Improving young people’s engagement during planned spinal consultations: collaborative development of an Adolescent Idiopathic Scoliosis (AIS) consultation facilitation guide.



This proposal was developed through consultation with young people (n=8) who have had AIS and parents of AIS children (n=2). Our PPI work and literature review highlight that the proposed CFG would be welcomed in supporting young people to gain information from their specialist clinician. The CFG will be a simple tool which young people can use, along with their parents, before and during their consultation. This study will be conducted in 2 phases and will provide the foundations (a developed CFG and feasibility study of methods) for a larger grant application to assess the influence of the CFG on clinical practice.

Phase 1
Data will be collected using non-participant video-observation of spinal consultations (n=20) to purposefully sample interactions and decisions regarding diagnosis, monitoring and treatment. With the permission of all those present, a video-recorder will be placed so as to record, but not intrude on the consultation (lens will be covered during physical examinations). Young people (n=20, 13-18 years), their parent/s (n=20-25) and health professionals (n=5) observed during the clinic would then be asked to take part in a short video-elicitation interview (Henry & Fetters 2012). Interviews will involve the consultation recording being shown separately to young people and their parents who are asked to explain what they were thinking – both at the time, and on reflection as they ‘relive’ the consultation. This process will elicit responses on the thoughts, emotions and decision-making processes at specific points in the consultation. The interviews would be audio-recorded, transcribed and analysed using the principles of conversational analysis (Hutchby & Woolfitt 1998) and the PCAT (Howells et al 2010), a valid and reliable tool will be used to assess communication within each triadic paediatric consultation.

Phase 2
In Phase 2 the CFG will be collaboratively developed. Data will be collected through a participatory design workshop (PDW) with young people who have had AIS treatment (n=20), parents (n=10) and health professionals (n=5). PDWs have been used successfully in a variety of situations (Iversen et al 2014). This approach ensures that the young people, in particular, would be able to contribute to the design of the CFG in a collaborative and supportive way (Bergold & Thomas 2012). The PDW would draw on data from the first phase and focus on:-
•‘Content-oriented’ activities - identifying and exploring positive and challenging aspects of consultations and the questions, prompts and phrases used.
•‘Format-oriented’ activities -focusing on the nature, design and format of the CFG.

The PDW will be audio-recorded. Activity work will be photographed and field notes taken by the researchers. Preliminary data analysis will occur within the PDW (Jackson 2008) as the participants make decisions about what is important, not relevant and identify ‘themes of importance’. The final format and content of the CFG will be determined by the PDW; this may be a downloadable pdf, a link to an electronic version or a paper version. After the workshops, the data will be subjected to further analysis to build a deeper understanding of the data.

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