Attitudes and perceptions of people with a learning disability, family carers, and paid care workers towards cancer screening programmes in the United Kingdom: A qualitative systematic review and meta‐aggregation

Abstract

Objective Evidence suggests that people with a learning disability (PwLD) are less likely to attend cancer screening than the general population in the United Kingdom. The aim of this systematic review was to identify and synthesise qualitative studies reporting the attitudes and opinions of PwLD, family carers, and paid care workers towards national cancer screening programmes. Methods Five electronic and two grey literature databases were searched. Fourteen thousand eight hundred forty‐six papers were reviewed against predetermined inclusion criteria. Included papers were critically appraised. Findings were synthesised using meta‐aggregation. Results Eleven papers met the inclusion criteria, all related to cervical and breast screening. No papers were related to colorectal cancer screening. Findings were clustered into four synthesised findings: (1) supporting women with a learning disability (WwLD) to attend screening, (2) WwLD's awareness of screening and their psychophysical experiences, 3) professional practice barriers including the need for multidisciplinary working and an understanding of the needs of WwLD, and (4) approaches to improve the uptake of cervical and breast cancer screening. The synthesis highlights the significance of WwLD having support to understand the importance of screening to be able to make an informed choice about attending. Conclusions WwLD may not attend cancer screening due to fear, concerns over pain, and the potential influence of family carers and paid care workers. The review identified practical mechanisms which could help WwLD attend screening. Future research should focus on identifying potential barriers and facilitators as a proactive measure to promote colorectal cancer screening.

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

“…The 12 included studies were published between 2007–2020 [ 22 , 34 ] and their characteristics are presented in Table 1 . Nine studies were from the United Kingdom [ 21 , 22 , 23 , 24 , 34 , 35 , 36 , 37 , 38 ] two studies from Canada [ 39 , 40 ] and one from Australia [ 41 ].…”

Comparison of colorectal cancer screening between people with and without disability: a nationwide matched cohort study

“…In contrast to the results of this study, a meta-analysis including two studies showed that the probability of CRC screening in people with disability was not significantly lower than that in people without disability. Of the studies collected in that meta-analysis, factors such as heterogeneity and a small sample size [ 4 ] may have led to biased results. One of the analysed studies mentioned that some rural residents were not included, and the data collection time was brief, which might have led to overestimation of the study results, causing the probability of CRC screening in people with disability to be the same as that in people without disability [ 5 ].…”

“…Therefore, since 2004, Taiwan’s Ministry of Health and Welfare has been promoting free faecal immunochemical testing (FIT) for CRC and other cancer screenings for people aged 50 to 69 years (after June 1, 2013, the age range was changed to 50–74 years), and the screening rate within 2 years has risen to approximately 40% in recent years [ 3 ]. A meta-analysis showed that people with disability are not significantly less likely to undergo FIT than people without disability [ 4 ]. Another study using public data from the National Health Interview Survey also showed that people with disability were less likely to undergo CRC screening in 1998, but there was no difference in 2010 [ 5 ].…”

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

“…An additional barrier to screening mammography for women with an intellectual disability has been reported by studies as carers' personal attitudes to breast screening mammography (Byrnes et al, 2020;McIlfatrick et al, 2011;Rees, 2011;Truesdale-Kennedy et al, 2011).…”

“…However, presently the majority of advertisements and information about breast cancer and screening require a literacy level which women with an intellectual disability may lack (Byrnes et al, 2020;Taggart et al, 2011;Wilkinson et al, 2011;Wilkinson & Cerreto, 2008).…”