Supporting families of children with an undiagnosed genetic condition: using co-design to ensure the right person is in the right post doing the right job.

BACKGROUND: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to: managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co-design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. OBJECTIVES: 1) To understand what families and hospital staff want from the service; 2) To understand how the post should be operationalised in practice; 3) To develop the job description and person specification for the post-holder. METHODS: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analysed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the post-holder's job description and person specification. RESULTS: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. CONCLUSIONS: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co-designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co-design, in terms of time and finances. We believe that the resources required for the co-design are offset by the advantages of having the right person in the right post, doing the right job.