Disability and loneliness in the United Kingdom: cross-sectional and longitudinal analyses of trends and transitions.

BACKGROUND: Loneliness can have a detrimental impact on health, yet little is known about the association between disability and loneliness. METHODS: Secondary analysis of three waves of data collected between 2017 and 2020 by the UK's annual household panel study, Understanding Society. Direct age-standardisation was used to compare the prevalence of loneliness at each wave and the persistence of loneliness across all three waves for participants with/without disabilities aged 16-65 years. Transitional probabilities for the stability of loneliness, the stability of non-loneliness, the onset of loneliness and the offset of loneliness between consecutive waves were also estimated. RESULTS: At each wave, the prevalence of loneliness was significantly higher among respondents with disabilities than respondents without disabilities; these inequalities persisted with no evidence of change over time. The prevalence of persistent loneliness was 46% for respondents with disabilities compared with 22% for respondents without disabilities. Risk factors for the likelihood of persistent loneliness included disability, financial stress, not living as a couple, living in rented accommodation, being female and not being employed. The probability of the onset and stability of loneliness between successive waves were markedly higher for people with disabilities compared with people without disabilities. CONCLUSION: Adults with disabilities were more likely to experience loneliness, become lonely and remain lonely over time than their peers. Policies and interventions aimed at reducing loneliness should ensure that they are accessible and effective for people with disabilities. Further research is needed to explore the health outcomes of persistent loneliness among people with/without disabilities.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis.

BACKGROUND: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users. METHODS: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. RESULTS: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former-institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. CONCLUSIONS: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

From mainstream employment to mainstream retirement: A randomised controlled trial of a transition to retirement intervention for adults with intellectual disability.

BACKGROUND: We evaluated a transition to retirement intervention that adapted strategies used to support employment of people with intellectual disability in mainstream workplaces. The intervention facilitated their independent participation in mainstream community groups and volunteering. METHODS: We randomised 29 older Australians who currently/previously worked in mainstream employment into an intervention group or wait-list control group. Hours of independent participation in target activities were collected before and after the 13-week initial intervention/waiting period, and at 52 weeks for intervention participants. RESULTS: Six of the 12 intervention participants selected an activity and increased hours of independent participation following 13 weeks in the Keeping Active (KA) program and eight were independently accessing their selected activity at 52-week follow-up. None of the 19 wait-list participants increased their independent participation after 13 weeks. CONCLUSIONS: The intervention was effective and highlighted the need to account for factors such as participant choice in evaluation of individualised programs.

Analysis of an Australian death database of people with intellectual disability living out of the family home: Place of death and associated variables.

This study reports on a five-year data set about the deaths of 599 individuals in New South Wales Australia, who at the time of their death were living in out-of-home care. Analysis aimed to: i) gain a clearer understanding of place of death for people with intellectual disability; and ii) identify and analyse associated variables to investigate how well they predict place of death for this population. Hospital admissions, polypharmacy and living situation were the strongest standalone predictors of place of death. A hospital death was more likely if the target population were subject to polypharmacy, lived in a group home, had a moderate intellectual disability or had GORD. Death, and place of death, is an issue requiring individual consideration. This study has identified some of the variables that need attention when supporting people with intellectual disability to have a good death.

Functional Performance and the Allen Cognitive Level Screen for Adults With Mental Illness: A Scoping Review.

IMPORTANCE: Research involving the use of the Allen Cognitive Level Screen (ACLS) in mental health practice has been available for more than 40 yr, yet there has been no comprehensive synthesis and review of this body of literature. OBJECTIVE: To review, summarize, compare, and evaluate the existing literature regarding the relationship between the ACLS and the functional and adaptive functional performance of adults living with mental illness. DATA SOURCES: Searches with no date limits were conducted in the CINAHL, MEDLINE, PsycINFO, ProQuest, and OTseeker databases. Study Selection and Data Collection: A five-stage scoping review methodology was used to examine peer-reviewed English-language literature reporting on the relationship between ACLS scores and functional and adaptive functional performance of adults with mental illness. Information from 15 studies was charted, collated, and numerically and thematically summarized. FINDINGS: A positive relationship between ACLS scores and in-the-moment performance was consistently reported. The relationship of ACLS scores to community living performance was less consistent. Methods of assessing performance, complexity of tasks assessed, and timing of assessments affected relationships with cognition as measured by ACLS. Gaps in the literature were identified. CONCLUSIONS AND RELEVANCE: Findings raise questions about how, why, and when occupational therapists use the ACLS. Increased examination is needed of what aspects of performance and functional cognition reliably determine people's ability to live successfully in the community. What This Article Adds: This article provides the first synthesis of the existing literature on the relationship between ACLS scores and functional and adaptive functional performance of people living with mental illness.

Community participation and staying home if you want: US adults with intellectual and developmental disabilities.

BACKGROUND: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. METHOD: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. RESULTS: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. CONCLUSIONS: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.

Specialist palliative care staff's varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews.

BACKGROUND: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. AIM: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. DESIGN: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. SETTING/PARTICIPANTS: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. RESULTS: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). CONCLUSIONS: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

Australians with intellectual disability share their experiences of retirement from mainstream employment.

BACKGROUND: As part of a larger study exploring the transition to retirement for people with intellectual disability from a working life in mainstream employment, this paper reports on retirement from the perspective of those who have already retired. METHOD: Semi-structured interviews were undertaken with five Australian retirees with intellectual disability. Data were analysed using grounded theory methodology. Employment service records provided background information on participants' employment and supports. RESULTS: Retirement occurred as the solution to ongoing problems primarily related to health. Retirement decisions were made in conjunction with family and support staff, with participants reporting varying levels of self-determination in the process, and mixed feelings about their retirement. None of the participants were participating in mainstream community groups in retirement. CONCLUSIONS: There is a need for retirement preparation for this emerging population to support self-determination in retirement-related decisions including individualized training to facilitate independent participation in mainstream social activities in retirement.

The experience of mothers supporting self-determination of adult sons and daughters with intellectual disability.

BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. RESULTS: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. CONCLUSION: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

Longitudinal use and factors associated with public transport and other travel options for older people with an intellectual disability in Ireland.

BACKGROUND: Transport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness. METHOD: Data from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options. RESULTS: Findings confirmed that this population depends on others for transportation. The most frequently used mode, staff-supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes. CONCLUSIONS: Transport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options.

Factors related to hospital utilisation for people living with schizophrenia: Examining Allen's Cognitive Level Scores, recommended supports and routinely collected variables.

INTRODUCTION: Australian occupational therapists working on mental health inpatient wards are often requested to assess a person's function and, based on that assessment, recommend the best support environments for that person post-discharge. The Allen Cognitive Level Screen (ACLS) is a tool used by some therapists to screen cognitive functioning as a basis with which to make support recommendations. There is limited examination of the outcomes for people post-discharge if the ACLS score-based support recommendations are followed. METHOD: A retrospective cohort design involved quantitative analysis of archival data for 150 adult (18-65 years old) consumers with a primary diagnosis of schizophrenia and an ACLS completed pre-discharge. Data up to 12 months post-discharge from hospital were studied. Outcomes examined included re-presentations or readmission to hospital, length of time in community prior to re-presentation and length of stay in hospital if readmitted. RESULTS: Being younger, male, receiving formal supports, having a drug and alcohol disorder comorbidity, living in public housing and having a lower cognitive level as measured by the ACLS were significant univariate factors associated with higher hospital utilisation for one or more of the outcome variables. Multivariate analyses revealed fewer significant relationships, with being younger and receiving formal supports significantly associated with greater likelihood of return to hospital. CONCLUSION: This research contributes to evidence of the complexity of living with schizophrenia in the community and supporting people to stay out of hospital. More research regarding how the ACLS score-aligned support recommendations are carried out and the impact on hospital utilisation is needed in order to enhance occupational therapists confidence in their use and prescription.

Intergenerational mentoring at Men's Sheds: A feasibility study.

BACKGROUND: This study reports on the feasibility of an intergenerational mentoring programme for youth with intellectual disability (ID) aimed at developing skills and building networks. METHODS: Youth with ID were paired with older male mentors who were trained to support the mentees participate in activities and social interactions during weekly sessions. We interviewed the mentees and mentors, and assessed them on a range of outcomes using standardized measures. RESULTS: Interviews highlighted that the programme presented a great "opportunity" for the mentees and mentors. The participants described facilitators and challenges to the acquisition of practical skills by mentees and the development of relationships between mentors and mentees, including communication, transportation and mentor training. The youth with ID had difficulty completing the self-report measures. CONCLUSIONS: Mentoring programmes are viable to support youth with ID during the transition to adulthood; however, refinement is required in the rollout out of a pilot intervention.

Men's Sheds and the experience of depression in older Australian men.

BACKGROUND/AIM: Men's Sheds are community spaces where, usually, older men can socialise as they participate in a range of woodwork and other activities. There is currently little research evidence supporting the anecdotally reported mental health and wellbeing benefits of Men's Sheds. This research project investigated how older men with self-reported symptoms of depression experience their participation in Men's Sheds. METHODS: This study included in-depth interviews and administration of the Beck Depression Inventory-II with 12 men from 3 Men's Sheds, triangulated with observation of the different shed environments. Interviews explored how participation in the Men's Shed, living in a regional area, and retirement intersected with experiences of depression. Participants had either self-reported symptoms of depression or a diagnosis of depression. RESULTS: The findings from this study support the notion that participation at Men's Sheds decreases self-reported symptoms of depression. Beck Depression Inventory-II scores showed that most participants were currently experiencing minimal depression. The Men's Sheds environment promoted a sense of purpose through relationships and in the sharing of skills, new routines, motivation, and enjoyment for its members. The shed encouraged increased physical activity and use of cognitive skills. Finally, participants reported feelings of pride and achievement which had an impact on their sense of self-worth. CONCLUSION: Men's Sheds provide an opportunity to promote health and wellbeing among retired men. The shed's activity and social focus offers a way to help men rediscover purpose and self. Further research is required to measure symptoms of depression before and after participation in Men's Sheds.

Embedding sustainable physical activities into the everyday lives of adults with intellectual disabilities: a randomised controlled trial.

BACKGROUND: Adults with intellectual disability (ID) are physically very inactive. This study will compare two approaches to increasing physical activity in adults with ID: a lifestyle physical activity (light-moderate intensity) approach and a structured exercise (moderate-vigorous intensity) approach. The trial will compare the short-term (3-month) and long-term (9-month) outcomes and sustainability of each approach with a usual-care control group. METHODS/DESIGN: A three-arm randomised controlled trial (RCT) will be conducted. Ninety adults with ID aged 18-55 will be randomly assigned to one of three groups: 1) a lifestyle physical activity group (n = 30), 2) a structured exercise group (n = 30), or 3) a usual care control group (n = 30). Participants in both groups will receive a 12-week intervention delivered by exercise specialists in the community with disability service staff, after which intervention will continue for 6 months, delivered by disability service staff only. Primary outcomes are aerobic fitness, 12-hour energy expenditure, and proxy-reported everyday physical activity. Secondary outcomes include objectively assessed physical activity and sedentary behaviour, intervention compliance, functional walking capacity, participation in domestic activities, muscle strength, body composition, psychosocial outcomes, quality of life and health care costs. DISCUSSION: The trial results will determine the effectiveness and sustainability of two approaches to increasing physical activity and exercise among adults with ID. TRIAL REGISTRATION: ISRCTN77889248 (18 April 2012).

I-CAN: the classification and prediction of support needs.

BACKGROUND: Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson et al. 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. METHOD: A study is presented comparing scores on the ICF (WHO, 2001) based I-CAN v4.2 support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. RESULTS: Good internal consistency (range 0.73-0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found. CONCLUSIONS: Further advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability.

Criminal Justice and People With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDD) are overrepresented in the criminal justice system both as victims/survivors and as offenders. The needs and circumstances of individuals from underserved communities have received scant attention in the literature. Stakeholders met online at the 2022 State of the Science Conference on Community Living to discuss criminal justice and to identify goals for research involving people with IDD. The group focused more on victimization and less on offenders. Victimization issues examined included prevalence, people from underserved communities, sexual victimization, consequences of victimization, victim compensation, prevention, and risk reduction. Issues regarding offenders included prevalence, people from underserved communities, and competency to stand trial. Future directions are proposed for research on victimization and on offenders.

From diminished men to conditionally masculine: sexuality and Australian men and adolescent boys with intellectual disability.

Men and boys with intellectual disability represent a unique group who have hitherto been overlooked by researchers and theorists exploring men and masculinities. Qualitative data from an Australian ethnographic study focused on the sexual health needs of men and adolescent boys with moderate to profound intellectual disability. Findings suggest that masculinity for this group of men is more a biopsychosocial phenomenon than a social construct organised around heteronormative ideals. The conditional masculinity of the men participating in the study was based instead on a number of intrinsic and external factors, which are described in detail.

Mentors' experiences of using the Active Mentoring model to support older adults with intellectual disability to participate in community groups.

BACKGROUND: Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. METHODS: Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. FINDINGS: The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. CONCLUSION: Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups.

Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities.

We investigated socially inclusive participation in mainstream community groups and religious services by U.S. adults with intellectual and developmental disabilities using weighted secondary analyses of 2018-2019 National Core Indicators data. Overall, 34.4% participated in community groups and 42.4% in religious services. Some 45.0% had an unmet desire for community-group participation, whereas most (75.0%) attended a religious service as often as preferred. The type of companion varied by living arrangements and age group. Attending community groups and religious services were each strongly associated with better friendship outcomes but were not related to loneliness. The large unmet demand for community-group participation reveals a major gap. The friendship outcomes underline the benefits of socially inclusive community participation.