Diane Willis

Breast cancer surveillance in women with intellectual disabilities

Breast cancer is the most frequent malignant neoplasm observed among women. For the subgroup of women with learning/intellectual disability, it is unclear whether their risk for breast cancer is as high as it is for the general population. Objective: Evaluation of breast cancer frequency and breast cancer screening in women with learning disability, focusing on Down syndrome. Method: Review of the literature. Results: The rather scant literature on the topic suggests women with learning disability may have the same or lower risk of breast cancer. The subgroup of women with Down syndrome has a lower risk of breast cancer. The absence of adequate, good-quality epidemiological data on this topic makes it difficult to evaluate any trend of increasing or decreasing risk for these women. However, given that medical achievements have seen significant gains in life expectancy for this group, it is likely that the number of women presenting with symptomatic breast cancer is increasing, even if the rate is unchanged. Evaluation of the literature on the use of mammography screening services suggests that women with learning disability may be either deliberately or passively excluded from screening programs. Uptake among those who are invited for mammography appears to be poor, and alternatives, such as clinical breast examination, appear to be underutilized. Conclusion: We suggest that women with learning disability should not be excluded from breast cancer screening services. Increased awareness of the risks of breast cancer among general practitioners and other health personnel is needed, as is the evaluation and development of appropriate screening methods for this special-needs population.

A decade on What have we learnt about supporting women with intellectual disabilities through the menopause

Carr and Hollins highlighted the paucity of research on the menopause in women with intellectual disabilities and, 10 years on, this area still remains poorly researched. Work exploring the age of onset of the menopause has suggested that the menopause is earlier in this group of women, but studies exploring what women with intellectual disabilities understand and experience during the menopause are limited. In this study 15 women with mild to moderate intellectual disabilities were interviewed using a semi-structured interview on a one-to-one basis about their knowledge and understanding of the menopause. Findings revealed limited accessible information about the menopause and a paucity in the womens knowledge and understanding about the menopause. This suggests a need for more accessible information, in order to increase understanding and awareness of the menopause in these women.

Paid- and family-carers' views on supporting women with intellectual disability through breast screening

The cancer needs of people with intellectual disabilities are increasingly being debated. This paper explores the views and experiences of paid- and family-carers when supporting women with intellectual disabilities through breast screening. An ethnographic approach was drawn on and purposive sampling methods were employed. One-to-one semi-structured interviews with 13 carers (10 paid-carers, three family-carers) were undertaken and supported by periods of focused observation on behaviour related to breast awareness and breast screening. Findings indicated that most women with intellectual disabilities needed some support but the quality and quantity of support depended upon both the womans level of intellectual disability and who was supporting them. In terms of breast screening, the findings suggested that the women were potentially being let down at all the different stages of the breast screening process, from the arrival of the invitation letter to the experience of having a mammogram. The conclusion drawn was that there was evidence of equality of service provision but inequality of service delivery and uptake.

Widening Access; Developing an eLearning Resource for Health and Social Care Professionals Caring for Children and Young People with Cancer

Cancer is a key priority worldwide, and caring for children and young people with cancer requires a range of specific knowledge, skills and experience in order to deliver the complex care regimes both within the hospital or community environment. The aim of this paper is to disseminate work undertaken to design and develop pedagogical practice and innovation through an eLearning resource for health care professionals caring for children and young people with cancer across the globe. The work undertaken evaluated an existing cancer course (which has been withdrawn) that was developed and delivered through the Paediatric Oncology Nurses Forum, Royal College Nursing (Nurse Educators) and Warwick University. The evaluation consisted of 26 open and closed questions relating to the previous resource and was circulated to all health and social care professionals involved directly within specialist oncology services through the Children’s Cancer and Leukaemia Group. Questionnaires were sent out to a convenience sample of 773 health care professionals and the response rate was 14%. The findings identified that the course was predominantly accessed by nurses, but other health care professionals also found it useful. Participants highlighted several areas where they believed content could be developed or was lacking. This included areas such as palliative and end of life care, nutrition, sepsis and teenagers and young people. This feedback was then used to develop a site dedicated to the care of children and young people with cancer.

Colorectal Cancer in People with Intellectual Disabilities

People with intellectual disabilities (PWIDs) are now living longer; thus, the incidence of cancer within this population is increasing. Available data indicate an excess of digestive tract cancers in PWIDs, but colorectal cancer has rarely been specifically studied and has not been extensively reviewed. This is despite risk factors such as being overweight, obesity, and lack of exercise being more frequent in PWIDs. In this article, we examine the literature on the frequency, screening, and treatment of colorectal cancer in PWIDs by as sessing 4 databases, Medline, EBSCO-CINHL, ASSIA, and PsychLIT, from 1970 to February 2017. Findings indicate that the frequency trends slightly higher than that found in the general population. Screening presents a unique opportunity to discover early colorectal cancer, but is underused in PWIDs compared to the general population. Furthermore, the clinical presentation is frequently masked, particularly by challenging behaviours, and colorectal cancer is therefore often diagnosed late, making treatment difficult due to the advanced stage of these tumours. To improve the care of PWIDs, we need more resources to support them and their caregivers, and to increase awareness of the risk factors and signs and symptoms of colorectal cancer.

Systematic review: cultural adaptation and feasibility of screening for autism in non-English speaking countries

BackgroundScreening children for autism has gained wider acceptance within clinical practice, and early intervention has improved outcomes. Increasingly, adapting an existing screening instrument is a common, fast method to create a usable screening tool, especially for countries with limited resources and/or expertise. However, concerns have been raised regarding adaptation adequacy and the feasibility of screening across cultural groups. This study systematically examined the levels of cultural adaptation and feasibility aspects considered when screening for autism in non-English speaking countries to build upon the sparse knowledge that exists on this topic in the literature.MethodsNineteen studies, obtained from five electronic databases, were examined. PRISMA guidance was used for this review. The Ecological Validity Framework model, and Bowen Recommendations for Feasibility were adopted to extract relevant data, which was synthesised narratively.ResultsCultural adaptation within the included studies mostly involved language translation with little information offered to enable conclusions on how the processes were guided and maintained. Few cultural adjustments involved modifying screening methods; clarifying difficult concepts and changing instrument content were employed to address the core values, competence, beliefs, and norms of the adapted culture. However, less attention was given to adapt the screening goals within the context of cultural values, and customs or to consider interactional match between the clients and assessors. The review also highlighted an acceptable level of practicality to screen for autism but did not encourage integrating autism screening within routine practice or beyond the study context for different cultures.ConclusionConcurring with previous literature, we agree that knowledge on cultural adaptation for autism screening instruments is limited and not sufficiently documented to establish adaptation levels (process and/or contents), and prove adequacy. However, this review provides an infrastructure to improve future adaptation processes. Integrating autism screening as routine medical practice is not encouraged and warrants further feasibility studies to minimize wasted resources and improve screening effectiveness in various health care systems.

Herpes simplex virus: 'to disclose or not to disclose.' An exploration of the multi-disciplinary team's role in advising patients about disclosure when diagnosed with genital herpes simplex virus.

The first UK prosecution for genital herpes simplex virus (HSV) transmission in 2011 attracted strong criticism from medical experts. To address the dearth of research on the topic, this study aimed to explore the nature of advice given to patients by the multidisciplinary team (MDT) in the West of Scotland on HSV disclosure to partners. Ten semi-structured interviews with members of the MDT were conducted and the interviews were analysed using Burnard’s Thematic Content Analysis. Four themes emerged which explored practitioners’ knowledge of HSV and their feelings regarding the emotional aspects of the diagnosis on clients including the challenges of discussing disclosure. Within this framework, participants’ attitudes to the legal prosecution were also surveyed. This study revealed that participants had good knowledge about HSV. Furthermore, participants believed disclosure to be the patient’s choice and had not altered their practice to advise disclosure to all partners in accordance with local protocol. However, there was a general consensus that disclosure was not required due to the prevalence of HSV and prevalence was used to dissipate emotional reactions to HSV diagnosis.

Emotion Recognition in Children With Down Syndrome: Influence of Emotion Label and Expression Intensity

Some children with Down syndrome may experience difficulties in recognizing facial emotions, particularly fear, but it is not clear why, nor how such skills can best be facilitated. Using a photo-matching task, emotion recognition was tested in children with Down syndrome, children with nonspecific intellectual disability and cognitively matched, typically developing children (all groups N = 21) under four conditions: veridical vs. exaggerated emotions and emotion-labelling vs. generic task instructions. In all groups, exaggerating emotions facilitated recognition accuracy and speed, with emotion labelling facilitating recognition accuracy. Overall accuracy and speed did not differ in the children with Down syndrome, although recognition of fear was poorer than in the typically developing children and unrelated to emotion label use. Implications for interventions are considered.

Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers

Abstract Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explores views on the wider aspects of voting against the backdrop of the Scottish referendum using focus groups involving people with intellectual disabilities (n = 12), family carers (n = 7) and paid carers (n = 5). Findings revealed that people with intellectual disabilities had similar concerns to the general population about the referendum. Regarding voting, all groups identified the need to discuss issues and for practical support and accessible information to ensure informed choices were made when voting.

Failure of care in mental health trust: Déjà vu in terms of treatment of people with learning disabilities?

Iacobucci’s article asks how the needs of people with learning disabilities are to be met.1 The government now promises ratings on the quality of care offered to this group, yet such commitments in the past have had little impact. Over five decades there has been a catalogue of failures,2 3 …