Watson D, Abbott D, Townsley R
Norah Fry Research Centre, University of Bristol, Bristol, UK.
Child Care Health Dev. 2007 Jan;33(1):90-5. doi: 10.1111/j.1365-2214.2006.00670.x.
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.
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.
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.
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.
有复杂医疗需求的儿童往往被排除在外，既无法积极参与研究项目，也无法直接接受服务咨询。在一项针对有复杂医疗需求儿童的多机构服务的为期3年的研究中，作者以多种创新方式让儿童参与进来，并努力探究多机构合作对他们产生了何种影响（若有影响的话）。
研究人员与18名有复杂医疗需求的儿童“共度时光”。他们运用多种方法以有意义的方式与儿童互动。超过半数的儿童无法进行言语交流，因此在某些情况下有必要与倡导者（通常是家长）合作以推动这一过程。
只要研究的设置敏感且灵活，有复杂医疗需求的儿童就能参与研究。就多机构合作的影响而言，作者得出结论，该群体已取得显著进展：几乎所有儿童都在家居住且上学。然而，在解决儿童在沟通、独立和人际关系方面的人权问题上存在重大差距。此外，许多儿童与多机构服务之间几乎没有有效的直接咨询。
让残疾儿童参与研究和服务提供有显著进展，但让有复杂医疗需求的儿童参与仍有很长的路要走。挑战巨大，但益处远大于这些挑战，尤其是家长、照料者和儿童自身对于有人倾听他们的声音所赋予的价值。
