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Journal article Full text available online for free

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)

Journal article

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-Blackwell

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)

Journal article

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.

Journal article

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.

Journal article

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-Blackwell

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)

Journal article

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-Blackwell

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)

Journal article

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-Blackwell

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)

Journal article

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.

Journal article

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff

Authors:
NORTHWAY Ruth, HOLLAND-HART Daniella, JENKINS Robert
Journal article citation:
Health and Social Care in the Community, 25(3), 2017, pp.923-931.
Publisher:
Wiley-Blackwell

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health-related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age-related health needs. The semi-structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long-term relationship with those they support was identified as being important to identifying any health-related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health-related communication. (Publisher abstract)

Journal article

'Policies don't protect people, it's how they are implemented': policy and practice in protecting people with learning disabilities from abuse

Authors:
NORTHWAY Ruth, et al
Journal article citation:
Social Policy and Administration, 41(1), February 2007, pp.86-104.
Publisher:
Wiley-Blackwell

Recent years have seen the development of policy guidance documents in both Wales and England relating to the protection of vulnerable adults from abuse. This policy guidance does, however, require translation into policies at the local level and that these policies are then implemented in day-to-day practice. This article reports some of the findings of a two-year study, funded by the Wales Office of Research and Development for Health and Social Care, that examined the development and implementation of such policies in services for people with learning disabilities within Wales. Data were gathered by means of a survey of service providers from across Wales and also via focus groups held with direct care staff and those with a responsibility for investigating alleged abuse. Positive developments include a commitment to multi-disciplinary working, increased clarity and consistency, and greater awareness. Less positive aspects include the potential for policy ‘overload’ and a feeling that, while there is awareness of the existence of vulnerable adults policies, knowledge of their content may be more limited. recommendations are made for the development of policy, practice and research.

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