Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 3 of 3
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)
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.
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)