• The Project

    For young people with Duchenne Muscular Dystrophy (DMD), making the transition to adulthood may be particularly difficult. Young people with DMD are not only facing the life changes associated with becoming adults; they are also coping with the physical and emotional challenges associated with the condition.
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Project DMD Duchenne Muscular Dystrophy

The Research Project

Project DMD is the title given to the research project currently being completed as part of a PhD through the University of Queensland. This research project started in 2012 and is exploring how young people with Duchenne Muscular Dystrophy can be supported to imagine and work towards a meaningful adulthood.

The research project has received ethical approval through the University of Queensland Behavioural and Social Sciences Ethical Review Committee (Reference No. 2012000646).

This research project is made up of three individual phases.

 
Project DMD Duchenne Muscular Dystrophy.

Phase One

  • A total of 55 participants were interviewed.
  • 14 young people aged 14 to 25 years, 12 parents/caregivers, and 29 health professionals.
  • We wanted to learn about the experiences of young people with DMD when preparing for adulthood.
  • We also wanted to explore what happens during the transition to adulthood - eg the transition process, barriers/challenges and support required.
  • Key points of information we learnt from the interviews;
    • It is difficult to plan for adulthood when the future is unknown.
    • It can be helpful to start thinking early on about how the young person will spend their time and what supports/services might be required once they leave school.
Project DMD Duchenne Muscular Dystrophy.

Phase Two

  • Tools and resources to assist young people with DMD and their families with preparing for adulthood will be developed.
  • Transition Planning Questionnaire - to help with conversations with young people about planning for adulthood.
  • DMD Transition Video - to provide information about what is possible for adults living with DMD.
  • Transition to Adulthood Resources - to provide information about the transition planning process and assist with planning for adulthood.
Project DMD Duchenne Muscular Dystrophy.

Phase Three

  • Resources will be trialed with young people with DMD who are still in high school.
  • We will then ask for feedback about the usefulness of the resources in assisting with imagining and planning a meaningful adulthood.
  • The resources will then be reviewed and adapted.
 

The Research Team

Project DMD is being coordinated by Tegan Pinese, as part of a Doctorate of Philosophy through the University of Queensland. Tegan is supervised by Dr Merrill Turpin and Dr Jodie Copley.

Tegan Pinese is an occupational therapist working for MontroseAccess on the Sunshine Coast. At the end of 2011, Tegan was awarded the MontroseAccess Master’s Scholarship which provided her with funding and allocated hours to undertake a Masters Research Degree. In 2012, Tegan began this research project as part of the Masters Degree. In 2014, the research project was upgraded to a PhD.

 

Principal Investigator & Project Coordinator

Tegan Pinese
Occupational Therapist
University of Queensland Research Candidate
Ph. 0438 738 542
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Co-Investigators

Dr Merrill Turpin
Division of Occupational Therapy
School of Health and Rehabilitation Sciences
The University of Queensland
Ph. (07) 3365 6491
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Dr Jodie Copley
Division of Occupational Therapy
School of Health & Rehabilitation Sciences
The University of Queensland
Ph. (07) 3365 3011
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Montrose

Montrose has been a key supporter of Project DMD. Montrose is an independent, not for profit organisation providing therapy and respite services to children and young adults with physical disabilities throughout QLD. Montrose has been instrumental in getting this research project up and running, including contributing research funds through the Master’s Scholarship and assisting with recruitment of participants for the first stage of the research project. 

 www.montrose.org.au

Becoming an Adult

For young people with Duchenne Muscular Dystrophy (DMD), becoming an adult brings with it challenges. Young people with DMD are not only facing the life changes associated with becoming adults; they are also coping with the physical and emotional challenges associated with the condition. Due to medical advances and treatments, young people with DMD are living longer and reaching adulthood.

It can be difficult to think about the future when living with a disability, however it is important to take the time to think about adulthood. For young people with DMD there can be more steps involved in planning for life after school.

Planning for Adulthood

What will I do when I leave school? Will I live at home or move out? What sorts of things will I do with my friends? How will I get around in the community? These are all questions young people might find themselves needing to answer when thinking about leaving school and entering adulthood.

Growing up there are many changes that we experience. Starting school, moving to high school and then moving into adulthood. These changes are called ‘transitions’. Transition planning involves thinking about and preparing for life after school and into adulthood. It can involve;

  • talking with young people about what their hopes and dreams for the future may be.
  • Setting clear goals and actions to achieve these goals.
  • Developing skills and confidence in making decisions and choices.
  • Linking young people with community agencies and support services for adulthood.
  • Planning and preparing for the transfer from paediatric to adult health services. 

When should I begin planning for the transition to adulthood?

Initial conversations might begin around 13 or 14 years of age. This might involve talking about what the young person might like to do once they have left school, or what their hopes/dreams for the future might be.

Questions to ask;

  • How I might spend my time once I finish school?
  • What is important to my family and me?
  • Who will assist me with day-to-day activities and provide the care I require?
  • What services or equipment will I require in adulthood?
  • What funding will I need to be able to do the things I would like to do in adulthood?
  • Who will coordinate my medical care when I am an adult?
  • How can I develop some independence away from my parents & carers in adulthood?

 

 

What Our Participants Are Saying

  • Researcher: And what does that bring to your life, being able to get out and about in the community?
    Young Person (22 years) Well, it makes me feel a bit more independent, to be able to go out and do things that I want to be able to do.
  • Researcher: How do you create independence here at home for yourself?
    Young Person (22 years): I guess just going out on my own, getting a taxi on my own. Being moved out –we’ve got a garage room and that’s more removed from the house, so I’ve got my own entrance and exit and I can go out without telling someone, if I wanted.
  • Researcher: What would having a job mean to you?
    Young Person (25 years old): More acceptance for myself, next time people see another person with a disability in the street they might not write them off straight away, they’ll give them a chance to prove themselves like I wanted. Even if I didn’t get that myself I feel that it might make it easier for someone else to follow along my path or to just don’t care what people think and just do what you want to do.
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