NeuroConverse

“What I Would Like to Say…”: The effectiveness of the BU PIER Community Researcher Model on capturing the voices of disabled peoples’ experiences of cancer services in the UK

Katie Munday — 2026-10-17

Disabled people experience persistent inequities in accessing cancer screening, diagnosis, treatment, and care in the UK, shaped by structural ableism and inaccessibility. These inequities contribute to delayed diagnosis, reduced uptake of screening programmes, and poorer experiences of cancer care when compared with non-disabled populations. Despite this, disabled people remain underrepresented in health and social care research, often due to inaccessible research processes and limited opportunities for meaningful involvement. This paper reflects on the effectiveness of the Bournemouth University Public Involvement in Education and Research (BU PIER) Community Researcher Model in capturing and representing disabled people’s cancer service experiences.

The BU PIER Community Researcher Model is an asset-based participatory framework designed to build research capacity within voluntary and community sector organisations by supporting individuals with lived experience to lead research in partnership with academic and clinical stakeholders. This model was applied within the 10-month pilot study ‘What I Would Like to Say…’, commissioned by Macmillan Cancer Support and Wessex Cancer Alliance. The project was led by two community researchers with lived experience of disability and neurodivergence, supported by university researchers, a cancer clinical nurse specialist, and voluntary sector partners.

Data were generated through four face-to-face arts-based workshops involving 45 disabled and neurodivergent participants. Creative methods were used to support accessible engagement with a sensitive topic, enabling participants to share their experiences through handprint artworks and informal semi-structured discussions. Data were analysed using collaborative thematic analysis integrating lived experience, clinical, and academic perspectives.

Findings indicate that the BU PIER Community Researcher Model was effective in eliciting rich, nuanced accounts of cancer service experiences. Three key themes emerged: the importance of accessibility (including financial and environmental adjustments), the value of creating a relaxed and supportive environment, and the need for participants to feel listened to and valued. Shared lived experience within the research team was central to trust-building and participant engagement. The paper concludes that the BU PIER Community Researcher Model offers an effective approach for inclusive research with disabled communities and has the potential to inform improvements in equitable cancer service provision.

Same Food as Self Care

Scott Neilson — 2026-10-17

Autistic people often have strong, enduring preferences for specific ‘same foods’. These foods are eaten repeatedly due to sensory, emotional, or practical benefits. While such eating patterns have been discussed in research, they are frequently framed through a deficit lens and rarely centre Autistic perspectives. This article reports on community perspectives revealed during the ‘Same Food as Self Care’ workshops that were designed and led by Autistic professionals and delivered to Autistic adults in both online and in-person formats. The sessions explored participants’ same food experiences through discussion, creative reflection, and self-advocacy activities. Thematic analysis of participant contributions and a post-session survey revealed four key themes: (1) same foods as vital for emotional regulation, stability, and joy; (2) increased community connectedness and reduced isolation through shared experiences; (3) limited access to affirming support and professional understanding regarding Autistic eating patterns; and (4) same foods as a practical and intentional form of self-care. These findings challenge deficit-based interpretations of Autistic eating and highlight the value of same foods as a natural and supportive feature of Autistic life.

For many participants, these workshops represented the first time they had discussed their food experiences as Autistic people. This underscored the importance of creating more opportunities for community exploration of these topics. Furthermore, the Autistic adults were able to discuss together how their same foods meet their nutritional, regulation and overall wellbeing needs. Therefore, when professional input around food and eating is needed, we suggest that practitioners could expand their curiosity on the role that this prevalent community trait may have on individuals. Moreover, as these insights from adults were based on free workshops and not from a formal academic study, we suggest that Autistic people’s experiences of food requires future research.

Dismissed as just a “chatterbox”

Merijn Schellekens — 2026-10-17

The diagnostic criteria for ADHD were historically constructed on male, cis gender, presentations that
make female symptoms atypical in comparison. This has contributed to a poor understanding of
female presentations of ADHD and underpins the diagnostic gender gap varying from 2:1 to 16:1 in
childhood.
Semi-structured interviews with ten late-diagnosed women, aged 25-64 (M = 41.70; SD = 11.26). were
conducted. Using Interpretative Phenomenological Analysis, this study examined the lived experiences
of women diagnosed with ADHD in adulthood to retrospectively explore childhood symptomatic
ADHD behaviours and how gender influenced delayed diagnosis. Findings indicated participants
exhibited symptoms from early childhood and struggled with feelings of otherness and shame.
Hyperactive tendencies were reported as objectionable in females from an early age leading to
concealment and internalisation of perceived flaws.
Adolescence was marked by mounting scholastic difficulties, low self-esteem and poor mental health.
Participants remembered suffering from overwhelm, rumination and incessant mental activity as well
as a structural inability to sustain attention and maintain composure; symptoms highly indicative of
ADHD but missed. ADHD medication, post-diagnosis, brought mental clarity and focus. Future
research should investigate female specific indicators of ADHD and how hormonal fluctuations
escalate symptoms.