My Active Life – Living-Experience Advisory Group
Creators: name: Anderson, Kate
Publisher: name: Nature Awards for Inclusive Health Research
Year: 2025
Subjects: classificationCode: 420602
subject: Health equity

description: <b>Abstract</b>Our study explored how children and adults living with disability experience inclusion in sport and recreational activities. To include people with complex communication-support needs, we swapped traditional research methods for new and creative approaches. We also interviewed recreation services about their inclusive practice. We uncovered new insights which our industry partners have used to improve access for people living with disabilities (PLWD) in Australia. We are one of few teams to have undertaken a formal evaluation of inclusive health-research practice. We have shared our recommendations through publications, presentations, online resources, and mentoring. We are proud of our achievements in authentic collaboration, and hope to reach even more PLWD in the future.<b>Introduction</b>Our collaborative team includes academic researchers, industry professionals, and a paid living-experience advisory group (LEAG) comprising six PLWD.From 2020 to 2023, we guided and evaluated the My Active Life (MAL) program, a national inclusive-recreation initiative administered by Freedom Solutions Australia. Complementary to this work, we undertook an autoethnographic analysis of our inclusive research approach.LEAG meetings were chaired by an LE advisor. MAL program managers led service-planning activities with LEAG members, and managed program administration. Research activities were led by academics, with input from LEAG members and MAL project managers. Research administration was managed by academics. Academic publications and resources were typically co-authored by LEAG members, academics, and MAL project managers. Research/industry presentations were developed and delivered by LEAG members, sometimes alongside MAL project managers and/or academics.<b>Who should benefit?</b>Meaningful engagement in recreational activities is a fundamental right protected by Article 30 of the United Nations Convention on the Rights of Persons with Disabilities. Despite its importance for health and wellbeing, participation is lower amongst PLWD in Australia than in the general population. Barriers identified by our research and that of others include: economic disadvantage; travel; feeling different from others; negative attitudes or stigma; lack of tailored instruction, support or tools; and venues with poor physical or communication accessibility.The MAL program has improved access to sport and recreational activities for PLWD across Australia through a suite of consumer-informed programs, including community events where individuals can trial adapted activities and equipment in their local area, capacity building for mainstream service providers, and a national initiative providing over 3,000 custom-adapted bicycles. MAL’s co-design philosophy and extensive community partnerships help to ensure program activities are relevant and inclusive. The LEAG has formed a critical component of this process.Community members have stated that while inclusive and specialist sport and recreation programs are typically well-intentioned, they are often a poor fit for PLWD and can make them feel ‘othered’. In Australia, PLWD are not consistently consulted on the design of inclusive recreation programs, are rarely afforded opportunities to lead such work, and are typically included as subjects and not equal partners.Our LEAG aimed to disrupt this status quo. Members shaped MAL offerings by interrogating the scope and marketing of activities, ideating new forms of engagement, connecting staff with local community networks, and eliciting greater attention to intersectional considerations like accessibility, gender and cultural diversity, and mental health.LEAG members played a critical ‘provocateur’ role in research evaluations of MAL, encouraging academics to replace traditional approaches with accessible, flexible, and creative alternatives to better capture and share diverse community perspectives.<b>Engagement</b>Each stage of our national investigation into inclusive recreation experiences was co-designed by academic team members, MAL project managers, Freedom Solutions leadership team members, and LEAG members.We conducted three exploratory studies: a national survey to profile the demographics and experiences of people waiting for an adapted bike or other customized recreation equipment; in-depth interviews with people who used a customized bike; and interviews with mainstream providers who had partnered with MAL in the delivery of inclusive recreational services.Recognizing that traditional research tools could be inappropriate for many community members, the LEAG identified and resolved issues relating to digital accessibility, readability, cultural appropriateness, data collection, and stigmatizing or confusing language/terminology.Consequently, we successfully gathered the perspectives of a wide range of community members, including young children and their families, people with intellectual disabilities, older people, those with digital-access restrictions, and those living in regional areas. Our mixed-methods research yielded rich insights about experiences of inclusion in recreational and leisure activities.Our findings highlighted the power of personalized accessories to de-stigmatize assistive technology used for recreation; the need to promote non-therapeutic leisure options for PLWD; the hidden costs of recreational activities for PLWD; and the need for responsive and comprehensive funding models.Importantly, PLWD, their families, and service providers perceived recreational inclusion as more than simply being ‘present’ or physically participating in activities: being included means feeling dignified, respected, confident, and welcome.<b>Research</b>Our autoethnographic study involved a thematic analysis of historical meeting minutes and agendas, an anonymous team-member survey, and group-reflection sessions. From these, we distilled seven recommendations for good practice in inclusive health/disability research, mapping a blueprint for success.We found that recruiting consumers from non-research backgrounds enhanced research feasibility and validity. LEAG members with ‘outside’ perspectives were well-placed to challenge traditional academic norms and assumptions. We recommend that consumer advisors are recruited to projects based on the diversity of their professional/educational backgrounds, in addition to their health/disability experiences.Existing guidelines often suggest that consumer partners should receive ‘adequate training’ in research methods, without providing evidence or details. Although our LEAG members found it useful to have some insight into research design and constraints, we argue that extensive research enculturation of consumer partners is not essential and could in fact be counterproductive.Tracing the evolution of our collaborative group across a three-year period revealed the importance of long-term engagement for building trust and disrupting initial power hierarchies. Our team’s collective stance shifted significantly over this period, suggesting that outputs and recommendations may be refined with time.Authentic collaborations are time- and resource-intensive, demanding a high degree of patience and investment from services and funding bodies. This has relevance to under-addressed aspects of inclusive health research, such as recruitment, on-boarding, and end-of-project support.<b>Translating into impact</b>Our research has been incorporated into the MAL strategic plan and several public resources. We continue to meet regularly with Freedom Solutions staff, so that emerging research findings can be applied to current services.The experience of participatory research has prompted powerful growth for our team members, and the benefits have propagated through our professional and community networks. Regardless of our official roles, our team members hold multiple and intersecting perspectives as professionals, advocates, carers, and PLWD. Over time, we have felt confident to disclose our diverse experiences and bring them into the co-design process. Relationships forged during LEAG meetings have brought solidarity during times of hardship (such as COVID-19 lockdowns, family and workplace crises, and periods of ill-health), and many of us have forged strong friendships through these encounters.Being involved in this research has also broadened our networks and created unexpected opportunities for knowledge transfer. LE advisors have applied insights from our inclusive research to their own work in media, law, and disability policy, and have mentored their colleagues in inclusive practice.Although it was at times confronting for academic team members to receive constructive feedback from the LEAG, this experience has shaped them as researchers and educators. They have brought these changes into other national/international projects in health economics, primary care, and rehabilitation and health technology, creating broad-reaching impacts.One key example is our impact on the institutional ethics boards that reviewed and approved the MAL research protocols. Reviewers were initially hesitant about our novel, flexible methods, but we helped them to understand our approach with detailed documentation and advice from our LE colleagues. We also updated reviewers on the outcomes and impacts of any inclusive methods they approved. Consequently, we have watched our local ethics committee gain confidence in reviewing inclusive research.We expect these impacts to expand with broader dissemination of our findings and resources.