Mental health and well-being of fathers of children with intellectual disabilities: systematic review and meta-analysis

BACKGROUND: Caring for a child with intellectual disabilities can be a very rewarding but demanding experience. Research in this area has primarily focused on mothers, with relatively little attention given to the mental health of fathers. AIMS: The purpose of this review was to summarise the evidence related to the mental health of fathers compared with mothers, and with fathers in the general population. METHOD: A meta-analysis was undertaken of all studies published by 1 July 2018 in Medline, PsycINFO, CINAHL and EMBASE, using terms on intellectual disabilities, mental health and father carers. Papers were selected based on pre-defined inclusion and exclusion criteria. RESULTS: Of 5544 results, 20 studies met the inclusion criteria and 12 had appropriate data for meta-analysis. For comparisons of fathers with mothers, mothers were significantly more likely to have poor general mental health and well-being (standardised mean difference (SMD) -0.38, 95% CI -0.56 to -0.20), as well as higher levels of depression (SMD, -0.46; 95% CI -0.68 to -0.24), stress (SMD, -0.32; 95% CI -0.46 to -0.19) and anxiety (SMD, -0.30; 95% CI -0.50 to -0.10). CONCLUSIONS: There is a significant difference between the mental health of father and mother carers, with fathers less likely to exhibit poor mental health. However, this is based on a small number of studies. More data is needed to determine whether the general mental health and anxiety of father carers of a child with intellectual disabilities differs from fathers in the general population

Trends and variations in per capita expenditure on adult intellectual disabilities health and social care across Scotland, and by urban/rural class

Background: Following the global financial crisis in 2007/08, the UK implemented an austerity programme which may impact on services. Scotland comprises both densely-populated urban conurbations and highly-dispersed remote rural and island communities. Methods: Expenditure data were extracted from Scottish Government statistics. Per capita expenditure was calculated using adjusted Scotland’s 2011 census data. Results: There was a 3.41% decrease in real term expenditure on adult intellectual disabilities services between 2012/13 and 2014/15 (>£32million). In 2014/15, per capita expenditure on adult intellectual disabilities health care ranged from £1,211-£17,595; social care from £21,147-£83,831; combined health and social care expenditures from £37,703-£85,929. Per capita expenditure on combined health and social care was greater in rural areas; with more on intellectual disabilities social care, though less on health care. Conclusions: Scottish expenditure on adult intellectual disabilities services has not kept abreast of rising living costs. It varies considerably across the country: a post-code lottery

Belonging and reciprocity amongst people with intellectual disabilities: a systematic methodological review

Background: Social inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities. Method: A systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed. Results: Seventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed. Conclusions: More nuanced conceptualisations of belonging and reciprocity may be helpful in future research, to better capture the context and meaning of individual lives and relationships

Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study

Abstract: Objectives To investigate the prevalence of multimorbidity in adults with intellectual disabilities with and without Down syndrome. Design: Large, population-based cross-sectional study. Setting: The geographical area of one Health Board, Scotland. Participants: All adults (aged 16+ years) known to general practitioners to have intellectual disabilities and adults receiving services provided or paid by intellectual disabilities health or social work services. 1023/1562 potential participants took part (65.5%); 562 (54.9%) men and 461 (45.1%) women, aged 43.9 years (16–83 years). 186 had Down syndrome and 837 did not. Main outcome measures: The prevalence of International Statistical Classification of Diseases, 10th revision, physical health conditions and multimorbidity detected at a comprehensive health assessment. Results: The mean number of physical health conditions/participant was 11.04, and 98.7% had multimorbidity. The most prevalent conditions are painful and/or disabling and, in some cases, life threatening. The five most prevalent were visual impairment, obesity, epilepsy, constipation and ataxic/gait disorders. The pattern of multimorbidity differs from that seen in the general population and is spread across the entire adult life course. The extent of multimorbidity in the adults with Down syndrome was similar to that of the adults without Down syndrome, while the prevalence of individual conditions differed. Conclusions: This robustly designed study with a large population found an extremely high prevalence of multimorbidity in adults with intellectual disabilities across the entire adult life course. This increases complexity of medical management that secondary healthcare services and medical education are not yet geared towards, as these tend to focus on single conditions. This is in addition to complexity due to limitations in communication and understanding. As the physical conditions within their multimorbidity also differ from that seen in the older general population, urgent attention is needed to develop the care pathways and guidelines that are required to inform and so improve their healthcare

Cultural adaptation of self-management of type 2 diabetes in Saudi Arabia (qualitative study)

Background: Saudi Arabia is continuously working on developing its health care system, however with the high prevalence of type 2 diabetes and comorbidities, such as cardiovascular diseases, self-management education programmes are essential. As part of a planned series of studies to develop a culturally sensitive type 2 diabetes self-management programme, this study explores the need versus barriers and facilitators relevant to implementing a national programme for type 2 diabetes self-management education within the community and health care system in Saudi Arabia. Methods: A qualitative methodology was used to explore the views of a multidisciplinary group of diabetes health professionals and adult patients with type 2 diabetes. The views of nine health professionals working at a specialised diabetes care centre were gathered at two focus groups (four and five) that included doctors, nutritionists, health educators and nurses. Individual interviews with 12 patients with type 2 diabetes (six females and six males) attending the centre were also carried out. Recurring themes through the translated transcripts were studied and treated by the research group under pre-set protocols. Results: Focus groups with health professionals revealed three main themes. 1. Resources: availability of resources and how they impacted on performance and patients’ care; 2.Familiarity with self-management education programmes: educating patients and raising awareness among them; and 3. Lifestyle: patients’ lifestyle and how it could affect their compliance with self-management programmes. Interviews with patients also revealed three main themes. 1. Habits: post diagnosis changes in patients’ attitudes and behaviours towards diet and physical activity; 2. Health education: awareness of managing type 2 diabetes through health centre advice or self-education; and 3. Culture and society: a lack of cultural or social support created by some social practices or conventions. Conclusion: The findings from this study highlight a gap in type 2 diabetes care system that can be breached through the development of a Saudi specific self-management programme for type 2 diabetes. The identified barriers and facilitators can be used for adapting a self-management programme to the Saudi context. However, initial training is needed for local health professionals to understand the mechanisms of self-management programmes. Such programmes will need to infiltrate to the society, and the patients’ families, in particular to tackle the rising prevalence of type 2 diabetes in Saudi Arabia and provide a friendlier, more supportive environment for the current patients to self-manage their diabetes

Correlates of type 2 diabetes and glycaemic control in adults in Saudi Arabia a secondary data analysis of the Saudi health interview survey

BACKGROUND:There is evidence that type 2 diabetes self-management programmes may have a positive impact on health outcomes of adults living in Gulf countries. However, none of the programmes evaluated were developed using evidence about the specific needs of adults with Type 2 diabetes living in the Gulf countries. This study is part of a wider programme of research, which uses a cultural adaptation framework to generate information on how to tailor type 2 diabetes self-management to the Saudi context. METHODS:Secondary data analysis of the Saudi Health Interview Survey (SHIS) (N = 10,821) was conducted. Bivariate and multivariate logistic regression modelling assessed factors associated with type 2 diabetes and its control / self-management including sociodemographic factors (e.g. age, gender), lifestyle (e.g. diet, physical activity), and health seeking behaviours (e.g. chronic illnesses, health services). RESULTS:7% (N = 808) of all participants had type 2 diabetes (59% male), however it represents 35% at or above 55 years. In multivariate analysis at older age, being overweight or obese, male, having hypertension, and reporting a reduction in health status in the 12 months prior to questionnaire completion, were significantly associated with having type 2 diabetes. Participants who reported walking for more than 10 min per day were less likely to report type 2 diabetes. Unexpectedly there was a significant association between type 2 diabetes and lower frequency of fast food intake, while increased fruit and vegetable intake was associated with poor glycaemic control. CONCLUSIONS:Being overweight and/or hypertensive are concomitant with type 2 diabetes in Saudi Arabia. Any self-management programmes for type 2 diabetes patients with either of these conditions should be tailored accordingly. Walking behaviours should be prioritised in Saudi self-management programmes. Prediabetes management programmes may be of special importance to the Saudi community

The relative influence of intellectual disabilities and autism on sensory impairments and physical disability:A whole‐country cohort of 5.3 million children and adults

Background: Intellectual disabilities and autism are lifelong and often co‐occur. Little is known on their extent of independent association with sensory impairments and physical disability. Methods: For Scotland's population, logistic regressions investigated age–gender‐adjusted odds ratios (OR) of associations, independently, of intellectual disabilities and autism with sensory impairments and physical disability. Results: 1,548,819 children/youth, and 3,746,584 adults. In children/youth, the effect size of intellectual disabilities and autism, respectively, was as follows: blindness (OR = 30.12; OR = 2.63), deafness (OR = 13.98; OR = 2.31), and physical disability (OR = 43.72; OR = 5.62). For adults, the effect size of intellectual disabilities and autism, respectively, was as follows: blindness (OR = 16.89; OR = 3.29), deafness (OR = 7.47; OR = 2.36), and physical disability (OR = 6.04; OR = 3.16). Conclusions: Intellectual disabilities have greater association with the population burden of sensory impairments/physical disability, but autism is also associated regardless of overlap with intellectual disabilities. These may impact further on communication limitations due to autism and intellectual disabilities, increasing complexity of assessments/management of other health conditions. Clinicians need to be aware of these important issues

Rates and causes of mortality among children and young people with and without intellectual disabilities in Scotland: a record linkage cohort study of 796,190 schoolchildren

Objectives: To investigate mortality rates and causes in children and young people with intellectual disabilities. Design: Retrospective cohort; individual record linkage between Scotland’s annual pupil census and National Records of Scotland death register. Setting: General community. Participants: Pupils receiving local authority-funded schooling in Scotland, 2008 to 2013, with an Additional Support Need due to intellectual disabilities, compared with other pupils. Main outcome measures: Deaths up to 2015: age of death, age-standardised mortality ratios (age-SMRs); causes of death including cause-specific age-SMRs; avoidable deaths as defined by the UK Office of National Statistics. Results: 18 278/947 922 (1.9%) pupils had intellectual disabilities. 106 died over 67 342 person-years (crude mortality rate=157/100 000 person-years), compared with 458 controls over 3 672 224 person-years (crude mortality rate=12/100 000 person-years). Age-SMR was 11.6 (95% CI 9.6 to 14.0); 16.6 (95% CI 12.2 to 22.6) for female pupils and 9.8 (95% CI 7.7 to 12.5) for male pupils. Most common main underlying causes were diseases of the nervous system, followed by congenital anomalies; most common all-contributing causes were diseases of the nervous system, followed by respiratory system; most common specific contributing causes were cerebral palsy, pneumonia, respiratory failure and epilepsy. For all contributing causes, SMR was 98.8 (95% CI 69.9 to 139.7) for congenital anomalies, 76.5 (95% CI 58.9 to 99.4) for nervous system, 63.7 (95% CI 37.0 to 109.7) for digestive system, 55.3 (95% CI 42.5 to 72.1) for respiratory system, 32.1 (95% CI 17.8 to 57.9) for endocrine and 14.8 (95% CI 8.9 to 24.5) for circulatory system. External causes accounted for 46% of control deaths, but the SMR for external-related deaths was still higher (3.6 (95% CI 2.2 to 5.8)) for pupils with intellectual disabilities. Deaths amenable to good care were common. Conclusion: Pupils with intellectual disabilities were much more likely to die than their peers, and had a different pattern of causes, including amenable deaths across a wide range of disease categories. Improvements are needed to reduce amenable deaths, for example, epilepsy-related and dysphagia, and to support families of children with life-limiting conditions

The relative influence of intellectual disabilities and autism on mental and general health in Scotland: a cross-sectional study of a whole country of 5.3 million children and adults

Objectives: To determine the relative extent that autism and intellectual disabilities are independently associated with poor mental and general health, in children and adults. Design: Cross-sectional study. For Scotland’s population, logistic regressions investigated odds of intellectual disabilities and autism predicting mental health conditions, and poor general health, adjusted for age and gender. Participants: 1 548 819 children/youth aged 0-24 years, and 3 746 584 adults aged more than 25 years, of whom 9396/1 548 819 children/youth had intellectual disabilities (0.6%), 25 063/1 548 819 children/youth had autism (1.6%); and 16 953/3 746 584 adults had intellectual disabilities (0.5%), 6649/3 746 584 adults had autism (0.2%). These figures are based on self-report. Main outcome measures: Self-reported general health status and mental health. Results: In children/youth, intellectual disabilities (OR 7.04, 95% CI 6.30 to 7.87) and autism (OR 25.08, 95% CI 23.08 to 27.32) both independently predicted mental health conditions. In adults, intellectual disabilities (OR 3.50, 95% CI 3.20 to 3.84) and autism (OR 5.30, 95% CI 4.80 to 5.85) both independently predicted mental health conditions. In children/youth, intellectual disabilities (OR 18.34, 95% CI 17.17 to 19.58) and autism (OR 8.40, 95% CI 8.02 to 8.80) both independently predicted poor general health. In adults, intellectual disabilities (OR 7.54, 95% CI 7.02 to 8.10) and autism (OR 4.46, 95% CI 4.06 to 4.89) both independently predicted poor general health. Conclusions: Both intellectual disabilities and autism independently predict poor health, intellectual disabilities more so for general health and autism more so for mental health. Intellectual disabilities and autism are not uncommon, and due to their associated poor health, sufficient services/supports are needed. This is not just due to coexistence of these conditions or just to having intellectual disabilities, as the population with autism is independently associated with substantial health inequalities compared with the general population, across the entire life course