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Travlos V.1, Downs J.2,3, Bulsara C.4, Wilson A.5, Patman S.1
1University of Notre Dame Australia, School of Physiotherapy, Fremantle, Australia, 2Telethon Kids Institute, Population Sciences, Perth, Australia, 3Curtin University, School of Physiotherapy, Perth, Australia, 4University of Notre Dame Australia, School of Nursing and Midwifery, Fremantle, Australia, 5Princess Margaret Hospital, Respiratory Medicine, Perth, Australia
Background: Youth with Neuromuscular Disorders (NMD) who are wheelchair users can now survive well into adulthood if their multisystem cormobidities are prudently managed. Management may be compromised through the period of transition from paediatric to adult care, due to factors both within youths' personal context and within their healthcare provision. Uptake of health behaviors that optimize health outcomes through transition to adulthood may be related to healthcare engagement.
Purpose: The MyLifeMyVoice research explored youths' perceptions of health, health behaviors and healthcare engagement.
Methods: This qualitative study purposefully recruited 11 youth with NMD from a concurrent, population-based study for variability of age, gender, type of NMD and their ratings of motivation and engagement. Semi-structured interviews were conducted face-to-face or via Skype. Data were analyzed and synthesized by thematic content.
Results: Participants perceived healthcare engagement as being given tools (knowledge and responsibility) and using them to maintain their finely balanced health. Participants took responsibility for creatively integrating health behaviors they felt were informed by credible knowledge, gained primarily through personal experience. Nested in adequate social, emotional and physical support, youth with NMD valued open communication and shared learning and responsibility to manage their rare condition.
Conclusion(s): Cognizant of their compromised health, youth with NMD in this study were motivated to maintain their physical health. Limited NMD condition specific knowledge challenged youths uptake of health behaviors. They valued a learning partnership with their healthcare professionals.
Implications: Healthcare professionals co-construct youths healthcare engagement.
Uptake and maintenance of health behaviours is likely optimised through facilitating supportive relationships and by embracing the youths experience based knowledge.
Funding acknowledgements: Muscular Dystrophy Western Australia Harold & Sylvia Rowell PhD Scholarship. Collaborative Research Network top-up Scholarship University of Notre Dame Australia.
Topic: Paediatrics
Ethics approval: University of Notre Dame Human Research Ethics Committee (R0144121F).
All authors, affiliations and abstracts have been published as submitted.
