The transitional journey from practice to research to hear the ‘voices’ of children and youth with Cerebral Palsy about adapted cycling

Exploring different perspectives about adapted cycling with 35 children and youth with Cerebral Palsy (CP) was a challenge. The journey starts with the transition from a practising physiotherapist to a researcher. This involved a paradigm shift in what would have previously been a therapeutic relationship with the child and family. The partnership of care and service delivery becomes a different partnership in research. Here the child and family are the key players, whose experiences you want to explore and capture. The former role of physiotherapist, delivering a package of care, treatment and advice changes into a researcher, an enquirer of hidden perspectives. The communication skills and empathy developed in clinical practice helped bridge this gap between the two areas. The researcher may want to hide their professional identity for fear of biasing what the child, young person or parents will talk about. There is a sense of vulnerability for the researcher exploring new territory beyond what was previously comfortable in clinical practice. The limitation of this is less knowledge about the child’s abilities in order to explore their views and experiences. Whilst therapeutically, postural alignment would be part of treatment, the postures the children chose to adopt during interviews were less than ideal. This resulted in an internal conflict of emotion debating internally the ethics of whether to say anything during the interview. The creative methods had to be adapted due to difficulties with fine motor control and balance and this journey taught us so much about hearing and representing their ‘Voice’. Parents take advantage of having an experienced clinician to discuss their wider concerns and particular advice was sought about schools and treatment approaches. It was hard to remain neutral if you had particularly strong feelings about their proposed course of action. It helped to focus on the objectives of the research and to manage the interview accordingly. At one point video recordings were used especially to try and capture the responses to cycling pictures for those children with non-verbal communication. This proved to be very invasive and stunted the flow of the interview and was discontinued after a particular interview where the researcher felt unwelcome by this intrusion into the family’s home. In the second part of the study the researcher visited families where information was given about adapted cycling and children were given a diary to record their physical activities. ‘Ghost’ aged 10, living in relative poverty, was thrilled with this dairy, saying he had always wanted one. He did complete it and the family wrote to say he was now cycling to school. The impact of that change in behaviour for that one disadvantaged child was emotional for all the team. ‘May’ also aged 10, described a humiliating cycling school trip which made the researcher feel sad during the interview. The journey to explore these experiences of adapted cycling was enriching and the diaries especially had an emotional impact. This researcher’s journey has not yet finished as the impact of adapted cycling will be explored further