM: This study explores people living with spinal cord injury (SCI) experiences and perspectives of wheelchair and seating assistive technology service provision within an Irish context. There are few studies that examine the process of wheelchair and seating provision and the connection between satisfaction, performance, and participation. METHOD: This mixed methods study explores participant experiences in two parts. Part one presents a thematic analysis of eight in-depth semi-structured interviews with wheelchair service users living with SCI. Part two presents the results content and frequency analysis of an on-line survey of wheelchair service user's experience and satisfaction with wheelchair and seating service provision from respondents with SCI (n = 117) taken from a larger national survey from respondents with various diagnoses (n = 273). RESULTS: Findings from the interviews and survey revealed the meaning of wheelchair and seating assistive technology provision as essential to life following SCI. Barriers within the provision system such as wait times and funding were found to impede people's rights and freedom from initial assessment through to follow up, maintenance and repair. CONCLUSIONS: The current implementation of wheelchair and seating assistive technology provision as described in this paper impacts the ability of individuals living with an SCI to participate as equal members of society. A review of wheelchair provision is essential to optimize access to services for appropriate wheelchairs.IMPLICATIONS FOR REHABILITATIONAs a basic human right, appropriate wheelchair and seating assistive technology provision facilitates people's optimal independence, health and well-being, social engagement, and participation in everyday life.The development of adequate wheelchair services should be a priority area for individuals with SCI who use wheelchair and seating assistive technology.National wheelchair and seating assistive technology provision policies in alignment with internationally developed best practice guidelines to provide equal access to services which include assessment, delivery, training, maintenance, and follow-up are essential.

Wheelchair and seating assistive technology provision: a gateway to freedom.

AIM: The meaning of wheelchair and seating assistive technology and the impact inappropriate provision has on people's lives from a service user's perspective within an Irish context is highlighted. There is a dearth in evidence examining the process of wheelchair and seating provision and the interconnectedness between satisfaction, performance and participation from an equality and human rights perspective. The purpose if the study is to investigate wheelchair service users' perspectives of wheelchair and seating provision in Ireland. METHOD: This is a mixed-methods study with an exploratory sequential design that includes two phases. During phase one, wheelchair service users were invited to take part in qualitative in-depth semi-structured interviews, which were thematically analysed and formed part of a larger ethnographic study involving multiple stakeholders in sustainable wheelchair and seating provision strategy development. In phase two, an online Survey Monkey questionnaire was distributed to obtain a wider overview of wheelchair service provision from a wheelchair service users perspective. Data obtained from the closed questions and content analysis for open comments was analysed descriptively for this phase. RESULTS: Eight wheelchair service users agreed to participate in the interviews and 273 responded to the online survey. Thematic analysis and questionnaire frequency and content analysis revealed the vital meaning of wheelchair and seating assistive technology provision. However, bottlenecks within the system affect daily living, with qualitative data highlighting the obstruction to experiences of independent living from initial appointment to wheelchair breakdowns during daily life. CONCLUSION: Appropriate wheelchair and seating assistive technology provision is a basic human right, supported by the essential and embodied nature of the wheelchair as demonstrated through the wheelchair service users' perspective throughout this study. These findings highlight the impact of ad-hoc services on individual freedoms and how the overall pace of the system affects a person's ability to organise their time as an equal member of the community across the lifespan. A national review of wheelchair and seating assistive technology provision services is called for, giving consideration to access to services, assessment and delivery, follow up and management, education and training.IMPLICATIONS FOR REHABILITATIONWheelchair and seating assistive technology provision as a basic human right is misunderstood.Appropriate wheelchair and seating assistive technology provision should be provided to meet this primary need as a pre-requisite for survival.Every aspect of the wheelchair and seating provision process impacts on occupational performance, equality of opportunity and community mobility. Wheelchair and seating assistive technology professionals and providers have a responsibility to review their practice and service provision systems.

Music and Movement for Health: Protocol for a pragmatic cluster-randomised feasibility pilot trial of an arts-based programme for the health and wellbeing of older adults.

Background: Arts-based health programmes (ABHP) can enhance the physical and psychosocial health and wellbeing of older people. However, the feasibility and usefulness of such programmes in Ireland are currently unknown. The primary aim of this study is to examine the feasibility of the study design, its application to a music and movement for health programme and associated costs. The secondary aim is to obtain preliminary effect estimates of an ABHP on health and wellbeing in older adults. Methods: This study is a pragmatic cluster-randomised controlled feasibility trial. Community-dwelling adults, aged 65 years or older will be recruited in the mid-west region of Ireland via methods including social prescription, traditional and social media. The clusters, based on geographical region, will be block randomised to either the ABHP or control using 1:1 allocation ratio. The programme will comprise a 1.5-hour music and dance session each week for 12-weeks together with a 1-hour home-based music and movement programme for 12-weeks. A qualitative and quantitative process evaluation of the arts-based health programme will be performed. Outcomes: Primary outcomes for feasibility include recruitment rates (the number of participants recruited per cluster per month); retention rate (the number of participants who complete measures at baseline and at follow up post intervention, and minimum average attendance. Secondary outcomes will include physical function, balance, physical activity, loneliness, social isolation, cognition, mood, as well as quality of life and cost. Conclusions: If this pioneering study finds evidence to support feasibility and acceptability, a future larger-scale definitive trial will be conducted to examine the effectiveness of an arts-based health programme for older adults. This research aims to strengthen collaborative efforts to implement effective, sustainable and cost-effective programmes for older adults to support community connection, enhancing health and wellbeing, in turn reducing demands on the healthcare system. ISRCTN registration: ISRCTN35313497 (18/02/2022).

Understanding the Global Challenges to Accessing Appropriate Wheelchairs: Position Paper.

Introduction: Appropriate wheelchairs are often essential for the health and wellbeing of people with mobility impairments to enhance fundamental freedoms and equal opportunity. To date, provision has mainly focused on just delivering the wheelchair instead of following an evidence-based wheelchair service delivery process. In addition, many governments have not committed to a national wheelchair provision policy. Approach: To prepare this position paper, a systemic development model, founded on the sustainable human security paradigm, was employed to explore the global challenges to accessing appropriate wheelchairs. Positions: I: Consideration of key perspectives of wheelchair provision across the life course is essential to meet the needs to children, adults, older people and their families; II: Comprehensive wheelchair service delivery processes and a competent workforce are essential to ensure appropriate wheelchair service provision; III: Evaluations on wheelchair product quality development, performance and procurement standards are key as wheelchair product quality is generally poor; IV: Understanding the economic landscape when providing wheelchairs is critical. Wheelchair funding systems vary across jurisdictions; V: Establishing wheelchair provision policy is a key priority, as specific policy is limited globally. Conclusion: The vision is to take positive action to develop appropriate and sustainable wheelchair service provision systems globally, for me, for you, for us.

Octopus Watch Fosters Family Resilience by Enhancing Occupational Engagement for Children with Spina Bifida and/or Hydrocephalus: Pilot Study.

BACKGROUND: Children with spina bifida and/or hydrocephalus (SB&/H) often experience difficulties with activities of daily living (ADLs) due to impaired executive functioning, increasing sedentary behaviours. The HeyJoy Octopus watch, a child-friendly icon-based smartwatch could be used as an enabler to promote purposeful ADLs (i.e., goal-orientated ADLs). OBJECTIVE: to investigate the effectiveness of the Octopus watch in promoting purposeful ADLs for children living with SB&/H (<8 years). METHODS: Mixed-methods engaging parents and children in four phases: (1) Administered demographic questionnaire, semi-structured interview, childhood executive functioning inventory (CHEXI) and the Canadian occupational performance measure (COPM); focus group one introducing the study, information pack using smartwatch and photovoice data collection methods. (2) Measured baseline movement for four days with smartwatch without using functions. (3) Measured activity for 16-days while using the smartwatch. (4) Re-administered assessments and conducted a second focus group based on photovoice narratives. RESULTS: movement data recorded for four participants, three of four showed mean activity increase (36%). N-of-1 analyses found one participant showed clear improvement (p = 0.021, r2 = 0.28). Mean inhibition decreased by 16.4%, and mean change in COPM performance and satisfaction scores were 2.1 and 2.4, respectively. The photovoice narrative focus group supports findings evidenced with improved daily routines. CONCLUSIONS: The Octopus watch is an innovative early intervention that can promote purposeful ADLs, fostering family resilience by enhancing occupational engagement. Further research is required.

Developing country-specific wheelchair service provision strategic plans for Romania and the Philippines.

Background: Achieving appropriate wheelchair provision at a national level is complex, requiring regulations, funding and policies established through governments. Understanding wheelchair provision within different countries is key. This paper describes the process used to support the development of wheelchair service strategic plans in Romania and the Philippines. It considers the influences, meaning, challenges and developments when producing strategic priorities within two different contexts. Methods: The International Society of Wheelchair Professionals (ISWP) sponsored affiliates Motivation Foundation Romania and the Philippine Society of Wheelchair Philippine Society of Wheelchair Professionals (PSWP), to conduct organizational ethnographic mixed method stakeholder centred studies, to develop robust strategic plans. An affiliate coordinator for wheelchair provision in less resourced settings supported this process. Results: Diversity between the two-affiliate sites was evident, influencing value placed within both societies towards equality and participation. Common components to address included: advocacy; wheelchair service infrastructure; capacity building; education; training and research. Research process facilitation supported by affiliate coordinator is important. Conclusion: Understanding contextual dimensions, which sharp a countries wheelchair service, is essential. Member states should take action by conducting in-country wheelchair sector analysis, to create wheelchair provision strategies for sustainable development, to meet personal posture and mobility needs, primary for daily living, as a basic human right. Implications for rehabilitation Understanding the complexity of providing appropriate wheelchairs within different countries is essential to meet the diverse needs of citizens. Conducting situational analysis of the wheelchair sector involving key stakeholders in the process is important to understand different perspectives and develop strategic priorities towards sustainable development. Producing context specific wheelchair sector reports and strategic plans strengthens the evidence base when informing governments regarding the importance of developing sustainable wheelchair provision infrastructures. The affiliate coordinator role is important to support affiliates to produce robust documentation that clearly and objectively outlines the wheelchair sector issues and plans, to provide solutions.

Wheelchair service provision education and training in low and lower middle income countries: a scoping review.

PURPOSE: Improving access to education and training for those providing wheelchair and seating assistive technology to meet personal posture and mobility requirements, as a basic human right, is a priority. This review considers education and training available to personnel within low and lower middle income countries (LLMIC), to ascertain where gaps in knowledge exist and identify human resource education priorities. METHOD: A scoping review, mapping out existing scientific and grey literature within the field between 1993 and 2017 was conducted. The search strategy included use of online databases, manual analogue searches and key stakeholder informant advice. A content analysis process was applied to organize the literature retrieved and extract key themes. RESULTS: Education and training in LLMIC appears ad hoc and limited, however, there is growing recognition as to its importance, notably by the World Health Organization and nongovernmental organizations, delivering education initiatives to a number of countries, along with the development of a credentialing test. Inconsistency exists regarding personnel responsible for wheelchair provision, with no specific professional clearly recognized to oversee the system within many LLMIC. CONCLUSIONS: Education and training is required for all stakeholders involved in wheelchair provision. Advocating for programme development to enhance personnel skills, build capacity and ensure best practice is a priority. Pilot sites, delivering and credentialing appropriate wheelchair provision education and training within context should be considered. Measuring outcomes and transferable skills should be part of education programme delivery structures. Considering a new discipline responsible for oversight of wheelchair provision should be investigated. Implications for rehabilitation Education and training is an essential step in the wheelchair provision process in the bid to obtain an appropriate wheelchair via appropriate provision services. However, it is more than education and training; its a human rights issue. Mandatory education and training needs to be a requirement for all stakeholders involved in wheelchair provision. Key wheelchair personnel need to establish their central role in this arena. The study raises awareness as to the importance of working with governments to commit to building sustainable wheelchair provision infrastructures.

Assistive technology policy: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit.

Increased awareness, interest and use of assistive technology (AT) presents substantial opportunities for many citizens to become, or continue being, meaningful participants in society. However, there is a significant shortfall between the need for and provision of AT, and this is patterned by a range of social, demographic and structural factors. To seize the opportunity that assistive technology offers, regional, national and sub-national assistive technology policies are urgently required. This paper was developed for and through discussion at the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit; organized under the auspices of the World Health Organization's Global Collaboration on Assistive Technology (GATE) program. It outlines some of the key principles that AT polices should address and recognizes that AT policy should be tailored to the realities of the contexts and resources available. AT policy should be developed as a part of the evolution of related policy across a number of different sectors and should have clear and direct links to AT as mediators and moderators for achieving the Sustainable Development Goals. The consultation process, development and implementation of policy should be fully inclusive of AT users, and their representative organizations, be across the lifespan, and imbued with a strong systems-thinking ethos. Six barriers are identified which funnel and diminish access to AT and are addressed systematically within this paper. We illustrate an example of good practice through a case study of AT services in Norway, and we note the challenges experienced in less well-resourced settings. A number of economic factors relating to AT and economic arguments for promoting AT use are also discussed. To address policy-development the importance of active citizenship and advocacy, the need to find mechanisms to scale up good community practices to a higher level, and the importance of political engagement for the policy process, are highlighted. Policy should be evidence-informed and allowed for evidence-making; however, it is important to account for other factors within the given context in order for policy to be practical, authentic and actionable. Implications for Rehabilitation The development of policy in the area of asssitive technology is important to provide an overarching vision and outline resourcing priorities. This paper identifies some of the key themes that should be addressed when developing or revising assistive technology policy. Each country should establish a National Assistive Technology policy and develop a theory of change for its implementation.

Enabling appropriate personnel skill-mix for progressive realization of equitable access to assistive technology.

BACKGROUND AND METHODS: This paper reviews the current capacity of personnel in enabling access to assistive technology (AT) as well as the systems and processes within which they work, and was reviewed, discussed, and refined during and following the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit. FINDINGS: Key concepts addressed include a person-centred team approach; sustainability indicators to monitor, measure, and respond to needs for service design and delivery; education, research, and training for competent practice, using the six rehab-workforce challenges framework; and credentialing frameworks. We propose development of a competence framework and associated education and training programs, and development and implementation of a certification framework for AT personnel. CONCLUSIONS: There is a resolve to address the challenges faced by People globally to access assistive technology. Context specific needs assessment is required to understand the AT Personnel landscape, to shape and strengthen credentialing frameworks through competencies and certification, acknowledging both general and specific skill mix requirements. Implications for Rehabilitation Personnel in assistive technology (AT) provision should be trained using a person-centred team approach, which emphasizes appropriate skill-mix to address multiple needs within the community. Sustainability indicators should be used which allow personnel to monitor, measure and respond to needs for service design and delivery. A competence framework with associated education and training program, coupled with the development and implementation of a certification framework for AT personnel needs, will promote quality in AT personnel training globally.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit.

Assistive technology (AT) is a powerful enabler of participation. The World Health Organization's Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a "state of the science" view of AT users, conceptualized as "People" within the set of GATE strategic "P"s. People are at the core of policy, products, personnel and provision. AT is an interface between the person and the life they would like to lead. People's preferences, perspectives and goals are fundamental to defining and determining the success of AT. Maximizing the impact of AT in enabling participation requires an individualized and holistic understanding of the value and meaning of AT for the individual, taking a universal model perspective, focusing on the person, in context, and then considering the condition and/or the technology. This paper aims to situate and emphasize people at the centre of AT systems: we highlight personal meanings and perspectives on AT use and consider the role of advocacy, empowerment and co-design in developing and driving AT processes.

Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach.

OBJECTIVES: Epidermolysis bullosa (EB) is a rare, genetic skin condition that is complicated, distressing, and painful and permeates every aspect of patients' lives. Support services are essential for meeting the primary needs of patients and families living with EB; however, provision is challenged by many complex issues. In collaboration with the patient organization DEBRA Ireland, this research conducted an in-depth analysis of Irish healthcare support services for EB, with a view to moving towards an improved and sustainable care pathway. METHODS: A sustainable community of practice model (SCOP), as a core construct provided a simplified framework when studying this complex system. The research utilized mixed methods, comprising individual interviews, questionnaires, and a participatory action research workshop based on a soft systems approach. The study engaged patients, family members, service providers, and policy developers. RESULTS: Findings emphasized that the complexities of life with EB are more than 'skin deep'. The lived experience of stakeholders revealed many levels of emotion, both positive and heart-rending. Despite the positive efforts of specialists in this field, inadequacies to meet the primary needs of people with EB, such as bandages-fundamental for survival-were highlighted. Participants reported challenges relating to understanding patients' needs, access to consistent services within hospitals and the community, time constraints, and the strong emotions evoked by this severe and rare disease. CONCLUSIONS: The study identified several areas that can be targeted to bring about improvements in meeting primary needs. Education and research at public, policy, and practice levels need to be prioritized. It is imperative that citizens move beyond an awareness that EB exists and demonstrate a consciousness about the importance of advocating and enabling seamless and sustainable support services through collective action.