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An ethical inquiry of support workers' experiences related to sexuality in the context of intellectual disabilities in Quebec, Canada
- Authors:
- PARISEAU-LEGAULT Pierre, et al
- Journal article citation:
- British Journal of Learning Disabilities, 47(2), 2019, pp.116-125.
- Publisher:
- Wiley
Background: In the last decade, the evolution of support workers' attitudes towards the affective and sexual lives of people with intellectual disabilities has been described as increasingly positive. However, restrictive attitudes targeting affective and sexual life are still documented. Material and methods: This study aimed to explore the ethical implications of support workers' experiences concerning sexuality in the context of intellectual disabilities in everyday practice. This inquiry was guided by the following research questions: (a) In the context of intellectual disabilities, what meanings do service users' sexuality have for support workers? (b) How are those meanings translated into practice? Inspired by critical phenomenology, in‐depth individual interviews with support workers were conducted and analysed. Results: One superordinate theme (Negotiating Interventions) and three themes were identified: “Crossing Organizational Borders,” “A Duty to Act Despite Uncertainty” and “Navigating Competing and Contradictory Discourses.” Conclusion: Support workers' experiences related to sexuality in the context of intellectual disabilities are influenced by how they define their role in a clinical context. This role is influenced by how affective and sexual life is included in practices, local policies and interdisciplinary work. Despite positive attitudinal changes, sexuality is still regarded as a sensitive topic capable of endangering both service users and support workers. (Publisher abstract)
What's in a name? Looking at the labelling debate
- Authors:
- GARDNER Damian, HOPKINSON Peter
- Journal article citation:
- Changes an International Journal of Psychology and Psychotherapy, 14(2), June 1996, pp.135-141.
Discussion and debate continue on the use of terms such as "mental handicap" which has declined in popularity; people still do not know which term to use. This article examines some of the reasons why controversy and confusion has occurred, and some of the problems of the alternative terms currently proposed.
An investigation of students' with mild learning disabilities reactions to participating in sexuality research
- Authors:
- THOMAS Gail, KROESE Biza Stenfert
- Journal article citation:
- British Journal of Learning Disabilities, 33(3), September 2005, pp.113-119.
- Publisher:
- Wiley
This study investigates 35 students' with mild learning disabilities reactions to participating in a research project exploring their sexual knowledge, attitudes and behaviour. Students completed an informed consent procedure prior to their participation in the sexuality research and all were interviewed using a confidential interview procedure. During the research interviews, each student's reaction to participation was observed and recorded by their interviewer. Following the interviews, each student's reaction to participation was observed and recorded by their college tutor. Researchers observed that although some students were embarrassed discussing certain sexual topics, none chose to stop their interviews when invited. Ten students requested additional information from their interviewers about the issues discussed. Tutors reported that no students appeared anxious or distressed following their interviews and that no inappropriate sexualized behaviour, or talk, were observed. Tutors also reported that several students appeared to have been positively affected by their participation. No tutors expressed concern about their students participating in similar research in the future. It is concluded that a number of methodological and participant factors may have accounted for the positive outcomes reported. The implications of these findings and recommendations for future research are discussed.
Work preferences of students over a three year degree course in intellectual disability studies
- Author:
- JENKINSON Josephine C.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 23(3), September 1998, pp.255-261.
- Publisher:
- Taylor and Francis
The work preferences of students choosing a professional career in intellectual disability services are particularly important when regular hours, isolation from the more prestigious mainstream of human services, and the nature of the client population are likely to create demands on graduates which are not faced by other human service workers. This study investigated the work preferences of Australian students on entry to a degree course in intellectual disability studies, and for a smaller sample on completion of the course three years later, using a work preference scale.
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)
Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities
- Authors:
- DUNN M. C., CLARE I.C.H., HOLLAND A. J.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(2), February 2010, pp.144-160.
- Publisher:
- Wiley
In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the health and personal welfare of adults who lack the capacity to make one or more autonomous decisions. Substitute decisions must be made in the 'best interests' of the person lacking capacity. This study explored how statutory legal regulation under the MCA interfaces with the practical and ethical dynamics of care and support in the context of community-based support of adults with intellectual disabilities living in residential care homes in England. The data are drawn from 21 qualitative interviews with support workers in this setting and observations of care practices. In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live 'a life like ours'. They described how they draw on their own values and life experiences to shape the substitute decisions they make on behalf of residents. Support workers' accounts revealed discrepancies between the legal regulation of substitute decision-making and the ways that they made sense of their work. It is suggested that such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of 'good' care.
Sterilisation drugs which suppress sexual drive, and young men who have intellectual disability
- Authors:
- CARLSON Glenys, TAYLOR Miriam, WILSON Jill
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 25(2), June 2000, pp.91-104.
- Publisher:
- Taylor and Francis
In 1992, the High Court of Australia ruled that all procedures involving the sterilisation of children (other than to treat some malfunction or disease) should be referred to the Family Court of Australia. There has been recent public debate about the sterilisation of young women who have intellectual disability. However, there appears to be very little known about the sterilisation of young men who have intellectual disability. This paper reports on 51 responses to a request for information about sterilisation, drugs and young men who have intellectual disability in Australia. Several issues, including the influence of attitudes and the need for informed decision making are raised.
Inclusion and autonomy for people with multiple and complex learning difficulties
- Authors:
- MERRILL Kirsten, BOYCE Peter
- Journal article citation:
- Applied Community Studies, 3(1), 1996, pp.77-91.
- Publisher:
- Whiting and Birch
For people such as those with severe learning difficulties who have had little or no involvement in decision making over their futures, learning to make decisions inevitably requires the time and resources afforded them by more able others. The Advocacy Movement has been hugely influential, though there is still a need for change in societal attitudes. This paper attempts to address issues relating to successful integration such as the availability of resources, ethical implications and the tension that can arise between the service users and professionals.
Can we help you?
- Author:
- VALIOS Natalie
- Journal article citation:
- Community Care, 27.7.00, 2000, pp.22-23.
- Publisher:
- Reed Business Information
Some clients refuse to accept help. Yet social services are still blamed when a crisis results. The author unpicks some of the legal, ethical and practice issues.
Empowered or discouraged: a study of people with learning disabilities and their experience of engaging in intimate relationships
- Authors:
- WHITE Emily, BARNITT Rosemary
- Journal article citation:
- British Journal of Occupational Therapy, 63(6), June 2000, pp.270-276.
- Publisher:
- Sage
Vulnerable people constitute the majority of referrals to occupational therapy services, due to age and social, psychological and economic circumstances. A collaborative study was carried out on eight adults with learning disabilities who lived in a community residential home. Interviews were completed which dealt with aspects of intimate relationships. The findings showed that the people interviewed had a generally positive experience of such relationships. However, while the attitudes of staff and family towards intimate relationships were mostly empowering, some negative views still existed. The results have implications for occupational therapists working with people with learning disabilities.