Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services.

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.