Mental wellbeing and intellectual disability.

More people with an intellectual disability are now living to older age and there is a paucity of information about this group of people. Mental illness is 2-3 times more prevalent in people with an intellectual disability than in the general community; however, this often goes undiagnosed and undetected. Additional issues complicate assessment if the person is also ageing. Little is known about the prevalence and nature of mental illness in this group of older people. Instruments used to assist in the diagnosis of mental illness in the general community are not suitable for use with individuals who have an intellectual disability. The Developmental Behavioural Checklist for Adults (DBC-A) (Mohr, Tonge & Einfeld, 2005) is a well established screen for psychopathology; however, it has no standardised norms and has not been specifically validated for older adults. Lack of knowledge and inadequate assessment processes can result in inappropriate service delivery and therefore reduced quality of life for older people with an intellectual disability and their carers. The general aim of the research was to contribute knowledge about older people with an intellectual disability and more specifically to investigate their mental health. In addition, the validity of the DBC-A for use with older adults was examined. An epidemiological study of adults aged 55 years and older, who lived in representative areas in South Australia, and who were registered with intellectual disability service agencies, were surveyed. Familiar informants completed a questionnaire booklet (see Appendix A). The Adaptive Behaviour Dementia Questionnaire (ABDQ) (Prasher, Farooq & Holder, 2004) and, for a subset of the participants, the Dementia Screening Questionnaire for Individuals with Intellectual Disability (DSQIID) (Deb, Hare, Bhaumik et al., 2007a) were also completed (see Appendices F and G). There was a participation rate of 91.7% and participants’ ages ranged from 55-86 years, the majority being males (56.6%), except in the oldest cohort. Those aged 55-64 years appears to differ from those who are older and younger. They have more severe intellectual impairments, more chronic health conditions, they are less likely to be engaged in activities, and have fewer relationships. Those older than 65 years are more similar to older people without an intellectual disability except that more live in nursing homes or larger congregate care settings. Standardised normative data was established for the DBC-A for older people. The DBC-A profile showed age-associated decline in psychopathology; however, the intensity of behaviours was higher in older people with more severe cognitive impairment. Significant psychopathology was found in 16% of older adults. There were no gender differences but those with a moderate level of intellectual disability had the highest rates. Being younger, having fewer hours in activity, living in large congregate care and significant life events were all risk factors. Rates of dementia of between 5-7% were found using the ABDQ, DSQIID and respondent report. A dementia screen using items from the DBC-A (DBC-A Dem) identified almost double that number. There was no association between age and dementia status in this study, which differs from other research, as does the lack of relationship between having Down syndrome and dementia status. The results of this study confirm a picture of differential mortality and the presence of a healthy survivor cohort who have fewer chronic health problems and are more likely to have a mild level of intellectual disability. Although there is an age-related decline in the prevalence of mental illness, rates are still one and a half times more than older people who do not have an intellectual disability. With minor amendments, the DBC-A is a valid screening instrument for use with older people with an intellectual disability. It can record changes in a wide range of emotional and behaviour disturbances including those that may affect older people, including dementia. When used with other DBCs for children and adolescents (Einfeld & Tonge, 1995) it provides a simple and familiar way to record psychopathology throughout the lifespan. This offers clinicians, researchers and service providers a means to monitor and maintain the mental health and well-being of older people with an intellectual disability.

Intellectual disability (ID) is a neurodevelopmental disorder associated with a poorer health profile and higher mortality. Young people with ID have more sedentary lifestyles than their typically developing peers. Consequently, this group is at significant risk of developing lifestyle diseases (ie, noncommunicable diseases) later in life. Increasing physical activity and eating a healthier diet have been argued to be effective ways to improve the health of adolescents and young adults with ID. Digital interventions are a viable option for improving health behaviors. This research protocol describes a co-design approach using workshops to develop a digital intervention that promotes healthy behaviors, including increasing physical activity and eating a healthier diet, among adolescents and young adults with ID. A participatory design using a co-design approach will be applied as a strategy to include potential users of the digital intervention and other stakeholders in the research process, comprising research design, data collection, and data analysis. A total of 7 to 10 workshops will be conducted aimed at developing a digital intervention and will include procedures for assessing needs; facilitators and barriers to health promotion; physical, mental, and social well-being; participation; and relationships. The workshops will include 12 to 18 stakeholders with experience of clinical practice and research related to young people with ID, including relatives, as well as adolescents and young adults (aged 16-25 years) with mild to moderate ID. Participants will perform a mixture of individual and group work using whiteboards, sticky notes, felt-tip pens, cards, balls, stickers, and wireframe templates. Data analysis will take place concurrently with data collection as an iterative process. Transcribed data from the audio and video recordings of the groups' discussions will be analyzed following a qualitative methodological procedure. This study protocol provides a systematic record of the scientific methodologies used when developing the digital intervention and provides insights into the potential practical solutions and challenges when following a co-design approach in which relatives and professionals, as well as adolescents and young adults with ID, are included as research partners. Recruitment of participants started in April 2023. Data collection, analysis, and reporting will be completed in December 2023. This study will explore the effectiveness of workshops at gathering rich, reliable, and valid data in a co-design approach with participants. The results will provide increased knowledge in how to use technology to develop novel, evidence-based, and scalable interventions that adolescents and young adults with ID can and want to use to motivate physical activity and a healthier diet. The project will provide a simple and cognitively accessible digital solution for promoting lifestyle behaviors tailored to the needs of adolescents and young adults with ID. PRR1-10.2196/47877.

There are no validated self-report measures that can be used to assess health and wellbeing in adolescents with intellectual disability (ID). The aim of this study was to explore the psychometric properties of two newly adapted self-report health-related quality of life (HRQoL) and mental wellbeing measures: the Intellectual Disability versions of the Short Warwick-Edinburgh Mental Wellbeing Scale (ID-SWEMWBS) and Kidscreen10 (ID-Kidscreen10). For this, we used data from a sample of 427 adolescents (aged 11-19) with ID recruited from special school settings. Confirmatory factor analysis (CFA) was conducted to validate the factor structure of both measures. Internal consistency was assessed using Cronbach's alpha and test-retest reliability was analysed using intra-class correlation coefficients. The internal consistency measured using Cronbach's alpha was found to be in the range of 0.70-0.78, test-retest reliabilities were expressed using intra-class correlation coefficients that were found to be high for both measures (ID-SWEMWBS, 0.758; ID-Kidscreen10, 0.723), and the CFA supported the unidimensional structure of both measures. The results of this study indicate that the ID-SWEMWBS and ID-Kidscreen10 have very good psychometric properties and can be used as self-report measures to assess HRQoL and mental wellbeing in adolescents with ID.

Objectives To characterise the changes at work experienced by psychologists working with people with intellectual disabilities during the pandemic and whether these changes, stressors and aspects of working life were associated with mental wellbeing and occupational stress. Methods Ninety-seven psychologists completed an online survey. Free text comments were analysed using thematic analysis and triangulated with our quantitative findings. Results Occupational stress, learning new roles, demands at home, and changes due to COVID-19 were associated with poorer mental wellbeing, while uncertainty about the role, a shortage of personal protective equipment, and poorer mental wellbeing were associated with occupational stress. Two main themes emerged during the thematic analysis: being human and being an employee, and triangulation revealed agreement. Conclusions The wellbeing and occupational stress of psychologists working with people with intellectual disabilities have been affected during the pandemic. It is of note that almost a quarter of our sample reported having been redeployed.

Stigma contributes to the negative social conditions persons with intellectual disabilities are exposed to, and it needs tackling at multiple levels. Standing Up for Myself is a psychosocial group intervention designed to enable individuals with intellectual disabilities to discuss stigmatising encounters in a safe and supportive setting and to increase their self-efficacy in managing and resisting stigma. To adapt Standing Up for Myself to make it suitable as a digital intervention; to evaluate the feasibility and acceptability of Digital Standing Up for Myself and online administration of outcome measures in a pilot; to describe usual practice in the context of the coronavirus disease 2019 pandemic to inform future evaluation. Adaptation work followed by a single-arm pilot of intervention delivery. Four third and education sector organisations. Individuals with mild-to-moderate intellectual disabilities, aged 16+, members of existing groups, with access to digital platforms. Digital Standing Up for Myself intervention. Adapted from face-to-face Standing Up for Myself intervention, delivered over four weekly sessions, plus a 1-month follow-up session. Acceptability and feasibility of delivering Digital Standing Up for Myself and of collecting outcome and health economic measures at baseline and 3 months post baseline. Outcomes are mental well-being, self-esteem, self-efficacy in rejecting prejudice, reactions to discrimination and sense of social power. Adaptation to the intervention required changes to session duration, group size and number of videos; otherwise, the content remained largely the same. Guidance was aligned with digital delivery methods and a new group member booklet was produced. Twenty-two participants provided baseline data. The intervention was started by 21 participants (four groups), all of whom were retained at 3 months. Group facilitators reported delivering the intervention as feasible and suggested some refinements. Fidelity of the intervention was good, with over 90% of key components observed as implemented by facilitators. Both facilitators and group members reported the intervention to be acceptable. Group members reported subjective benefits, including increased confidence, pride and knowing how to deal with difficult situations. Digital collection of all outcome measures was feasible and acceptable, with data completeness ≥ 95% for all measures at both time points. Finally, a picture of usual practice has been developed as an intervention comparator for a future trial. The pilot sample was small. It remains unclear whether participants would be willing to be randomised to a treatment as usual arm or whether they could be retained for 12 months follow-up. The target number of groups and participants were recruited, and retention was good. It is feasible and acceptable for group facilitators with some training and supervision to deliver Digital Standing Up for Myself. Further optimisation of the intervention is warranted. To maximise the acceptability and reach of the intervention, a future trial could offer the adapted Digital Standing Up for Myself, potentially alongside the original face-to-face version of the intervention. This study was registered as ISRCTN16056848. This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 17/149/03) and is published in full in Public Health Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information.

The effects of a group-based laughter yoga intervention on mood, anxiety and loneliness in adolescents with mild intellectual or developmental disabilities: A pilot randomized controlled trial.

Objective: To examine the influence of demographic variables (age, gender, education, marital status, work status, and income) on sleep quality among caregivers of children with intellectual impairments at School for Students with Special Needs E Negeri Pembina, Medan Helvetia district, North Sumatera Province. The study aims to identify the at-risk caregiver population and offer evidence-based insights for the formulation of targeted mental health interventions, so contributing to the Sustainable Development Goals (SDGs) of health and well-being. Theoretical Framework: This section encompasses the theoretical framework that underpins the research. This article elucidates that sleep quality among caregivers of children with intellectual impairments correlates with several demographic characteristics, including age, gender, education, marital status, employment, and income. The theory employed encompasses the comprehension of sleep quality as the metric of mental and physical well-being. Method: The research used a cross-sectional design and multivariate linear regression analysis. The sample comprised 139 respondents chosen by a non-probability sampling technique. (consecutive sampling). Data were gathered via the Pittsburgh Sleep Quality Index (PSQI), which has been validated within the Indonesian context. The analysis utilized the SPSS software, commencing with the Kolmogorov-Smirnov test to evaluate normality, subsequently employing either Pearson or Spearman correlation tests based on the data on the data distribution. Results and Discussion: The findings of this research suggest a considerable correlation between sleep quality and other demographic characteristics. Younger caregivers, women, individuals with lower educational attainment, unmarried or jobless persons, and those with low incomes demonstrate increased sleep disruptions. These findings correspond with or contrast with earlier studies, which are examined thoroughly to offer context and substantiate the results. The discourse underscores themes identified in analogous studies, accentuating the distinctive contributions and ramifications of this study for treatments aimed at at-risk caregiver populations. Research Implications: This research highlights the urgent necessity to attend to the psychological welfare of caregivers for children with intellectual disabilities, especially among vulnerable demographic segments, including young, female, less-educated, unmarried, unemployed, or low-income caregivers. The results offer significant evidence to guide the formulation of specific policy interventions and support initiatives intended enhance sleep quality. These treatments may encompass mental health counselling, educational training, financial aid, or employment support according to the needs of these caregivers. This research difficulties that enhance caregiver well-being and fits with global objectives, including the Sustainable Development Goals (SDGs) pertaining to health and well-being. Originality/Value: This research is original as it is one of the first studies in North Sumatra to examine the relationship between demographic factors and sleep quality among caregivers of children with intellectual disabilities. Additionally, the use of validated measurement tools tailored to the Indonesian context enhances the local relevance of the research findings.

BackgroundProviding care and support for a person with intellectual disabilities can be challenging and may negatively impact on family carers’ health and wellbeing. A online support programme was co-designed with charitable organisations and family carers, to help meet the mental health and wellbeing needs of family carers.ObjectiveTo test the acceptability of a newly developed online support programme for carers of people with profound and multiple intellectual disabilities.MethodsA sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents Scale was distributed to family carers across the United Kingdom and Ireland who had viewed the Carers-ID.com intervention. Participants were then invited to take part in an online interview. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol.ResultsSeventy family carers (47 female, 23 male) responded to the acceptability survey, with 10 (7 female, 3 male) taking part in interviews. Carers expressed high levels of programme acceptability (mean = 75.43 out of 88). Six themes were generated from interviews with family carers; i) time is precious, ii) the breadth and depth of module content, iii) it was somebody’s experience; it was meaningful, iv) won’t work for everyone, v) representation: people I could identify with, and vi) module specific suggestions for future changes. Based on our triangulation, four areas of convergence were identified: programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability.ConclusionsTo be acceptable, online interventions for carers of people with intellectual disability need to be accessible, understandable and easy to use, as carers’ free time can be limited. It would be important to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not.

OBJECTIVE: Evidence to shared decision making mainly comes from primary care, but only few studies in the rehabilitation context exist. The main objective was to assess the need for participation, the perceived transfer of information and the involvement in treatment from the perspective of cardiac rehabilitation patients, and to examine their relations to rehabilitation outcome. METHODS: 165 patients were included in a cross-sectional survey at the end of their inpatient stay. Health status, mental impairment, rehabilitation related self-efficacy and patient satisfaction were investigated along with aspects of participation and information. RESULTS: Patients reported a strong need for participation (on average over 80%), but less than half of the sample agreed, that they had actually participated in treatment decisions. The perceived information transfer also showed weak to moderate correlations to health status, mental impairment, and self-efficacy. Strong correlations to patient satisfaction were found for doctor facilitation of patient involvement (r=0.54) and transfer of treatment relevant information (r=0.51). CONCLUSIONS: The doctor's behaviour concerning information transfer and involvement of patients in their treatment appears crucial for patient satisfaction, but also for mental and physical well-being of cardiac rehabilitation patients. This underlines the importance of patient participation and related active and need-oriented information in the sense of ‘empowerment’.

The delineated mental and somatic symptoms in the context of burnout have to be seen as serious health complaints. Exhaustion is one of the symptoms in this context. The present study focuses the prevalence of exhaustion symptoms (assessed with a screeninger for mental wellbeing) in the German general population and the correlation with anxiety and depression as well as further symptoms that co-occur. For this purpose, data of 2 433 persons from a population-based representative sample were analysed. After setting a cut-off point the results reveal that 6% of the population show serious mental impairments, which can be interpreted as a exhaustion prevalence rate. Moreover, the results imply clear relationships of exhaustion and other symptoms as well as mental and somatic impairments and the intake of pharmaceuticals.

The activities of carnosine (β-alanyl-L-histidine), carnosine imidazole containing dipeptide based derivatives (N-acetylcarnosine, carcinine, homocarnosine) and a carnosine degrading enzyme (serum carnosinase (EC 3.4.13.20); [human tissue carnosinase (EC 3.4.13.3), CN2 (CNDP2)] ) activities have been discrepantly linked to neuropathophysiological processes. Approximately 82% of the U.S. population will experience normal age-related cognitive decline, as compared to the precipitous losses that are associated with dementing disorders. Interventions designed to promote health and function through everyday activity and specific pharmaco-nutritional therapeutic treatments may enhance brain plasticity in key regions that support executive function. Cognitive health is multidimensional cascade of functions. It encompasses an array of functions, including general intellectual ability, memory, language, allowing a person to interact effectively and appropriately with the environment. The risk factors for reduced physical and cognitive functions in elderly people, as identified in longitudinal studies, relate to comorbidities, critical care situations, physical and psychosocial health, environmental conditions, social circumstances, nutrition, and lifestyle. Depression and dementia are both common in older adults; cognitive functioning declines slightly with normal aging; depression itself can be associated with cognitive impairment and dementia. In this study the role of carnosine and related neuron specific naturally-occurring endogenous imidazole-containing dipeptide pharmacoperones (N-acetylcarnosine, carcinine) is revealed presently in a surprisingly large amounts in long-lived human tissues to correct conformational abnormalities leading to distinct neurodegeneration and age-related disease states, treating cognitive deficits, depression and intellectual disabilities. Carnosine serves as a physiological buffering agent and a metal ion (e.g., zinc and copper) chelator, endowed with ferroxidase type activity; possess anti-aging functions, and free-radical scavenging activity, is capable of delaying senescence and extending the life-span of cultured human fibroblasts; is able to kill transformed cells and protect cells against aldehydes and amyloid peptide fragment. Carnosine and carcinine exhibit a well-documented anti-glycating activity against the glycation of proteins, including low-density lipoproteins, glucose degradation products, esterase, histones. A tissue carnosine-degrading enzyme (CN2) colocalized with the activity of histidine decarboxylase to histamine neurons in the hypothalamic tuberomammillary nucleus (TMN) plays a key role in the neuro-transmission and neuroregulation roles of imidazole-containing based dipeptides. Carnosine released from skeletal muscle during exercise may be transported into TMN-histamine neurons and hydrolyzed. Timing of carnosine present in the chicken broth, the specific patented nutraceutical composition (Can-C Plus™), 1% N-acetylcarnosine lubricant eye drops or 1% carcinine lubricant eye drops formulations are important targeting posology vehicles that are involved in many CNS functions through the central brain histamine system including the vision enhancement functions, physiological regulation of cognitive functions, arousal; anxiety; activation of the sympathetic nervous system; the stress-related release of hormones from the pituitary and of central aminergic neurotransmitters; antinociception; water retention and suppression of eating. The roles for the carnosine-stimulated/mediated neuronal histamine system are proposed as a danger and physiological response system active in protection from neurodegenerative diseases and in management of cognitive deficits, depression and intellectual disabilities.

ABSTRACTBackgroundThe aim was to examine the effects of ‘Supporting Wellness in E‐Child Learning Environments’ (SWELE) program on the mood, anxiety, social and self‐regulation skills and playfulness behaviours of children and adolescents with special educational needs and disabilities.MethodsA quasi‐experiment single‐group pre‐test and post‐test design was adopted. The intervention group received a 16‐week SWELE program featuring an unstructured free outdoor play coupled with mindfulness‐based intervention.Results1187 children and adolescents with intellectual or physical disabilities were recruited. At post‐intervention, there are consistent positive changes across all five outcomes with medium to large effect sizes (Cohen's d: 0.63–0.80). Specifically, the SWELE program demonstrated statistically significant improvement in mood level (t = 21.86, p < 0.001), self‐regulation skills (t = 29.59, p < 0.001) and social skills (t = 23.84, p < 0.001), reduction in anxiety symptoms (t = −27.47, p < 0.001), and an increase in playfulness behaviours (t = 20.84, p < 0.001).ConclusionThe SWELE intervention program was effective in promoting mental wellbeing among target children and adolescents.

Discrimination and exclusion have been associated with mental health issues for people with intellectual and developmental disabilities. This mixed-methods study examines the impact of Reality Ministries (RM), a Christian community center open to all abilities and faiths, on participants’ views toward disability and mental health. Semi-structured interviews were administered to 32 RM community members. Results associate participation in RM with greater disability acceptance, lower loneliness, higher self-esteem and mental wellbeing, more and closer friendships, and higher participation in personally meaningful activities. Findings support the importance of a community of belonging for the wellbeing of people with and without disabilities.

Australian immigration policy resulted in large numbers of children being held in locked detention. We examined the physical and mental health of children and families who experienced immigration detention. Retrospective audit of medical records of children exposed to immigration detention attending the Royal Children's Hospital Immigrant Health Service, Melbourne, Australia, from January 2012 -December 2021. We extracted data on demographics, detention duration and location, symptoms, physical and mental health diagnoses and care provided. 277 children had directly (n = 239) or indirectly via parents (n = 38) experienced locked detention, including 79 children in families detained on Nauru or Manus Island. Of 239 detained children, 31 were infants born in locked detention. Median duration of locked detention was 12 months (IQR 5-19 months). Children were detained on Nauru/Manus Island (n = 47/239) for a median of 51 (IQR 29-60) months compared to 7 (IQR 4-16) months for those held in Australia/Australian territories (n = 192/239). Overall, 60% (167/277) of children had a nutritional deficiency, and 75% (207/277) had a concern relating to development, including 10% (27/277) with autism spectrum disorder and 9% (26/277) with intellectual disability. 62% (171/277) children had mental health concerns, including anxiety, depression and behavioural disturbances and 54% (150/277) had parents with mental illness. Children and parents detained on Nauru had a significantly higher prevalence of all mental health concerns compared with those held in Australian detention centres. This study provides clinical evidence of adverse impacts of held detention on children's physical and mental health and wellbeing. Policymakers must recognise the consequences of detention, and avoid detaining children and families.

BackgroundAustralian immigration policy resulted in large numbers of children being held in locked detention. We examined the physical and mental health of children and families who experienced immigration detention.MethodsRetrospective audit of medical records of children exposed to immigration detention attending the Royal Children’s Hospital Immigrant Health Service, Melbourne, Australia, from January 2012 –December 2021. We extracted data on demographics, detention duration and location, symptoms, physical and mental health diagnoses and care provided.Results277 children had directly (n = 239) or indirectly via parents (n = 38) experienced locked detention, including 79 children in families detained on Nauru or Manus Island. Of 239 detained children, 31 were infants born in locked detention. Median duration of locked detention was 12 months (IQR 5–19 months). Children were detained on Nauru/Manus Island (n = 47/239) for a median of 51 (IQR 29–60) months compared to 7 (IQR 4–16) months for those held in Australia/Australian territories (n = 192/239). Overall, 60% (167/277) of children had a nutritional deficiency, and 75% (207/277) had a concern relating to development, including 10% (27/277) with autism spectrum disorder and 9% (26/277) with intellectual disability. 62% (171/277) children had mental health concerns, including anxiety, depression and behavioural disturbances and 54% (150/277) had parents with mental illness. Children and parents detained on Nauru had a significantly higher prevalence of all mental health concerns compared with those held in Australian detention centres.ConclusionThis study provides clinical evidence of adverse impacts of held detention on children’s physical and mental health and wellbeing. Policymakers must recognise the consequences of detention, and avoid detaining children and families.