Dr 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.
Amount of award: £1000
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 “waiting well” 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.
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 ‘wait well’. We planned a scenario-based discussion on Devon’s plans for needs-based assessment. We tailored activities to meet the population’s 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.
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.
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’s 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.
Our team has benefitted from this engagement research in multiple ways, including:
- understanding recruitment and engagement challenges for this population
- developing a topic guide, refined by researchers, clinical leads, and an expert by experience
- summarising preliminary findings and perspectives from the individuals we engaged with
- identifying skills and resources necessary for engaged research with this underserved community
- facilitating collaborations and engagement with related projects to continue this important work
Our short-term goal is to engage more effectively with people with experience of waiting for a neurodevelopmental assessment, and continue to learn about their priorities, needs, and preferences. Long-term, we aim to deliver inclusive co-production research that will help to overcome local and national challenges in health and social care for neurodiverse children and young people. We hope to connect people’s lived experiences to clinical and commissioning partners to deliver collaborative projects, helping develop a service led not by diagnostic thresholds, but by public need for timely support.
Dr Anna Price worked alongside Dr Silvana Mareva, Dr Anna Adlam, Dr Helen Brewer, and Becky Gudka.