Friends and Family MAKE THE DIFFERENCE

This research paper summarizes the most important findings of the MyLifeMyVoice participants’ questionnaires. It was published by the foremost journal read by clinicians in the Neuromuscular World. Thank you to the reviewers and editors, and especially to our research participants, for sharing what makes the difference to mental wellbeing in young people with NMD.

Travlos V, Downs J, Wilson A, Hince D, Patman S. Mental wellbeing in non-ambulant youth with neuromuscular disorders: what makes the difference? 2019;29(1):48-58. https://doi.org/10.1016/j.nmd.2018.08.013

Research Posters

Here are young people’s thoughts about health and learning about health when you live with NMD. And after crunching lots and lots….and lots  of numbers…Friends make the difference to health in young people.

Youth VOICE

these-are-the-words-of-young-people who participated in research interviews. The research method used qualitative inquiry, exploring subjective experiences utilizing procedures scientifically recognized as rigorous and trustworthy. We hope that their words will resonate with young people living with many other rare and complex health conditions.

A sincere thank you to all participants.

Travlos V, Bulsara C, Patman S, Downs J. A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with neuromuscular disorders. NeuroRehabilitation. 2016;39(4):519-34. https://doi.org/10.3233/nre-161383

 Summary of research describing Quality of Life and Wellbeing

Our systematic review of research published before the MyLifeMyVoice study gives us a helpful base upon which to build future research.

Travlos V, Patman S, Wilson A, Simcock G, Downs J. Quality of life and psychosocial wellbeing in youth with neuromuscular disorders who are wheelchair users: A systematic review. Arch Phys Med Rehabil. 2017;98(5):1104 – 017. https://doi.org/10.1016/j.apmr.2016.10.011