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Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?
- Authors:
- STANCLIFFE Roger J., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(2), 2021, pp.659-669.
- Publisher:
- Wiley
Background: Caregivers often avoid involving people with intellectual disability in end‐of‐life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. Methods: Pre and post a 6‐month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End‐of‐life ‘encounters’ (conversations/activities about end of life) were monitored, including comfort ratings. Results: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre–post change in depression or fear of death. Anxiety improved significantly. Conclusions: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant‐initiated encounters showed participants wanted to talk about end of life. (Edited publisher abstract)
I-CAN: the classification and prediction of support needs
- Authors:
- ARNOLD Samuel R.C., RICHES Vivienne Catherine, STANCLIFFE Roger J.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(2), 2014, pp.97-111.
- Publisher:
- Wiley
Background: Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson et al. 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. Method: A study is presented comparing scores on the ICF (WHO, 2001) based I-CAN v4.2 support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. Results: Good internal consistency (range 0.73–0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found. Conclusions: Further advances in our understanding and measurement of support needs could change the way disability is assessed, described and classified. (Edited publisher abstract)
The co-worker training model: outcomes of an open employment pilot project
- Authors:
- FARRIS Bryan, STANCLIFFE Roger J.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 26(2), June 2001, pp.143-159.
- Publisher:
- Taylor and Francis
Evaluates the viability of trained co-workers providing direct job training and support to employees with a disability in open employment. Selected staff from 11 KFC restaurants in Australia attended a 2 day co-worker training course. Following training they placed a modestly but significantly higher value on persons with a disability in the workplace than previously. Subsequently, an individual with a disability was employed in each of 10 KFC restaurants and received job training and support from a co-worker trainer. Employment outcomes for consumers with co-worker support were as good as for a comparison group who worker in similar jobs at KFC restaurants with job coach support. Comparison group members received substantially mores support hours from job coaches. Consumers with co-worker support experienced high levels of involvement with co-workers. Concludes that the co-worker training model may provide a viable, cost-effective alternative to the traditional place and train model.
The Choice Questionnaire: a scale to assess choices exercised by adults with intellectual disability
- Authors:
- STANCLIFFE Roger J., PARMENTER Trevor R.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 24(2), June 1999, pp.107-132.
- Publisher:
- Taylor and Francis
This article presents information on the development and evaluation of the Choice Questionnaire. The scale can be administered by interviewing the consumer or may be completed by a knowledgeable proxy. Used in either of these ways, the Choice Questionnaire was found to have very satisfactory reliability and validity. Its use as a research and evaluation tool is discussed.
An evaluation of employment outcomes achieved by transition to work service providers in Sydney, Australia
- Authors:
- XU Tianxi, STANCLIFFE Roger J.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 44(1), 2019, pp.51-63.
- Publisher:
- Taylor and Francis
Background: Very few studies have evaluated the performance of transition to work (TTW) service providers after the TTW program was implemented in New South Wales, Australia since 2005. This paper examines employment outcomes achieved by 35 TTW service providers in Sydney. Method: Descriptive statistics and chi-square were used to analyse the TTW outcome data. Results: We found that (a) there was a constant growth in the number of TTW program entrants and an overall increase in the employment rate of TTW clients; (b) many TTW service providers in Sydney served fewer than four clients annually on average; and (c) huge differences were evident in the employment outcome performance of individual TTW service providers. Conclusion: The TTW programme in Sydney allowed more school leavers to achieve employment. However, further research is needed to examine the associations between TTW program features and different employment outcomes to build an optimal TTW program. (Edited publisher abstract)
The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death
- Authors:
- McMAUGH Pippa J., WIESE Michele Y., STANCLIFFE Roger J.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 42(3), 2017, pp.285-294.
- Publisher:
- Taylor and Francis
Background: People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death. Method: Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings. Results: Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences. Conclusions: The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death. (Publisher abstract)
Australian implementation and evaluation of active support
- Authors:
- STANCLIFFE Roger J., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 20(3), May 2007, pp.211-227.
- Publisher:
- Wiley
In this article the implementation and evaluation of Active Support in Australia is reported, the first such formal evaluation outside the UK. Residents and staff of five group homes participated. Active Support was introduced by training staff in one home at a time. Effectiveness was assessed using direct observation of resident engagement in activity and of staff help, as well as written assessments of resident outcomes. Staff help and resident engagement increased in four of five group homes. There was significantly greater participation in a wider variety of domestic activities, as well as more frequent and varied community participation. Change in resident engagement was positively related to change in staff help, but not related to residents’ level of adaptive behaviour. Most of the findings were consistent with earlier UK studies. There was evidence of the successful transfer of Active Support training skills to an Australian training team. Nonsignificant trends towards reduced depression and increased adaptive behaviour warrant further investigation.
Growth in residential services in Australia and the United States: 1997–2002
- Authors:
- STANCLIFFE Roger J., LAKIN K. Charlie, PROUTY Robert W.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 30(3), September 2005, pp.181-184.
- Publisher:
- Taylor and Francis
This article looks at the growth in residential services in Australia and the United States for people with intellectual disability as it related to national population growth. It aims to identify the extent of real growth in residential services by comparing annual changes in service provision with growth of the national population in Australia and the United States in 1997.
Planning and action
- Authors:
- EMERSON Eric, STANCLIFFE Roger J.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 17(1), March 2004, pp.23-26.
- Publisher:
- Wiley
Raises a a number of concerns about the possible impact of the systematic introduction of person-centred planning (PCP) across services for people with intellectual disabilities in the UK. The authors foresee a danger that system-wide adoption of PCP will be characterised over zealous 'selling' of the purported benefits without sufficient attention to the difficulties and without the necessary changes to system architecture to ensure that those involved in PCP have the authority or resources to achieve the plan's goals. If so, PCP will become another fad, and service users, and their families will become even more discouraged, disheartened and alienated by a system characterised by rhetoric rather than meaningful action. Where the authors differ, is in the interpretation of the existing evidence regarding the impact of individual planning systems in general and, perhaps, in the way forward.
Provision of residential services for people with intellectual disability in Australia: an international comparison
- Author:
- STANCLIFFE Roger J.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(2), June 2002, pp.117-124.
- Publisher:
- Taylor and Francis
National data on the provision of services to Australians with a disability under the Commonwealth/State Disability Agreement (CSDA) have been gathered since 1995 using the Minimum Data Set (MDS). This paper analyses MDS data on residential services for people with intellectual disability between 1995 and 1999. Trends include: a steady growth in the number of recipients of CSDA-funded residential services; a slow decline in the proportion of people housed in large residentials; a gradual increase in the number of people served in community group homes; and a more rapid growth in outreach/drop-in services such as semi-independent living. Makes comparisons with the USA and United Kingdom and concludes that Australia needs to increase the provision of residential services to people with intellectual disability.