Defining breast cancer awareness and identifying barriers to breast cancer awareness for women with an intellectual disability: A review of the literature

Walsh, Susan; O’Mahony, Máirín; Hegarty, Josephine; Farrell, Dawn; Taggart, Laurence; Kelly, Louise; Sahm, Laura J.; Corrigan, Maria; Caples, Maria; Martin, Anne‐Marie; Tabirca, Sabin; Corrigan, Mark; Lehane, Elaine

doi:10.1177/1744629521999548

Cited by 8 publications

(14 citation statements)

References 76 publications

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“…Part 2a: Triangulating WP1 with previous research. The data and results obtained from parts 1a and 1b will be triangulated with the findings from previous research that focuses on cancer screening attendance by PwLD [6,[30][31][32]. This research on PwLD discovered the barriers to cancer screening included embarrassment, unpreparedness, negative interactions with healthcare professionals, a lack of knowledge, and fear [30].…”

Section: Phasementioning

confidence: 88%

A protocol to identify the barriers and facilitators for people with severe mental illness and/or learning disabilities for PErson Centred Cancer Screening Services (PECCS)

et al. 2022

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Objectives To identify the barriers and facilitators that people with severe mental illness and people with learning disabilities may encounter when accessing cancer screening and make recommendations for implementing reasonable adjustments throughout cancer screening services. Methods and analysis An 18-month sequential, mixed-methods study comprising of two phases of work and underpinned by Normalisation Process Theory, recruiting from across the North-East and North Cumbria. The first phase aims to identify the barriers and facilitators for people with severe mental illness in accessing cervical, breast and colorectal cancer screening. A systematic review of eight databases (Part 1a; PROSPERO registration number: CRD42022331781) alongside semi-structured interviews of up to 36 people with severe mental illness (Part 1b) will occur. Additional characteristics indicating populations whose perspectives may not have been accounted for in the systematic review will be targeted in the interviews. Potential participants will be identified from a range of settings across the North-East and North Cumbria, including through social media and gatekeepers within National Health Service Trusts and charities. Interviews will be analysed using framework analysis, which will be in line with the Normalisation Process Theory. The second phase of the project (part 2a) involves triangulating the results of the systematic review and interviews with existing research previously completed with people with learning disabilities accessing cancer screening. This will be to identify population specific barriers and facilitators across people with learning disabilities and people with severe mental illness to access cancer screening services. Following triangulation, part 2b will include designing and planning a future study involving stakeholders in cancer screening to explore the feasibility, practicality, and priority for implementing the recommendations to improve person centred cancer screening services (PECCS). Ethics and dissemination This study has received Teesside University ethical approval, Health Research Authority approval (IRAS: 310622) and favourable opinion (REF: 22/PR/0793). Findings will be disseminated through a range of academic and non-academic modes including infographics, blog posts and academic publications.

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Section: Phasementioning

confidence: 88%

A protocol to identify the barriers and facilitators for people with severe mental illness and/or learning disabilities for PErson Centred Cancer Screening Services (PECCS)

et al. 2022

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“…People with intellectual disability face inequities when accessing health and social care services [ 46 ]. It remains encouraging to note that the recent academic literature has started to question the lack of focus on the experience of cancer care and survivorship of people with intellectual disability [ 47 , 48 , 49 , 50 ]. However, more focused attention is needed.…”

Section: Discussionmentioning

confidence: 99%

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

et al. 2021

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People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

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“…The studies address a range of areas including knowledge and awareness of cancer risk-factors and symptoms among people with ID, paid and unpaid carers, ID nurses and HCPs (Kirby and Hegarty 2010;Hanna et al 2011;Truesdale-Kennedy et al 2011;Satgé et al 2012;Reidy et al 2018;Walsh et al 2019;Walsh et al 2021;Walsh et al 2022) (Tuffrey-Wijne et al 2006Jones et al 2007;O'Regan and Drummond 2008;Collins et al 2014), and interventions to promote awareness of cancer and screening (Cowie and Fletcher 1998;Parish et al 2011;Swaine et al 2014;Wilson et al 2018;Gray et al 2021). The following provides a narrative synthesis of the results; for detailed information regarding design, sample, methods of the included studies, see Table 2.…”

Section: Main Study Characteristicsmentioning

confidence: 99%

Cancer risk‐factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review

Gil,

Cox,

Whitaker

et al. 2023

J intellect Disabil Res

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BackgroundThe physical health of people with intellectual disabilities (ID) has been identified as an area of ongoing concern and priority. Research has increasingly focused on cancer, with studies indicating that people with ID are at an increased risk of cancer and of mortality, compared with the general population. This review aims to systematically identify and synthesise the published academic literature exploring cancer risk‐factor and symptom awareness among people with IDs, carers and healthcare professionals.MethodsIn line with Arksey and O'Malley's (2005) framework for scoping reviews, five incremental stages were followed: (1) identifying research question, (2) identifying relevant studies, (3) study selection, (4) extracting and charting of data, and (5) collating, summarising and reporting results. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta‐analyses extension for scoping reviews (PRISMA‐Scr).ResultsThe search strategy identified 352 records, 16 records met all eligibility criteria and were included for review. The studies address a range of areas including knowledge and awareness of cancer risk‐factors and symptoms and interventions to promote awareness of cancer.ConclusionsCancer risk‐factor and symptom awareness is low among adults with ID, paid and unpaid carers and healthcare practitioners (HCPs). Theoretically underpinned, co‐designed tools and interventions to improve awareness are lacking. There is uncertainty surrounding how to best support people with ID in raising cancer awareness, even within the professional healthcare environment. There is a predominance of research on breast cancer awareness. Future studies focusing on other cancers are needed to build a complete picture of awareness among adults with IDs, paid and unpaid carers, and HCPs.

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Defining breast cancer awareness and identifying barriers to breast cancer awareness for women with an intellectual disability: A review of the literature

Cited by 8 publications

References 76 publications

A protocol to identify the barriers and facilitators for people with severe mental illness and/or learning disabilities for PErson Centred Cancer Screening Services (PECCS)

A protocol to identify the barriers and facilitators for people with severe mental illness and/or learning disabilities for PErson Centred Cancer Screening Services (PECCS)

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

Cancer risk‐factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review

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