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Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency
D Watson1, D Abbott, R Townsley
1Norah Fry Research Centre, University of Bristol, Bristol, UK. debby.watson@bris.ac.uk
Insights
Involving children with complex healthcare needs in research and services is possible with sensitive, flexible approaches. While multi-agency working improves outcomes, gaps remain in communication, independence, and relationship support for these children.
Area of Science:
- Healthcare research
- Child development
- Social services
Background:
- Children with complex healthcare needs often face exclusion from research and service consultations.
- A 3-year study explored innovative methods to involve these children in research and assess multi-agency service impacts.
Purpose of the Study:
- To investigate innovative methods for involving children with complex healthcare needs in research.
- To evaluate the impact of multi-agency working on children with complex healthcare needs.
- To identify challenges and benefits in child participation in research and services.
Main Methods:
- Researchers engaged with 18 children with complex healthcare needs using diverse, sensitive methods.
- Advocates, primarily parents, were crucial for children lacking verbal communication.
- The study focused on understanding the children's experiences with multi-agency services.
Main Results:
- Children with complex healthcare needs can participate in research when studies are designed sensitively and flexibly.
- Multi-agency working led to significant improvements, with most children living at home and attending school.
- Gaps persist in addressing children's human rights regarding communication, independence, and relationships, and direct consultation effectiveness was limited.
Conclusions:
- Involving children with complex healthcare needs in research and service delivery shows progress but requires further development.
- Despite considerable challenges, the benefits of listening to children, parents, and carers are substantial.
- Continued efforts are needed to ensure comprehensive inclusion and address human rights gaps for this population.
Background:
Children with complex healthcare needs are often excluded, both from active involvement in research projects and from direct consultation in services. During a 3-year research study into multi-agency services for children with complex healthcare needs, the authors involved children in a number of innovative ways and endeavoured to discover what impact, if any, multi-agency working made to them.
Methods:
The researchers 'spent time' with 18 children with complex healthcare needs. They used a variety of methods to engage with the children in a meaningful way. More than half of the children had no verbal communication, so it was necessary in some cases to work with an advocate, usually the parent, to aid the process.
Results:
Children with complex healthcare needs can take part in research as long as the research is set up sensitively and flexibly. In terms of the impact of multi-agency working, the authors concluded significant advances had been achieved for this group: almost all the children were living at home and attending school. However, there were significant gaps in addressing children's human rights in relation to communication, independence and relationships. In addition, many of the children had very little effective direct consultation with the multi-agency services.
Conclusions:
There are significant advances in involving disabled children in research and in service delivery, but there is still some way to go in involving those with complex healthcare needs. The challenges are considerable, but the benefits far outweigh these, not least being the value that parents, carers and the children themselves place upon being listened to.
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