A Phenomenological Exploration of Families' Experiences of the Mental Health System of Care in the Monadnock Region.

Accessing mental health treatment in rural locations is a unique challenge for families with youth experiencing adverse mental health conditions. Families often experience a variety of difficulties accessing and negotiating changes within the system of care. This study aimed to understand the experiences of families and their youth in navigating the mental health system in a rural community. Interpretative phenomenological analysis was used to examine how participants interpret their experiences within the local system of care. Qualitative interviews were conducted with eight families. Results included five main themes: youth experience, family experience, access to a system of care, relationships between stakeholders, and larger societal beliefs. Families highlighted their experiences accessing the local care system and their hope for strengthening community access and partnerships. Findings indicate that prioritizing family voices should be encouraged by local systems.

Conducting community rehabilitation review sessions via videoconference: A feasibility study.

OBJECTIVE: To determine the feasibility of conducting a single videoconferencing session (telerehabilitation) instead of a face-to-face home visit for a review appointment in a community rehabilitation program. DESIGN: A feasibility study based on Bowen's framework was used to determine demand, acceptability, limited efficacy and practicality of telerehabilitation. The study involved qualitative and quantitative data analysis. SETTING: Two Victorian community rehabilitation programs providing services to large geographical catchment zones in the outer fringe of a metropolitan area. PARTICIPANTS: Ten adult clients receiving home-based therapy and 5 allied health clinicians working in the program. INTERVENTIONS: Clients participated in a single review therapy appointment (telerehabilitation) from physiotherapy, dietetics or speech pathology using the health network's videoconferencing platfrom and the client's own electronic device. MAIN OUTCOME MEASURES: Demand was assessed by calculating the percentage of eligible clients able to participate compared to total number of home-based clients. Acceptability, practicality and limited efficacy were explored through qualitative analysis of semi-structured interviews. RESULTS: Nearly one quarter of clients screened met eligibility criteria, indicating a large potential demand for telerehabilitation. Telerehabilitation was highly acceptable for clinicians and clients participating in speech pathology and dietitian sessions as these contain targeted education and talking-based therapy. It was less accepted in physiotherapy, where there is a more hands-on approach. Telerehabilitation was practical and efficient for both clinicians and clients, especially when time was allowed for training and initial troubleshooting. CONCLUSION: Telerehabilitation is a feasible modality for review sessions in community rehabilitation and helps improve efficient use of clinician and client time. It is more appropriate for disciplines that use education and talking-based therapy compared with hands-on therapy. Older clients are accepting of new technology with support and education.

Vaccine Coverage among Children with and without Intellectual Disabilities in the UK: Cross Sectional Study.

BACKGROUND: Universal childhood vaccination programmes form a core component of child health policies in most countries, including the UK. Achieving high coverage rates of vaccines is critical for establishing 'herd immunity' and preventing disease outbreaks. Evidence from the UK has identified several groups of children who are at risk of not being fully immunised. Our aim was to determine whether children with intellectual disabilities constitute one such group. METHODS: Secondary analysis of parental report data on child vaccination collected in the UK's Millennium Cohort Study when the children were 9 months, 3 years, 5 years and 14 years old. RESULTS: With one exception (MMR coverage at age 5) vaccination coverage rates were lower for children with intellectual disabilities (when compared to children without intellectual disability) for all vaccinations at all ages. Complete coverage rates were significantly lower for children with intellectual disabilities at ages 9 months (unadjusted PRR non-vaccination = 2.03 (1.14-3.60), p < 0.05) and 3 years (unadjusted PRR = 2.16 (1.06-4.43), p < 0.05), but not at age 5 years (unadjusted PRR = 1.91 (0.67-5.49)). HPV vaccination was lower (but not significantly so) at age 14 (PRR = 1.83 (0.99-3.37), p = 0.054). Adjusting PRRs for between group differences in family socio-economic position and other factors associated with coverage reduced the strength of association between intellectual disability and coverage at all ages. However, incomplete vaccination remained significantly elevated for children with intellectual disabilities at ages 9 months and 3 years. There were no statistically significant differences between parents of children with/without intellectual disability regarding the reasons given for non-vaccination. CONCLUSIONS: Children with intellectual disabilities in the UK are at increased risk of vaccine preventable diseases. This may jeopardise their own health, the health of younger siblings and may also compromise herd immunity.

The association between employment and the health of people with intellectual disabilities: A systematic review.

BACKGROUND: There is strong evidence indicating that paid employment is generally good for the physical and mental health of the general population. This systematic review considers the association between employment and the health of people with intellectual disabilities. METHODS: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Identified studies were reviewed narratively. RESULTS: Twelve studies were identified. Studies were generally consistent in reporting an association between being in paid employment and better physical or mental health status. CONCLUSIONS: This review supports the view that the well-established association between employment and better health is similar for adults with and without intellectual disabilities. However, evidence establishing causality is lacking and further research to determine specific health benefits attributable to employment for people with intellectual disabilities and the causal pathways that operate is required.

What do we know about the health and health care of people with intellectual disabilities from minority ethnic groups in the United Kingdom? A systematic review.

BACKGROUND: People with from minority ethnic communities face inequalities in health and health care. This systematic review considers the question of what we know about the health and health care of children and adults with intellectual disabilities from ethnic minority communities in the UK. METHOD: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. RESULTS: Twenty-three studies were identified, most commonly focusing on South Asian communities. Very little information was identified on physical health or physical health care, with the identified evidence tending to focus on mental health care, access to specialist intellectual disability services, and inpatient services. CONCLUSION: Little is known about the health status of people with intellectual disabilities from minority ethnic groups in the UK. It is clear that they may experience barriers to accessing specialist intellectual disability services and other forms of health care.

The association between employment status and health among British adults with and without intellectual impairments: cross-sectional analyses of a cohort study.

BACKGROUND: There exists a well established link between employment status and health, with unemployment being associated with poorer health. Much less is known about the association between economic inactivity and health, especially among people with disabilities. Our aim is to determine whether the association between employment status and health is similar for adults with and adults without intellectual impairment. METHODS: Using nationally representative data from the 1970 British Cohort Study, we undertook a series of cross sectional analyses of the association between employment status and health (self-reported general health, mental health) among British adults with and without intellectual impairments at ages 26, 30, 34, 38 and 42. RESULTS: People with intellectual disability and borderline intellectual functioning had markedly lower employment rates and poorer health than other participants at all waves of data collection. When compared with participants in full-time employment the prevalence of poorer self rated health and mental health was higher among participants with and without intellectual impairment who were in either part-time employment or were economically inactive at all ages. When compared with participants in employment the prevalence of poorer self rated health and mental health was higher among participants with and without intellectual impairment who were in the economically inactive categories of unemployment, education/training and ill/disabled at all ages. Intellectual disability status appeared to moderate the strength of the relationship between economic activity and self-rated health and, to a much lesser extent, the relationship between economic activity and mental health. In all instances the moderation indicated a stronger association among participants without intellectual impairment. CONCLUSIONS: The results provide substantive evidence to suggest that the nature of the well-established association between employment and better health is similar for British adults with and without intellectual impairments. The results do, however, indicate that the magnitude of the effect involved differed. Further research is needed to identify mechanisms that may underlie this difference.

Sexual activity and sexual health among young adults with and without mild/moderate intellectual disability.

BACKGROUND: There is widespread concern about the sexual 'vulnerability' of young people with intellectual disabilities, but little evidence relating to sexual activity and sexual health. METHOD: This paper describes a secondary analysis of the nationally representative longitudinal Next Steps study (formerly the Longitudinal Survey of Young People in England), investigating sexual activity and sexual health amongst young people with mild/moderate intellectual disabilities. This analysis investigated family socio-economic position, young person socio-economic position, household composition, area deprivation, peer victimisation, friendships, sexual activity, unsafe sex, STIs, pregnancy outcomes and parenting. RESULTS: Most young people with mild/moderate intellectual disabilities have had sexual intercourse by age 19/20, although young women were less likely to have sex prior to 16 than their peers and both men and women with intellectual disabilities were more likely to have unsafe sex 50% or more of the time than their peers. Women with intellectual disabilities were likely to have been pregnant and more likely to be a mother. CONCLUSION: Most young people with mild/moderate intellectual disabilities have sex and are more likely to have unsafe sex than their peers. Education and health services need to operate on the assumption that most young people with mild/moderate intellectual disabilities will have sex.

Constipation management in people with intellectual disability: A systematic review.

BACKGROUND: Constipation can lead to serious health issues and death. This systematic review summarizes international research pertaining to the management of constipation in people with intellectual disability. METHOD: Studies published from 1990 to 2017 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. RESULTS: Eighteen studies were reviewed in relation to three themes: laxative receipt; interventions (dietary fibre, abdominal massage and macrogol); and staff issues (knowledge and training). Laxative polypharmacy was common. Studies report positive results for dietary fibre and abdominal massage although study quality was limited. CONCLUSION: The main management response to constipation in people with intellectual disability is laxative use despite limited effectiveness. An improved evidence base is required to support the suggestion that an individualized, integrated bowel management programme may reduce constipation and associated health conditions in people with intellectual disability.

The mental health of adolescents with and without mild/moderate intellectual disabilities in England: Secondary analysis of a longitudinal cohort study.

BACKGROUND: Children with mild/moderate intellectual disabilities are at greater risk for mental health problems, with socio-economic factors and adversity partly accounting for this. Fewer data are available for adolescents. METHODS: Secondary analysis was undertaken of the Next Steps annual panel study following a cohort through adolescence into adulthood containing self-report mental health data up to age 16/17. Participants with mild/moderate intellectual disabilities were identified through data linkage with educational records. RESULTS: Adolescents with mild/moderate intellectual disabilities were more likely than non-disabled peers to experience socio-economic disadvantage and bullying. Incidence rates of mental health problems were generally not significantly different between adolescents with and without intellectual disabilities. CONCLUSIONS: These findings are consistent with higher rates of persistent mental health problems beginning earlier among children with intellectual disabilities. Greater attention needs to be paid to the timecourse of mental health problems, and the impact of socio-economic factors, family and peers on mental health.

Postural care for people with intellectual disabilities and severely impaired motor function: A scoping review.

BACKGROUND: Poor postural care can have severe and life-threatening complications. This scoping review aims to map and summarize existing evidence regarding postural care for people with intellectual disabilities and severely impaired motor function. METHOD: Studies were identified via electronic database searches (MEDLINE, CINAHL, PsycINFO and Web of Science) covering January 1990 to March 2016, and email requests to researcher networks. Results were collated via descriptive numerical summary of studies and thematic analysis. RESULTS: Twenty-three studies were identified and summarized narratively in relation to three themes: characteristics and prevalence, interventions and service related issues. The evidence base is small with significant gaps. Lack of evidence for night-time positioning equipment and 24-hr postural care needs to be addressed urgently. CONCLUSION: Future research should be clearly directed towards ascertaining how best postural care interventions can be employed to help improve the health and quality of life of people with intellectual disabilities.

The Mental Health of British Adults with Intellectual Impairments Living in General Households.

BACKGROUND: People with intellectual disability or borderline intellectual functioning may have poorer mental health than their peers. The present authors sought to (i) estimate the risk of poorer mental health among British adults with and without intellectual impairments and (ii) estimate the extent to which any between-group differences in mental health may reflect between-group differences in rates of exposure to common social determinants of poorer health. MATERIALS AND METHODS: The present authors undertook secondary analysis of confidentialized unit records collected in Wave 3 of Understanding Society. RESULTS: British adults with intellectual impairments living in general households are at significantly increased risk of potential mental health problems than their non-disabled peers (e.g. GHQ Caseness OR = 1.77, 95% CI (1.25-2.52), P < 0.001). Adjusting for between-group differences in age, gender and indicators of socio-economic position eliminated this increased risk [GHQ Caseness adjusted OR = 1.06, 95% CI (0.73-1.52), n.s]. CONCLUSIONS: Our analyses are consistent with the hypothesis that the increased risk of poor mental health among people with intellectual impairments may be attributable to their poorer living conditions rather than their intellectual impairments per se. Greater attention should be given to understanding and addressing the impact of exposure to common social determinants of mental health among marginalized or vulnerable groups.

Service Responses to People with Intellectual Disabilities and Epilepsy: A Systematic Review.

BACKGROUND: Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarizes research on service responses to people with intellectual disabilities and epilepsy. METHOD: Studies published from 1990 were identified via electronic searches using Medline, Cinahl, PsycINFO and Web of Science, email requests to researcher networks, and cross-citations. Information extracted from studies was reviewed narratively in relation to identified themes. RESULTS: Thirty-five studies met the inclusion criteria. Overall study quality was low, with no RCTs or similarly robust intervention study designs. Access to specialists was inconsistent. The importance of proxies and the need for education regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted. CONCLUSION: There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here.

The physical health of British adults with intellectual disability: cross sectional study.

BACKGROUND: Adults with intellectual disability have poorer health than their non-disabled peers. However, little is known about the health of the 'hidden majority' of adults with primarily mild intellectual disability who do not use intellectual disability services. The aims of the present study were: to estimate the physical health status of a population-based sample of British adults with and without mild intellectual disability while controlling for any potentially confounding effects resulting from between-group differences in gender, age, socio-economic disadvantage and neighborhood social capital. METHODS: Secondary analysis of data from Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. We identified 299 participants aged 16-49 (1.2 % of the unweighted age-restricted sample) as having intellectual disability, and 22,927 as not having intellectual disability. Multivariate logistic regression was used to investigate between group differences adjusting for potential confounding personal characteristics (e.g., gender). RESULTS: Unadjusted comparisons indicated that British adults with intellectual disability have markedly poorer health than their non-disabled peers on the majority of indicators investigated including self-rated health, multiple morbidity, arthritis, cancer, diabetes, obesity, measured grip strength, measured lung function and polypharmacy. Adjusting for between-group differences in age and gender had a marginal impact on these estimates. Further adjusting for between-group differences in socio-economic disadvantage and neighborhood quality had a more marked impact on estimates with the number of statistically significant differences reducing from 13 to 8 and statistically significant attenuation of odds on three indicators (self-rated health, SF-12 physical component and multiple morbidity). CONCLUSIONS: The 'hidden majority' of adults with primarily mild intellectual disability who do not use intellectual disability services have significantly poorer health than their non-disabled peers. This may, in part, reflect their increased risk of exposure to well established 'social determinants' of poorer health.

Obesity in British children with and without intellectual disability: cohort study.

BACKGROUND: Reducing the prevalence of and inequities in the distribution of child obesity will require developing interventions that are sensitive to the situation of 'high risk' groups of children. Children with intellectual disability appear to be one such group. We aimed to estimate the prevalence of obesity in children with and without intellectual disability in a longitudinal representative sample of British children and identify risk factors associated with obesity at age 11. METHODS: Information was collected on a nationally representative sample of over 18,000 at ages 9 months, 3, 5, 7 and 11 years. We used UK 1990 gender-specific growth reference charts and the LMS Growth programme to identify age and gender-specific overweight and obesity BMI thresholds for each child at ages 5, 7 and 11 years. RESULTS: Children with intellectual disabilities were significantly more likely than other children to be obese at ages five (OR = 1.32[1.03-1.68]), seven (OR = 1.39[1.05-1.83]) and eleven (OR = 1.68[1.39-2.03]). At ages five and seven increased risk of obesity among children with intellectual disabilities was only apparent among boys. Among children with intellectual disability risk of obesity at age eleven was associated with persistent maternal obesity, maternal education, child ethnicity and being bullied at age five. CONCLUSIONS: Children with intellectual disability are a high-risk group for the development of obesity, accounting for 5-6 % of all obese children. Interventions to reduce the prevalence and inequities in the distribution of child obesity will need to take account of the specific situation of this group of children.

Systematic Reviews of the Health or Health care of People with Intellectual Disabilities: A Systematic Review to Identify Gaps in the Evidence Base.

BACKGROUND: Systematic reviews are important in evaluating evidence concerning the health of people with intellectual disabilities. This study conducts a systematic review to identify strengths and gaps in this evidence. METHOD: Electronic literature searches and email requests identified systematic reviews published in English from 2008 to 2013 on the health or health care of people with intellectual disabilities. Reviews were categorized using ICD-10 chapter headings and information extracted regarding methods, number of studies reviewed and findings. RESULTS: Ninety-four reviews were identified: 52 related to ICD-10 Chapter V: Mental or behavioural disorders, 28 to Chapter XXI: Factors influencing health status and contact with services, and 14 related to other chapters or encompassed multiple chapters. Nine reviews were 'empty'. No reviews were found for many ICD-10 chapter headings. CONCLUSIONS: Systematic reviews are heavily weighted towards mental health, with little coverage of several areas important to the health and mortality of people with intellectual disabilities.

Obesity and health behaviours of British adults with self-reported intellectual impairments: cross sectional survey.

BACKGROUND: People with intellectual disability have significantly higher age-adjusted rates of mortality and morbidity (including obesity) than their non-disabled peers. They are also significantly less likely to be physically active. METHODS: Secondary analysis of de-identified cross-sectional data from the first two waves of Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. Interviews were undertaken with 50,994 individuals aged 16 and over in Wave 1 and 54,585 in Wave 2. Of these, 520 participants age 16-49 (1.8% of the unweighted age-restricted sample) were identified at either Wave 1 or Wave 2 as having self-reported intellectual impairments. RESULTS: British adults with self-reported intellectual impairments have higher rates of obesity, inactivity, tobacco and alcohol use and poorer nutrition than their non-disabled peers. Adjusting risk estimates for between group differences in age, gender and exposure to material hardship indicated that a significant proportion of their increased risk of obesity, tobacco use and poorer nutrition may be attributable to their poorer living conditions (rather than their self-reported intellectual impairments per se). CONCLUSIONS: People with intellectual disabilities should begin to be regarded as a 'vulnerable' group in the context of public health policy and practice.

Perceptions of neighbourhood quality, social and civic participation and the self rated health of British adults with intellectual disability: cross sectional study.

BACKGROUND: There is extensive evidence from research undertaken on general population samples that people who have more extensive and closer social networks and people who report feeling connected to their local community tend to have better health. However, relatively few studies have examined the relationship between the social connectedness of people with intellectual disabilities and their health. METHODS: Secondary analysis of data from Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. We identified 279 participants aged 16-49 (1.1% of the unweighted age-restricted sample) as having intellectual disability, and 22,927 as not having intellectual disability. Multivariate logistic regression was used to investigate between group differences adjusting for potential confounding personal characteristics (e.g., gender). RESULTS: British adults with intellectual disability had less favorable perceptions of important neighborhood characteristics and lower levels of social and civic participation than their non-disabled peers. Favorable perceptions of important neighborhood characteristics and higher levels of social and civic participation were associated with more positive self-rated health for adults with and without intellectual disability. For adults with intellectual disability this was particularly the case with regard to employment, feeling safe outside in the dark and being able to access services when needed. The between-group differences in perceptions of important neighborhood characteristics and levels of social and civic participation accounted for a significant proportion of the elevated risk for poorer self-rated health observed among adults with intellectual disability. CONCLUSIONS: This study provides evidence to suggest that the health inequalities experienced by people with intellectual disabilities may be partially attributable to their less favorable perceptions of important neighborhood characteristics and lower levels of social and civic participation.

The identification of children with, or at significant risk of, intellectual disabilities in low- and middle-income countries: a review.

BACKGROUND: Developmental monitoring of children is an important strategy for the early detection and management of intellectual disabilities (ID) in high-income countries. This review summarizes the literature on identifying children with ID in low- and middle-income (LAMI) countries. MATERIALS AND METHODS: Electronic literature database searches were conducted to identify articles in the English language published since 1990 relating to the identification of children with, or at risk of, ID in LAMI countries. Requests for information were also sent to the membership of International Association for the Scientific Study of Intellectual Disabilities and relevant organizations in selected LAMI countries. RESULTS: A total of 37 articles were identified for inclusion in the review, the majority of which concerned validation of specific screening tools. Information is presented on sensitivity, specificity, positive predictive value, negative predictive value and reliability of identified screening tools. CONCLUSION: Studies were mainly concerned with identifying child disability. Research and development should develop specific approaches to identifying ID among children in LAMI countries.

Interventions for children with pervasive developmental disorders in low and middle income countries.

BACKGROUND: Although interventions for children with pervasive developmental disorders (PDD) have been the focus of research effort and evidence reviews in many Western countries, this evidence has not been assessed in the context of low- and middle-income (LAMI) countries especially in terms of the fit with different cultures and resources. METHOD: As a part of the WHO MH-GAP project, we carried out a systematic review of published literature relating to interventions for PDD in LAMI countries. Given the small amount of direct evidence found, we supplemented the review with findings from existing relevant evidence reviews to draw practical recommendations. RESULTS: We found only four controlled studies evaluating an intervention for children with PDD in a LAMI country. These studies all evaluated different interventions. A systematic search of controlled studies of evidence-based parenting training interventions (Incredible Years and Triple P) in non-LAMI countries identified two studies both indicating successful outcomes. CONCLUSIONS: The evidence base for interventions for PDDs in LAMI countries is sparse, and to inform practical and future research recommendations, it is important to consider potentially deliverable behavioural parent training interventions. Such interventions need to be explored in LAMI countries when delivered in primary and secondary healthcare contexts.

Efficacy of community-based rehabilitation for children with or at significant risk of intellectual disabilities in low- and middle-income countries: a review.

BACKGROUND: Community-based rehabilitation (CBR) is being implemented in more than 90 countries. Concerns have been voiced about the adequacy of the evidence base regarding the efficacy, effectiveness and efficiency of CBR. This review summarizes evidence on the efficacy of CBR for children with intellectual disabilities. MATERIALS AND METHOD: Electronic literature database searches were conducted to identify articles in the English language published since 1980 relating to the efficacy of CBR for children with intellectual disabilities. Requests for information were also sent to membership of International Association for the Scientific Study of Intellectual Disabilities and relevant organizations in selected low- and middle-income countries. RESULTS: Thirteen studies were identified for inclusion in the review. The quality of evidence for the efficacy of CBR for children with intellectual disabilities was 'very low'. CONCLUSION: Improving the evidence base will require greater investment in evaluation and addressing the marginalization of people with intellectual disabilities in CBR.