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Breast cancer screening in women with learning disabilities: current knowledge and considerations
- Authors:
- WILLIS Diane S., KENNEDY Catriona M., KILBRIDE Lynn
- Journal article citation:
- British Journal of Learning Disabilities, 36(3), September 2008, pp.171-184.
- Publisher:
- Wiley
As people with learning disabilities now live longer, they will experience the same age-related illnesses as the general population and cancer is a prime example of this. In women, cancer screening is used to detect early on-set of cancer of the breast and abnormalities of the cervix which might, if left untreated, develop into cancer. The literature on cancer screening in women with learning disabilities consistently reports that cancer screening up-take is lower in this population compared to women in the general population. This paper presents a review of 35 articles relating to breast cancer, breast cancer screening and breast awareness in women with learning disabilities. Relevant papers and book chapters were located by searching a number of databases and undertaking hand searches, and includes publications from 1997 to 2007. The studies located ranged from localised health initiatives to improve breast awareness and breast screening up-take, to population studies. Although more is being published on cancer in people with learning disabilities there is still a paucity of literature on breast screening amongst women with learning disabilities. This review therefore, up-dates current knowledge on breast cancer incidence and breast awareness whilst critically reviewing studies specifically focusing on breast screening in women with learning disabilities.
What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated
- Author:
- WILLIS Diane S.
- Journal article citation:
- British Journal of Learning Disabilities, 44 (4), 2016, pp.269-276.
- Publisher:
- Wiley
Background: Despite breast screening in Britain being free to all women within the allotted age range, uptake of this service is often poor in women with intellectual disabilities. Reasons put forward are numerous, including poor knowledge, pain and difficulty travelling to the centre. However, what influences the decision to attend is rarely discussed. Methods: Twelve semi-structured interviews and three focused observation were undertaken with women with intellectual disabilities to explore what influenced them to participate in breast screening and their experience of having mammography. Data were analysed thematically using a blended framework. Results: Despite the experience of mammography being negative, high uptake of breast screening services was reported in this study. Pain and previous poor treatment in hospital were reasons for nonparticipation in breast screening. Although awareness about breast screening varied, those who had previous breast problems were more knowledgeable; however, there was poor awareness of the risks of hereditary breast cancer. Overall, paid-carers were found to play a key role, as means of support, information and a potential influence in determining participation in breast screening. Conclusions: There was general equality of access but an inequality in the preparation and delivery of the service which was dependent on a complex range of issues and relationships. Key to participation was preparation with the paid-carer facilitating discussions about breast screening were key to participating in mammography. This has implications on the future direction of funding and policy making. Risks associated with hereditary breast cancer and earlier presentation of breast tumours also needs highlighting. (Edited publisher abstract)
Access to cancer screening by people with learning disabilities in England 2012/13: information from the Joint Health and Social Care Assessment Framework
- Authors:
- GLOVER Gyles, CHRISTIE Anna, HATTON Chris
- Journal article citation:
- Tizard Learning Disability Review, 19(4), 2014, pp.194-198.
- Publisher:
- Emerald
This paper presents information from the Joint Health and Social Care Self-Assessment Framework (JHSCSAF) on reported rates of cervical cancer, breast cancer and bowel cancer screening for eligible people with learning disabilities in England in 2012/2013 compared to screening rates for the general population. Between 94 and 101 Learning Disability Partnership Boards, as part of the JHSCSAF, provided information to allow the calculation of rates of cervical cancer, breast cancer and bowel cancer screening in their locality, for eligible people with learning disabilities and for the population as a whole. At a national level, reported cancer screening coverage for eligible people with learning disabilities was substantially lower than for the population as a whole (cervical cancer screening 27.6 per cent of people with learning disabilities vs 70 per cent of total population; breast cancer screening 36.8 per cent of people with learning disabilities vs 57.8 per cent of total population; bowel cancer screening 28.1 per cent of people with learning disabilities vs 40.5 per cent of the general population). There were considerable geographical variations in reported coverage for all three screening programmes. It is concluded that there is an urgent need to address data availability and quality issues, as well as reasonable adjustments to cancer screening programmes to ensure uniformly high rates of cancer screening for people with learning disabilities across England. (Edited publisher abstract)
The role of community nurses and residential staff in supporting women with intellectual disability to access breast screening services
- Authors:
- TAGGART L., TRUESDALE-KENNEDY M., MCILFATRICK S.
- Journal article citation:
- Journal of Intellectual Disability Research, 55(1), January 2011, pp.41-52.
- Publisher:
- Wiley
Women with intellectual disability (ID) are living longer and experiencing the same age-related illnesses as the non-ID population, including breast cancer. There is evidence that these women experience a greater number of risk factors for developing breast cancer. Cognitive deficits and communication difficulties mean that they are dependent upon staff to support them to attend screening clinics. This paper investigated how this support is provided. Six focus groups were held with community nurses and residential staff working in the field of ID in Northern Ireland. Many of the participants recognised the risk factors and signs/symptoms of breast cancer; but there were knowledge gaps. Both positive and negative experiences of women with ID attending for breast screening were reported but much of the discussion focused on the latter. Factors inhibiting attendance included; lack of health educational material, negative emotions, attitudes and physical barriers. Breast awareness and visual checks were suggested for women with ID who refused to attend the breast clinics; however this raised issues of informed consent and vulnerability for carers undertaking the checks. The authors highlight the need for a breast awareness programme for women with ID and suggest the development of accessible health education literature.
Commentary on “Overcoming challenges in diagnosing and treating cancers in people with intellectual disability: a case analysis”
- Authors:
- FOSTER Julie, MARKS Bob
- Journal article citation:
- Tizard Learning Disability Review, 19(2), 2014, pp.59-62.
- Publisher:
- Emerald
This commentary reflect on the implications for practice and lessons that can be drawn from the case study presented by Kiani Reza et al. It highlights weaknesses in the way that access to healthcare is currently facilitated for people with learning disabilities. (Publisher abstract)