Engaging in participatory research: some personal reflections

Northway, Ruth

doi:10.1177/146900479800200305

Cited by 25 publications

(19 citation statements)

References 14 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The notion of taking back the full interview transcripts was rejected, as evidence suggests that people find these difficult to read, too information rich and as a consequence they can often focus more on grammar or syntax than content (Bornat, 2002;Clarke, 2000;Echevarria-Howe, 1995;Northway, 1998). In looking for alternative ways of taking data back to participants we noted the work of Ellis & Bochner (2000) who make a case for personal narratives being a way in which researchers can enable participants to "feel" the truth of their story and become co-participants, engaging with their story morally, emotionally, aesthetically and intellectually.…”

Section: From Interview To Narrativementioning

confidence: 99%

Using Narratives to Understand Older People’s Decision-Making Processes

2009

View full text Add to dashboard Cite

2Despite the availability of health and social care services designed to support people in their own homes, older people often under-use or refuse these. It is now acknowledged that this phenomenon contributes to older people being admitted to hospital and long-term care in circumstances that could be avoided. In order to understand how the uptake of supportive and preventative services can be improved the first author (JT), supervised by GG and SD, developed a constructivist inquiry to explore what factors enhance or bar service use. This paper describes how narratives were used not only to help indentify decision-and choice-making influences, but also as a way of enhancing the hermeneutic processes associated with constructivism.Keywords: constructivism; health care; decision-making; hermeneutics; narrative methods; older people; social services, utilization 3 Older people often underuse or refuse to use health and social care services designed to support them in their own homes (Joseph Rowntree Foundation, 2004). This has contributed to increased pressure on acute hospital services as older people are being admitted to hospital or long-term institutional care, which might otherwise have been avoided (Health and Social Care Change Agent Team, 2004). Consequently, current UK government policy continues to focus on developing services to support older people in the community and on reducing the numbers of older people in hospital and long-term care (Department of Health, 2006a;2006b).Despite this investment and commitment to improving care and services, previous studies of the uptake of health and social care services indicated that more research was required to understand how local authority budget constraints, pressure on hospital beds, mental capacity issues, individual financial resources and the cultural sensitivity of mainstream services might affect older people's decision-and choice-making processes (Atkin, 1998;Kane & Kane, 2001;Tanner, 2001;Wenger, 1999).There has also been increased demand for user involvement in research and practice development (Nolan, Hanson, Grant, & Keady, 2007). However, some groups in society do not have the same opportunities to influence service development because meaningful participation is affected by a range of issues, including cultural divisions, language barriers, gender, ill health, time and resources (Boote, Telford, & Cooper, 2002;Fudge, Wolfe, & McKevitt, 2007). This paper describes how narratives were used with older people, often excluded from mainstream consultation processes, to engage them in research and to evaluate the hermeneutic processes associated with constructivism.For researchers seeking to gain insights into people's experiences of a particular issue, a constructivist methodology is particularly useful as this approach acknowledges that peoples' 4 understandings of their lives and situations are multiple and complex (Guba & Lincoln, 1989). In order to appreciate how personal understandings and life experiences shape individual's actions constructiv...

show abstract

Section: From Interview To Narrativementioning

confidence: 99%

Using Narratives to Understand Older People’s Decision-Making Processes

2009

View full text Add to dashboard Cite

show abstract

“…Working across abilities, it is necessary to involve people who have relevant lived experience as researchers or co-researchers and to focus research adaptations on barriers and strategies relevant to the people with whom one hopes to work. The experiences of our research team echo those of Northway (1998) and Bigby and Frawley (2010), who acknowledge the additional time needed to create more accessible research processes. This must be taken into account when developing research timelines.…”

Section: Developing More Accessible Approaches To Community-based Parmentioning

confidence: 63%

Navigating Risks and Professional Roles: Research with Lesbian, Gay, Bisexual, Trans, and Queer Young People with Intellectual Disabilities

Marshall

2012

Journal of Empirical Research on Human Research Ethics

View full text Add to dashboard Cite

We examine ethical issues that emerged during a community-based participatory research (CBPR) study in Toronto, Canada, exploring sexual health attitudes and practices among lesbian, gay, bisexual, trans, queer, and questioning (LGBTQ) young people (ages 17-26) labeled with intellectual disabilities. These ethical concerns included: (1) managing the risk of coercion, (2) consent to participate in the study, (3) issues of confidentiality and disclosure, (4) balancing beneficence with self-determination, and (5) role conflict for researcher-practitioners who participate in CBPR projects. Incorporating critical disability perspectives and a heightened awareness of professional role conflict into CBPR practices has the potential to foster development of more inclusive and accessible sexual health initiatives and research environments.

show abstract

“…The participatory research paradigm is still in its early days (Sample 1996; March et al. 1997; Northway 1998), with few findings having been published (Whittaker et al. 1990; Whittaker 1997).…”

Section: User Views and Experiences In The Research Literaturementioning

confidence: 99%

Views and Experiences of People with Intellectual Disabilities and Their Families. (1) The User Perspective

Grant

Ramcharan

2001

Research Intellect Disabil

View full text Add to dashboard Cite

The present paper presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice. The literature review of user views and experiences produced three broad categories: (1) ‘testaments of life’, which are mainly ethnographies and life histories; (2) ‘user movement media’ produced in an accessible format for people with IDs or by people with IDs themselves; and (3) ‘research based studies’ in their varying forms. It is demonstrated that no single approach is able to encompass all the interests of knowledge production, policy planning, and action or practice on its own. Some of the methodological issues associated with these gaps are more fully discussed. A more coordinated and broad‐based research approach to user views and experiences is advocated.

show abstract

Engaging in participatory research: some personal reflections

Cited by 25 publications

References 14 publications

Using Narratives to Understand Older People’s Decision-Making Processes

Using Narratives to Understand Older People’s Decision-Making Processes

Navigating Risks and Professional Roles: Research with Lesbian, Gay, Bisexual, Trans, and Queer Young People with Intellectual Disabilities

Views and Experiences of People with Intellectual Disabilities and Their Families. (1) The User Perspective

Contact Info

Product

Resources

About