Attitudes of women with a learning disability towards cancer screening
Research type
Research Study
Full title
Assessing the attitudes of women with a learning disability, family carers, and paid care workers, towards the cervical and breast cancer national screening programmes
IRAS ID
235378
Contact name
Emma L Giles
Contact email
Sponsor organisation
Teesside University
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
2 years, 4 months, 29 days
Research summary
Summary of Research
Women with a learning disability are less likely than the general population to attend cervical cancer screening and breast cancer screening. Yet, there is limited research which speaks to women with a learning disability as well as carers to understand their attitudes and opinions towards cancer screening.
The aim of the current study is to explore what the attitudes and experiences are of women with a mild to moderate learning disability, family carers, and paid care workers, towards the national cervical and breast cancer screening programmes. The aim will be addressed by 1) completing a qualitative systematic review and by 2) speaking to 20 women with a learning disability, 10 family carers and 10 paid care workers about their knowledge of, attitudes towards, and decision making around attending cervical and breast cancer screening.
The identification of potentially eligible women with a learning disability, will be through three different streams, including; Community learning disability teams, GPs and nurses and three day centre services from the North East of England. Family carers and paid care workers will be identified by the women with a learning disability.
Participants will be asked to sort a pack of statements called Q cards. Participants will be asked to sort each individual statement onto a grid from strongly disagree to strongly agree. The cards are placed under each category to represent their feelings towards the statement. This will aid in understanding the range of attitudes. Some participants can also choose to in another interview at a later date if they wish.
It is hoped that the research will help identify ways in which the screening programmes can be accessed more easily by women with a learning disability.
Summary of Results
The systematic review synthesised 11 qualitative papers which focused on the attitudes and opinions of women with learning disabilities, family carers and paid care workers 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, two mothers, one husband and five paid care workers (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 family carers and paid care workers 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.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
19/LO/0049
Date of REC Opinion
25 Mar 2019
REC opinion
Further Information Favourable Opinion