Enhancing family resilience
Parents of children with physical disabilities have to help their children cope with many challenges, and as parents they have their own challenges too. As such a parent herself, Barbara Fogarty was interested to unpack parents' lived experiences, to understand how they cope in order to help other parents.
Eight families volunteered to participate in Barbara's research and her interviews with them revealed a wealth of information about coping strategies. The challenges they faced fell into three main areas: navigating the education system, impact on family life, and negotiating support from relevant agencies.
Barbara found there were some common things that helped parents:
- Keeping family routines going
- Working towards systemic change, to improve the level and coordination of support
- Self-care
- Giving to other parents, so networks were very important.
During her research Barbara's thinking moved from an individual perspective to a more social-ecological perspective. Factors in the environment can be supportive or detrimental to parents' coping. For example government funding is continually reviewed so parents need to keep justifying their child's ongoing need for support even when the child has a degenerating condition. Barbara is sharing her research with relevant agencies nationally and internationally to help improve support for disabled children and their parents.