New Voices in Women's Health: Perceptions of Women With Intellectual and Developmental Disabilities

Brown, Allison A.; Gill, Carol

doi:10.1352/1934-9556-47.5.337

Cited by 33 publications

(33 citation statements)

References 13 publications

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“…One study using focus groups to explore the health of intellectually disabled women 14 reported that many women had stopped going for mammograms because their experiences were upsetting. For women of normal intelligence from ethnic minority groups, fear of the results, lack of insurance, trust in their physician, a sense of fatalism, and embarrassment about undergoing the test affected their likelihood of obtaining a mammogram.…”

Section: A M M O G R a Phy A Nd In T El L Ec T U A L Dis A Bil I T Iesmentioning

confidence: 99%

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

Wilkinson

Deis²,

Bowen³

et al. 2011

The Annals of Family Medicine

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PURPOSE Women with intellectual disabilities (or mental retardation) are living longer, receiving primary care in the community, and have equal rates of breast cancer compared with women in the general population, but they have lower rates of mammography. Although several public campaigns have successfully raised the mammography rate for racial and ethnic minority women, they have not penetrated the community of women with intellectual disabilities. No research to date has explored potential barriers to mammography for these women by involving the women themselves as participants. METHODSWe undertook a qualitative study to explore the perceptions and understanding of mammography for women with intellectual disabilities and some of the potential reasons they would or would not have the test. Twentyseven intellectually disabled women were recruited through a variety of community groups and interviewed using a semistructured interview guide. Data were analyzed using qualitative techniques from grounded theory.RESULTS Participants in this study described being poorly prepared for mammography: they did not understand its purpose and were not prepared for the logistics of the experience. The latter was more upsetting to participants and contributed to their negative perceptions of mammography. Participants reported feeling unprepared and singled out for being unprepared, despite their desire to have at least 1 mammogram, as do other women their age.CONCLUSIONS Women with intellectual disabilities perceive mammography differently than do women who do not have intellectual disabilities, and their perception is informed by inadequate knowledge, anxiety, and inadequate preparation. These themes should be considered when planning cancer prevention interventions with this population and when counseling individual women in the clinical setting.

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Section: A M M O G R a Phy A Nd In T El L Ec T U A L Dis A Bil I T Iesmentioning

confidence: 99%

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

Wilkinson

Deis²,

Bowen³

et al. 2011

The Annals of Family Medicine

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“…Notably, among women with ID, the relative risk of death from breast cancer versus the relative risk of death from cervical cancer was 7:1, and sexual inactivity is a protective factor against cervical cancer, but nulliparity is a risk factor for breast cancer (Davies & Duff, 2001;Kelsey, Gammon, & John, 1993). Women with ID do not undergo mammography because the examination experience is upsetting (Brown & Gill, 2009). In addition, following the guidelines for mammography is difficult for women with ID; therefore, breast ultrasounds or clinical breast examination may be attempted as alternatives to resolve this problem (Sullivan et al, 2003) and achieve the objective of protecting women with ID.…”

Section: Discussionmentioning

confidence: 99%

Factors influencing the mammography utilization among Taiwanese women with intellectual disabilities, a nationwide population-based study

Lai

Kung

Tsai

2014

Research in Developmental Disabilities

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“…Problems with communication or a lack of knowledge or understanding of a procedure may cause women with intellectual disability to not seek or be unable to seek appropriate care (Brown & Gill, 2009;Sullivan, Slack-Smith, & Hussain, 2004;Wilkinson, Deis, Bowen, &. Bokhour, 2011).…”

mentioning

confidence: 99%

“…51, No. 1,62-73 ©AAIDD DOI: 10.1352/1934 anxiety may stem from past trauma (Brown & Gill, 2009). In one study, 76% of responding nurses reported that cancer-screening exams could not be performed without some type of intervention because of the person with an intellectual disability's behavior or "lack of cooperation" (Tyler et al, 2010).…”

mentioning

confidence: 99%

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Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

Swaine¹,

Dababnah²,

Parish³

et al. 2013

Intellectual and Developmental Disabilities

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Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n = 32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

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New Voices in Women's Health: Perceptions of Women With Intellectual and Developmental Disabilities

Cited by 33 publications

References 13 publications

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

'It's Easier Said Than Done': Perspectives on Mammography From Women With Intellectual Disabilities

Factors influencing the mammography utilization among Taiwanese women with intellectual disabilities, a nationwide population-based study

Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

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