Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 14
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)
Deciding what to research: an overview of a participatory workshop
- Authors:
- NORTHWAY Ruth, et al
- Journal article citation:
- British Journal of Learning Disabilities, 42(4), 2014, pp.323-327.
- Publisher:
- Wiley
This paper discusses how a participatory workshop with people with learning disabilities was held to try and identify priority areas for research. It is hoped that by sharing these experiences, other people will be encouraged to try similar approaches. (Edited publisher abstract)
The views and experiences of people with intellectual disabilities concerning advocacy
- Authors:
- LLEWELLYN Penny, NORTHWAY Ruth
- Journal article citation:
- Journal of Intellectual Disabilities, 12(3), September 2008, pp.213-228.
- Publisher:
- Sage
- Place of publication:
- London
This article discusses the first stage of a grounded theory study in which people with intellectual disabilities participated in focus groups to explore their definitions of advocacy and their advocacy support needs. Participants' ideas were influenced by their situation, the availability and type of support offered, and their relationships with supporters. Many different definitions of advocacy were revealed which were classified as reactive or proactive advocacy at micro, meso or macro level. The aim of advocacy was seen as empowerment, but this occurred only when support was readily available, concentrated on people's abilities, and facilitated opportunities for them to exert maximum possible control over their lives.
Social policy and people with intellectual disabilities in Poland: enhancing quality of life?
- Authors:
- OTREBSKI Wojciech, NORTHWAY Ruth, MANSELL Ian
- Journal article citation:
- Journal of Learning Disabilities, 7(4), December 2003, pp.363-374.
- Publisher:
- Sage
The past decade has been a time of great political, social and economic change within Poland. Such changes have affected the lives of all citizens including those with an intellectual disability. However, within the English language literature there is little published concerning the impact of changes in social policy on this group of people and the extent to which their quality of life has been enhanced. This article thus considers the difficult relationship between quality of life and social policy, provides an overview of key policy developments within Poland (both general and disability specific), and outlines some ways in which they have impacted on the lives of people with intellectual disabilities. It is suggested that further research is required before clear conclusions can be drawn. Areas for service development and research are thus proposed.
Training of residential social care staff to meet the needs of older people with intellectual disabilities who develop age-related health problems: an exploratory study
- Authors:
- NORTHWAY Ruth, JENKINS Robert, HOLLAND-HART Daniella
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(5), 2017, pp.911-921.
- Publisher:
- Wiley
Background: Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. Methods: Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. Findings: Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. Conclusions: Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing. (Edited publisher abstract)
Researching policy and practice to safeguard people with intellectual disabilities from abuse: some methodological challenges
- Authors:
- NORTHWAY Ruth, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(3), 2013, pp.188-195.
- Publisher:
- Wiley
Abuse of adults with intellectual disabilities can and does occur in many places, and as a result, many countries have instituted policies and enacted laws to address this problem. However, research concerning the impact of such policies on abuse remains largely limited to quantitative studies from the perspective of governmental or other authorities and is generally focused on one area or country. The authors highlight the need for an international research agenda that includes participatory research that both facilitates the active involvement of and investment in people with intellectual disabilities. (Edited publisher abstract)
Keeping safe and providing support: a participatory survey about abuse and people with intellectual disabilities
- Authors:
- NORTHWAY Ruth, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(3), 2013, pp.236-244.
- Publisher:
- Wiley
As part of a broader 3-year participatory research study, a questionnaire was distributed to 47 participants with intellectual disabilities attending an event and as a postal survey across Wales to examine what help people with intellectual disabilities feel they need to keep safe and, if they are abused, what support they need. From this, 107 (56%) usable questionnaires were returned. Respondents identified most strategies for keeping safe as being useful but were more likely to identify personal strategies rather than actions other people could take. When abuse does occur, having a trusted person to speak to and one who will believe you were viewed as the most important aspects. The authors noted that people with intellectual disabilities can identify personal safety strategies and their views and experiences should inform personal safety courses and staff training. They recommend that effective circles of support need to be developed both to protect against abuse and to provide support should it occur. (Edited publisher abstract)
Finding out together: lessons in participatory research for the learning disability nurse
- Author:
- NORTHWAY Ruth
- Journal article citation:
- Mental Health and Learning Disabilities Care, 3(7), March 2000, pp.229-232.
- Publisher:
- Pavilion
People with learning disabilities have traditionally been the passive subjects of other people's research. This article describes how participatory research provides a model for nurses to work with people with learning disabilities as equal partners in the research enterprise, and issues of which they must be aware if they are not to perpetuate disabling relationships with their co-researchers.
An exploratory study of Behavioural Specialist experiences of involving service users in the development of their positive behavioural support plans
- Authors:
- KRUGER Bethany, NORTHWAY Ruth
- Journal article citation:
- Journal of Intellectual Disabilities, 23(2), 2019, pp.160-174.
- Publisher:
- Sage
- Place of publication:
- London
Abstract: There is limited research that explores the experiences of how behavioural specialists actively involve people with a learning disability and challenging behaviour in the development of their positive behavioural support (PBS) plan. Accordingly, this exploratory research study aimed to explore this little understood area of practice. Methods: The study included semi-structured interviews comprised of nine Behavioural Specialists in three focus groups across two health boards. A descriptive thematic analysis study. Findings: Three major themes and 11 minor themes were identified illustrating how people with learning disabilities and behaviours that challenge were involved in developing their PBS plan. Significantly, the themes illustrated the complexity of truly involving service users in the process. Conclusion: Inclusion of people with a learning disability and behaviours that challenge in their PBS plan poses significant challenges. Person-centred care struggles to be truly embedded in the PBS model. (Edited publisher abstract)
Exploring professional decision making in relation to safeguarding: a grounded theory study of social workers and community nurses in community learning (intellectual) disability teams in Wales
- Authors:
- HODGES Zoe, NORTHWAY Ruth
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(2), 2019, pp.435-445.
- Publisher:
- Wiley
Background: People with intellectual disabilities are at increased risk of abuse which may not always be responded to appropriately. This study therefore sought to explore how nurses and social workers make decisions when safeguarding adults with intellectual disabilities. Method: A situational analysis grounded theory study. Semi‐structured interviews were undertaken with social workers (n = 16) and community nurses (n = 9) working in Community Learning (Intellectual) Disability Teams in Wales. Data were transcribed and analysed thematically and cartographically in keeping with situational analysis. Results: Four key themes emerged: The official line; Expectation and perception; Non‐vulnerable adult process options; Confidence and competence. Sites of silence were also identified: not making a decision, not asking further questions, preserving family relationships and the individual with intellectual disabilities. Conclusion: Decision making in relation to safeguarding adults with intellectual disabilities is a complex process, influenced by many factors and in which discretion is exercised by professionals. (Edited publisher abstract)