The use of creative case studies to explore non-verbal and non-ambulant children and young people’s well-being

Abstract

Background and purposeThe aim of this paper is to describe and critically analyse creative research methods, exploring how these can offer ways to enable non-verbal and non-ambulant children and young people with cerebral palsy, to express their views about their well-being. The context of this research explored their choices for recreational activities, seeking to understand how their level of participation impacted upon their well-being. MethodsA qualitative comparative case study design was chosen comprising of two interviews, using photographs and diaries to elicit discussion, supported by observations. These observations provided evidence of well-being indicators that were interpreted by the researcher, alongside their parents. Seven participants volunteered, aged nine to sixteen years. Data were analysed utilising Braun and Clark’s six stages. Firstly, each case’s data sources were coded, themes identified, then across cases comparisons, arriving at three final themes. Triangulation of data sources which made up each case, enhanced the trustworthiness in this study. ResultsObservations were key to providing insight into their well-being. Interpretation of this rich data, supported by their parents, revealed that the participants could self-advocate, as shown by their intentional behaviours, to choose their level of participation. DiscussionThe researcher’s ability to be creative in the data collection methods is original in physiotherapy. It was important to work in partnership with parents, to ensure the correct interpretation of their intentional behaviours from the observations. The diaries and photographs added a unique contribution to knowledge, which enabled the non-verbal participants inclusion, empowering them to express their well-being. Study registrationThis study is registered with the International Study + Clinical Trials Network Register (ISRCTN) Number:42717948. Contribution of paper•This creative approach to a qualitative case study design has offered a new way to explore the well-being of participants who would not be able to carry out a typical interview. In this case it was with non-verbal and non-ambulant children and young people with complex cerebral palsy. The data has illustrated how they can be empowered to indicate their well-being, as their own advocates. It is important this work continues to provide deeper insight into this under-reported group. Physiotherapists should consider how they can include other non-verbal populations in research.•Physiotherapists who work with non-verbal children and young people with complex disabilities, need to find a way to hear their voices. A creative qualitative case study design offers this flexibility and should be considered as an authentic method for data collection in future studies. Children and young people with complex disabilities deserve to see themselves represented in research.•Physiotherapists are unlikely to work alone to achieve advocacy on behalf of non-verbal populations. Teamwork with designers, illustrators and town planners can contribute to move this agenda forwards. This can then increase the choices and opportunities for disabled children to enhance their well-being.