Journal of applied research in intellectual disabilities : JARID最新文献

Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.

Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.

Results: There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.

Conclusion: The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.

Background: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood.

Method: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals.

Results: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die.

Conclusions: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.

Background: This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death.

Methods: Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments.

Results: We evaluated comprehensibility, internal consistency, inter-rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events.

Conclusions: People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.

Background: Intensive interaction (II) is a communication approach useful for working with people with severe intellectual disabilities. Health and social care providers offer II training courses to paid carers working in local services with the goal of improving social communication for their clients.

Materials and methods: Eight paid carers who had been trained in II were interviewed 2-3 years after training, to explore how their practice had changed, and whether any changes were sustainable. Interviews were analysed using interpretative phenomenological analysis.

Results: Analysis revealed a master theme of emotional and practical endurance, with empowerment, better understanding and perceived barriers to implementation comprising subthemes.

Conclusions: Despite actual and perceived barriers to the enduring use of II, all participants spoke positively of the approach and were continuing to use II in practice.

Background: No standardized tool is used in Canada for comprehensive health assessments of adults with intellectual disabilities. This study was conducted to determine the feasibility of implementing the Comprehensive Health Assessment Program (CHAP) in Manitoba, Canada.

Method: This was a qualitative study using a purposive sample of physicians, nurse practitioners, support workers and families. Data were collected through individual interviews and focus groups and were analysed using content analysis.

Results: Use of the CHAP was perceived as beneficial for persons with intellectual disabilities. Improved continuity of care was of the reported benefits. Six barriers for the future implementation of the CHAP were identified including the time required to complete the CHAP, and the perceived lack of physicians' willingness to do comprehensive assessments.

Conclusion: The future implementation of the CHAP was strongly supported. For its successful implementation, training of healthcare professionals and support staff and change in regulations and policies were recommended.

Background: Parents with intellectual disabilities (IDs) are often socially isolated and need support.

Materials and methods: This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism.

Results: Being a part of the parent group provided parents with a social network, which had the potential to be supportive in everyday life. The social workers in the group were seen as allies, and parents appeared to trust them and felt they could seek advice and tell them about their personal problems. The parents sometimes asked for advice about how to handle contacts with other professionals in their everyday life. The parents valued the social contact with the other parents.

Conclusions: The group provided the parents with the opportunity to meet both other parents and two social workers. The group gave a greater number of social relations, adding to the parents' social capital and helping to reduce social isolation.

Background: Front-line managers play an important role in managing the performance of staff working in services for people with intellectual disability, but little is known about the practices they prefer to use to improve staff performance and whether these align with what research has shown to be effective.

Method: This study comprised two phases. First, the present authors tested the validity and reliability of a short questionnaire designed to evaluate managers' preferences for performance improvement practices. Then, the present authors collected and analysed responses from 175 managers working in disability services in Queensland, Australia.

Results: The questionnaire demonstrated good content validity, concurrent validity and test-retest reliability. The participants believed strategies related to changing employee individual characteristics to be more effective than strategies aimed at improving environmental factors.

Conclusions: This study provides important considerations regarding the professional development needs of front-line managers working in organizations that provide services to people with intellectual disability.

Background: Individuals with autism spectrum disorder (ASD) have been characterized as having deficits in social communication and empathy which present difficulties in the areas of social reciprocity, sharing of emotions and developing and maintaining relationships. This study explores the associations between vocabulary, executive function skills and empathy in individuals with ASD.

Method: A survey study with a purposive sample was used. Twenty adolescents with ASD completed receptive and expressive vocabulary assessments while their parent and teacher completed executive function and empathy scales.

Results: Results indicated that higher vocabulary and executive function skills were associated with higher empathy. Nonparametric analyses also showed that executive function mediated the association between empathy and vocabulary. Differences between parent and teacher responses were also explored.

Conclusions: The results suggest that targeting vocabulary and executive function skills prior to, or in conjunction with, social skills in educational and therapeutic settings may prove beneficial.

Background: This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research.

Methods: The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants' satisfaction with the programme.

Results: The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research.

Conclusions: The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities.