Participation and Access to Cervical Screening for women with cerebral palsy (PACS)
Project details
Aim of award
- Develop collaborations with a team of academic mentors, experts and advisors (national and international).
- Develop new knowledge and skills through training and mentoring.
- Build a fellowship team (academics, practitioners and advisors).
- Draw on the fellowship team and training to develop a detailed Advanced Fellowship proposal, based on the below outline.
- Submit Advanced Fellowship proposal in June 2025.
Background
According to the World Health Organisation, approximately 17 million people are living with cerebral palsy (CP) in the world today. Women with CP are living longer than they did in the past, but are less likely than their non-disabled peers to have access to essential and regular cancer screening, due to multi-level barriers including: inaccessible environments, procedures and equipment; limited knowledge of CP; and ableist attitudes. Fear of pain and discomfort when undergoing the procedure is also cited as a cause of low take-up by women with CP (Fasen et al, 2020; Shah et al, 2022).
Aims of research
- Enhance equal access to and regular participation in cervical screening for women and girls with cerebral palsy.
- Increase informed awareness and knowledge of the importance of cervical screening among teenage girls and young adult women with CP aged 14-25 - from menarche to the age women are offered cervical screening.
Design and methods
To complete the research in five work packages over five years, part time. Each will build on the last work package, and be guided by national and international experts with professional and/or personal experience of CP and women’s health. The patient and public involvement (PPI) group of experts will include adults with and without CP.
Work package 1
A systematic review of literature focusing on cancer screening for women with CP.
Work package 2
Interviews with 25 women with CP and 10 health practitioners (GPs, gynaecologists and nurses) to collect information about their experiences, what is positive about screening for women with CP, what is not so good and what could be made better.
Work package 3
Collaborating with the theatre practitioner, translate the interview findings into a playscript; design two workshops with women with CP and healthcare practitioners to discuss and debate the themes of the play, co-create possible solutions and enact change in a suitable environment.
Work package 4
Write up and combine findings from the workshop on solutions and actions, results from the scoping review and interviews. Share and discuss these with PPI group and invited stakeholders.
Work package 5
Produce a toolkit for practitioners and women and girls with CP. The idea is for the final product to be an online learning resource which will be shared with different universities across the UK and beyond; healthcare commissioners; and disability organisations, especially focusing on CP.
Develop and produce a theatre performance, informed by the interview, and targeted at audiences of healthcare practitioners and disabled people. It will be rehearsed and performed at Lakeside Arts, University of Nottingham.
Mentors
PACS advisory group
Dr Ruth Bailey
Dr Ruth Bailey
Dr Ruth Bailey is an Associate Lecturer in the School of Social and Global Studies at the Open University. Her PhD focused upon the barriers disabled people faced in healthcare studies. She was part of the PPI group on the Althea Study.
Agnes Kojc
Agnes Kojc
"My name is Agnes Kojc, and I live in Maribor, Slovenia. I live with cerebral palsy, and I use a wheelchair and a personal assistant and other support services.
"In 2019, I graduated from translation studies and Slovenian language and literature. I have a Masters in English translation and interpretation. I work as a freelance translator, language editor, journalist and writer, so my life is and remains closely connected to digital platforms and technology. I am also a PhD student researching the translation of metaphors further on.
"In 2022, I joined the EDF Youth Forum as an observer, and in 2023, I was also appointed a youth representative at the Cerebral Palsy Europe organisation board. I take every opportunity I have to raise awareness about equality and recognition of disabled persons in society, and especially emphasise the importance of knowing about cerebral palsy."
Karen Watson
Karen Watson
"I am Karen Watson, I'm 62 and I live with Quadriplegic Cerebral Palsy. I am also Co Founder of Cerebral Palsy Adult Advice UK, which is the largest peer-to-peer support group of its kind in the UK for adults with CP."
Lucy Hindmarch
Lucy Hindmarch works for SCOPE UK as a cerebral palsy specialist, based in Leeds. She has lived experience of CP.
Darlene Bubis
Darlene Bubis is a Licensed Marriage Family Therapist in the United States. Her background is in providing psychotherapy to families in which a child, parent and/or grandparent has a disability or medical issue. She co-moderates the international closed support and discussion Facebook group "Women Ageing with Cerebral Palsy” with Dr Sonali Shah, and holds presentations and workshops concerning sexuality and women with disabilities. Darlene is 59 and has quadriplegia CP.
Dr Bettina Botcher
Dr Bettina Botcher studied Medicine at Cologne University and came for postgraduate training to Great Britain. She worked in obstetrics and gynaecology for many years before becoming a GP with an interest in women's health, her current role. Bettina has a PhD from Cologne University, while she acquired a membership of the Royal College of Obstetricians and Gynaecologists in 2003 and is both a current member of the Royal College of General Practitioners and an associate of the Faculty of Sexual and Reproductive Health. Bettina spent six years in the Gaza Strip working in medical education and continues to do voluntary work in the region with a team from Oxford University, supporting ongoing efforts in medical education. Furthermore, she works with research groups across Palestine, helping young researchers formulate and publish their work. She has authored several publications about cancer screening.
Carmel McCarthy
Carmel McCarthy works in a GP practice in Nottingham as a nurse. She brings a wealth of knowledge and experience in sexual health and family planning to the practice. She is a member of the Faculty of Sexual and Reproductive Healthcare and holds a diploma qualification in sexual health. Carmel is qualified to both fit and remove contraceptive implants.
Lakeside Arts
Lakeside Arts is the University of Nottingham’s public arts centre presenting a programme of visual arts, manuscripts, and museum exhibitions, as well as music, theatre, dance, children and family productions. Its venues include the Djanogly Gallery, opened in 1992, which stages a year-round programme of 20th-century and contemporary art exhibitions complemented by a lively programme of public lectures and learning activities.
Visit the Lakeside Arts website
Role of advisory group
- Advise on accessibility of the Plain Language Summary.
- Advise on design of recruitment and data collection tools (interviews).
- Advise on who the study participants might be and how to recruit them - HCPs and patients.
- Advise on what interview questions to ask women with CP and healthcare practitioners in relation to experience, awareness, barriers and solutions to cervical screening (both from the perspective of nurses/doctors involved in doing the smear test, and women patients with CP).
- Advise where and with whom to share the resources to inform change (maybe use their professional/community contacts).
- Read draft application for Advanced Fellowship study.
- Commitment: two/three Zoom meetings between January and June and participation on Facebook.