An ethical dilemma: How can we authentically represent the voices of disabled children and young people who use communication aids?

Children and youth with cerebral palsy, who use communication aids, are underrepresented in the literature. It takes more effort to engage with them in an interview; however by using visual methods it is possible to capture their experiences and choices. The researcher explored the emotional wellbeing effects of participation in recreational activities with seven participants, aged nine to sixteen years with walking, learning and communication difficulties, using a multiple case study design. Three participants used communication aids, including iPads and Eye Gaze technology. Ongoing assent was presumed if they engaged with the researcher in some form of dialogue during the interviews. Four did not have a reliable means of communicating, so observation was used in combination with interviews with their parents. Two interviews were carried out and a diary of recreational activities kept for the intervening twelve weeks. The diary and observations included visual images which required anonymization as part of ethical research governance. The challenge was to authentically represent their experiences whilst maintaining their anonymity. The researcher used an inductive approach to analysis to draw out evidence of participants’ emotional wellbeing from the data. These included expressions of creativity, happiness and disinterest. Whilst facial expression can be a good indicator of emotional wellbeing, there were other individualised responses which alluded to mood and level of engagement. Whilst valuing their responses, care was taken to accurately represent their ‘voices’ about the effects of participation. Ethical research protects the identity of the participants but that can limit what can be learnt