Siblings of adults with intellectual disabilities in Chinese societies: A scoping review.

Adult siblings without disabilities play important roles in relation to their brothers and sisters with intellectual disabilities. This study reviewed knowledge about adult sibling relationships in Chinese societies, where one sibling has intellectual disability. Five English and two Chinese databases were searched for publications published up to 2022.

Supporting healthy ageing for people with intellectual disabilities in group homes: Staff experiences.

Background: This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding.

Method: Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services.

Findings: Four themes emerged.

Inclusive mainstream services for people with intellectual disabilities: A relational approach.

Background: Despite growing recognition of their right for inclusion in society, people with intellectual disabilities are often excluded from mainstream services, or experience poor service outcomes.

Method: Taking a relational approach that considers the interpersonal relations and interactions that occur in mainstream service settings in Australia, this paper examines the features of services that research participants considered more inclusive.

Results: Relations between service users with and without intellectual disabilities, mainstream service staff and disability support workers in inclusive mainstream services were characterised by; respect; warm, welcoming and convivial interpersonal engagement; active listening; proactive assistance; flexibility; mediation to create a safe environment; and collaboration and shared responsibility by both mainstream staff and disability support workers in supporting a service user with intellectual disability.

Whose voice is it anyway? Adults with intellectual disabilities and future planning: A scoping review of qualitative studies.

Background: Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary.

A Scoping Review of Outcomes Measured and Involvement of People With Intellectual Disabilities in Active Support Research.

Background: Active Support is a staff practice that aims to increase engagement of people with intellectual disabilities. This study seeks to: (1) identify the outcomes of staff using Active Support and how these are measured; (2) identify how the views of people with intellectual disabilities have been included in Active Support research.

Method: A scoping review was conducted of peer-reviewed articles about Active Support published between 2009 and 2023.

Organisational culture in 'better' group homes for adults with intellectual and developmental disabilities in England: A qualitative study.

Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England.

Method: Participant observations and semi-structured interviews with staff were carried out in two group homes.

The strength of Frontline Practice Leadership in Australian supported accommodation services: Challenges confronting service providers.

Background: The strength of practice leadership predicts the quality of Active Support but it can be compromised by other demands on frontline managers. The study aimed to identify and understand differences in practice leadership over time and between organisations.

Method: Data collected in 2022 in 96 services from 11 organisations using the Observed Measure of Practice Leadership were compared to similar data from 2013 and 2018.

Active Support Measure: a multilevel exploratory factor analysis.

Background: Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM.

Factors Associated With Experiences of Harassment or Abuse Among Lesbian, Gay, Bisexual, Trans, Queer, and Asexual Young People With Disability in Australia.

Lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) young people with disability are known to experience higher rates of harassment or abuse than LGBTQA+ young people without disability. This study focused on participants in Australia and identified factors associated with harassment or abuse among LGBTQA+ adolescents and young adults who reported a disability as well as associations with mental health outcomes. Analyses were conducted from a national survey that included 2,500 LGBTQA+ people who reported a disability and were aged 14 to 21 years.

More-than-care: People with intellectual disability and emerging vulnerability during pandemic lockdown.

This paper offers more-than-care as a framework for analysing how vulnerability emerges in the lives of people with intellectual disability beyond relations of care. More-than-care detaches vulnerability from the identity category of disability. It provides a framework for conceptualising vulnerability in an unequal, neoliberalising, and ableist world and sheds new light on the ever-evolving constitution of vulnerability and disability.

Progressive resistance training in young people with Prader-Willi syndrome: protocol for a randomised trial (PRESTO).

Introduction: Preliminary evidence suggests that progressive resistance training may be beneficial for people with Prader-Willi Syndrome (PWS), a rare genetic condition that results in muscle weakness and low muscle tone.To establish whether community-based progressive resistance training is effective in improving the muscle strength of people with PWS; to determine cost-effectiveness; and, to complete a process evaluation assessing intervention fidelity, exploring mechanisms of impact, understanding participant experiences and identifying contextual factors affecting implementation.

Methods And Analysis: A multisite, randomised controlled trial will be completed.

Factors associated with experiences of abuse among lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) adults with disability in Australia.

Background: Lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) people with disability report greater levels of abuse than those without disability.

Objective: This study sought to further understand these experiences by examining factors associated with experiences of abuse among LGBTQA+ adults who reported a disability in Australia.

Methods: A national survey was conducted that included 2629 LGBTQA+ people who reported a disability aged 18 years and older, with data collected on experiences of verbal abuse, sexual assault, and social exclusion in the past 12 months as well as demographic characteristics.

Patterns of group home culture in organisations supporting people with intellectual disabilities: A cross-sectional study.

Background: Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations.

Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture.

Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences.

Background: Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them.

Method: Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities.

Forming and supporting circles of support for people with intellectual disabilities - a comparative case analysis.

Background: Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs.

Method: A comparative case study of three Australian Circles of Support programs was conducted.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12.

"I used to call him a non-decision-maker - I never do that anymore": parental reflections about training to support decision-making of their adult offspring with intellectual disabilities.

Purpose: A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters.

Social inclusion of LGBTQ and gender diverse adults with intellectual disability in disability services: A systematic review of the literature.

Background: Lesbian, gay, bisexual, transgender, queer (LGBTQ) and gender diverse adults with intellectual disability experience exclusion within disability services.

Objective: This review explores the experiences of social inclusion/exclusion of this cohort in the context of disability services.

Search Method: A systematic search was conducted of peer-reviewed research published between January 2014 and April 2019.

A process of decision-making support: Exploring supported decision-making practice in Canada.

Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making. The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters.

What is good service quality? Day service staff's perspectives about what it looks like and how it should be monitored.

Background: Australian disability services must comply with quality standards defined by federal government. Standards are abstract, focus on paperwork and rarely describe what good service quality looks like in practice. This research explored frontline day service staff's perceptions of good service quality to identify ways that it may be better monitored.

Creating opportunities for convivial encounters for people with intellectual disabilities: "It looks like an accident".

"Convivial encounter" provides a new lens for understanding social inclusion of people with intellectual disabilities, characterised by shared activity and friendly interactions with strangers without intellectual disabilities. Places, props and support practices facilitate incidental convivial encounters. This study explored processes for deliberately creating opportunities for such encounters.

Possibility and risk in encounter between people with and without intellectual disability.

Background: Unpredictability, the risk of harm and possibility of rewards, are integral elements of encounter. Risk literature offers insight on the complex ways in which risk perceptions and attunements shape behaviours and interactions in encounter between people with and without intellectual disability.

Method: The paper draws on risk literature, encounter literature, and examples from the authors' previously published studies on encounter and work integrated social enterprises.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

: This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care.