{
  "abstract": "Background The Neurodisability (NDS) stream is a specialist assessment service within GOSH. The stream was keen to explore what service-related research families attending clinics would prioritise. This would inform NDS’s future research activity. In line with best practice and principles of co-production, it was fundamental that families were involved from the start of the project, working alongside the research leads in development and implementation.Methodology Following consultation with GOSH PPIE, over a period of three weeks a desk was set up in the waiting area of Cheetah outpatients, where the majority of NDS clinics are held. Using a variety of questionnaire formats and resources to support accessibility and engagement, a member of staff invited families to share their ideas and opinions about what NDS should focus service development research on. In addition, families could use a QR code on an information leaflet to share their thoughts at a later date, if they wished to do so.Results Several families completed questionnaires; expressing interest in sharing ideas and being involved in the project. However, engagement was not as high as anticipated. Since most NDS clinics entail long, in-depth appointments (typically half or whole day clinics), few NDS families visit Cheetah per day. This means we could only engage one or two families per day, which impacted uptake. Assessment days are busy, and for many families their focus is their appointment and emotions relating to this. Cheetah outpatients can be noisy and busy, without space for private discussions. This possibly discouraged engagement too.Conclusion There is interest in co-production and involvement in service-related research, however, we need to continue to work with the PPIE team, the GOSH voice coproduction community and stakeholder organisations to ascertain best ways to involve families in a meaningful and accessible way.",
  "authors": [
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Lisa Brosh"
    },
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Amy Van Der Velden"
    }
  ],
  "title": "113 Family involvement in the development of service and research priorities within GOSH neurodisability",
  "uid": "321a735a-7ccb-5481-891c-fb1fcd6a37a8"
}