Empowering families with young autistic children: A participatory approach to design and develop a globally relevant family support programme

Purpose:
• Our partnered project aims to create a new group support programme for families with young children diagnosed with autism.
• Our ambitious goal is to address the global gap in accessible support services for such families.
• Presently, there's a lack of scalable and sustainable autism family support programmes adaptable to various contexts [1].
• We prioritised stakeholder involvement to ensure a globally relevant programme [2,3,4].
• This poster outlines our participatory approach and how it led to a co-created theory of change.

Methods:
• Over 20 months, we engaged 36 stakeholders across South Africa, Russia, and the UK, representing various backgrounds (family members, autistic individuals, non-profits, researchers, healthcare professionals, and educators).
• Participants were purposefully sampled and engaged in activities such as workshops, surveys, online discussions, interviews, market analyses, and literature reviews (Figure 1).
• Each activity generated qualitative data, organised digitally as sticky notes on a whiteboard.
• These data were then categorised to develop a Theory of Change, defining the programme's design principles and desired outcomes.

Results:
• The Bloom Theory of Change is a co-created framework that outlines (1) the design and development principles guiding the programme (Figure 2) and (2) the intended impact of the programme on children, parents, families, communities, and society as a whole (Figure 3).
• The design principles include six considerations and six approaches [5,6] woven together according to a ‘loom’ analogy.
• The five levels of impact of the Bloom programme are outlined over time, ranging from the intended impact to the ultimate outcome.

Conclusion:
• The Bloom Theory of Change guides the development of our family support programme, integrating evidence-based strategies tailored to the specific needs of families while ensuring global relevance.
• By using a participatory approach we determined integrated design principles and reached consensus on the desired impact of the programme for families, communities, and society.
• Our research not only contributes to autism support efforts but also provides insights into participatory methodologies for creating inclusive, globally applicable interventions in the future.

Acknowledgement:
To all our stakeholders: Thank you for your invaluable participation and dedication. Your time, perspectives, and expertise have generated principles and outcomes that are more impactful, inclusive, and innovative. We appreciate your commitment to our shared goal of empowering families with autistic children across the world and look forward to building on our discussions.

References
[1] D’Agostino, S.R. et al. (2023) ‘Toward deeper understanding and wide-scale implementation of naturalistic developmental behavioral interventions’, Autism, 27(1), pp. 253–258. Available at: https://doi.org/10.1177/13623613221121427.
[2] Busch, M.D. et al. (2019) ‘Activating social change together: A qualitative synthesis of collaborative change research, evaluation and design literature’, Gateways: International Journal of Community Research and Engagement, 12(2). Available at: https://doi.org/10.5130/ijcre.v12i2.6693.
[3] Reidpath, D.D. et al. (2022) ‘Implementing “from here to there”: A case study of conceptual and practical challenges in implementation science’, Social Science & Medicine, 301, p. 114959. Available at: https://doi.org/10.1016/j.socscimed.2022.114959.
[4] Scher, B.D. et al. (2023) ‘Participatory Research Emergent Recommendations for Researchers and Academic Institutions: A Rapid Scoping Review’, Journal of Participatory Research Methods, 4(2). Available at: https://doi.org/10.35844/001c.74807.
[5] Dopp, A.R. et al. (2020) ‘Aligning implementation and user-centered design strategies to enhance the impact of health services: results from a concept mapping study’, Implementation Science Communications, 1(1), p. 17. Available at: https://doi.org/10.1186/s43058-020-00020-w.
[6] Penchansky, R. and Thomas, J.W. (1981) ‘The Concept of Access: Definition and Relationship to Consumer Satisfaction’, Medical Care, 19(2), pp. 127–140. Available at: https://doi.org/10.1097/00005650-198102000-00001.