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A decade on: what have we learnt about supporting women with intellectual disabilities through the menopause?
- Author:
- WILLIS Diane S.
- Journal article citation:
- Journal of Intellectual Disabilities, 12(1), March 2008, pp.9-23.
- Publisher:
- Sage
- Place of publication:
- London
Carr and Hollins highlighted the paucity of research on the menopause in women with intellectual disabilities and, 10 years on, this area still remains poorly researched. Work exploring the age of onset of the menopause has suggested that the menopause is earlier in this group of women, but studies exploring what women with intellectual disabilities understand and experience during the menopause are limited. In this Scottish study 15 women with mild to moderate intellectual disabilities were interviewed using a semi-structured interview on a one-to-one basis about their knowledge and understanding of the menopause. Findings revealed limited accessible information about the menopause and a paucity in the women's knowledge and understanding about the menopause. This suggests a need for more accessible information, in order to increase understanding and awareness of the menopause in these women.
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)
Carer knowledge and experiences with menopause in women with intellectual disabilities
- Authors:
- WILLIS Diane S., WISHART Jennifer G., MUIR Walter J.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(1), March 2010, pp.42-48.
- Publisher:
- Wiley
Life expectancy for women with intellectual disabilities (ID) now significantly extended, but little is known about how carers support women with ID through menopause. This study examined carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it. Interviews were conducted with 69 carers (7 male, 62 female) from a range of backgrounds, all responsible for the care of one or more pre-, peri-, or post-menopausal women with ID. Findings showed that carers found difficulty in disentangling the psychological and physical consequences of the menopause from behaviours and symptoms arising from other causes. However, there was general recognition of the transitional importance of menopause and a widespread acknowledgment of the resilience that many women with ID show in coping with it. Carers emphasized the need for health resources to be better customized to the women's needs and for more relevant health education training for staff. The authors conclude that additional and new demands are placed on service provision as women with ID live longer, and that an increased awareness of health issues relating to menopause is needed.