An ethical dilemma: how can we authentically represent the voices of disabled children and young people about their views, experiences and choices for participation in recreational activities?

Pickering, Dawn ORCID: https://orcid.org/0000-0003-4779-5616 2018. An ethical dilemma: how can we authentically represent the voices of disabled children and young people about their views, experiences and choices for participation in recreational activities? Presented at: Disabled children research network, University of Nottingham, Ann Craft Trust, 27 Jun 2018.

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Abstract

The context for this ‘VOCAL’ PhD research with disabled children and young people, is the exploration of the emotional wellbeing effects from participation in recreational activities, using a multiple case study design. The literature shows that there are limited choices for this group, suggesting that these lack of opportunities can contribute to a feeling of being marginalised in society. In this study there are seven participants, aged nine to sixteen years all with walking, learning and communication difficulties. Four participated in many recreational activities, whilst three found it much harder. 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 of their usual activities 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 requires anonymization as part of ethical research governance. The challenge is 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. The visual data and field notes were especially useful, from activities such as adapted skiing, touch therapy and surfing. Whilst facial expression can be a good indicator of emotional wellbeing, there were other individualised responses which showed their level of engagement. Whilst valuing their responses, care is being taken to accurately represent their ‘voices’ about the effects of participation. Ethical research protects the identity of the participants, relying upon rich descriptions in the text, rather than the original visual image, thus limiting what can be shared.

Item Type:	Conference or Workshop Item (Paper)
Date Type:	Completion
Status:	Unpublished
Schools:	Healthcare Sciences
Subjects:	G Geography. Anthropology. Recreation > GV Recreation Leisure R Medicine > RJ Pediatrics
Funders:	Chartered Society of Physiotherapy charitable trust
Last Modified:	23 Oct 2022 14:07
URI:	https://orca.cardiff.ac.uk/id/eprint/112828

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