Barriers and facilitators to mammography among women with intellectual disabilities: a qualitative approach

Arana-Chicas, Evelyn; Kioumarsi, Avat; Carroll‐Scott, Amy; Massey, Philip M.; Klassen, Ann C.; Yudell, Michael

doi:10.1080/09687599.2019.1680348

Cited by 13 publications

(8 citation statements)

References 49 publications

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“…This supports research, which also identified WwLD are fearful of the mammogram exam and find breast cancer screening painful (Arana‐Chicas et al, 2020 ) as well as the pain attributed to the speculum and taking of cells during cervical cancer screening (Broughton & Thomson, 2000 ). However, other populations of women including women with physical disabilities (Kilic et al, 2019 ) and women of Black African origin (Bamidele et al, 2017 ) have reported fearing the potential for pain, fear of the results and fear of cancer.…”

Section: Discussionsupporting

confidence: 76%

Factor influencing women with learning disabilities deciding to, and accessing, cervical and breast cancer screening: Findings from a Q methodology study of women with learning disabilities, family and paid carers

Sykes

McGeechan

Crawford

et al. 2022

European J Cancer Care

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Objectives: To understand knowledge of, attitudes towards and decision-making around cervical and breast cancer screening in women with learning disabilities, family carers and paid carers.Methods: A Q methodology study involving 13 women with learning disabilities, three family carers and five paid care workers, from the North-East of England.A Q-sort of 28 statements was completed with all participants completing a post-Q-sort interview to understand the reason behind the card placements. Factor analysis was completed using PQMethod and interpreted using framework analysis.Results: Factor 1, 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 their preferred support needs. Factor 2, named 'Protecting vs. enablement', portrayed the battle family carers and paid care workers felt to protect women with learning disabilities from harm, whilst feeling that they were supporting women with learning disabilities to decide to attend cancer screening.Eight consensus statements were identified indicating a shared perspective.Conclusions: Cancer screening services should ensure that women with learning disabilities are supported to make informed decisions to attend cancer screening and then be further supported throughout the cancer pathway.

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Section: Discussionsupporting

confidence: 76%

Factor influencing women with learning disabilities deciding to, and accessing, cervical and breast cancer screening: Findings from a Q methodology study of women with learning disabilities, family and paid carers

Sykes

McGeechan

Crawford

et al. 2022

European J Cancer Care

View full text Add to dashboard Cite

show abstract

“…Consequently, breast cancer awareness practices appear suboptimal. Comparably, previous studies have reported that caregivers and HCPs are rarely engaging in breast cancer prevention and health promotion activities on behalf of women with ID due to a lack of knowledge, unclear guidelines and potential ethical issues (Arana‐Chicasa et al, 2020; Collins et al, 2014; Hanna et al, 2011; Kirby & Hegarty, 2010; Wyatt & Talbot, 2013).…”

Section: Discussionmentioning

confidence: 91%

“…Several barriers to breast cancer awareness for women with ID have been identified including a lack of understanding about breast cancer awareness, caregiver attitudes and knowledge, literacy skills and availability of health information (Arana‐Chicasa et al, 2020; Davies & Duff, 2001; McIlfatrick et al, 2011; Satge et al, 2014; Taggart et al, 2011; Walsh, O'Mahony, Hegarty, et al, 2021). Furthermore, a review of literature has demonstrated a paucity of cancer awareness and breast cancer awareness interventions specifically aimed at women with ID (Walsh, O'Mahony, Lehane, et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

Determining the need for a breast cancer awareness educational intervention for women with mild/moderate levels of intellectual disability: A qualitative descriptive study

Walsh

Hegarty

Lehane

et al. 2022

European J Cancer Care

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Objective: Following a review of the existing body of literature, this study aimed to explore the need for a breast cancer awareness intervention specifically targeted at women with mild/moderate levels of intellectual disability (ID) and provide perspectives on the preferred processes and content underpinning an intervention.Methods: A qualitative, descriptive design using semi-structured, individual (n = 5) and focus group (n = 5) interviews were used to engage with a non-probability, purposive sample of key stakeholders (n = 25) including women with mild/moderate levels of ID, caregivers and healthcare professionals. Data were analysed using qualitative content analysis.Results: Findings highlighted that an educational intervention should focus on breast awareness as opposed to breast cancer awareness. Additionally, findings identified that a combined breast awareness and healthy living intervention could be effective.However, the intervention needs to have a multimodal, hands-on, person-centred approach to learning which is underpinned by theory. Furthermore, integrating the caregivers and healthcare professionals into the intervention is recommended. Conclusion:Findings from this study provide a foundation for developing and implementing a theoretically underpinned, multimodal, breast awareness and healthy living educational intervention for women with mild/moderate levels of ID.

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“…A few studies have suggested different reasons for this markedly lower breast cancer screening participation among women with ID, none from a Danish setting. A recently published systematic review 35,36 shows that barriers for screening participation in this group are perceptions of fear, distress, and embarrassment; unpreparedness for screening; negative interactions with health care professionals; a lack of knowledge about cancer screening; mobility issues; and a lack of ability to provide consent and communicate verbally.…”

Section: Discussionmentioning

confidence: 99%

“…The examination can be unpleasant, and the woman must be able to cooperate and place her body and breasts in several positions. 35 In a recently published review, 37 the authors suggest that breast cancer screening should not be recommended for women with Down syndrome. Instead, they suggest annual clinical monitoring with palpation by a health care professional, with the option to perform ultrasound or magnetic resonance imaging examination if needed.…”

Section: Discussionmentioning

confidence: 99%

Breast Cancer Screening Among Women With Intellectual Disability in Denmark

et al. 2023

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ImportanceBreast cancer–specific mortality is increased among women with intellectual disability (ID), and knowledge about participation in breast cancer screening in this group is needed.ObjectiveTo examine participation in the Danish national breast cancer screening program among women with ID compared with women without ID.Design, Setting, and ParticipantsThis dynamic population-based cohort study assessed participation in the Danish national breast cancer screening program initiated in 2007, targeting women aged 50 to 69 years with a screening interval of 2 years. In all, 6357 women with ID born between 1941 and 1967 and eligible for the screening program were identified in national registers. Women entered the study between January 1, 2007, and December 31, 2017. Subsequently, 273 women were excluded due to a history of carcinoma in situ or breast cancer, and 489 due to registration errors in registers. Each woman was individually age-matched with 10 women without ID (reference group). All women were followed up until March 31, 2021, or censoring (due to death, carcinoma in situ, or breast cancer). Data were analyzed from December 1, 2021, to June 31, 2022.ExposuresIntellectual disability was defined as being registered with an ID diagnosis or a diagnosis most likely leading to ID or residing at an institution for persons with ID.Main Outcomes and MeasuresParticipation in breast cancer screening (fully, partly, and never).ResultsA total of 5595 women with ID and 49 423 age-matched women in the reference group were included in the analysis. Of these, 2747 women with ID (49%) and 24 723 in the reference group (50%) were 50 years of age at study entry; for those older than 50 years, the median age was 51 years (IQR, 50-58 years) in both groups. In all, 1425 women with ID (25%) were fully screened according to guidelines for the Danish breast cancer screening program compared with 30 480 women in the reference group (62%). Women with ID had nearly 5 times higher odds of never being screened compared with the reference group (odds ratio, 4.90 [95% CI, 4.60-5.22]). In all, 2498 women with ID (45%) and 6573 in the reference group (13%) were never screened. The proportion of never-screened women increased with severity of ID, from 834 of 2287 (36%) among women with mild ID to 173 of 212 (82%) among women with profound ID.Conclusions and RelevanceThe findings of this cohort study suggest that women with ID are markedly less likely to participate in breast cancer screening compared with women without ID. These findings further suggest a need for tailored guidelines and approaches for breast cancer screening in this group of women.

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Barriers and facilitators to mammography among women with intellectual disabilities: a qualitative approach

Cited by 13 publications

References 49 publications

Factor influencing women with learning disabilities deciding to, and accessing, cervical and breast cancer screening: Findings from a Q methodology study of women with learning disabilities, family and paid carers

Factor influencing women with learning disabilities deciding to, and accessing, cervical and breast cancer screening: Findings from a Q methodology study of women with learning disabilities, family and paid carers

Determining the need for a breast cancer awareness educational intervention for women with mild/moderate levels of intellectual disability: A qualitative descriptive study

Breast Cancer Screening Among Women With Intellectual Disability in Denmark

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