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Objective: To learn about the challenges, policies, and needed resources to serve people with intellectual disability and protect staff during the COVID-19 pandemic. From the perspective of intellectual disability service providers. Methods: We conducted in-depth qualitative interviews with 16 intellectual disability organization administrators throughout Illinois, USA from November 2020 through February 2021. We coded and analyzed the data using thematic analysis. Results: Three major themes emerged: (1) COVID-19 caused considerable challenges to people with intellectual disability and staff and service providers, (2) intellectual disability organizations reinvented service provisions in response to COVID-19 challenges, and (3) the interrelatedness of intellectual disability organizations, public policies, and community entities became evident. Conclusions: Exhibiting responsiveness to needs and developing innovative solutions were strategies championed by intellectual disability organizations during the pandemic. Fostering collaboration with community entities may assist these organizations in navigating pandemic challenges and developing resilient infrastructure for future environmental threats. [ABSTRACT FROM AUTHOR]

Background: Studies about teams of staff supporting people with intellectual disability have focused on team performance of existing teams. This study aimed to examine important factors in the process of setting up a new team of support staff. Specifically, we considered the process for a team that supports service users with mild intellectual disability or borderline intellectual functioning who display severe challenging behaviour from the orthopedagogical perspective (i.e., with a focus on contextual factors). Method: Three participant groups (service users, support staff, and professionals supporting a team) participated in a concept mapping procedure, including generating statements in interviews and focus groups, sorting, and rating. An expert group interpreted the results. Results: Important factors to one or more groups were: service users and support staff getting acquainted early, team safety, social support, a shared vision, and a positive reputation of the new home. Conclusions: Four core outcomes were addressed that may help service organisations to provide an environment matching the needs of service users who show severe challenging behaviour from the start. [ABSTRACT FROM AUTHOR]

Background: Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method: Semi‐structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results: Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution‐oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions: The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations. [ABSTRACT FROM AUTHOR]

Support staff and relatives are uncertain about multiple aspects of the sexuality of people with intellectual disabilities. Given that their attitudes embody positive and negative views, they can respectively support and restrict free sexual expression among people with intellectual disabilities and their potential for (intimate) relationships. A qualitative systematic literature review was conducted on the attitudes of support staff and relatives toward the sexuality of people with intellectual disabilities. A systematic search strategy was deployed across seven databases. The identified articles were screened on predetermined inclusion and exclusion criteria, and assessed on quality, which resulted in 31 included studies. A metasynthesis of these studies resulted in two major themes emerging, namely (a) attitudes toward the sexuality of people with intellectual disabilities, and (b) attitudes toward the sex education and support. Themes represented both positive and restrictive attitudes among support staff and relatives. The findings suggest that despite a general acceptance of the sexual rights of people with intellectual disabilities, certain forms of sexuality were approached more cautiously. Moreover, the sexual needs of some subgroups of people with intellectual disabilities received scarce attention. Those support staff and relatives holding rather restrictive attitudes appear to emphasize sexual risks. Finally, support staff and relatives stressed the importance of providing sex education and support for people with intellectual disabilities, while, simultaneously, expressing insecurity over the subject. The findings can help to improve the support provided to support staff and relatives to promote sexual health among people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Purpose: This qualitative research aims to explore staff perspectives on working effectively with people with intellectual disability who are in contact with the criminal justice system. Design/methodology/approach: Taking a case study approach, staff working for a third sector community organisation were interviewed about the components of effective work with their customers. The staff supported people engaged in the Community Justice Program. Findings: Staff consistently described relationship building as the most important part of their work. There were three components to relationship building: the process of relationship building, the elements of a high-quality staff–customer relationship and the staff skills needed to develop a good relationship. Originality/value: This paper makes two contributions to the literature. First, it focuses our attention on a third sector organisation supporting people in contact with the justice system as opposed to a formal criminal justice agency. Second, the paper seeks to understand the processes and skills staff deploy to build a high-quality relationship with criminal justice-involved people with intellectual disability. [ABSTRACT FROM AUTHOR]

An increase in descriptive evidence regarding person‐centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well‐being and quality of life. A specific Dutch example is the Integrated Emotion‐Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in‐depth understanding of the use of these components in the day‐to‐day support of older people with ID. A content analysis of five key documents was carried out. Five semi‐structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus‐group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion‐Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion‐Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed. [ABSTRACT FROM AUTHOR]

Care providers are key agents in the lives of individuals with an intellectual disability (ID). The quality of their support can be affected by manifestations of stigma. This scoping review was conducted to explore studies that provide indications of care providers' stigmatization of people with ID. Methods: A structured search was made in four databases to identify relevant studies in English-language peer-reviewed journals. Records were systematically and independently screened by the researchers. Results: The 40 articles included in this review were mainly conducted in Western countries and used Likert-type self-report measures of explicit attitudes. Stigmatization seemed more distinct concerning people with high support needs. The few studies on public stigma preliminary suggest that staff may also stigmatize people with ID based on other social identities. Regarding the support of structural stigma, staff reported skepticism regarding community inclusion for people with high support needs, and tended to be ambivalent about the protection-or-empowerment balance in the support of people with ID. Possible indications of stigmatization regarding sexuality were found on specific issues, such as self-determination and privacy. Agreement of staff with certain rights did not necessarily lead to staff acting in accordance with such rights. Conclusion: Indications of stigmatization of people with ID by care providers were found. Stigmatizing attitudes might affect the quality of care providers' support. Potential leads for future interventions concern creating awareness, sharing power, addressing diagnostic overshadowing, and providing explicit policy translations. Directions for future research concern strengthening the methodology of studies and enriching the studied topics. [ABSTRACT FROM AUTHOR]

Background: Therapeutic untruths (TU) are used in dementia services to de‐escalate distressing situations. The present authors explored the use of TU by care staff supporting people with an intellectual disability who displayed behaviours that challenged. Method: Data were collected from 126 staff (female = 72.2%; mean age = 41.9 years, SD = 10.7) via an online survey in relation to three areas: responses to three scenarios, reported use of different forms of TU and ratings of perceived effectiveness of, and level of comfort using, each type. Results: 96% of participants reported using TU themselves and observing their colleagues doing likewise. Models that included perceived effectiveness of, and level of staff comfort with using, different TU were significant, although only perceived effectiveness significantly independently contributed to the model. Conclusion: The use of TU was common, with levels consistent with those found in dementia services. The limitations and implications of the findings are discussed. [ABSTRACT FROM AUTHOR]

Background: Attributions are cognitive variables that influence a person's behaviour. Although a large volume of research has been conducted on the attributions of support staff with regard to challenging behaviour (CB) exhibited by people with intellectual disabilities (ID), studies on patterns of attributional dimensions (i.e. attributional styles) are scarce. Method: Using semi‐structured interviews, 19 support staff members were asked to describe incidents of aggressive, self‐injurious and sexualized challenging behaviour. Data on attributions were analysed using the Leeds Attributional Coding System. Results: Four attributional styles differed significantly for aggressive, self‐injurious and sexualized challenging behaviour. In addition, support staff members largely attributed these three types of CB to characteristics and behaviour of clients with ID. Conclusions: The results indicate that it is important to train support staff to recognize and understand the ways in which their attributions and behaviour influence the existence and maintenance of CB. [ABSTRACT FROM AUTHOR]

The aims of the research presented here are two-fold: to determine the decision-making role that people with learning disabilities award organizations and professionals offering support for independent living; and to assess the extent to which the dominant discourses of people with learning disabilities incorporate individual or social approaches. Ten focus groups were held with self-advocacy groups of people with learning disabilities. The critical discourse analysis approach was used to analyse the transcripts. The analysis shows that the discourse of people with learning disabilities tends to legitimize the role of organizations and professionals as agents in making decisions regarding their own lives. The study highlights the need to make use of these discourses to work together with people with learning disabilities to promote the exercising of their rights in decision-making and taking control of their lives. [ABSTRACT FROM AUTHOR]

Background: Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. Method: The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. Results: The LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. Conclusions: The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS. [ABSTRACT FROM AUTHOR]

Background: Transforming Care is making mixed progress in supporting people with intellectual and developmental disabilities, and complex needs, move to more appropriate specialist accommodations closer to home. Community support staff often spend greatest amounts of time with service‐users, yet are some of the least heard voices about why placements succeed and fail to varying extents. Method: Managers and support staff (n = 13), working in ostensibly "specialist" community placements, were interviewed about perceived barriers and facilitators to implementing Transforming Care. Transcripts were subjected to thematic analysis. Results: Participants identified difficulties balancing people's rights, safety and quality of life needs, and felt the system's expectations of them are hard to deliver within the resources, legislation, values and support models provided them. Multidisciplinary expertise was highly valued for both emotional and practical support, but was least valued when perceived as overly blaming or inspectorial. Specialist health input was seen to withdraw prematurely for this particular client group. Conclusion: Recommendations are provided for how staff perspectives should inform Transforming Care in interests of service‐users. [ABSTRACT FROM AUTHOR]

Background: Support from professionals plays an important role in helping people with intellectual disabilities to live an independent life. This research aims to analyse the role played by support professionals based on the perceptions of the professionals and self‐advocates with intellectual disabilities. The research was conducted in Catalonia (Spain). Method: A total of 33 interviews were conducted with front‐line managers and 10 focus groups with 72 self‐advocates. These were recorded and transcribed, and then analysed using thematic content analysis. Results: Self‐advocates particularly value professionals' interpersonal skills and emotional support. Front‐line managers and self‐advocates highlight training actions aimed at enhancing autonomy in the home and propose fostering natural supports and increasing the involvement of people with disabilities. Conclusions: Making progress in the rights of people with intellectual disabilities to an independent life requires requires transforming the support model, promoting decision making among people with intellectual disabilities, and strengthening interpersonal skills linked to emotional support in the training of professionals. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to debate the complexities of intervening with adults with learning disabilities and support staff in the natural environment and challenges of evaluating change. Design/methodology/approach: A critical review of the relevance and amenability of communication partnerships for interventions that promote communication growth in context was carried out. Particular consideration was given to the mechanism for change and implications for research design. Findings: The communication partnership is a reasonable focus for interventions aiming to promote the communication of adults with learning disabilities. Combining instructional training with in situ coaching appears to provide the most effective approach. Bringing about change within the dynamic context of communication is challenging and may benefit from an open, investigative design. Originality/value: This paper synthesises the available evidence on intervening in the communication environment and debates the potential of realist evaluation as a context-focused research design. [ABSTRACT FROM AUTHOR]

Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients or their surroundings. Research question: What do support staff consider as restraints on freedom and how do they justify these restraints? Research design: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Findings: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. Discussion: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client’s competence. Conclusion: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities continue to underutilize technology, in part due to insufficient training. Because support staff professionals provide instructional support, how they perceive integrating new technologies is important for people with intellectual disabilities. Method The authors conducted a sequential mixed-methods exploratory study (quan→ QUAL) including quantitative data from online surveys completed by 46 staff members and qualitative data from five focus groups attended by 39 staff members. Results Quantitative results show strong support for diverse technologies. In contrast, qualitative results suggest that staff members' support of technology decreases when they perceive that technology may jeopardize service users' safety or independence. Conclusions Although staff members identified increasing independence as the main reason to use new technologies with service users, they also worried that technologies used to increase the social inclusion of service users may pose undue risk and thus may limit their embrace of technology. [ABSTRACT FROM AUTHOR]

Background The social relationships model was developed to describe positive relationships between support staff and people with intellectual disability. We evaluated an educational intervention based on this model. Method Eighteen staff supporting 5 adult service users with severe or profound intellectual disability from 3 day services received the intervention. Mixed methods were used. A multiple baseline design determined changes in relationship processes between staff and service users following intervention. Descriptive field notes and staff interviews provided qualitative data. Results Positive changes in relationship processes were found, but the results were variable. Of note was a high effect for 1 service user, a minimal effect for 2, and no effect for 2 service users. Field notes revealed contributors to variable results, and interview data highlighted changes not captured by quantitative measures. Conclusions An educational intervention based on the social relationship model shows promise as a means to enhance staff relationships with people with intellectual disability. [ABSTRACT FROM AUTHOR]

Even though use of aided augmentative and alternative communication (AAC) by staff has been extensively researched, few studies relate to unaided AAC strategies such as key word signing (KWS). We explored the KWS views of two groups: direct support staff in group residential homes and teachers from special education secondary schools. We examined transcripts from individual semi-structured interviews with five direct support staff and five teachers using thematic analysis. Participants discussed consistency of KWS use and reasons for implementing KWS. Compared to direct support staff, teachers described more use of KWS throughout the day with more individuals with intellectual disability. Teachers discussed use of KWS to facilitate students’ present and future interactions, while direct support staff primarily discussed immediate effects. Participants experienced KWS implementation as a learning process and aimed to turn the use of manual signs into a routine habit. This required considerable self-monitoring, and the effort that this continuous self-feedback required, combined with environmental factors, could hinder KWS implementation. These preliminary findings suggest that preservice KWS training and on-site KWS assistance may need to be enhanced. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

Key word signing (KWS) is a means of augmentative and alternative communication frequently used with adults with intellectual disabilities (ID). Their acquisition of KWS has been described in the literature; however, little is known about the everyday KWS use among adults with ID and their support staff. This study aimed to give an account of the prevalence of KWS and the sign knowledge of adults with ID and their support staff in Flemish residential programs (RPs) and day care programs (DCPs). Communication specialists in all RPs and DCPs for adults with ID in Flanders, the Dutch-speaking part of Belgium, were contacted by phone and were asked whether they used KWS, and if so, whether they were willing to fill out a questionnaire about the KWS use of support staff and clients. Findings show that of 347 RPs and DCPs in Flanders, 85% met the inclusion criteria. Half (51.2%) of these programs used KWS. Of these 152 programs, 93 (61.2%) completed our questionnaire. A quarter (26.6%) of their adult clients with ID used KWS.Most of them knew 10-50 signs, whereas most support staff knew fewer than 10 signs. The presence of a speech and language therapist as well as sign knowledge and attitude of support staff were significantly related to the sign knowledge of their clients.Motivational problems for staff to use KWS were quite common. KWS support should be more widespread and more easily accessible. [ABSTRACT FROM AUTHOR]

Background Challenging behaviour of clients influences emotional wellbeing of staff; this in turn affects levels of staff engagement and avoidance within interactions with clients. The main goal of this study was to investigate to what extent levels of staff engagement and staff avoidance are related to challenging and desirable client behaviours and clients' initiatives for contact. Method Participants were 8 support staff and 3 clients. Staff and client behaviours were measured within moments of interaction in natural settings using systematic observational data. Results The results showed that general levels of staff engagement, avoidance, and client behaviours seem to be related. However, individual, sequential analyses do not support these relationships. Conclusions Future research should take a more individual and intrapersonal view of staff behaviour and staff–client interaction into account, in order to obtain a detailed and realistic image of individual patterns in interactions between support staff and clients. [ABSTRACT FROM AUTHOR]

Background Increasingly, people with intellectual and developmental disabilities (I/DD) are supported to participate in least-restricted settings in the community. However, little is known about desired community participation choice and control of people with I/DD, nor effective strategies to support full participation. Furthermore, service providers of this population in community and residential settings have unique roles in influencing choice and control in community participation. Research Aim The purpose of this project is to empower adults with I/DD in community participation by collaborating with agency staff and administrators to strategize change in service provision and programming. Methods This article describes the development, imple-mentation and mixed-methods evaluation of a pilot staff intervention. Results Findings indicate staff who participated in pilot intervention report increased confidence in supporting adults with I/DD to participate in their communities. Conclusions Intervention development has implications for staff, administrators and agencies in planning and executing opportunities to support choice and control for community participation for adults with I/DD. [ABSTRACT FROM AUTHOR]

There is growing evidence that acceptance and mindfulness interventions for support staff in intellectual disability (ID) services can have beneficial mental health outcomes for staff themselves and individuals with ID. However, there are few data focusing on the relevance of related psychological processes for support staff well-being. The purpose of this research was to contribute to the evidence base and to introduce a new measure of staff values in ID services: the Support Staff Values Questionnaire (SSVQ-ID). Fifty-nine support staff completed a measure of psychological acceptance (the Acceptance and Action Questionnaire), the SSVQ-ID, and the Maslach Burnout Inventory. The acceptance and values measures had good internal consistency and statistically significant associations with dimensions of burnout. The results suggest that further research on acceptance and mindfulness process variables is warranted along with interventions designed to increase support staff resilience, especially when working with clients with dual diagnosis. [ABSTRACT FROM AUTHOR]

Accessible summary Support staff were asked what were the important things they did to support people with an intellectual disability and communication difficulties., Support staff said that they understood that facilitating people to communicate effectively could improve the quality of life of these people., However, support staff said they did not always have the training or resources to provide this support., Support staff need to learn more about how to support people with an intellectual disability and ensure their right to communicate is upheld., Summary This study explores front-line staff knowledge and perceptions of how people with intellectual disability residing in residential services are supported to communicate effectively. Participants ( n = 138) completed a self-report questionnaire adapted from an instrument developed by DeSimone & Cascella (2005) Journal of Developmental and Physical Disabilities, 17(1): 1. Support staff recognise that facilitating people with an intellectual disability to communicate is an important part of their role. Support staff indicate that when the importance of supporting communication is recognised and prioritised, it has a marked impact on the quality of life of people availing of residential services. However, front-line staff indicate that they do not always have the knowledge or resources to provide such supports. Lack of specialist support services such as speech and language therapists is identified as a constraint. It is suggested that an organization-wide commitment is required across front-line services to ensure that the right of people with an intellectual disability to communicate is upheld. [ABSTRACT FROM AUTHOR]