The transition from practitioner to researcher: Physiotherapists undertaking research with disabled children and young people

This chapter will describe the challenges of designing rigorous research studies with disabled children and young people. The issues of gaining consent /assent are explored as well as seeking ways to represent children’s views who do not have spoken language. Ethical issues that impact on the rigour of research studies with children and young people with disabilities will be outlined. Examples of research done with children who have cerebral palsy will be used. This will illustrate decisions not to include children where coercion was felt to take advantage of their vulnerability and assent could not be assumed. Carrying out research with children without the parent’s present was not considered good practice; a discussion around the age for consent will be outlined. Finding ways to manage data protection, lone working and child protection were areas requiring strategies for safe practice. Transferable skills are identified from physiotherapy practise to research, including skills in communicating with children and young people with disabilities and team working. There is a need to recognise that boundaries change when working in different environments. The change of role for the researcher to an ‘enquirer’ of the topic rather than a ‘service provider’ requires some adaption. New skills need to be developed in completing applications for National Research Ethical Service and NHS Trust Research and Development requiring patience and perseverance and infinitely more time than one can imagine.