{"id":335,"date":"2025-03-10T09:18:58","date_gmt":"2025-03-10T09:18:58","guid":{"rendered":"https:\/\/sites.exeter.ac.uk\/per\/?p=335"},"modified":"2025-07-17T09:25:44","modified_gmt":"2025-07-17T09:25:44","slug":"exploring-experiences-and-support-preferences-of-children-and-young-people-on-neurodevelopmental-assessment-waiting-lists-in-devon","status":"publish","type":"post","link":"https:\/\/sites.exeter.ac.uk\/per\/2025\/03\/10\/exploring-experiences-and-support-preferences-of-children-and-young-people-on-neurodevelopmental-assessment-waiting-lists-in-devon\/","title":{"rendered":"\u200bExploring Experiences and Support Preferences of Children and Young People on Neurodevelopmental Assessment Waiting Lists in Devon"},"content":{"rendered":"\n

Dr<\/strong> Anna Price from the department of Health and Community Sciences speaks to us about her recent project, which investigates the perspectives of young people seeking neurodevelopmental assessment through Devon’s healthcare providers. Supported by Patient and Public Involvement and Engagement (PPIE) funding, her experience highlights the complexities of patient outreach work, including both its challenges and benefits. <\/strong><\/p>\n\n\n\n

\u200bAmount of award: \u00a31000<\/p>\n\n\n\n

In recent decades, challenges to healthcare delivery for people with neurodevelopmental conditions have left many families waiting for years without any support prior to diagnosis. As many local providers consider moving to more individual-centred approaches with less focus on diagnostic labels, there is little knowledge of stakeholder perceptions about these changes, and what \u201cwaiting well\u201d looks like. We aimed to engage a PPIE panel to ensure future research will address the concerns of young people and their supporters, helping make any changes to neurodevelopmental pathways acceptable to those accessing them.<\/p>\n\n\n\n

We aimed to recruit people aged 12-25 (or their supporters), who were or had recently been on a waiting list in Devon for a neurodevelopmental condition assessment, to an in-person panel to explore their experiences Our stakeholder-developed topic guide focussed on desired outcomes from a neurodevelopmental diagnosis; the impact of waiting times; current support needs; and support\/resources to help people \u2018wait well\u2019. We planned a scenario-based discussion on Devon\u2019s plans for needs-based assessment. We tailored activities to meet the population\u2019s accessibility requirements. For example, a post-discussion debriefing activity provided an opportunity for panel members to share experiences that may have been important to them, but which may not have been prioritised during the panel.<\/p>\n\n\n\n

Despite a detailed recruitment plan, we failed to engage enough panel members for the discussion. After changing the in-person meeting to an online format, then offering one-to-one interviews, and expanding our age-range, we still had limited success. Finally, we transformed the topic-guide into a long-form questionnaire which was emailed to people who expressed interest.<\/p>\n\n\n\n

During recruitment, we heard that parents\/supporters of children on waiting lists felt burnt out and had no time to commit to a discussion. Recruiting during school exam season may also have affected young people\u2019s participation. This was our first attempt to engage with people on a waiting list for assessment, rather than those with confirmed diagnoses, revealing that this group may require more support to engage in research. We have refined our recruitment strategy and inclusion criteria for future work with this population. Future work must include sufficient funding so that skilled researchers have time to overcome challenges and successfully engage with and support this underserved group, who are likely to be struggling with multiple life challenges.<\/p>\n\n\n\n

Our team has benefitted from this engagement research in multiple ways, including:<\/p>\n\n\n\n