Are you a parent who cares for a child or children (including adult children) affected by a genetic condition that requires high-level care in order to meet their basic daily needs? If so, our research team from the Faculty of Education and Social Work, University of Sydney, would love to hear from you!
The study will explore the relationships that parents have with the many services they are in contact with as a result of their caring role (for example health, education, disability, finance, employment), to guide future policies that affect fathers and mothers who are caring for children with high-level additional care needs.
We understand that your time is precious. Taking part in the research will involve approximately 1-1.5 hours to meet with our researcher, Pam Joseph, to talk about your experiences and complete a 'map' of the services that you are in contact with. There will be an opportunity for you to provide additional information after this meeting if you wish to.
This study is open to parents located anywhere in Australia. We are keen to hear from fathers as well as mothers, and step-parents are also welcome to participate. Where more than one parent from a family participates, separate interviews will be held. Due to a potential conflict of interest for one of the researchers, families affected by leukodystrophy or leukoencephalopathy (a group of conditions affecting the white matter of the central nervous system) are not able to take part in this study.
If you know someone who might like to take part but who speaks a language other than English, translation and interpreters can be arranged.