Related Experiment Video
Updated: Apr 28, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
What it means to be the parent of a child with a disability or complex health need
1Peace Children's Centre, Watford.
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.
More Related Videos
Related Concept Videos
Learning Disabilities
Dyslexia
Dyslexia is a...
Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
Relationship with Other Adult Family Members and Siblings
Intellectual Disability
Parental Care
Parenting Styles
Authoritarian Parenting
This style is strict and controlling, with little room for open dialogue. Authoritarian parents demand obedience and often enforce rules with minimal warmth. Children raised this way may lack social skills and initiative, usually comparing themselves to others unfavorably.
Authoritative...

