What was the scope of this project?

Help & Care’s project, Involving People, in collaboration with Wessex Cancer Alliance, Macmillan and Bournemouth University recently undertook a research project to understand the experiences of cancer services for disabled and/or neurodivergent people.

This report explores disabled, chronically ill, visually impaired and neurodivergent people’s experiences of cancer services, to support us in developing recommendations aimed towards improving the accessibility of these services.

Also, it explores how using the community research model provides a level of shared understanding between the research team and community members to enable the capture the perspectives of individuals currently underserved by health and social care research.

This project was commissioned by Macmillan Cancer Support and Wessex Cancer Alliance and overseen by Help & Care (Involving People), Bournemouth University’s Public Involvement in Education and Research [PIER] Partnership and the Research Centre for Seldom Heard Voices. Two disabled and neurodivergent community researchers were supported to lead the project, and a clinical nurse specialist that works across hospital and community settings to support patients during their cancer journey was recruited.

 

Undertaking patient-centred research

Research undertaken:

-        Four creative and engaging workshops

-        One online interview with a member of the Royal National Institute of Blind (RNIB)

-        Overall, we spoke to 45 disabled and/or neurodivergent people

Workshop attendees were encouraged to create a piece of art that they felt represented them. During the creative arts process, we were able to engage in conversation with attendees about their experiences, as well as more general discussions, around access to cancer services. Attendees were supported to share deep insights, as one attendee described:

“Doing the artwork, I have talked about things I would not normally talk about.”

The community researchers, Katie and Rosie, led on all aspects of the project. Their shared lived experiences meant that their presence at the creative workshops was fundamental in connecting openly and honestly with attendees through shared understanding and culture.

“Having Katie as part of the group definitely helped people feel more comfortable as well.”

We discussed with attendees their experiences of cancer treatment, which one person described as feeling like a “cloak of being looked after”, and they found themself “left alone in the wilderness” once it was finished. They also spoke of their struggles of coping with cancer as well as being disabled, saying it felt “impossible”. Reasons for this included the overwhelming theme established across all workshops/interviews that “care is predicated towards the ‘normative’ body and the restoration of normality”, which results in barriers to accessibility, understanding, care, and information.

 

The value of patient involvement

Outputs from the workshops took the form of artwork created by attendees with added quotes about their experiences. Photographs were taken throughout, and a video has been developed to display attendees’ creations, which is voiced over by the community researchers, to give visual and audio insight of what our attendees would like to say.

Our next steps and call to action will include sharing our final report and film, which will be followed by a published journal article. We have also set a firm foundation of the community research methodology, which will inform subsequent projects, such as the upcoming trans+ and BIPOC projects. One of our attendees is also now a PIER member and will be supporting us to make our future outputs more accessible.

 

Find out more

You can read the full report here.

Watch our video here.

Involving People, led by Help & Care, can support organisations in many ways. You can find out more about this here

 

Interested in getting involved?

Help & Care have highly experienced workshop facilitators and research teams who take a personalised, bespoke approach to patient and public involvement projects. Our aim is to improve health and care outcomes by involving patients and the public in the design, delivery and transformation of health and community services. What we do: -

• Personalised Care
• Health coaching and self-management
• Patient and public involvement / co production
• Consultation, engagement and evaluation
• Inequalities
• Partnership building
• Advocacy
• Community research
• We deliver the above and also upskill, build confidence and support others to deliver too.

If you are looking to engage communities in research, get in touch with Neil Bolton-Heaton at Help & Care here: neil.bolton-heaton@helpandcare.org.uk