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Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes
- Authors:
- CLAES Claudia, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(3), September 2012, pp.159-165.
- Publisher:
- Wiley
Assessing the quality of life (QoL) of a person with intellectual disabilities is often complicated by their limited verbal abilities. Assessment processes often have to rely on informants such as a family member or support worker. This article reports on 2 studies which aimed to evaluate the impact of self-report vs. proxy ratings in the assessment of QoL scores. Study 1 aimed to evaluate the consistency between self-report and direct observation data by support staff. The participants were 161 individuals with mild or moderate levels of intellectual functioning. Study 2 aimed to evaluate the difference between self-report and proxy ratings using direct observation interviews with family and support staff. The participants were 42 individuals with a mild level of intellectual disability. Both studies involved the use of the self-report and the direct observation forms of the Personal Outcomes Scale. Study 1 found significant differences between the 2 respondent groups in 3 QoL domains and an acceptable level of internal consistency for both self-report and direct observation strategies. Study 2 found some differences between client and staff ratings but no significant differences between client and family ratings. The article concludes with noting the need for methodological pluralism in QoL assessment, the importance of self-report by persons with intellectual disability, and the need to develop better strategies to evaluate QoL outcomes for those individuals who cannot respond for themselves.
Support characteristics associated with the quality of life of people with profound intellectual and multiple disabilities; the perspective of parents and direct support staff
- Authors:
- PETRY Katja, MAES Bea, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 4(2), June 2007, pp.104-110.
- Publisher:
- Wiley
The authors examined which support characteristics are associated with the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). The authors invited parents and direct support staff of people with PIMD to adopt the perspective of their child or the person with PIMD for whom they care. Some 76 parents and direct support staff of people with PIMD were interviewed, and to obtain data, transcripts were analyzed in-depth. The respondents mentioned: (1) characteristics with regard to the structure of the setting (physical environment, staff ratio, staff turnover, group size, and group composition); (2) characteristics with regard to the internal organization of the support (partnership, teamwork, interdisciplinary, and support planning); and (3) characteristics with regard to the support staff (experience, sensitive responsiveness, commitment and motivation, physical strength, knowledge and skills, and self-reflection). The respondents considered structural as well as operating features of the support setting to be important for the QOL of people with PIMD. The authors conclude that their main emphasis, however, was on the central role of direct support staff in supporting people with PIMD.
First steps toward positive behavior support in the Netherlands: a pilot study exploring the effectiveness of a training for staff
- Authors:
- KLAVER Marian, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 17(3), 2020, pp.188-194.
- Publisher:
- Wiley
Despite the effectiveness of positive behavior support (PBS) in reducing challenging behaviors, the availability of PBS for individuals with intellectual disabilities is limited in many countries including the Netherlands. Training care staff supporting individuals with intellectual disabilities in PBS may be a way to improve the provision of PBS. The researchers aimed to explore the preliminary effectiveness of a PBS training for staff in reducing challenging behaviors of individuals with intellectual disabilities. Using a one group, double pretest–posttest design, 24 staff members involved in the care of 11 adult individuals with intellectual disabilities and challenging behaviors participated. The researchers assessed changes in challenging behaviors and quality of life of the individuals, in staff self‐efficacy in dealing with challenging behaviors, and in the use of restraints, using staff rated questionnaires, structured interviews, and medical files. At posttest, the researchers found significant reductions in challenging behaviors, improved quality of life, and increased staff self‐efficacy, but no changes in the use of restraints. In contrast, no significant changes on any of the measures appeared between the two pretests. These findings suggest that a staff training in PBS may be effective for reducing challenging behaviors in individuals with intellectual disabilities. (Edited publisher abstract)
Psychotropic medications and adults with intellectual disabilities: care staff perspectives
- Author:
- LALOR John
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 7(6), 2013, pp.333-345.
- Publisher:
- Emerald
Adults with intellectual disabilities are the most psychotropically medicated population of all. Non-medically trained care staff with whom these individuals spend the majority of their time are generally poorly trained in issues surrounding psychotropic medication. Much of the research related to the experiences of staff working in intellectual disability services has focused on medically trained professionals, and clients, and has been of a quantitative nature. Very little attention has been paid to care staff, their experiences, and through a qualitative approach. In this study semi-structured interviews were used to explore the experiences of, and impact on, care staff in relation to psychotropic medication usage in adults with intellectual disabilities living in long-term residential care. Eight full-time, experienced care staff from service in Dublin were interviewed and data were analysed using interpretative phenomenological analysis. The paper demonstrates the concerns for staff, such as the negative impact upon client quality-of-life, the ethical implications of the medications’ regime, and the relationship perceived by care staff with the organisation management; and a significant lack of training. The limited field of previous research demographically comparable to the present paper was analysed for findings. (Edited publisher abstract)
Communication supports in residential services for people with an intellectual disability
- Authors:
- DALTON Caroline, SWEENEY John
- Journal article citation:
- British Journal of Learning Disabilities, 41(1), 2013, pp.22-30.
- Publisher:
- Wiley
This study explores front-line support staff knowledge and perceptions of how people with intellectual disability residing in residential services are supported to communicate effectively. It aimed to discover whether staff had the knowledge and skills to communicate effectively with service users and means by which front-line staff ensured the rights of service users to communicate were upheld. Participants (n = 138) drawn from a voluntary organisation in Southern Ireland completed a self-report questionnaire. Participants were made up of staff nurses, care staff and some nurse managers. Staff worked in large residential settings, group home settings, day community hostels, with the smallest number working in semi-independent settings. 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. (Edited publisher abstract)
The effect of active support interactive training on the daily lives of adults with an intellectual disability
- Authors:
- TOTSIKA Vasiliki, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(2), March 2010, pp.112-121.
- Publisher:
- Wiley
Interactive training is one of the two staff training components of the active support model, a person-focused model that aims to improve the quality of life of people with an intellectual disability by increasing participation in all types of activities of daily life. This study investigates how effective interactive training is when offered to staff detached from the active support workshops, the other training component. The authors, exploring the effects of interactive training on resident activity engagement, challenging behaviours and staff assistance, engaged 21adults with an intellectual disability living in residential settings. Observations and ratings of staff and resident behaviours were obtained before and after the training sessions, and at 6 months follow-up. Overall analyses indicated a short-lived improvement in quality of staff support but, in general, there was an overall lack of change in staff behaviours or participants challenging behaviours. However, subgroup analyses indicated that there was a significant improvement in engagement immediately after interactive training for a distinct subgroup of participants - those who had significantly higher aggressive behaviour ratings at the beginning of the study. Findings support the combination of the training components for improvements in the quality of life for people with intellectual disability, especially as intervention for people with the most difficult challenging behaviours.
Developing measures of job performance for support staff in housing services for people with intellectual disabilities
- Authors:
- HATTON Chris, WIGHAM Sarah, CRAIG Jaime
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(1), January 2009, pp.54-64.
- Publisher:
- Wiley
A worker-oriented job analysis method was used to develop four short job performance measures for direct housing support staff, from the perspective of people with intellectual disabilities (n = 82), family members (n = 38), support staff (n = 122) and service managers (n = 115). All four job performance measures showed adequate internal and test–retest reliability and showed very few associations with staff and resident characteristics, although there were no associations between the job performance measures. The service user and manager-rated job performance measures showed the widest range of associations with aspects of staff well-being, service quality and service user choice and satisfaction with life, and show the most promise as short, practical measures of the job performance of direct housing support workers. These methods of developing job performance measures show promise, and further investigation of user-defined staff competencies is warranted.
Better lives: an evaluation of personalisation in Southwark
- Authors:
- ELLIS Roger, SINES David, HOGARD Elaine
- Publisher:
- Centre for Welfare Reform
- Publication year:
- 2014
- Pagination:
- 84
- Place of publication:
- Sheffield
An evaluation of the Personalisation Programme jointly developed by Southwark Adults Services and the learning disability provider Choice Support. The programme involved using Individual Service Funds (ISF) and working with individuals to get the best value for money. This evaluation focuses on outcomes, process and stakeholder perspectives. Data were gathered from an audit of the quality of life of 70 individuals and from questionnaire surveys of the views of support staff, social services staff, and parents, next of kin or friends. This quantitative data was supplemented with five individual case studies. The report summarise the challenges facing the implementation of a personalisation programme for people with learning disabilities, also identifying elements of best practice; looks the way in which Choice Support has implemented their Personalisation Programme; and then reports on the evaluation in detail. The evaluation data includes the results of the Quality of Life Audit; case studies of individuals, details of savings, the results of the surveys of staff, relatives and friends, and social work staff. The results detail the savings achieved; improvements in outcomes and citizenship; and benefits for staff and social workers. The majority of the 70 individuals in the evaluation experienced an improved quality of life with the introduction of ISFs with PCPs, however around 12 individuals did not. A minority of negative views of the Programme were also received from both staff and relatives. Recommendations including rolling out the Choice Support Personalisation Programme to other commissioners and to follow up the unfavourable audits and negative views of staff and relatives. An Action Plan from Choice support developed from the recommendations is included in the Appendices. The evaluation was undertaken by the Social Health Evaluation Unit. (Edited publisher abstract)