Coping strategies of children living with a genetic muscular disorder in New Zealand

Contact: Dr Kelly Jones – kelly.jones@aut.ac.nz

The Prevalence and Impact of Genetic Muscle Disorders in New Zealand study (MD-PREV) was established to determine the number of adults and children living with a genetic muscle disorder in New Zealand and the impact of conditions on them and their families. Led by Associate Professor Alice Theadom and funded by the Health Research Council of New Zealand and the Brendal Trust, the MD-PREV study included the examination of children’s approaches to coping, including problem and emotion-focused strategies.

There is limited literature regarding the specific coping strategies of children living with a genetic muscle disorder. The current project, based on a secondary analysis of data from the NZ cohort, aims to determine the types of coping strategies used and the ways in which coping strategies may be associated with children’s quality of life.

Key research questions include:

1. What types of self-reported coping strategies do children living with a genetic muscular disorder use?
2. To what extent do children’s coping strategies differ by age, gender and ethnicity?
3. In what ways are children’s coping strategies associated with parent and child self-reported quality of life?

Lead:   Aaron Anand

Co-supervisors include:

• Dr Kelly Jones (AUT University)
• Dr Charmaine Bright (AUT University)