Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 14
Attitudes of research ethics committee members toward individuals with intellectual disabilities: the need for more research
- Authors:
- LAI Roxanne, ELLIOTT Deborah, OUELLETTE-KUNTZ Hélène
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(2), June 2006, pp.114-118.
- Publisher:
- Wiley
Select research areas affecting individuals with intellectual disabilities (ID) are understudied, resulting in their often being routinely excluded from drug trials and other medically based research. Many factors contributing to this exclusion have been identified, but little has been written about the effects of research ethics committees on inhibiting ID research. By exploring the role of ethics committees in research, and reviewing the ethical guidelines and other factors that direct their decisions, this Canadian article argues that committee members' attitudes toward ID often affect their response to proposals involving this group of individuals. The authors note that in many countries, research ethics guidelines provide little direction on how to weigh conflicting ethical duties toward vulnerable individuals. As a result, committee members often adopt unsystematic approaches toward ethical dilemmas, creating an environment where their attitudes can have a disproportionate effect on their decisions. The authors suggest that the attitudes of research ethics committee members toward individuals with ID must be studied in further detail if we are to understand and address the exclusion of individuals with ID from medical research.
A long overdue review
- Author:
- CHADDA Dolly
- Journal article citation:
- Community Care, 2.11.00, 2000, p.12.
- Publisher:
- Reed Business Information
Next year there will be a new strategy for learning difficulties services. More resources, changed attitudes and a reorganised service are all needed.
Therapy expectations: preliminary exploration and measurement in adults with intellectual disabilities
- Authors:
- KILBANE Amy L., JAHODA Andrew
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(6), November 2011, pp.528-542.
- Publisher:
- Wiley
This study began with the hypothesis that certain characteristics of people with intellectual disabilities and their pathway to psychological interventions may make their expectations of therapy and motivation to attend sessions particularly significant influences on the therapy process and outcomes. This preliminary exploration measured therapy (CBT) expectancy in adults with intellectual disabilities through the development and psychometric evaluation of the therapy expectation measure (TEAM). Six adults with intellectual disabilities took part in semi-structured interviews about therapy expectancy and motivation to identify TEAM items. A further 22 participants living in the Glasgow area piloted the measure. This study confirmed that the TEAM has acceptable test–retest reliability and internal consistency. There was a strong positive relationship with a measure of general self-efficacy. Client expectations of therapy were largely positive and congruent with therapy as a goal-oriented process in which they would be an active participant. However, a number of individuals were unclear about the reason for referral and felt a low level of involvement. Client and carer perceptions of referral were significantly different. The authors conclude that the TEAM instrument may help clinicians to identify potential barriers to engagement in therapy and find ways of enhancing the therapeutic experience of adults with an intellectual disability. Further evaluation of the TEAM with larger samples is required.
Stakeholders' views on measuring outcomes for people with learning disabilities
- Authors:
- YOUNG Anita F., CHESSON Rosemary A.
- Journal article citation:
- Health and Social Care in the Community, 14(1), January 2006, pp.17-25.
- Publisher:
- Wiley
This study aimed to discover views of managers and commissioners of services for people with learning disabilities in Scotland regarding (a) current approaches to service evaluation (as an indication of what is to be measured) and (b) healthcare outcome measurement. A postal questionnaire was used to survey 94 stakeholders from the NHS, Local Authorities, and non-statutory organisations across Scotland. Respondents' views were sought on current approaches to service evaluation within learning disabilities; outcome measurement; appropriateness of specified methods of measuring health outcomes; desired future methods of outcome measurement within learning disabilities; and service user involvement in care. A 77% (73/94) response rate to the questionnaire was achieved. Different methods of service evaluation were used by different stakeholders. Staff appraisal was the most frequently identified method (used by 85% of respondents). Specific outcome measures were used by 32% of respondents although there were differences of opinion as to what constitutes specific outcome measures. Overall there was strong support for goal-setting and reviewing (83%) and individualised outcome measures (75%) as appropriate methods for use with people with learning disabilities. The hypothetical question asking what outcome measures should be introduced for this client group had by far the lowest response rate (51/73). The overwhelming majority of all respondents, 68 (92%), reported user involvement in their service. Staff ambivalence to outcome measurement was evident in the research and respondents highlighted the complexity and multidimensional nature of outcomes for this service user group. Managers recognised that outcome measurement was expected but were uncertain how to go about it.
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.
"...their opinions mean something": care staff's attitudes to health research involving people with intellectual disabilities
- Authors:
- HALL Natalie, DURAND Marie-Anne, MENGONI Silvana E.
- Journal article citation:
- British Journal of Learning Disabilities, 45(3), 2017, pp.198-207.
- Publisher:
- Wiley
Background: Despite experiencing health inequalities, people with intellectual disabilities are under-represented in health research. Previous research has identified barriers but has typically focused on under-recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual disabilities, identify barriers to conducting such research and consider solutions to those barriers. Materials and Methods: Eight members of care sector staff took part in a focus group or telephone interview, to explore their views on health research involving people with intellectual disabilities. The transcriptions were analysed using thematic analysis; 50% were double-coded, and the emerging themes were agreed by three researchers. Results: Three themes were identified: perceptions of research; barriers to conducting research; solutions to maximise recruitment and project success. Benefits to research were identified, but there were concerns that the time and effort required may outweigh these benefits. Barriers were identified including organisational policy and following the Mental Capacity Act 2005. There was some indication that such barriers may differ according to the severity of intellectual disabilities and the type of care setting. Solutions were proposed that involved greater collaboration between researchers and the care sector, and a more flexible approach to research. Conclusions: Care staff are largely supportive of research that is appropriate and relevant to their service users. However, there is a need for clear communication from researchers and flexible recruitment and data collection strategies. This is likely to be facilitated by closer collaboration between researchers and the social care sector. (Publisher abstract)
Involving people with profound and multiple learning disabilities in social work education: building inclusive practice
- Authors:
- WARD Nicki, et al
- Journal article citation:
- Social Work Education (The International Journal), 35(8), 2016, pp.918-932.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Service user and carer engagement is a foundational requirement of social work education. Despite this, questions remain about how diverse experiences are represented and who might be excluded from involvement. This paper focusses on one group of people who it is suggested are excluded from involvement, people with profound and multiple learning disabilities. Evidence is presented which demonstrates the extent to which this group have been marginalised and excluded from processes of involvement. The paper then provides a case study of one universities’ experience of developing work in this area, when a man with profound and multiple learning disabilities was commissioned to design and deliver specialist teaching for a group of qualifying social work students. The authors argue that the main barrier to inclusive involvement for people with profound and multiple learning disabilities is the attitudes and assumption of others about what they are capable of. How involvement in social work education helps to address these barriers by challenging the assumptions of students, the academy and society more broadly is demonstrated. (Edited publisher abstract)
‘So often they do not get recruited’: exploring service user and staff perspectives on participation in learning disability research and the barriers that inhibit it
- Authors:
- CROOK Bradley, et al
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, pp.130-137.
- Publisher:
- Wiley
The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning disabilities participated in a focus group (n = 5), and clinicians completed a questionnaire (n = 34), to explore each groups’ experience of research, and identify barriers that may prevent people with learning disabilities from participating. People with learning disabilities engaging in research was seen as essential to increase knowledge of learning disabilities, as well as promote development of appropriate services. Barriers to participation included ability, ethical considerations, practicalities and restriction by ‘gatekeepers’. Clinicians also felt a lack of resources and support prevented them from fulfilling their roles within research. Implications and recommendations are discussed. (Publisher abstract)
You’re not to dance with the girls: oral history, changing perception and practice
- Author:
- MEE Steve
- Journal article citation:
- Journal of Intellectual Disabilities, 14(1), March 2010, pp.33-42.
- Publisher:
- Sage
- Place of publication:
- London
This article discusses the learning disability nursing course at the University of Cumbria, which features people with a learning disability presenting an oral history of their past in a long-stay institution – stories which frequently portray very negative life experiences. The authors describes how student feedback has suggested that the resulting learning is profound, possibly transformative and offering a different type of learning to a traditional lesson. Students report that they experience different and more positive perceptions of people with a learning disability, and they have a new respect for people who have survived these experiences. The author suggests that this change of perception may be due to observing people with a learning disability in positive roles such as storyteller, teacher and carer. The students reported that in subsequent placements their professional practice changed as a result of these insights. These changes include being more outspoken against bad practice and being able to listen more effectively.
Enabling young people with a learning disability to make choices at a time of transition
- Authors:
- CAMERON Lois, MURPHY Joan
- Journal article citation:
- British Journal of Learning Disabilities, 30(3), September 2002, pp.105-112.
- Publisher:
- Wiley
Transition times, such as leaving school and moving to and from college or day centre, are highly significant for young people with a learning disability. Describes a pilot study which examines whether Talking Mats, a light-technology augmentative framework, could be used successfully with young adults with a learning and communication disability. The participants were able to indicate their likes and dislikes, and to express views about the choices available to them. Some expressed opinions not previously known to their carers, and some raised sensitive topics, such as where they wanted to live and who they wished to spend time with. The 'mats' allowed differences of opinion to be explored and were used as a vehicle for further, deeper discussion. Talking Mats has proved to be a powerful tool in allowing young people with a learning disability to communicate their views.