The willingness of UK adults with intellectual disabilities to take COVID-19 vaccines.

BACKGROUND: Given the much greater COVID-19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID-19 vaccine is a major public health issue. METHOD: In December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. RESULTS: Eighty-seven per cent of interviewees with ID were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic. CONCLUSIONS: Reported willingness to take the COVID-19 vaccine is high among adults with ID in the United Kingdom, with factors associated with willingness having clear implications for public health policy and practice.

Cancer and breast cancer awareness interventions in an intellectual disability context: A review of the literature.

BACKGROUND: Women with an intellectual disability (ID) have a similar risk of developing breast cancer as women in the general population yet present with later stage breast cancers, which have poorer outcomes. AIM: To identify whether there is a need to develop a breast cancer awareness intervention for women with an ID. METHODS: Interventions aimed at increasing cancer awareness and breast cancer awareness for people with an ID were identified and critically appraised. RESULTS: Five interventions to increase cancer awareness or breast cancer awareness in people with an ID were identified. CONCLUSION: The review highlighted the paucity of theoretically underpinned breast cancer awareness interventions specifically aimed at women with an ID. Facilitating breast cancer awareness for women with an ID could potentially lead to earlier presentation of potential symptoms of breast cancer, earlier treatment, better prognosis and ultimately, improved survival. This article establishes that there is a need for an intervention underpinned by theory to increase breast cancer awareness in women with an ID.

Characteristics of diabetes medication-taking in people with mild to moderate intellectual disability compared to those without: a mixed-methods study.

AIM: To compare the frequency and factors associated with diabetes medication-taking (depression, perceived side effects, self-efficacy and social support) in people with mild to moderate intellectual disability and those without intellectual disability. METHODS: In stage 1 of this study, we collated information on diabetes medication-taking and associated factors in 111 people with diabetes: 33 adults with mild to moderate intellectual disability and 78 adults without intellectual disability. Validated instruments measuring medicine-taking, self efficacy, depressive symptoms, perceived level of social support and perceived side effects were administered in both groups. In stage 2, we used an abductive qualitative approach to triangulate stage 1 findings with carers responses (n = 12). RESULTS: The instruments showed good internal reliability (Cronbach's α = 0.7-0.9). Comparisons between people with intellectual disabilities and those without revealed similar frequency of medication-taking (70% vs 62%; P = 0.41). People with intellectual disabilities and diabetes had significantly higher depressive symptoms, as measured by the Glasgow Depression Scale for people with a Learning Disability (P = 0.04), higher levels of perceived side effects (P = 0.01), and lower confidence levels, as measured by the Perceived Confidence Scale (P = 0.01). The results of stage 2 showed how carers of people with intellectual disabilities and diabetes optimized medication-taking yet infrequently discussed the side effects of medicines. CONCLUSIONS: Further investigation of medication-taking and side effects may result in the development of an evidence-informed intervention to improve medicines safety in people with intellectual disabilities.

Health Promotion and Wellness Initiatives Targeting Chronic Disease Prevention and Management for Adults with Intellectual and Developmental Disabilities: Recent Advancements in Type 2 Diabetes.

PURPOSE OF REVIEW: The aim of this paper was to review the recent international developments in health promotion and wellness initiatives targeting chronic disease prevention and management for adults with intellectual and developmental disabilities (IDD) targeting type 2 diabetes (T2D). RECENT FINDINGS: There has been one diabetes prevention program (STOP) and two self-management T2D education programs (DESMOND-ID; OK diabetes) adapted for this population. All three programs have been adapted from other theoretically informed and tested programs developed for the general population. Each program has employed co-design and co-production techniques with all stakeholders. The three programs all target the high-risk lifestyle factors that can lead to T2D and contribute to poor glycaemia control, and have undertaken randomized-feasibility studies, the results of which are promising. SUMMARY: This paper shows that any health promotion and wellness initiatives need to be tailored and reasonable adjustments made in order to address this population's cognitive impairments and communication difficulties.

Multiple traumatisation and subsequent psychopathology in people with intellectual disabilities and DSM-5 PTSD: a preliminary study.

BACKGROUND: Individuals with intellectual disability (ID) are at greater risk of exposure to traumatic life events compared with the non-ID population. Yet no study to date has examined the role of multiple traumatisation and subsequent psychopathology in people with ID. The aim of this study was to explore the association between multiple traumatisation and subsequent mental health. METHODS: A preliminary cross-sectional study involving 33 participants with DSM-5 post-traumatic stress disorder completed self-report questionnaires on exposure to traumatic life events and post-traumatic stress disorder symptoms, anxiety, depression and general distress. RESULTS: A proportion of 42.4% of the sample reported multiple traumatisation, including exposure to life events in both childhood and adulthood. Those who reported exposure to life events in childhood and adulthood reported significantly higher risk of harm, depression and general psychological distress compared with those who reported exposure to life events only in adulthood. CONCLUSIONS: Preliminary results indicate that more severe psychopathology is associated with multiple traumatisation in childhood and adulthood compared with trauma experienced solely in adulthood.

Pilot feasibility study examining a structured self-management diabetes education programme, DESMOND-ID, targeting HbA1c in adults with intellectual disabilities.

AIM: To report on the outcomes of a pilot feasibility study of a structured self-management diabetes education programme targeting HbA1c . METHODS: We conducted a two-arm, individually randomized, pilot superiority trial for adults with intellectual disability and Type 2 diabetes mellitus. A total of 66 adults with disabilities across the UK met the eligibility criteria. Of these, 39 agreed to participate and were randomly assigned to either the DESMOND-ID programme (n = 19) or a control group (n = 20). The programme consisted of seven weekly educational sessions. The primary outcome was HbA1c level, and secondary outcomes included BMI, diabetes illness perceptions, severity of diabetes, quality of life, and attendance rates. RESULTS: This study found that the DESMOND-ID programme was feasible to deliver. With reasonable adjustments, the participants could be recruited successfully, and could provide consent, complete the outcome measures, be randomized to the groups and attend most of the sessions, with minimal loss to follow-up. The fixed-effects model, the interaction between occasion (time) and condition, showed statistically significant results (0.05 level) for HbA1c ; however, the CI was large. CONCLUSION: This is the first published study to adapt and pilot a national structured self-management diabetes education programme for adults with intellectual disability. This study shows it is possible to identify, recruit, consent and randomize adults with intellectual disabilities to an intervention or control group. Internationally, the results of this pilot are promising, demonstrating that a multi-session education programme is acceptable and feasible to deliver. Its effectiveness should be further tested in an adequately powered trial.

Improving diabetes care for people with intellectual disabilities: a qualitative study exploring the perceptions and experiences of professionals in diabetes and intellectual disability services.

BACKGROUND: Globally, diabetes is increasing with concerns about the impact on outcomes, including premature death and the costs associated with managing the condition. Research indicates that adults with intellectual disabilities (ID) are two to three times more likely to develop diabetes; however, there has been limited focus on diabetes service utilisation in this population. The aim of this study is to explore the perceptions and experiences of diabetes and ID practitioners. METHODS: A series of 1:1 semi-structured interviews were undertaken in one Scottish health service area. In total, 29 qualitative interviews were conducted: 10 with diabetes practitioners from primary and secondary care, 14 from ID services and 5 from community care services regarding diabetes service provision for this population. Thematic content analysis was undertaken to identify the themes and subthemes. RESULTS: Three main themes were identified: (1) enabling access to services to meet diabetes-related care needs of people with ID; (2) communication and service improvements between staff, patients and across services; and (3) providing person-centred diabetes care and developing adapted resources to increase patient self-care. CONCLUSIONS: The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if 'reasonable adjustments' are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

Protein disulphide isomerase as a target for nanoparticle-mediated sensitisation of cancer cells to radiation.

Radiation resistance and toxicity in normal tissues are limiting factors in the efficacy of radiotherapy. Gold nanoparticles (GNPs) have been shown to be effective at enhancing radiation-induced cell death, and were initially proposed to physically enhance the radiation dose deposited. However, biological responses of GNP radiosensitization based on physical assumptions alone are not predictive of radiosensitisation and therefore there is a fundamental research need to determine biological mechanisms of response to GNPs alone and in combination with ionising radiation. This study aimed to identify novel mechanisms of cancer cell radiosensitisation through the use of GNPs, focusing on their ability to induce cellular oxidative stress and disrupt mitochondrial function. Using N-acetyl-cysteine, we found mitochondrial oxidation to be a key event prior to radiation for the radiosensitisation of cancer cells and suggests the overall cellular effects of GNP radiosensitisation are a result of their interaction with protein disulphide isomerase (PDI). This investigation identifies PDI and mitochondrial oxidation as novel targets for radiosensitisation.

Clostridium difficile infection incidence: impact of audit and feedback programme to improve room cleaning.

BACKGROUND: Audit and feedback programmes (AFPs) using fluorescent marking lead to improvements in room cleaning but have not been linked to reduced Clostridium difficile infection (CDI) incidence. AIM: To evaluate the impact of an AFP on hospital-acquired CDI incidence. METHODS: In 2012, a hospital-wide AFP was implemented. Fluorescent marking of high-touch surfaces was used to assess discharge cleaning thoroughness. Weekly audit results were presented to cleaning staff. Interrupted time-series analysis was used to test for changes in the trend and level of hospital-acquired CDI incidence between the pre-intervention (January 2008 to December 2011) and post-intervention (April 2012 to June 2015) periods. FINDINGS: In all, 1002 audits were performed and room cleaning thoroughness improved from 49% to 90%. Hospital-acquired CDI incidence fell from 54 to 42 cases per 100,000 patient-days following the intervention whereas non-hospital-acquired CDI incidence rose from 43 to 52 cases per 100,000 patient-days, although both exhibited a downward trend post intervention. Time-series analysis showed that hospital-acquired CDI incidence was declining at a rate of 0.59 cases per 100,000 patient-days per quarter before the intervention. Following programme implementation, the rate of decline accelerated by an additional 1.35 cases per 100,000 patient-days per quarter (P < 0.05). Hand hygiene compliance increased minimally post intervention. CONCLUSION: Implementation of an AFP using fluorescent marking resulted in improved thoroughness of room cleaning and appeared to result in an enhanced downward trend in CDI incidence, although part of this decline could be due to changes in local CDI epidemiology or improved hand hygiene.

Management and quality indicators of diabetes mellitus in people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities (ID) are at a higher risk of developing diabetes compared with the non-intellectually disabled population, as a consequence of genetic syndromes and because this cohort are more exposed to many of the identified risk factors. However, little is known about the management of diabetes in this population. The aim of this study was to examine the demographics, health and the diabetes quality of care indicators used with people with ID in one region of the UK. METHODOLOGY: This was a quantitative study using a postal survey design. An anonymised questionnaire was posted to all community ID teams and supported living/residential facilities requesting information on the demographics, health and quality of care indicators for people with ID who have diabetes on their caseloads. RESULTS: In total 186 questionnaires were returned. Results showed that 125 people with ID had Type 2 diabetes (67%) and 61 people had Type 1 (33%). Significantly more people with Down syndrome and Autistic Spectrum Disorder had Type 1 diabetes. This study found that 6% had glycossylated glucose levels (HbA1c) greater than 9.5% and for 52% the levels were between 6.5% and 9.4%. Individuals reported to have poor glycaemic control were statistically more likely to have Type 1 diabetes and be younger, live with parents or independently and be obese. Results also illustrate that the national standards for good diabetes management were only partially met. DISCUSSION: Because of their enhanced predisposition for the development of diabetes this population merits particular attention with regards to screening for the onset of diabetes. The extent to which the quality of diabetes care indicators were achieved was variable but results suggest that for many people the indices were not met, that glycaemic control was poor, that only a quarter were of normal weight, that many were hypertensive and that almost a quarter had no record of their lipid levels. These findings provoke two important questions: first, who should be responsible for promoting diabetes management in this client group and second, how can service provision be tailored to better meet their needs? Greater collaborative working and education is required between ID services, primary healthcare and diabetes clinicians in order to promote the health and meet the quality indicators of diabetes care among this population.

The role of community nurses and residential staff in supporting women with intellectual disability to access breast screening services.

BACKGROUND: Women with intellectual disability (ID) are surviving to the age group at greatest risk of developing breast cancer (50-69 years). These women are more likely to experience a greater number of risk factors placing them at an advanced threat of developing breast cancer. However, as a result of cognitive deficits and communication difficulties these women are dependent upon staff to support them to attend the breast screening clinics. AIM: The aim of this paper was to examine how community nurses and residential staff support women with ID to access breast screening services. METHODOLOGY: Six focus groups were held with community nurses and residential staff who work in the field of ID in one region of the UK. The focus groups were tape recorded and the transcriptions were subjected to a thematic content analysis. FINDINGS: Although many of the participants recognised the risk factors and signs/symptoms of breast cancer, there was still a deficit of knowledge. Both positive and negative experiences of women with ID attending for breast screening were reported; however, greater discussion focused on the latter. The participants identified 'a lack of health educational material' and also negative 'emotions, attitudes and physical barriers' as inhibiting factors for attendance. DISCUSSION: This paper highlights the need for developing a health promotion programme for women with ID focusing on breast awareness and information on screening, and also healthier lifestyles. Breast awareness via visual checks was identified for women with ID who refused to attend the breast clinics; however, issues of informed 'consent' and 'vulnerability' were raised for staff and also family carers having to undertake these checks. Development of user-friendly health educational literature using 'pictures, symbols, signs' and simplified words should be accessible to all ID staff, healthcare staff, and also women with ID.

Cancer prevention and health promotion for people with intellectual disabilities: an exploratory study of staff knowledge.

BACKGROUND: As people with intellectual disabilities (ID) are living longer, their chances of developing cancer also increases. However, recognising the early signs and symptoms of cancer in a population with cognitive impairment and communication difficulties poses difficulties for both family carers and professional care staff. Engagement in health promotion and cancer prevention activities is also a challenge; yet, people with ID have an equal right to these important public services as other members of the population. AIMS: The aim of this study was to examine how care staff engaged in cancer prevention and health promotion activities on behalf of people with ID. METHODS: This was an exploratory descriptive study using a postal survey design employing a questionnaire. Fifteen residential facilities for adults with ID were targeted within one geographic region of the UK. In total, 40 residential staff completed a questionnaire about their knowledge of the risk and protective factors of stomach, breast, cervical and testicular cancer. Staff then completed questionnaires regarding 90 adults with ID, recording details about body mass index (BMI), lifestyle choices (i.e. smoking, dietary intake), Helicobacter pylori testing, family history of cancer and staff's health promotion and cancer prevention activities with these individuals. FINDINGS: The women with ID were reported to have significantly higher BMIs than the men with ID and only two people with ID had been tested for the H. pylori infection: potential risk factors for developing breast and stomach cancer, respectively. The majority of the staff reported that they did not receive training in cancer prevention. Likewise, the majority of the staff reported that they were unaware of the family histories of the people with ID in their care. Reports varied with how staff engaged with people with ID regarding stomach, breast, cervical and testicular cancer health promotion activities and cancer screening opportunities. DISCUSSION: Findings of this study show that health promotion and cancer prevention activities for people with ID may be less than optimal. The importance of staff training in order to raise knowledge and awareness is highlighted. Educating both staff and people with ID about the early signs and symptoms of cancer and the importance of a healthy lifestyle as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.

Supporting women with intellectual disabilities to access breast cancer screening: a healthcare professional perspective.

Cancer prevention has been identified as the most cost-effective strategy for cancer control. This should extend to all groups including women with intellectual disability, seeking to access breast cancer screening. The purpose of this study was to explore the role of healthcare professionals, such as primary healthcare staff (n= 8) and breast care staff (n= 10), on supporting women with intellectual disability to access breast screening in one region in the UK. A qualitative approach using focus groups and telephone interviews was adopted. Healthcare professionals identified that not only was it important that women with intellectual disability undergo regular breast screening but that they should have the same rights as other women to access breast screening services. While many varied risk factors for breast cancer in women with intellectual disability were noted, the level of cognitive functioning was clearly significant. Barriers to accessing breast screening included literacy problems, consent issues and physical health; practical barriers such as transport and timing of appointment; and barriers attributed to healthcare professionals, including staff attitude and lack of awareness and training. The participants identified the need to raise awareness and health promotion education not only for the women with intellectual disability but also for healthcare professionals, alongside developing more interdisciplinary practice.

Staffs' knowledge and perceptions of working with women with intellectual disabilities and mental health problems.

AIM: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within mainstream psychiatry on gender. The aim of this study was to explore a range of health and social care staffs' knowledge and perceptions of caring for women with ID who have mental health problems focusing upon risk and resilient/protective factors. METHOD: A qualitative methodology was used. Eight focus groups were conducted with hospital, community and residential staff across one region of the UK. The focus groups were audiotaped and the transcriptions were subjected to a thematic content analysis using Newell & Burnard's framework. FINDINGS: Six inter-related risk factors were identified by the participants as potential causes for the women with ID to develop a mental illness and these were: having an ID and being female, unmet expectations, dysfunctional family upbringing, unstable relationships/loss of children, domestic violence and negative life experiences. Few of the participants acknowledged hormonal issues as a risk factor. Resilient/protective factors included being proactive, greater community participation, early recognition and mental health maintenance. CONCLUSION: These results are discussed in light of current developments and policy within mainstream psychiatric gender approaches. Greater recognition of a proactive health approach for both staff and women with an ID is recommended.

Individual, life events, family and socio-economic factors associated with young people with intellectual disability and with and without behavioural/emotional problems.

The aim of this study was to compare a range of individual, life events, family and socio-economic factors associated with young people with intellectual disabilities and with and without behavioural/emotional problems. Teachers in 16 schools in one region of the UK completed a postal questionnaire on 249 young people with intellectual disabilities aged between 11 and 19 years. There were two groups: 155 young people with behavioural/emotional issues, and 94 without. Using a binary logistic regression analysis, a number of individual, life events, family and socio-economic risk factors were found to be significantly associated with emotional/behavioural problems. The results are discussed alongside findings from other studies. The importance of a multidimensional assessment is highlighted, as well as the interdependent nature of the risk factors.

Listening to women with intellectual disabilities and mental health problems: a focus on risk and resilient factors.

Women without intellectual disabilities are more likely to develop mental health problems as a result of physiological functioning and psychosocial risk factors. However, little is known about the mental health of women with intellectual disabilities. The aim of this study was to explore a small group of women's perceptions of the risk and protective factors pertaining to their mental health conditions. Twelve semi-structured interviews were conducted in 2007 in Northern Ireland. Thematic content analysis identified three risk factors and four protective/resilient factors. None of the women identified physiological functioning as a risk factor. Results suggest that women with intellectual disabilities experience psychosocial risk factors similar to those reported by women without intellectual disability. Additional risk factors place them at higher risk of developing mental health problems. However, more research is required.

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems.

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.

Women with and without intellectual disability and psychiatric disorders: an examination of the literature.

This article examines the literature on women with and without intellectual disability and psychiatric disorders, using a gender social model of health. Relevant empirical studies, international literature reviews and policies between 1980 and 2007 were identified from electronic databases, journals and secondary sources. Three areas were examined: psychiatric disorders, their contextual background, and their clinical presentation. There are minimal levels of research into women with intellectual disability and psychiatric disorders. However, this article hypothesizes that women with intellectual disability have higher rates of psychiatric disorders than women without. This may result from greater vulnerability related both to internal factors (;intra': cognitive deficits, poorer communication skills, limited social skills) and to the external world (;inter': lack of opportunities, stigma, poor social support networks). The article argues that such women require gender-sensitive mental health services. However, more empirical evidence is required to support this claim and to inform development and delivery of services.

Addressing the mental health needs of people with learning disabilities.

It is now common policy in providing care for people with learning disabilities to ensure improved access to mainstream health services. Consequently, all nursing disciplines are required to have improved understanding about the physical and mental health needs of this client group. This article focuses on their mental health needs. It is predominantly targeted at mental health and learning disability nurses, but will be of interest to all nurses who increasingly come into contact with people with a learning disability and require insight into all aspects of their health.

An exploratory study of teachers' knowledge about the symptoms of depression in young people with and without intellectual disabilities.

Research has shown that children and young people with intellectual disabilities are at a greater risk of developing a psychiatric disorder than their non-disabled peers. However, no information exists regarding teachers' knowledge of the signs and symptoms of these conditions. Using a postal questionnaire, 36 teachers working within schools for children and young people with severe intellectual disabilities in one part of the UK were asked about their knowledge of depression. Results indicated that the teachers reported few signs and symptoms. Furthermore, the teachers also highlighted a lack of confidence in working with this doubly disadvantaged population. This study shows that teachers have a vital role to play in the early recognition of psychiatric signs and symptoms in young people with intellectual disabilities. Teachers must also receive the appropriate education and training in an attempt to prompt early referral to specialists for a detailed and comprehensive psychiatric assessment rather than continuing to manage such young people's challenging behaviours.