Exploring the impact of mental capacity on breast screening for women with intellectual disabilities

Abstract

This study explores the impact of mental capacity in relation to breast screening for women with intellectual disabilities in the UK. Participation in breast screening is considerably lower for women with intellectual disabilities compared to the general population. Barriers to screening include poor mobility and behavioural difficulties. There is currently no research which primarily explores the relationship between mental capacity and breast screening for this group of individuals. This paper presents the results of a cross‐sectional survey of 131 women with intellectual disabilities supported by eight Social Care Providers within England and Wales. The data were collected between January 2017 and July 2017. The current research explores the decision‐making process surrounding breast screening, considering the impact of associated risk factors during this process. Participants completed a specifically created survey addressing the aforementioned issues. The results indicated that women who lacked capacity, were less likely to engage in breast screening. It was also demonstrated that the process outlined in the Mental Capacity Act (MCA; 2005) was not always followed; women were not routinely assessed if there were doubts regarding their decision‐making ability around breast screening and best interest meetings (BIM) were not always held if the person lacked capacity. In order to be able to generalise the current findings, further research is needed to gain a broader understanding of how professionals make decisions around breast screening for women with intellectual disabilities in case the individuals are unable to decide this independently.

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

“…Barriers to attendance at screening mammography for women with an intellectual disability have been reported by HCP's due to cognitive and communication deficits, level of understanding in addition to ability to consent, mobility and physical health (Bates & Triantafyllopoulou, 2019;McIlfatrick et al, 2011;Lalor & Redmond, 2009). Additionally, negative emotions such as fear, anxiety, discomfort and pain have been reported by carers as reasons why women with an intellectual disability have refused to attend their screening mammography appointment (Bates & Triantafyllopoulou, 2019;Taggart et al, 2011). Upon questioning, women with an intellectual disability have described similar feelings of fear, stress, embarrassment and anxiety in addition to a lack of knowledge and understanding about mammography (Swaine et al, 2014;Parish et al, 2012;Truesdale-Kennedy et al, 2011;Wilkinson et al, 2011).…”

“…Consequently, communication difficulties and low literacy levels act as barriers for women with an intellectual disability in becoming breast cancer aware (Byrnes et al, 2020;Bates & Triantafyllopoulou, 2019). Communication difficulties, a lack of knowledge and accessible information on breast cancer risks, preventions and screening mammography prohibit women with an intellectual disability having the ability to communicate effectively and seeking timely advice from health care providers (Parish et al, 2012;McIlfatrick et al, 2011).…”

“…Recent studies of the population suggest trends that the number of people with an intellectual disability (ID) is increasing with a corresponding increase in the elderly demographic. (Albuquerque & Carvalho, 2020;Bates & Triantafyllopoulou, 2019;Walsh et al, 2019;O'Leary et al, 2018;Reidy et al, 2018;Seaton et al, 2018;National Intellectual Disability Database, 2017;Collins et al, 2014;Reidy et al, 2014). As a result, the number of people with an intellectual disability who are at risk of developing cancer is increasing, including breast cancer (Satge et al, 2020;Bates & Triantafyllopoulou, 2019;O'Leary et al, 2018;Reidy et al, 2018;Satge et al, 2014;Hanna et al, 2011).…”

“…(Albuquerque & Carvalho, 2020;Bates & Triantafyllopoulou, 2019;Walsh et al, 2019;O'Leary et al, 2018;Reidy et al, 2018;Seaton et al, 2018;National Intellectual Disability Database, 2017;Collins et al, 2014;Reidy et al, 2014). As a result, the number of people with an intellectual disability who are at risk of developing cancer is increasing, including breast cancer (Satge et al, 2020;Bates & Triantafyllopoulou, 2019;O'Leary et al, 2018;Reidy et al, 2018;Satge et al, 2014;Hanna et al, 2011). Incidence rates for developing breast cancer are similar for women regardless of intellectual ability (Satge et al, 2020;Reidy et al, 2014;Willis, 2013;Truesdale-Kennedy et al, 2011;Wilkinson & Cerreto, 2008).…”

“…An intellectual disability is defined as limitations in intellectual functioning and adaptive behaviour expressed in practical, social and conceptual skills, which develops before the age of 18 years (American Association of Intellectual and Developmental Disabilities, 2013). Recent studies of the population suggest trends that the number of people with an intellectual disability is increasing with a corresponding increase in the elderly demographic (Albuquerque and Carvalho, 2020; Bates and Triantafyllopoulou, 2019; Collins et al, 2014; National Intellectual Disability Database, 2017; O’Leary et al, 2018; Reidy et al, 2014, 2018; Seaton et al, 2018; Walsh et al, 2021). As a result, the number of people with an intellectual disability who are at risk of developing cancer is increasing, including breast cancer (Bates and Triantafyllopoulou, 2019; Hanna et al, 2011; O’Leary et al, 2018; Reidy et al, 2018; Satge et al, 2014, 2020).…”