Abstract
Background: Women with learning disabilities are less likely to follow up aninvitation 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.
| Date of Award | 15 Oct 2022 |
|---|---|
| Original language | English |
| Awarding Institution |
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| Supervisor | Sharon Hamilton (Supervisor), Grant McGeechan (Supervisor) & Emma Giles (Supervisor) |