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Institutional talk and practices: a journey into small group-homes for intellectually disabled children
- Author:
- FYLKESNES Ingunn
- Journal article citation:
- Disability and Society, 36(6), 2021, pp.999-1020.
- Publisher:
- Taylor and Francis
This article sheds light on a group of children who are hardly visible within the body of research: intellectually disabled children living away from home in full-time institutional settings. The purpose of the study was to contribute to the extended knowledge of these children’s everyday life and to inform researchers, authorities and service providers. Participant observations have been the main method of generating data, supported by interviews with professionals and parents. An interpretive analytical approach was employed. The results presented in this article show how institutional talk and practices can evolve within institutional systems, and how these factors affect the everyday lives of children. (Edited publisher abstract)
Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK
- Authors:
- BERNAL Jane, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(2), 2021, pp.594-605.
- Publisher:
- Wiley
Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross‐sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES‐SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. Results: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. Conclusions: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed. (Edited publisher abstract)
As if living like others: an idealisation of life in group homes for people with intellectual disability
- Author:
- BJORNE Petra
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 45(4), 2020, pp.337-343.
- Publisher:
- Taylor and Francis
Background: People with Intellectual Disability (ID) in Sweden should be enabled to live like others. This life like others is realised in group homes that have little in common with the typical home. Method: A reading of Appiah’s As if is used to discuss how people with ID are supported in Sweden. Current national data are presented within the framework of idealisation, the use of (useful) untruths to navigate a complex context. Results: Small group homes should allow people with ID to communicate their preferences and exert real influence over how support is provided. Instead, times of budget austerity require the efficient use of resources in ever larger settings, where normalisation of deviance is prevalent. Conclusions: Although the stated aim is that people with ID live like others, the idealisation is rather that they live as if they live like others. This is generally not discussed, possibly due to de-differentiation. (Edited publisher abstract)
Supporting individuals with intellectual and developmental disability during the first 100 days of the COVID‐19 outbreak in the USA
- Authors:
- MILLS W. R., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 64(7), 2020, pp.489-496.
- Publisher:
- Wiley
Background: It is unknown how the novel Coronavirus SARS‐CoV‐2, the cause of the current acute respiratory illness COVID‐19 pandemic that has infected millions of people, affects people with intellectual and developmental disability (IDD). The aim of this study is to describe how individuals with IDD have been affected in the first 100 days of the COVID‐19 pandemic. Methods: Shortly after the first COVID‐19 case was reported in the USA, the organisation in this study, which provides continuous support for over 11 000 individuals with IDD, assembled an outbreak committee composed of senior leaders from across the health care organisation. The committee led the development and deployment of a comprehensive COVID‐19 prevention and suppression strategy, utilising current evidence‐based practice, while surveilling the global and local situation daily. This study implemented enhanced infection control procedures across 2400 homes, which were communicated to employees using multi‐faceted channels including an electronic resource library, mobile and web applications, paper postings in locations, live webinars and direct mail. Custom‐built software applications were used to track patient, client and employee cases and exposures, and this study leveraged current public health recommendations to identify cases and to suppress transmission, which included the use of personal protective equipment. A COVID‐19 case was defined as a positive nucleic acid test for SARS‐CoV‐2 RNA. Results: In the 100‐day period between 20 January 2020 and 30 April 2020, this study provided continuous support for 11 540 individuals with IDD. Sixty‐four per cent of the individuals were in residential, community settings, and 36% were in intermediate care facilities. The average age of the cohort was 46 ± 12 years, and 60% were male. One hundred twenty‐two individuals with IDD were placed in quarantine for exhibiting symptoms and signs of acute infection such as fever or cough. Sixty‐six individuals tested positive for SARS‐CoV‐2, and their average age was 50. The positive individuals were located in 30 different homes (1.3% of total) across 14 states. Fifteen homes have had single cases, and 15 have had more than one case. Fifteen COVID‐19‐positive individuals were hospitalised. As of 30 April, seven of the individuals hospitalised have been discharged back to home and are recovering. Five remain hospitalised, with three improving and two remaining in intensive care and on mechanical ventilation. There have been three deaths. This study found that among COVID‐19‐positive individuals with IDD, a higher number of chronic medical conditions and male sex were characteristics associated with a greater likelihood of hospitalisation. Conclusions: In the first 100 days of the COVID‐19 outbreak in the USA, this study observed that people with IDD living in congregate care settings can benefit from a coordinated approach to infection control, case identification and cohorting, as evidenced by the low relative case rate reported. Male individuals with higher numbers of chronic medical conditions were more likely to be hospitalised, while most younger, less chronically ill individuals recovered spontaneously at home. (Edited publisher abstract)
How do we prevent another Winterbourne? A literature review
- Author:
- WRIGHT Sally
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 7(6), 2013, pp.3-14.
- Publisher:
- Emerald
Purpose – The purpose of this paper is to focus on the precipitants of physical and psychological abuse of individuals with intellectual disabilities in order to understand why mistreatment continues to be prevalent. In particular, the importance of contributing factors were explored such as challenging behaviour and lack of staff training, in an attempt to prevent another “Winterbourne”. Design/methodology/approach – A literature search using the search terms “Intellectual disability”, “learning disability”, “abuse”, “challenging behaviour” and “residential” was conducted. Articles were included using the criteria: adults with intellectual disabilities, concentration on neglect and physical abuse, abuse by staff members and articles written within the last 15 years. Using these criteria, a total of 19 articles were isolated. Additional articles were located through reference to citation lists. In total, 31 relevant articles were identified. Findings – The majority of research agrees that a meaningful increase in risk of abuse does exist for individuals with intellectual disabilities. There is a lack of recent empirical evidence discussing the incidence of abuse, potential causes and the long-term impact of staff training in reducing the incidence of abuse. These gaps may be due to the subjective definition of abuse, the current “reactive” approach to abuse, the ability of perpetrators to hide mistreatment and difficulty in quantifying the difference that increased staff training has on performance. More research is required to adequately protect individuals with intellectual disabilities in the residential setting. Originality/value – The paper highlights gaps in the current literature and identifies potential areas that could be improved in order to reduce the prevalence of abuse in residential care. (Edited publisher abstract)
Transforming staff practice through active support
- Authors:
- RICHES Vivenne C., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(3), September 2011, pp.156-166.
- Publisher:
- Taylor and Francis
The active support model is being introduced in many residential and respite homes worldwide. It aims to increase the opportunities for the participation of people with intellectual disability (ID) in meaningful activity with appropriate assistance from staff. This article describes the development and delivery of an active support training pilot for staff in a large government organisation that supports people with ID in Australia. A train-the-trainer approach was used in which 5 apprentice trainers were trained to provide active support training to 65 staff associated with 6 group homes. These 5 trainers were then monitored to provide training to 54 staff in another 6 group homes. Staff evaluated their interactive training experiences by completing an anonymous questionnaire. In addition, pre and post outcome data were collected for a small number of service users from group homes, along with staff outcome data regarding residential working practices, group home management, and staffing practices. The findings show that the train-the-trainer model was an effective strategy for training large numbers of staff. The interactive training component was particularly effective and was associated with improvements in service user engagement in domestic tasks and decreased depression levels. Staff job satisfaction increased and significant improvements were recorded in residential working practices.
The impact on objective technology of life outcomes of assistive technology in residential services for people with learning disabilities
- Authors:
- PERRY Jonathan, BEYER Stephen
- Journal article citation:
- Journal of Assistive Technologies, 3(1), March 2009, pp.5-14.
- Publisher:
- Emerald
The UK government is committed to preventative technologies and increasingly they are being incorporated into residential services for people with learning disabilities. This paper describes an evaluation of a sample of settings in which various assistive technology (AT) devices have been installed following the assessment of individual residents' needs. The impact of this on residents' objective quality of life was assessed using a range of quantitative measures and through some qualitative questions. Despite some positive consequences of the AT being reported by staff in response to the qualitative items, there was no significant impact on any of the quantitative measures. In isolation, AT does not appear to be sufficient to significantly improve objective quality of life outcomes for people with learning disabilities in residential services. Equally, AT does not appear to reduce objective quality of life outcomes. The challenge to service providers is to ensure that the introduction of AT and any associated change to staffing levels or support procedures translates into improvements in residents' overall quality of life. To detect such improvements future research might have to broaden the range of quantitative methods used and supplement them with qualitative techniques.
Physical interventions for adults with intellectual disabilities: survey of use, policy, training and monitoring
- Authors:
- DEVAU Roy, McGILL Peter
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(2), March 2009, pp.145-151.
- Publisher:
- Wiley
Perceived problems around the use of physical intervention (PI) to manage challenging behaviour have led to UK initiatives to encourage policy development and accredited training. However, information on PI use and the impact of these initiatives remains limited. Adult residential services within an English region were sent a questionnaire regarding PI use, policy, staff training and monitoring/management. Physical intervention use was reported by 47% of the services. Of services using PI, 65% reported having a policy governing its use and 79% reported providing staff training. Where restrictive PI was used, comparable figures were 82% for policy and 84% for training. PI use was reported to be monitored in some way by 94% of services. Opinions offered supported the reduction of PI use. Physical intervention use is widespread. National guidance on policy and training is widely followed though unimplemented by a minority. The time may be right to more explicitly aim for a reduction in PI use within services.
Quality of life for adults with learning disabilites in private residential care: monitoring aspects of life experiences over time
- Author:
- SKEA Derek
- Journal article citation:
- Mental Health and Learning Disabilities Research and Practice, 5(2), October 2008, pp.253-265.
- Publisher:
- South West Yorkshire Mental Health NHS Trust and University of Huddersfield
The quality of life (QoL) of a sample of 56 adults with learning disabilities was studied longitudinally over 18 months while they lived in community-based private residential homes. Six homes participated in the study. The Life Experiences Checklist (L.E.C) which considers a person’s home environment, leisure, freedom, relationships and opportunities, was used as a measure of QoL. The L.E.C was administered to participants on three occasions at approximately six-monthly intervals. Simple feedback reports giving overall results for the L.E.C (and other measures) were produced for each home at the end of each of these three phases. The L.E.C. results showed that overall participants’ QoL changed significantly over the course of the study, with assessed QoL peaking at phase two after homes had received the first feedback report, and decreasing to near phase one levels by the end of the study. People living in one of the homes, however, sustained the observed improvement in QoL over time. Comparisons were drawn between the L.E.C results for the sample and the general population living in the same area. The sample experienced a lower QoL than the general population regarding Relationships, Opportunities and Freedom L.E.C. sub-scales and had a comparable QoL regarding the Home sub-scale, and higher scores with respect to the Leisure sub-scale. Results are discussed in terms of subjective and objective QoL measurement as an indicator of quality of service provision and in particular the effects of feedback and monitoring per se. It is apparent that in the absence of intervention no sustained improvements in QoL are seen in this sample.
Learning disabilities: barriers to choice in residential services
- Authors:
- WALTON Chris, FINLAY Mick, SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Journal article citation:
- Community Care, 31.7.08, 2008, pp.30-31.
- Publisher:
- Reed Business Information
A recent study has revealed the extent of the obstacles to choice and control in residential settings for people with learning disabilities. In the first part of this article the first two authors highlight the key messages for practice. In the second part of the article the Social Care Institute for Excellence provides an overview of other research and resources on residential services and learning disabilities.