Theme

This paper will explore how a multi-media platform that has been developed with and for disabled people can help families and young adults affected by a rare disease called Duchenne Muscular Dystrophy (DMD) to self advocate and to achieve improved holistic care and support.

What is DMD?

DMD is a rare genetic condition that affects one on 3,500 male children world-wide (Birnkrant et al. 2018) . Due to improved treatments such as cardiac support and night ventilation, many of those with DMD are now reaching their fourth decade (Landfeldt et al. 2020) . Young people with DMD become full time wheelchair users around the age 13 years and begin to use ventilation from their mid- late teens. Despite established high risks of neuro-divergence, reading difficulties and mental health problems, it has recently been noted that children and young people with DMD and their families struggle to have their non-physical needs acknowledged and met by schools and local services (Hoskin, James & Finch 2024). Regardless of calls for a biopsycho-social model of care (Morrow 2004), DMD remains a highly medicalised condition and support gives little note to the ‘human aspects of care’ (Setchell et al 2022).

What is Multi-media Advocacy? 

‘Multimedia Advocacy’ utilises digital technology to enable people to have their views, wishes, choices and aspirations made known to those around them (Kwiatkowska et al., 2012). In particular, the Rix Wiki is a tool that combines accessible multimedia use with a mind-map design, and was developed in partnership with people with learning disabilities, their families and professionals who support them (Watts, Kwiatkowska & Minnion 2023). Through the use of photos, videos, words and attachments Wikis can ‘capture the voice and aspirations of the individual and enable them to share their stories, preferences and goals with the key people in their life’ (Rix Research and Media, 2023).  Above all Wikis can help to develop a sense of identity and disrupt traditional passive images of disabled people (Watts, Kwiatkowska & Minnion 2023).

This Project

In this project Rix Wikis, that were originally developed with and for adults with learning disabilities, are adapted in collaboration with  young people with DMD in order to help meet the need of this new group of Wiki users. The majority of participants were from the UK but one participant was based in Europe and the UAE. Clinical trials for genetic treatments for DMD are currently occurring across Europe and the US.  

Research Questions:  

How can inclusive multi-media software support young people with DMD and /or their families to self-advocate?

How can inclusive multi-media software support young people and /or their families with DMD to get holistic support?

Theoretical framework

A theoretical framework of Dis/humanism (Goodley & Runswick Cole 2014) will be utilised which critiques the concept of humanism and what it means to be human. This theory acknowledges on the one hand the role disability can play in disrupting and challenging the notion of the human as white, European and able-bodied (Braidotti 2013), whilst on the other hand underlines the importance of claiming the laws and protections that come with being human. In addition, a core feature of the project will be ‘researching with’ rather than ‘researching on’, (Moriña 2018) and to this end it has been designed in collaboration with a user-led  charity that is led by people with muscle wasting conditions.  A steering group of young people with DMD from this organisation have helped to design the Wiki template and have offered ideas and feedback around recruitment, design and analysis.

A Qualitative approach was employed in order to explore experiences, preferences and opinions of young people with DMD and their families in relation to using the Wiki over a six month period (Coe et al 2021). Recruitment took place via the social media platforms of two national DMD charities and eleven people with DMD were recruited. Four of these participants were adults with DMD and seven were parents of children with DMD. Eight participants are resident in England, one in Scotland and one lives between Belgium and the UAE. Although the majority of participants are UK based it is hoped that as a web-based intervention it could be extended for global use for those with DMD if shown to be effective in this study. Data was collected through semi-structured online interviews before starting the Wiki, at monthly interval ‘catch up meetings’ and at the end of six months of use in order to explore how each young person and their family are using it and how it has been useful. All online interviews were recorded and transcripts produced. Reflective Thematic Analysis (Braun and Clarke 2019) is being utilised in order to analyse the data and to acknowledge the role of those with lived experience who are supporting analysis. The steering group of young people with DMD have met to discuss preliminary themes from initial and monthly Wiki interviews. The steering committee will be given anonymised transcripts after all of the 6 monthly interviews have taken place and we will discuss themes again as an iterative process. These will then be written up by the researcher and shared with the group before being written up as a report and ultimately a paper. Ethics Ethical approval was gained from the university and ethical practice was followed (BERA 2018) for example with regard to consent, anonymity and withdrawal. Power dynamics between researcher and participants was reduced through input from the steering committee who provided expertise of lived experience. All Wikis are password protected so the researcher can only view photos and other personal information with the consent of the participant.

The project is currently ongoing but preliminary data collection and discussion have highlighted how Wikis have played a role in supporting young people and their families in being: · Aspirational: older children and young adults have used their Wiki to share their aspirations and interests at meetings so that they became ‘more human’ rather than viewed as ‘a diagnosis’. · Relational: Wikis help with new members of the care team at home or school. Young adults in particular can use it as a training tool, a place to store videos on personalised information eg. How they want the carer to use their hoist, how they want to prepare food or be supported at school etc. · Organisational : Wikis help with organising the various aspects of DMD care. Some children were involved in UK and European-based clinical trials and they could use the Wikis to store information about this as well as bring together information from different clinical consultants eg. Cardiology, endocrinology etc. · Navigational: Wikis can help to introduce difficult conversations. Some parents reported that it gave them a licence and reason to discuss aspects of DMD with their child which they found difficult to bring up in general conversations. This was an unexpected outcome.

Birnkrant, D., K. Bushby, C. Bann, S. Apkon, A. Blackwell, M. Colvin, L. Cripe, et al. 2018. “Diagnosis and Management of Duchenne Muscular Dystrophy, Part 3: Primary Care, Emergency Management, Psychosocial Care, and Transitions of Care Across the Lifespan.” Lancet Neurology 17 (5): 445–455. https://doi.org/10.1016/S1474-4422(18)30026-7. Braidotti, R. (2013). The posthuman. London, UK: Polity Braun, V., and V. Clarke. 2019. “Reflecting on Reflexive Thematic Analysis.” Qualitative Research in Sport, Exercise & Health 11 (4): 589–597 Coe, R., M. Waring, L. V. Hedges, and L. D. Ashley 2021. Research Methods and Methodologies in Education. Sage. Goodley, D. & Runswick-Cole K. (2015) Thinking About Schooling Through Disability: A DisHuman ApproachT. Corcoran et al. (Eds.), Disability Studies, 241–253. © 2015 Sense Publishers. Kwiatkowska, G., Tröbinger, T., Bäck, K., & Williams, P. (2012). Multimedia Advocacy: A new way of self expression and communication for people with intellectual disabilities [Conference presentation]. International Conference on Computers for Handicapped Persons (pp. 361–368). https://doi.org/10.1007/978-3-642-31534-3_54 Landfeldt, E., R. Thompson, T. Sejersen, H. McMillan, J. Kirschner, and H. Lochmüller. 2020. “Life Expectancy at Birth in Duchenne Muscular Dystrophy: A Systematic Review and Meta-Analysis.” European Journal of Epidemiology 35 (7): 643–653. https://doi.org/10.1007/s10654-020-00613-8. Moriña, A. 2018. “Using Life History with Students with Disabilities: Researching With, Rather Than Researching on.” Educational Review 72 (6): 770–784. https://doi.org/10.1080/00131911.2018.1550054. Morrow, M. 2004. “Duchenne Muscular Dystrophy—A Biopsychosocial Approach.” Physiotherapy 90 (3): 145–150. https://doi.org/10.1016/j.physio.2004.03.004. Rix Research and Media. (2023). RIX software. University of East London https://rixresearchandmedia.org/software/ Setchell, J., D. Mosleh, L. McAdam, P. Thille, T. Abrams, H. J. McMillan, B. Mistry, B. E. Gibson, and U. O. Abaraogu. 2022. “Enhancing Human Aspects of Care with Young People with Muscular Dystrophy: An Evaluation of a Participatory Qualitative Study with Clinicians.” PLOS ONE 17 (2): e0263956. https://doi.org/10.1371/journal.pone.0263956. Watts, P., Kwiatkowska, G. and Minnion, A. 2023. Using multimedia technology to enhance self-advocacy of people with intellectual disabilities: Introducing a theoretical framework for ‘Multimedia Advocacy’. Journal of Applied Research in Intellectual Disabilities. 36 (4), pp. 739-749. https://doi.org/10.1111/jar.13107