What it means to be the parent of a child with a disability or complex health need
Mark Whiting Consultant nurse, children’s community and specialist nursing, Peace Children’s Centre, Watford
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.
Nursing Children and Young People.
26, 5, 26-29.
doi: 10.7748/ncyp.26.5.26.e390
Correspondence
mark.whiting@hchs.nhs.uk
Peer review
This article has been subject to open peer review
Conflict of interest
None declared
Received: 17 April 2013
Accepted: 06 December 2013
Want to read more?
Already have access? Log in
or
3-month trial offer for £5.25/month
Subscribe today and save 50% on your first three months
RCNi Plus users have full access to the following benefits:
- Unlimited access to all 10 RCNi Journals
- RCNi Learning featuring over 175 modules to easily earn CPD time
- NMC-compliant RCNi Revalidation Portfolio to stay on track with your progress
- Personalised newsletters tailored to your interests
- A customisable dashboard with over 200 topics
Subscribe
Alternatively, you can purchase access to this article for the next seven days.
Buy now
Are you a student? Our student subscription has content especially for you.
Find out more