An exploration of the attitudes, opinions, and perspectives of women with learning disabilities and carers, towards accessing the NHS cervical and breast cancer screening programmes

Research output: ThesisDoctoral Thesis

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Abstract

Background: Women with learning disabilities are less likely to follow up an
invitation to cervical and breast cancer screening, compared to women without
learning disabilities. Various barriers have been identified that could inhibit women with learning disabilities from making an informed decision and attending cervical and breast cancer screening. However, previous research has not highlighted the most influential barriers and facilitators to cervical and breast cancer screening and accounted for them across different populations including women with learning disabilities. This could then maximise the informed decision making, and uptake of women with learning disabilities deciding to attend cervical and/or breast cancer screening.

Aim: This thesis explores the attitudes, opinions, knowledge, and experiences of
women with learning disabilities, family carers (FC) and paid care workers (PCW)
toward cervical and breast cancer screening in the North East of England.

Methods: This research utilised three sequential stages. The first phase was a
qualitative systematic review of attitudes and experiences of people with a learning disability towards cancer screening programmes in the UK, to increase the understanding around the relevant literature. The second stage involved multiple phases of Patient and Public Involvement, to inform the data collection materials (information sheet, consent form and Q sort grid). The final stage was a Q methodology study comprising of a card sorting task involving women with learning disabilities, FCs and PCWs.

Results: The systematic review synthesised 11 qualitative papers which focused on the attitudes and opinions of women with learning disabilities, FCs and PCWs towards cervical and breast cancer screening. Results focused on how to support women with learning disabilities to attend the screening, their awareness of screening, and their psychophysical experiences, the professional practice barriers including the need for multidisciplinary working and an understanding of the needs of women with learning disabilities and facilitators to improve the uptake of cervical and breast cancer screening. Twenty-one people took part in the Q study: 13 women with learning disabilities, three FCs (two mothers and one husband) and five PCWs (all support workers). Following analysis using PQMethod, two factors were identified. Factor one named ‘Personal choice and ownership’ explores how women with learning disabilities want to be supported to make their own decision to attend cancer screening and explored preferences to support needs of the women with learning disabilities through cervical and breast cancer screening. Factor two, named ‘Protecting vs enablement’, discussed the battle both FC and PCW felt to ensure they were protecting women with learning disabilities from harm or possible distress from screening, whilst feeling that they were supporting women with learning disabilities to decide to attend screening.
Conclusions: The findings from this study have been underpinned by the Social
Ecological Model (SEM). From this, multiple barriers and facilitators have been
identified which may influence the uptake of women with learning disabilities
attending cervical and breast cancer screening. The SEM facilitated identification of the multiple layers of influence that can aid or hinder women with learning
disabilities making an informed decision to attend screening, and then in attending their screening appointment. This included using easy-read documentation, ensuring women with learning disabilities know the symptoms of cancer and ensuring carers are informed and supportive of women with learning disabilities decisions. From this research specific recommendations for practice have been identified. The key recommendations are to ensure that women with learning disabilities are routinely given information in an accessible format; FC, PCW and screening staff should have training on the needs of women with learning disabilities generally and in relation to cancer screening to support women with learning disabilities make an informed decision, and the need to embed reasonable adjustments within the cervical and breast cancer screening pathways. This will ensure women with learning disabilities are aided in the initial decision-making phase and then supported throughout the screening to ensure the screening is successfully completed. This thesis constitutes an original contribution to knowledge as previous research has not used Q methodology to understand and explore the perspectives of women with learning disabilities, FCs and PCWs towards cervical and breast cancer screening. Nor has previous research utilised the SEM to understand the factors influencing the uptake of cervical and breast cancer screening by women with learning disabilities.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Teesside University
Supervisors/Advisors
  • Giles, Emma L., Supervisor, External person
  • McGeechan, Grant J. , Supervisor, External person
  • Crawford, Hannah, Advisor, External person
Award date15 Oct 2021
Place of PublicationMiddlesbrough
Publisher
Publication statusPublished - 15 Oct 2021
Externally publishedYes

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