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Recruitment and consent of women with intellectual disabilities in a randomised control trial of a health promotion intervention
- Authors:
- SWAINE J., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 55(5), May 2011, pp.474-483.
- Publisher:
- Wiley
The markedly worse health of people with intellectual disabilities compared to non-disabled people creates a critical need for evidence-based health promotion interventions. However, there appear to be significant barriers stopping them from participating in research, including those related to recruitment and obtaining informed consent. This study, which describes a procedure for the recruitment and consent of women with intellectual disabilities, is part of a larger US community-based, multi-site randomised controlled trial testing an intervention to promote cervical and breast cancer screening. Of 269 women who participated in information sessions, 203 (75%) enrolled in the study. While women with and without legal guardians consented at about the same rates (83% and 85%, respectively), those with legal guardians enrolled at significantly lower rates (61%) because of lower rates (74%) of guardian consent. The authors conclude that it is possible to recruit community-dwelling women with intellectual disabilities into randomised controlled trials at relatively high participation rates. However recruiting women who have guardians poses additional challenges for researchers.
Exercising choice and control - women with learning disabilities and contraception
- Author:
- McCARTHY Michelle
- Journal article citation:
- British Journal of Learning Disabilities, 38(4), December 2010, pp.293-302.
- Publisher:
- Wiley
This research project investigated contraception use amongst women with learning disabilities. Semi-structured in-depth interviews were held with 23 women with learning disabilities, aged between 20 and 51, about their experience of being prescribed contraception. In addition, a postal survey was returned by 162 general practitioners across two counties in England which included questions about their contraception prescribing practices to women with learning disabilities, and how they dealt with issues of capacity to consent to treatment. A service user group was also involved at different stages of the project. Most of the women reported that other people had made the key decisions about starting to use contraception and which method to use. Both the women and the doctors said they liked having a third party, such as a staff member or relative, present for the consultations. Many of the doctors were unclear about responding to issues of capacity to consent to treatment. The article discusses: the constraints on the women’s ability to make choices; the presence of carers in medical consultations; responding to capacity issues; and the need for training for healthcare professionals. An accessible research summary was produced to make the process and findings of the research available to the women with learning disabilities who took part in the study, as well as to any others who were interested, and extracts of this are included in this article.
Good practice in breast and cervical screening for women with learning disabilities
- Publisher:
- NHS Cancer Screening Programmes
- Publication year:
- 2000
- Pagination:
- 42p.
- Place of publication:
- Sheffield
Summarising current guidance on access to health care for people with learning disabilities and explaining the issues of consent for breast or cervical screening, the purpose of this guidance is to describe good practice to ensure that women with learning disabilities have the same rights of access as all other women to the NHS Breast Screening Programme and the NHS Cervical Screening Programme. It is aimed at health or social services staff who provide support for women with learning disabilities, staff who work in screening programmes, and staff and family members who provide support for women with learning disabilities. The guidance recommends good practice so that wherever possible women with a learning disability can have access to information to enable them to make their own decisions about screening, know what to expect when they attend the screening so that it is a positive experience, and understand the possible consequences of screening and the need to be aware of changes in their own bodies. It includes criteria for assessing the capacity of individuals to consent to screening and recommendations on what to do if a woman is not able to consent. This publication has now been superseded by Equal access to breast and cervical screening for disabled women.
Cervical screening for women with learning disability: current practice and attitudes within primary care in Edinburgh
- Authors:
- WOOD Rachel, DOUGLAS Margaret
- Journal article citation:
- British Journal of Learning Disabilities, 35(2), June 2007, pp.84-92.
- Publisher:
- Wiley
This study aimed to evaluate current practice in, and to explore primary care professionals’ views about, providing cervical screening to women with learning disability, in two areas of Edinburgh. A postal questionnaire was sent to all 24 GP practices in the project area: 20 responded. Seven respondents were invited to participate in follow up interviews: six agreed. Results show that many practices lack robust mechanisms to identify their patients with learning disability; the low uptake of cervical screening by women with learning disability is not primarily because they are excluded from invitation for screening; practices vary in how they adapt the process of cervical screening to meet the needs of women with learning disability; and professionals make pragmatic decisions when considering screening for women unable to give informed consent. Primary care professionals need guidance and support to offer and provide screening appropriately to women with learning disability.