Search results for ‘Subject term:"learning disabilities"’ Sort:
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Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation
- Authors:
- NORTHWAY Ruth, HOWARTH Joyce
- Journal article citation:
- Journal of Clinical Nursing, 24(3-4), 2015, pp.573-581.
- Publisher:
- John Wiley and Sons
Aims and objectives: The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Background: Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Methods: Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. Conclusions: This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. Relevance to clinical practice: The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. (Publisher abstract)
A voice for England?
- Author:
- BOURLET Gary
- Journal article citation:
- Community Living, 26(4), 2013, pp.10-11.
- Publisher:
- Hexagon Publishing
Scotland and Wales have their own national self-advocacy organisations but not England. The author believes England needs its own organiseation to represent people with learning difficulties so their voice can be heard. (Publisher abstract)
“When other people try to understand”: exploring the experiences of people with intellectual disabilities, who also have mental health problems
- Authors:
- MATTOCK Sasha Martine, BEARD Kieron, BADDELEY Amy
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 14(4), 2020, pp.91-101.
- Publisher:
- Emerald
Recent guidelines from the National Institute of Health and Care Excellence highlight that service users (SUs) with intellectual disabilities and co-occurring mental health problems rarely get the opportunity to share their experiences of mental health services. Over the past 20 years, policy documents have stated that these individuals (SUs) must be included in decisions about their care. Research suggests that often this is not the case. Therefore, this paper aims to create a space for SUs to share their experiences of mental health services, and what they found helpful.Design/methodology/approach: A focus group was held with five SUs, two psychologists and two researchers. The audio recording of the discussion was transcribed and analysed using thematic analysis.Findings: Three main themes were identified, namely, “relationships with others”, “inclusion and communication” and “challenges”. This focus group highlighted that although some SUs felt supported, they reported having little control in their lives and wanted to be listened to.Research imitations/implications: Including a SU in the planning and facilitation of the focus group would have made this research more inclusive. Practical implications: The implications of this research suggest that by listening to and involving SUs and developing more person-centred services, recovery rates may increase as the services provided would be more targeted. Originality/value: Very little research has previously been conducted to explore SUs’ experiences. This paper highlights the value of being heard and the knowledge that is often lost if the authors do not take the time to listen to the people for whom a service is designed. (Edited publisher abstract)
Doing research together: a study on the views of advisors with intellectual disabilities and non-disabled researchers collaborating in research
- Authors:
- PUYALTO Carol, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(2), 2016, p.146–159.
- Publisher:
- Wiley
Background: Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Materials and Methods: Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis. Results: The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. Conclusions: The study provides a better understanding of inclusive research processes by taking into account participants' view (Publisher abstract)
“It put control back onto my family situation”: family experiences of positive behaviour support
- Authors:
- BOTTERILL Sinead, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 13(3/4), 2019, pp.91-101.
- Publisher:
- Emerald
Purpose: Positive behaviour support (PBS) is currently considered best practice for managing challenging behaviour in young people with intellectual and developmental disabilities. A key principle of PBS is that all members of the person’s support network participate in the assessment and intervention. It is, therefore, important to understand what factors act as facilitators or barriers to family engagement; however, research in this area is limited. The purpose of this paper is to conduct a novel piece of qualitative research analysis into experiences of family members of young people who have received family-based PBS. Design/methodology/approach: Eight parents of a young person with an intellectual or developmental disability who had received PBS were interviewed about their experiences and factors they found helpful and hindering in terms of their engagement. Thematic analysis allowed a detailed and robust interpretation of the qualitative data. Findings: Five superordinate themes were identified, namely, PBS is more than just strategies, considering the family context, the therapist/family relationship, acknowledging challenges and the ongoing nature of the problem and supporting family member change. Research limitations/implications: Although research was rigorously conducted, the small sample size mean findings should be considered preliminary. Originality/value: The literature related to family engagement in PBS is limited and largely based on the opinions of professionals. This study identified factors that parents themselves felt were helpful and hindering in terms of their engagement and offers practical suggestions for services and future research. (Edited publisher abstract)
Adapting dialectical behaviour therapy in forensic learning disability services: a grounded theory informed study of “what works”
- Authors:
- BROWNE Claire, BROWN Gill, SMITH Ian C.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(4), 2019, pp.792-805.
- Publisher:
- Wiley
Background: Emerging evidence indicates effectiveness of dialectical behaviour therapy (DBT) for people with intellectual disabilities (PWID) in forensic settings; however, little is known about “what works” facilitating engagement and change. Methods: Eleven interviews were conducted with nine service users across two secure inpatient services. Grounded theory was used to develop a model of perceived engagement and change. Results: The model provides insights into how change occurs during DBT delivered in forensic settings. DBT constitutes a challenging journey, yet provides the motivation and means to address individual's intra‐/interpersonal aggression and progress towards release. Participants experienced engaging with DBT as difficult and coercive, moving from compliance and avoidance to acceptance and change. Key factors included participants’ motivation, beliefs about safety and ability to change, and interactions with staff. Conclusion: Recommendations are made for increasing intrinsic motivation, reducing perceived coercion and distress, and for future research to address potential aversive elements and enhance effectiveness. (Edited publisher abstract)
You tell me what we can do after this: findings and recommendations for the participation of young people with learning disabilities
- Author:
- WILSON Charlotte
- Journal article citation:
- Scottish Journal of Residential Child Care, 15(2), 2016, pp.8-28.
- Publisher:
- Department of Social Work. University of Strathclyde.
In recent years the participation of children has been highlighted with ever increasing importance, due to a raft of inquiry reports and legislation. In spite of this, and the increasing number of children defined as ‘disabled’, the participation of children with learning disabilities has been marginalised and is often described as ‘tokenistic’. This article reports on a research project which explored the factors which impact on levels of participation, for children and young people with learning disabilities in a residential short breaks setting. (Publisher abstract)
Fumblings and faux pas: reflections on attempting to engage in participatory research with people with an intellectual disability
- Authors:
- DOROZENKO Kate P., BISHOP Brian J., ROBERTS Lynne D.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.197-208.
- Publisher:
- Taylor and Francis
Background: Reflexivity is fundamental to developing methodologically and ethically sound research and is particularly important for researchers exploring experiences of oppression. Method: The authors offer reflections on the process of engaging in participatory research with people with an intellectual disability (ID). A reflexive journal was maintained throughout the duration of a research project that used photovoice and conversational interviewing to explore the identities and social roles of 18 members of an advocacy agency for people with ID.Results Challenges and tensions arose throughout the research process, including difficulties reproducing “ideal” participatory research, issues of informed consent, and tensions surrounding the beneficiaries of the research. Broader social processes were mirrored in interactions with the members, and damaging stereotyped identities were unknowingly imposed. Conclusions: Self-awareness and critical reflection is necessary to ensure that the existing power relations in traditional disability research (and wider society) are not replicated during the research process. (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)
A re-design of undergraduate medical training in intellectual disability: building psychological capital and imparting knowledge to redress health inequalities
- Authors:
- HARWOOD Ian, HASSIOTIS Angela
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 8(6), 2014, pp.344-361.
- Publisher:
- Emerald
Purpose: Over 1,250 people with intellectual disabilities die unnecessarily every year in NHS care. The purpose of this paper is to develop higher-order learning amongst medical students to increase engagement with this disadvantaged group and redress this injustice in care provision. Design/methodology/approach: The Psychiatry of Intellectual Disability input to University College London's (UCL) undergraduate medicine MBBS curriculum was re-designed. Materials were developed to broaden the students’ understanding of the stigma and health implication of intellectual disability and the affect it has on the care received by these patients. These were delivered in lecture and e-learning formats. The concept of psychological capital was used to frame the development of new materials with direct involvement of service users with intellectual disability. It is a management model designed to promote higher levels of learning, resulting in a deeper understanding of patient issues by UCL medical graduates. Findings: Findings from the online survey that accompanies the e-learning materials suggests that students have overwhelmingly adopted a positive outlook towards patients with intellectual disability and consider training necessary for all doctors. The filmed scenarios with people with intellectual disability appealed to students. Practical implications: The broadening of the educational materials required a re-design of the methods of curriculum delivery, a higher level of self-directed learning and student time commitment. Further assessments of the impact of the module are planned to include formative assessments of learning. Social implications: Medical lack of knowledge, personal attitudes and a reluctance to engage with people with intellectual disability have been identified as barriers to their receiving appropriate care. Originality/value: A blend of organisational change theories has been integrated into the production of a new, multi-media, e-learning package. (Publisher abstract)