The house is a machine for everything: the role of the built environment in group homes during the COVID-19 pandemic.

OBJECTIVES: Individuals living in group homes during the COVID-19 pandemic faced unique challenges and health risks related to living in shared spaces. This study aimed to assess the experiences of living and working in a group home during the pandemic and to explore the role of the built environment. STUDY DESIGN AND METHODS: We conducted longitudinal working groups with group home residents with intellectual and developmental disabilities and serious mental illness, group home staff, and families/caregivers of residents from December 2020 through December 2022. Common themes highlighting ways in which group home residents, staff, and caregivers perceived the built environment to impact living in a group home during the COVID-19 pandemic were identified. RESULTS: Resonant themes centered around increased risk of COVID-19 infection, ad hoc spatial adaptations for infection control, space-related challenges due to isolation and quarantine requirements, and limited access to public spaces. CONCLUSION: Group home residents and staff experienced multiple health and wellness challenges during the COVID-19 pandemic related to their surrounding built environment. Mechanisms to engage group home residents in modifications of their built environment may improve the effectiveness of infection control policies while acknowledging individual autonomy.

Meeting the need: Creation of an online infection prevention course by the Golisano Institute for Developmental Disability Nursing for direct support professionals during COVID-19.

The Center for Disease Control (CDC) recommended that direct support professionals (DSPs) take additional steps to protect people with disabilities during COVID-19 and receive training on the use of personal protective equipment and infection prevention. The Golisano Institute for Developmental Disability Nursing identified this as an unmet need and created an online asynchronous course for DSPs on infection prevention and use of personal protective equipment to reduce transmission of COVID-19 among individuals with disabilities and DSPs. Constructivism, experiential learning theory, and active learning theory guided content development. The course used games to break-up dense information into more manageable chunks as a means to increase learner engagement and motivation. The course was delivered on a dynamic Learning Management System to allow for a variety of content authoring tools to be utilized. After evaluation, the course was disseminated to DSPs. Future directions include a broader infection protection course for DSPs, without a direct focus on COVID-19.

Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier's ladder of participation?

Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier's ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier's ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members' attitudes toward the adults' capability can also be a barrier to participation. Applying Shier's ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D.

The role of the epilepsy monitoring unit in the investigation of patients with epilepsy and intellectual disabilities.

BACKGROUND: A significant proportion of the people with intellectual disabilities (ID) has epilepsy and lives in institutions. These patients tend to have atypical presentations of epileptic seizures with an increased risk of misdiagnoses. They often have drug-resistant epilepsy (DRE) requiring polypharmacy with increased risk of morbidity. The aim of this study was to determine the usefulness of Epilepsy Monitoring Unit (EMU) in the diagnosis and management of these patients. METHODS: This is a retrospective observational study of people with epilepsy and ID living in institutions that were admitted to the EMU at London Health Sciences Center (LHSC), from January 2014 to December 2016. RESULTS: Out of 1121 patients admitted to the EMU at the LHSC, 1.96% (N = 22) fulfilled the inclusion criteria for this study. The mean age was 34.5 years (interquartile range [IQR]: 28.8-53); 50%(N = 11) were female. Fourteen (63.6%) had generalized epilepsy. Six (27.3%) had a history of status epilepticus. The mean number of antiseizure medications (ASMs) in those patients was three (IQR: 2-4). Eight (36.4%) patients had severely impaired or no language skills and seven (31.8%) required wheelchair. Eleven (50%) had a mood disorder and seven (31.8%) of them were taking antipsychotic medications. The mean duration of admission duration was 6.6 days (IQR: 3.5-8.5). There was a clinical-electrographic correlation between the behavioral events and epileptic seizures in nineteen (86.4%) of the patients. CONCLUSIONS: Admission to the EMU provided an accurate characterization of transient events in people with ID and epilepsy with improvement in their medical management.

Development and psychometric evaluation of the Group Home Culture Scale.

BACKGROUND: Organizational culture in group homes for people with intellectual disabilities has been identified as influencing staff behaviour and residents' quality of life (QOL). Despite this influence, culture has been under-researched, with no published and validated instrument to measure its dimensions in group homes. The aim was to develop such a measure. METHOD: The Group Home Culture Scale (GHCS) was developed using a theory-driven approach. Items were generated from the research literature, which were reviewed by experts and tested in cognitive interviews. Data from 343 front-line staff were used for exploratory factor analysis. RESULTS: The content and face validity of the GHCS were found to be acceptable. Exploratory factor analysis indicated that the GHCS measured seven dimensions of group home culture. Cronbach's alpha for the dimensions ranged from 0.81 to 0.92. CONCLUSIONS: The GHCS has potential use in research to determine whether dimensions of group home culture predict the quality of staff support and residents' QOL.

Dimensions of group home culture as predictors of quality of life outcomes.

BACKGROUND: Research has shown that there is variability in quality of life (QOL) outcomes for people with intellectual disabilities who live in group homes. The aim was to examine dimensions of group home culture as predictors of QOL outcomes. METHOD: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture in 23 group homes. QOL data were available from 98 people with intellectual disabilities. Multilevel modelling was used to examine the associations between the GHCS subscales and four QOL-dependent variables. RESULTS: Of the GHCS subscales, Effective Team Leadership and Alignment of Staff with Organizational Values significantly predicted residents' engagement in activities. Supporting Well-Being significantly predicted residents' community involvement. None of the GHCS subscales significantly predicted domestic participation and choice making. CONCLUSIONS: The findings suggest that strategies to improve Effective Team Leadership and Supporting Well-Being dimensions of culture may contribute to enhancing certain QOL outcomes.

Service managers' experiences of how the participation of people with intellectual disabilities can be promoted in Swedish group homes.

BACKGROUND: People with intellectual disabilities in staffed group homes often need lifelong support and dependency on others. Thereby, special demands are placed on staff and service managers to ensure opportunities for participation in everyday life. This study aims to explore how service managers promote participation in Swedish group homes for adults with intellectual disabilities. METHOD: A qualitative research design involving individual interviews with 14 service managers was used to gain an understanding of how the participation of adults with intellectual disabilities can be promoted in Swedish group homes. RESULTS: The results comprise two main themes; Creating preconditions for participation and Barriers for promotion of participation. CONCLUSIONS: Service managers experienced that promoting service user participation in group homes was an important part of their responsibility. The findings indicate that structural strategies such as coaching, supervision and reflection are important and should be further developed.

[In which residential settings do older persons with intellectual disability live? : A quantitative comparison of age groups for Westphalia-Lippe]. / In welchen Wohnsettings leben ältere Menschen mit geistiger Behinderung? : Ein quantitativer Vergleich von Altersgruppen für Westfalen-Lippe.

BACKGROUND: The number of aged persons with intellectual disability (ID) in Germany is increasing; however, reliable data on the residential settings in which they live are missing. The aim of this study was to estimate how adults with ID of different age groups are distributed over the various residential settings using the example of Westphalia-Lippe. MATERIAL AND METHODS: Administrative data on all adults with ID who received aid for social integration were statistically analyzed. Data on persons with ID in long-term nursing homes were collected via telephone interviews and questionnaires. Finally, the results were merged to obtain a comprehensive overview for Westphalia-Lippe. RESULTS: In Westphalia-Lippe aged persons with ID (≥65 years) rarely live independently but mostly with family members or in supported living arrangements. They are living in larger community-based homes or in residential institutions more frequently than younger persons with ID and one fifth have been living in nursing homes for a comparatively long period of time. CONCLUSION: Older persons with ID have so far hardly benefited from the increasing residential options for supported living. All forms of services and residential arrangements for persons with ID have to adapt to the changing needs for support in old age. Long-term nursing homes should not mutate into places where people spend the complete phase of old age.

Survival, Signaling, and Security: Foster Carers' and Residential Carers' Accounts of Self-Harming Practices Among Children and Young People in Care.

Research on clinicians' interpretations of self-harming practices has shown that they can often be negative. To date there has been limited consideration of other professionals' narratives, notably those working in social care. This article presents focus group and interview data generated with foster carers ( n = 15) and residential carers ( n = 15) to explore the symbolic meanings ascribed to self-harm among the children and young people they care for. Three repertoires of interpretation are presented: survival, which conceives self-harm as a mechanism for redefining the identity of "looked-after"; signaling, which understands self-harm as a communicative tool for the expression of emotion; and security, which sees self-harming practices as testing the authenticity and safety of the caring relationship. Through their focus on sociocultural narratives, carers position themselves as experts on self-harm due to their intimacy with young people's social worlds. This construction potentially creates distance from health professionals, which is problematic given the current privileging of interprofessional working.

Qualitative evaluation of a physical activity health promotion programme for people with intellectual disabilities in a group home setting.

BACKGROUND: There is a lack of health promotion programming designed to change the physical activity environment of the group home setting. The Menu-Choice programme assists staff in creating physical activity goals alongside residents with intellectual disabilities and provides strategies to incorporate activity into the group home schedule. The purpose of this study was to complete a process evaluation of Menu-Choice utilizing qualitative methods. METHODS: Twelve participants, who completed a 10-week pilot intervention (n = 7 staff, mean age 42; n = 5 residents, mean age 52), participated in face-to-face interviews. Participants represented five group home sites involved in the intervention. RESULTS: Meta-themes included: (i) Programme training, (ii) Programme implementation, (iii) Programme physical activity, (iv) Programme barriers, (v) Programme facilitators and (vi) Programme feedback. CONCLUSIONS: Changes in programme training and simplified programme materials are needed to accommodate identified barriers for implementation. The importance of obtaining increased agency support and policy change is highlighted.

Quality Group Home Care for Adults with Developmental Disabilities and/or Mental Health Disorders: Yearning for Understanding, Security and Freedom.

BACKGROUND: The purpose of this study was to uncover and understand factors influencing quality of care received by adults with developmental disabilities and/or mental health disorders living in group homes. METHODS: The present authors conducted a secondary analysis of data from nine focus group discussions with adults with developmental disabilities and/or mental health disorders, and their family and paid caregivers (N = 52). To focus the analysis, the present authors drew on the research literature to craft a model of quality of group home care using concepts of social inclusion and self-determination, and corresponding staff approaches that include active support and person-centred care. RESULTS: Social inclusion and self-determination for adults in group homes are facilitated by staff approaches and manifest in residents being understood and experiencing security and freedom. CONCLUSIONS: The present authors offer recommendations for group home resources, training, communication and outcome measures that promote residents' being understood and experiencing security and freedom.

Pilot Implementation of a Wellness and Tobacco Cessation Curriculum in North Carolina Group Homes.

Despite a steady decline in smoking rates in recent decades, individuals with mental illness continue to smoke at disproportionately higher rates than the general population. Adults with mental illness are motivated to quit and quit with rates similar to the general population when evidence-based cessation interventions are used. To build an evidence base for a wellness and cessation curriculum aimed at individuals with mental illness, the Breathe Easy Live Well (BELW) program was pilot tested in two group homes in North Carolina in the spring of 2014. Evaluators conducted pre- and post-implementation site visits and interviews with program instructors to assess outcomes as well as barriers and facilitators to implementation. Qualitative analysis of the data indicated that implementation was successful in both group homes, and the following themes emerged: (1) Training and technical assistance provided throughout implementation was sufficient; (2) Instructors used prior professional experiences and goal setting to facilitate program success and participant engagement; (3) Fostering positive coping strategies contributed to reports of reduced smoking; (4) Curriculum length may be a barrier to recruitment. Additional results included an increased interest among group home residents in more diligently managing mental illness symptoms and one group home moving the designated smoking area out of the direct path of the entrance/exit. Results of this pilot project suggest that BELW could be a potentially useful tool for group home staff to address health and wellness along with smoking cessation among individuals with mental illness.

The role of support staff as people move from congregated settings to group homes and personalized arrangements in Ireland.

The movement of people with intellectual disabilities into the community is increasingly endorsed by public policy. Whilst staff are critical to a successful transition to the community, there is only scattered research on their role in supporting people to move. In this study, 32 staff and the 16 people with intellectual disabilities they supported to move from congregated settings to group homes or personalized living arrangements in the community were interviewed on two occasions, before (time 1) and after (time 2) the move. In congregated settings, staff steered the move to community living, they helped them to settle in community group homes and supported them to increase control over their lives in personalized community arrangements, where they support became increasingly more personalized and geared towards community participation and development of social relationships. Implications for staff training are drawn.

Alzheimer's disease patients institutionalized in group homes run by long-term care insurance exhibit fewer symptoms of behavioural problems as evaluated by the Behavioural Pathology in Alzheimer's Disease Rating Scale.

BACKGROUND: The behavioural and psychological symptoms of dementia (BPSD) caused by Alzheimer's disease (AD) can burden caregivers. Group homes (GH), small nursing homes, for the elderly with dementia are institutions commonly run by the public long-term care insurance system in Japan. The purpose of this study was to compare the prevalence of BPSD of AD, as evaluated by the Behavioural Pathology in Alzheimer's Disease Rating Scale, between GH patients and community residents. METHODS: A total of 74 patients with AD were enrolled: 37 were patients institutionalized in GH (Hachinski score < 5) and 37 were demographic-matched community residents undergoing treatment at the Osaki-Tajiri SKIP Center. There were no significant differences in mean age (81.4 vs 81.1 years, P = 0.816), mean educational level (7.7 vs 8.0 years, P = 0.497), sex (women/men: 30/7 vs 30/7, P = 1.000) and mean Mini-Mental State Examination scores (14.1 vs 14.1, P = 0.950) between the two groups. Care level (range: 0.5-5.0, slight to bedridden), activities of daily living care level (range: 1-7, almost normal to severe), and the presence or absence BPSD based on the domains of the Behavioural Pathology in Alzheimer's Disease Rating Scale were compared. RESULTS: GH patients had a significantly higher care level (P < 0.05) and activities of daily living care level (P < 0.05) but had fewer symptoms of BPSD (P < 0.05) than community residents. When the activities of daily living care level was controlled, GH patients had significantly fewer symptoms than community residents in Aggressiveness (21% vs 50%; χ2 = 4.5, P = 0.035), Affective disturbances (13% vs 42%; χ2 = 5.1, P = 0.023), and Anxieties and phobias (4% vs 46%; χ2 = 11.1, P = 0.001). CONCLUSIONS: GH run by the long-term care insurance system appear to be effective in improving environmental factors for moderate AD patients and reducing Aggressiveness, Affective disturbances, and Anxieties and phobias.

Health issues of older people with intellectual disability in group homes†

BACKGROUND: This paper explores how group home staff in Victoria, Australia, responded to residents with an intellectual disability (ID) as they developed age-related health conditions. METHOD: The analysis was based on a longitudinal study that followed 17 ageing group home residents over a 3-year period. Eighty-three interviews were conducted with 30 group home staff in 17 group homes. Dimensional analysis, a variant of grounded theory, guided data collection and analysis. RESULTS: Findings revealed that the organisations all had systems in place to address health issues. However, the results also suggest an inability of staff to differentiate between significant health conditions and normal age-related changes, thus contributing to delays in care for serious medical conditions. CONCLUSIONS: Lack of knowledge about normal ageing and an absence of organisational policies influence timeliness of diagnosis and treatment for people with ID. Group home staff could be more effective advocates for older residents, leading to improvements in health outcomes, if they had basic knowledge about normal ageing and symptoms of common age-related illnesses and if group home agencies provided clearer guidance to their staff. The study has implications for staff education and organisational policy development for group homes.

Changes in Challenging Behaviors Accompanying Transition to a New Facility in Individuals with Intellectual Disabilities.

Challenging behavior (CB), the most common example being extreme self-injurious or aggressive/destructive behavior, is often observed as a major behavior issue in individuals with severe intellectual disabilities. This study investigated how CB changed among residents of a facility for people with disabilities before and after it was restructured from a traditional format single room shared by two to three individuals with approximately 20 residents lived together to a format featuring private areas with two rooms per resident and a unitcare system. Twenty-one residents of Care Home A, which was rebuilt in the new care format, were selected. Care staff completed a questionnaire one month before, one month after, and six months after residents moved to the new facility. Scores were compared among each time point. The results revealed significant reductions in residents' aggressive, stereotyped, and targeted behaviors, such as hitting their own head and fecal smearing. The major features of the restructured facility were a living space consisting of two private rooms per resident and a shift to unit care for the entire ward. These new features enabled residents to reduce destructive stimuli and made it easier to understand what to do in each private room.

Acute Abortive Therapies for Seizure Clusters in Long-Term Care.

OBJECTIVES: To describe acute seizure treatment for the long-term care setting, emphasizing rescue (acute abortive) medications for on-site management of acute unexpected seizures and seizure clusters. DESIGN: Narrative review. SETTING AND PARTICIPANTS: People with seizures in long-term care, including group residences. METHODS: PubMed was searched using keywords that pertained to rescue medications, seizure emergencies/epilepsy, seizure action plans, and long-term care. RESULTS: Seizure disorder, including epilepsy, is prevalent in long-term care residences, and rescue medications can be used for on-site treatment. Diazepam rectal gel, intranasal midazolam, and diazepam nasal spray are US Food and Drug Administration (FDA)-approved seizure-cluster rescue medications, and intravenous diazepam and lorazepam are approved for status epilepticus. Benzodiazepines differ by formulation, route of administration, absorption, and metabolism. Intranasal formulations are easy and ideal for public use and when rectal treatment is challenging (eg, wheelchair). Intranasal, intrabuccal, and rectal formulations do not require specialized training to administer and are easier for staff at all levels of training compared with intravenous treatment. Off-label rescue medications may have anecdotal support; however, potential disadvantages include variable absorption and onset of action as well as potential risks to patients and caregivers or care partners. Delivery of intravenous-administered rescue medications is delayed by the time needed to set up and deliver the medication and is subject to dosing errors. Seizure action plans that include management of acute seizures can optimize the quality and timing of treatment, which may reduce emergency service needs and prevent progression to status epilepticus. CONCLUSIONS AND IMPLICATIONS: Seizure disorder is prevalent across all ages but is increased in older adults and in those with intellectual and developmental disabilities. Prompt intervention may reduce negative outcomes associated with acute unexpected seizures and seizure clusters. Seizure action plans that include acute seizures can improve the treatment response by detailing the necessary information for staff to provide immediate treatment.

Group Homes and COVID-19: Perspectives of Youth Residents, Staff, and Caregivers.

OBJECTIVE: This study explored the perspectives of being in a youth group home during the COVID-19 pandemic from youth residents, staff, and caregivers. METHODS: We conducted semi-structured interviews with 9 youth residents, 8 group home staff members, and 13 caregivers of residents. All participants were connected to the group home before and during the COVID-19 pandemic. Thematic analysis was used to identify lived experience themes. RESULTS: Two overarching themes were identified among the youth residents-Safety response to COVID-19 and Socialization changes due to COVID-along with three subthemes: Structure leading to separation, Support and belonging amid a pandemic, and Competency. Three overarching themes were identified among the group home staff: Safety response to COVID-19, Increased responsibility, and Mental health changes because of a pandemic. Finally, three overarching themes were identified among the guardians of youth residents: Safety response to COVID-19, Belief in a mental health impact on the child, and Communication during a pandemic. Conclusions: The findings provide the experiences among three group home stakeholders. Overall, they demonstrated resilience in a setting and time when resilience was essential. Finally, the findings offer insight on the basis of which group homes/organizations can prepare for crises of a great magnitude, including vital communication elements.

Promoting Physical Activity in Group Home Settings: Staff Perspectives through a SWOT Analysis.

PURPOSE: The aim of the study was to investigate perceptions of staff about the promotion of physical activity (PA) in selected group residences of Hong Kong (HK), some of which had experienced a multi-component PA program. METHOD: Focus group interviews with nineteen staff members from four group homes (two of which received the program) were conducted. FINDINGS: A SWOT analysis provided important insights into residential staff views about key influences on the quality of PA programs for residents with intellectual disabilities (ID). Positive (strengths and opportunities) and negative (weaknesses and threats) influences were identified. They were associated with characteristics of residents, staff, and group residence. Increasing age and low motivation are impediments to PA engagement of adults with ID. Staff competence and prior unsuccessful experience in promoting PA are also implicated. CONCLUSION: The PA program quality is mediated by the quality of staff interpersonal interactions with their clients and their commitment in encouraging such adults with ID to join and persistent in PA as well as staff seeking external resources and support as well as using initiative to adapt PA promotion activities in their specific group residential context.

Individualized Apartment Accommodation for People With Intellectual Disability: Protocol for a Qualitative Study Examining the Well-Being and Support Outcomes Linking Housing and Health.

BACKGROUND: Understanding the outcomes associated with both receiving and providing support to people with intellectual disability in specific settings can facilitate the alignment of health providers, community care providers, architects, and urban planners to strengthen levels of autonomy and community participation of people with intellectual disability living in the community. This study explores the impact of providing support (available 24 hours a day) for people with intellectual disability in a high-density apartment. It seeks the perspectives of people with intellectual disability who have moved into an apartment from a group home (where 4-6 people with disability live), their families, and support staff. It will enable comparison between two models of supported accommodation, group homes and individualized apartments, in a community setting. OBJECTIVE: The aims of this study are to explore the impact of an individualized apartment model of supported accommodation in a high-density setting on the well-being, autonomy, and participation of people with intellectual disability living and receiving support; the experience of providing care or support; and how this setting impacts the logistics of how quality support is provided. METHODS: Qualitative research methods were employed as the primary means of collecting and analyzing data. There are two main sources of data in this study: (1) semistructured interviews with participants in up to 3 waves (pre, post 1, and post 2) and (2) pre- and postoccupancy evaluation data on the design, layout, and location details of the built environments. Coded interview data will be paired with pre- and postoccupancy evaluations of the two accommodation settings. RESULTS: As of May 2020, we have recruited 55 participants. There have been 96 interviews conducted in 2 waves with people who have moved into supported accommodation, families, and staff. Collected data are currently being analyzed. We expect the results of the trial to be published in a peer-reviewed journal in late 2020. CONCLUSIONS: This paper sets out a study of an alternative housing and support model for people with intellectual disability. It will capture personal experiences of people with intellectual disability receiving support in an apartment compared to their experiences in a group home. It will also capture the experiences of support staff working in the new setting and reveal how this differs from a group home setting. The inclusion of pre (group home) and post (apartment integrated into a community setting) measures addresses evaluative and comparative questions around the nature and impacts of the small-scale apartment and support model for both those who live and receive support, and those who support them. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/18248.