What’s involved:

If you are 14-19 years old during the study period Feb 2014-Feb 2016,

that is your birthdate is between 1st Feb 1994 to 28th Feb 2002,

use a wheelchair and are living with NMD in Australia or New Zealand,

you may receive a flyer/e-mail about the MyLifeMyVoice study between Sept 2014 until Dec 2015.

If you are interested in taking part in this research, let us know on mylifemyvoice@nd.edu.au.

What’s involved?

Participation will involve completion of the “My LIFE My Voice” Adolescent and Family Questionnaire (AFQ). There are separate questions for teenagers and for parents/primary carers. Most of the questions are answered by marking a box.

A small number of participants will be invited to participate in interviews with the researcher.

The MyLifeMyVoice AFQ:

The AFQ can be completed on paper or online, in parts or in one go, independently or with assistance from Vivienne or study volunteer, at a time convenient to you (ie not in the middle of tests or exams, so there is no pressure on your schoolwork or other activities).

Questions in Booklet 1 are for teenagers and ask about movement and the body. With Vivienne’s help or with help of a study volunteer, these questions will take about 1 hour.

Booklet 2 is for teenagers to complete on their own. Questions ask about friends, recreation, school, motivation, feelings and family life and will take about 40min.

Booklet 3 is for a parent/primary carer and will take about 20min. Questions ask about the teenager’s sleep, family support and feelings.

What happens after?

We will let you know the overall results. We will keep your de-identified information safe. We will offer other researchers to use de-identified data so teenagers and families do not have to answer the same questions again. We may ask you in the future if you would like to take part again, so we can learn from you about your journey to adulthood.


Interviews will be at a time and place convenient to the participant, which may be over Skype. Interviews will take about 45min.


To thank you for your time and effort to help with this research and answer the AFQ, we’d like to offer iTunes or JB HiFi gift vouchers for completed questionnaires.

The following video was made by young people deciding to be part of research. E-mail me, Vivienne, with any questions on mylifemyvoice@nd.edu.au