A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders.
BACKGROUND
Youth with Neuromuscular Disorders (NMD) who are wheelchair users can now survive well into adulthood if their multisystem comorbidities are prudently managed. Uptake of health behaviors may optimize their health outcomes.


OBJECTIVE
To explore 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. Interview 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. Nested in adequate social, emotional and physical support, they took responsibility for creatively integrating health behaviors they felt were informed by credible knowledge, gained primarily through personal experience.


CONCLUSIONS
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. By embracing the youth's experience based knowledge and through facilitating supportive relationships, healthcare professionals co-construct youth's healthcare engagement that may optimize health behaviors and outcomes.
School of Physiotherapy, The University of Notre Dame Australia, Perth, WA, Australia.
Vivienne
V
Travlos
School of Nursing and Midwifery, The University of Notre Dame Australia, Perth, WA, Australia.
Caroline
C
Bulsara
School of Physiotherapy, The University of Notre Dame Australia, Perth, WA, Australia.
Shane
S
Patman
Telethon Kids Institute, Perth, WA, Australia.|School of Physiotherapy and Exercise Science, Curtin University, Perth, WA, Australia.
Jenny
J
Downs
D000293:Adolescent; D005260:Female; D006801:Humans; D007858:Learning; D008297:Male; D009468:Neuromuscular Diseases / Q000523:psychology* / Q000534:rehabilitation*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D010358:Patient Participation / Q000379:methods / Q000523:psychology*; D036301:Qualitative Research; D055815:Young Adult
Adolescents/youth/young people; health education; healthcare engagement; neuromuscular disorders; perceptions/experiences