Imagining the impossible: Perspectives from young people with Duchenne Muscular Dystrophy, parents/caregivers and health professionals when preparing for the transition to adulthood

Mrs Tegan Pinese1, Dr Merrill Turpin Merrill Turpin2, Dr Jodie Copley Jodie Copley2

1 School of Health and Rehabilitation Sciences, Graduate School, University Of Queensland, Brisbane, Australia, 2Department of Occupational Therapy, School of Health and Rehabilitation Sciences, University of Queensland, , Brisbane, Australia

Introduction: The transition to adulthood for young people with Duchenne Muscular Dystrophy (DMD) is complex, given they are entering a time when independence is societally expected, yet physical dependence is increasing for them.

Objective: The aim of this study is to explore the perspectives of young people with DMD, parents/caregivers and health professionals when imagining and planning for adulthood, as well as identifying the current processes involved within transition planning.

Methods: An Action Research Approach was used to investigate the perspectives of participants about making the transition to adulthood with DMD. Data was obtained through semi-structured interviews and focus groups. Interviews and focus groups were transcribed verbatim and data analysed using inductive thematic analysis.

Results: Fifty-five participants were included in this research study, with the following key themes identified; 1) working as a team: 2) the transition process: 3) imagining what is possible: 4) the need for information and support: 5) defining a successful transition.

Conclusion: The results of this study highlight the current nature of transition planning for young people with DMD. Imagining what is possible for adulthood and identifying ways in which to achieve desired meaningful outcomes can be challenging for these young people. The challenge for health professionals is learning how best to engage young people with DMD and their parents/caregivers in transition planning discussions in a manner that respects the difficulties with planning for an unknown future. Typical approaches to goal setting within transition planning is likely to not be helpful for these young people, with alternative strategies and approaches required.


Biography:

Tegan Pinese is an occupational therapist and has been working within the field of paediatrics since graduating in 2008. Tegan is currently completing a PhD through the University of Queensland, supervised by Dr Merrill Turpin and Dr Jodie Copley. This research project focuses on the perspectives of young people with Duchenne Muscular Dystrophy (DMD) parents and caregivers and health professionals regarding the transition from adolescence to adulthood for these young people.

NAHC Conferences

2007, Hobart (7th NAHC)

2009, Canberra (8th NAHC)

2012, Canberra (9th NAHC)

2013, Brisbane (10th NAHC)

2015, Melbourne (11th NAHC)

2017, Sydney (12th NAHC)

2019, Brisbane (13th NAHC)

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