Mark Whiting identifies factors that help parents to make sense of their situation and discusses the importance of good communication by health professionals supporting families, especially when delivering an initial diagnosis

Aim To explore how parents of children with disabilities and complex health needs make sense of the circumstances in which they find themselves.

Method A series of in-depth semi-structured interviews were undertaken with the parents of 34 children (from 33 families) with a disability or a complex health need. The families were nominated by health professionals to one of three study subgroups: children with a disability, children with a life-limiting or life-threatening illness, or children with technology dependence. Interviews were recorded and transcribed.

Findings Analysis of parents’ responses related to sense-making revealed two main categories: ‘diagnosis’ and ‘personal, cultural and personality factors’. These two categories alongside the two other main study themes, ‘impact’ and ‘need for help and support’ reported in the previous two articles in this series – linked into a final study theme: ‘battleground’.

Conclusion For the parents of children with complex health needs and disabilities, the sense that they make of their situation plays a pivotal role in determining how parents experience the impact of disability and the need for help and support.