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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., Results: Sixteen articles were identified. Outcomes included engagement, the quality of staff support, choice and challenging behaviour. Structured observations were the most frequently used measurement method. Only two studies explored people with intellectual disabilities' perspectives about Active Support., Conclusions: Consistent use of similar measures is a strength of Active Support research. Including perspectives of people with intellectual disabilities may provide insight into dimensions of support not been measured and assist in further developing these measures and Active Support practice., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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. Field-notes, interview notes and transcripts were analysed using inductive thematic analysis by a researcher naïve to the project and the previous literature. Initial coding was re-examined after sensitisation to theorised models in previous literature to identify the most parsimonious fit. The two settings were rated and compared using a five-point Likert scale for each of the dimensions., Results: The findings describe group home culture across seven dimensions. There were mixed ratings across the different dimensions reflecting inconsistencies in culture that were reflected in staff practice. The challenge in assigning a global rating of culture in group homes, which includes interactions across multiple staff and multiple residents over time, was highlighted., Conclusion: The development of an observational measure of culture is highlighted as potentially helpful in understanding and responding to culture in services for individuals with intellectual and developmental disabilities., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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. Qualitative fieldnotes were analysed thematically., Findings: Practice leadership scores increased significantly between 2013 and 2018 but declined significantly between 2018 and 2022. Scores were significantly higher in organisations that had implemented Active Support since 2013 compared to later adopters. Higher scoring organisations had structures that supported frontline managers with practice leadership and that countered increasing administrative demands., Conclusions: Establishment of support structures for practice leadership by organisations warrants further investigation together with the relative importance of each task of practice leadership., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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. Five databases returned 66 articles plus three from hand searches., Appraisal and Synthesis: Nine articles were included in this review. The Critical Appraisal Skills Programme tool was used to assess the quality of the research. NVivo 12 was used as a tool to organise the articles., Results: Marginalisation of LGBTQ adults with intellectual disability in western societies is mirrored in disability organisations. There remains a dearth of research into experiences of transgender people with intellectual disability who use disability services., Conclusions: Research into interventions that support the inclusion of this cohort in disability support services is needed., (© 2021 John Wiley & Sons Ltd.)

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., Methods: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 9 frontline staff from 3-day services. Interviews were recorded, transcribed and analysed for themes using constant comparison and line-by-line coding., Results: Five categories of good practice were identified: collaborative hands-on leadership, well-planned services, respect for people with intellectual disabilities and their carers, a culture of continuous improvement and professionalization of the support worker role., Conclusions: Results align with research undertaken in accommodation services for people with intellectual disabilities, suggesting commonalities in frontline staff's perceptions of quality in both day and accommodation services., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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., (© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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., (© 2019 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support., Methods: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM)., Results: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support., Conclusions: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership., (© 2019 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs., Methods: Data from 182 service users, 20-81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports., Results: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC)., Conclusions: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed., (© 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: Paperwork is a key tool that transforms organizational intentions into actions in group homes, although prescriptive procedures may limit how frontline staff use it in practice. The aim of this study was to explore how frontline staff use paperwork in group homes for people with intellectual disability and identify practice implications., Method: Constructivist grounded theory methodology guided the research. Data collection included semi-structured interviews and participant observations. Coding, comparison and sorting methods were adopted to analyse how staff used paperwork., Results: Staff followed organizational paperwork rules when they aligned with their resident-focused approach to work. When they perceived rules to misalign with this approach, they managed paperwork by adjusting the time and place of completion, managing content, creating alternative tools and refusing completion., Conclusions: Staff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development., (© 2018 John Wiley & Sons Ltd.)

Background: Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self-perception of frontline staff about their role in group homes for people with intellectual disability., Method: Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants' self-perception., Results: Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted., Conclusions: Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue., (© 2017 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes., Methods: A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters., Results: Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings., Conclusions: The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains., (© 2016 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: Little progress has been made towards community participation of people with intellectual disability despite it being a policy aim since the 1980s. We aimed to identify the features of programmes designed to support community participation., Method: A scoping review was conducted of peer-reviewed literature between 2000 and 2015, about interventions to support community participation for adults with intellectual disability., Results: A small body of evidence relates to the design and effectiveness of interventions to enhance community participation. Seventeen studies reported programmes reflecting three conceptualizations of community participation (as social relationships, as convivial encounter and as belonging) that used strategies such as active mentoring, facilitative support worker practice and arts-based programmes., Conclusions: Studies showed the diverse and person-centred nature of community participation and demonstrated the need for larger-scale studies of promising interventions that include details of costs, and strategies to guide implementation of policies to support community participation., (© 2017 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability., Aim: The study explored the effects of membership of independent self-advocacy groups on the social identity of people with intellectual disability., Method: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 25 members of six self-advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK., Results: Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business-like person, a self-advocate and an independent person were opened up. Self-advocacy is an important means of furthering social inclusion of people with intellectual disability., (© 2015 John Wiley & Sons Ltd.)

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters., (© 2015 John Wiley & Sons Ltd.)

Background: A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively., Method: Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review., Results: Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities., Conclusions: This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership., (© 2014 John Wiley & Sons Ltd.)

Background: Funding bodies in Australia and the United Kingdom require research on issues that affect the lives of people with intellectual disability to be inclusive. Debate continues about the nature and benefits of inclusive research, which has become an umbrella term encompassing a broad spectrum of approaches., Method: This study proposes one method of inclusive research, the 'collaborative group' approach. It examines the processes used to conduct a study involving academics and self-advocates, presenting findings derived from an inductive analysis of field note data, interview and meeting transcripts., Results: Five components are identified: shared and distinct purposes of participants equally valued, shared involvement and distinct contributions equally valued, flexible, adapted research methods, working as a group with trusting relationships and dispersed power, and scaffolding for inclusion., Conclusions: This collaborative group method potentially results in better research than either academics or self-advocates could achieve alone and has multiple knowledge outcomes with differing accessibility and complexity., Background: When people with an intellectual disability and researchers from universities or other organisations do research together it is called inclusive research. People have worked together on research for a long time but there are still some questions about why we should do it and the best way to do it., Method: This paper talks about one way of doing inclusive research that the people who wrote the paper call 'collaborative group approach'. They did a big project with a group of people with an intellectual disability and talked and thought a lot about what they were doing. What they found out. There are five parts to working this way; (i) Having some of the same and some different reasons for doing the research (ii) Doing some things together and doing some things apart (iii) Being able to change things as you go so people can do what they want to do and are good at. (iv) Knowing each other well and being able to work together equally. (v) Thinking about the way you work all the time to make sure people are doing what they are good at and what they want to do., Conclusion: If people work this way it might lead to better research and understanding about the lives of people with an intellectual disability., (© 2013 John Wiley & Sons Ltd.)

Background: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour., Method: A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it., Finding: Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed., Conclusions: A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish., Background: Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research., Method: The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history., Results: There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills., Conclusions: In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another., (© 2013 John Wiley & Sons Ltd.)

Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage., Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable interactions. Data were collected through observation and interviews, and data were analysed using a constructivist grounded theory approach., Results: An overarching category of sharing time together with two main sub-categories of Having fun and Hanging out emerged. Having fun was composed of routines and comedic interaction; hanging out was comprised of contact and presence., Conclusions: Legitimizing mirth and sharing time in social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with severe intellectual disability., (© 2012 Blackwell Publishing Ltd.)