022 Pp: Research Design Boundaries for Qualitative Research, Stakeholder and Patient and Public Involvement, and Why They Matter

Keenan, Julia; Poland, Fiona; Wilson, Patricia M.; Mathie, Elspeth; Boote, Jonathan; Varley, Anna; Wythe, Helena; Wellings, Amander; Vicary, Penny; Cowe, Marion; Munday, Diane; Howe, Amanda

doi:10.1136/bmjopen-2017-016492.40

Cited by 3 publications

(3 citation statements)

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“…The blurring of boundaries between public involvement and qualitative research is documented as a methodological issue [41], but is not covered in any publications on ethics we are aware of. The ethical issue we have observed: “ Can I record and transcribe the data from my focus group with patients ” ( Researcher ) [ the researcher was referring to a public consultation meeting ].…”

Section: Main Textmentioning

confidence: 99%

A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards

Pandya-Wood

Barron

Elliott³

2017

Res Involv Engagem

111

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Plain English summaryResearchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in. The process of ethical review does not consider how researchers work with patients and the public early on to design their studies. Furthermore, there is no requirement for researchers to seek ethical approval for public involvement. However, in our work advising researchers about public involvement we have found that the ways in which researchers involve the public in the design of their studies are sometimes unintentionally unethical, and this is the focus of our paper. We have observed ten areas where ethical issues may arise because of the actions researchers may or may not take and which might consequently have a negative impact. Therefore, we have used these observations to develop a “framework” to help researchers and the public work together at the early design stage in ways that are ethical. Our intention for the framework is to help researchers be mindful of these ten areas and how easily ethical issues can arise. The framework suggests some ways to overcome the potential issues in each of the ten areas. The ten areas are: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding public involvement.We looked to see whether any other similar approaches to helping researchers address potential ethical issues when working with the public on designing studies have been published and to our knowledge none exist. Our framework is presented as a draft and believe that it would now benefit from input from researchers and the public to gauge how useful it is and whether there are any other possible situations that it might need to cover.AbstractThe current paper highlights real life examples of how ethical issues can arise during public involvement activities at the research design stage. We refer to “the research design stage” as the time between the generation of the research ideas and when formal permissions to start the work including ethical approval are granted. We argue that although most researchers work ethically at this early stage, some may still benefit from being informed about ethically conscious approaches to involving the public.The paper highlights 10 ethical issues that we have observed with involving...

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Section: Main Textmentioning

confidence: 99%

A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards

Pandya-Wood

Barron

Elliott³

2017

Res Involv Engagem

111

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“…It is worth noting the subtle distinction between PPI contributors and participants and the purpose to which information is used. The blurring of boundaries between the ‘dual role’ of participant and PPI contributor has been reported before (Wilson et al., 2015), is recognised in the current body of PPI literature (Keenan et al., 2017; Pandya-Wood, Barron, & Elliott, 2017; Swaffer, 2016) and raises specific ethical issues within dementia research, as PPI does not require ethical consent (INVOLVE, 2016). There is a need to clarify how this information is systematically collected and organised to ensure that people with YOD have the opportunity to debate and challenge service planning and delivery.…”

Section: Discussionmentioning

confidence: 99%

Young onset dementia: Public involvement in co-designing community-based support

Mayrhofer¹,

Mathie

McKeown

et al. 2018

Dementia

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Whilst the support requirements of people diagnosed with young onset dementia are well-documented, less is known about what needs to be in place to provide age-appropriate care. To understand priorities for service planning and commissioning and to inform the design of a future study of community-based service delivery models, we held two rounds of discussions with four groups of people affected by young onset dementia (n = 31) and interviewed memory services (n = 3) and non-profit service providers (n = 7) in two sites in England. Discussions confirmed published evidence on support requirements, but also reframed priorities for support and suggested new approaches to dementia care at the community level. This paper argues that involving people with young onset dementia in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, provides a way for co-designing services that address the challenges of accessing support for people affected by young onset dementia.

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“…While the ethical issue of the multiple roles is elaborately discussed by various researchers (e.g. Banks et al, 2019;Keenan et al 2017;MacFarlane and Roche 2019;Hersh, Israel, and Shiggins 2021), the seven ethical principles do not clearly define how to act as a research team encountering this ethical issue. Therefore, it was afterwards included in the formulation of the practical insight personal integrity: 'behaving reliably while acknowledging and taking up multiple roles and relationships (friends, peers, colleagues, counselor).'…”

Section: Discussion: Lessons Learned From Using the Principlesmentioning

confidence: 99%

Participatory Dialogues in Landscapes of Care

Aussems

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This thesis explores the lived experiences of disadvantaged young people in their journey toward self-actualization, as well as how participatory research can contribute to this. It is centered around three PAR-projects and builds on a care ethical and participatory action research design. The participants are young people (n=98) who are in one way or another care-dependent: children with juvenile idiopathic arthritis (JIA), girls in secured facilities who had experienced or were at risk of sexual exploitation, and young adults with developmental language disorder (DLD). In each study, the participants iteratively reflected their experiences and needs for their daily lives as they also created awareness how society can be more responsive to this. The participatory dialogues revealed that disadvantaged young people feel that others do not take them as they are, as they constantly have to adjust themselves to be accepted (identity politics). Furthermore, they also feel they have to act different to get the care that they need (care politics). They need to magnify their capabilities to get opportunities for self-actualization and to magnify their disadvantages so they can be acknowledged as ‘care-dependent’, a prerequisite to receive professional support. They call for more space to be who they genuinely are and to get the care that is adjusted to their needs. Overall, I bring to the attention that young people need—and deserve—a multipolar society that provides spaces for their personal capabilities, needs and perspectives, where being normal stands for being unique. This is a step toward combatting stigma that causes young people’s feeling of embarrassment and their hard work to be acknowledged, accepted and valued as important citizens in society. I make a plea for societal and government authorities to treat young people as serious partners in the shaping of such landscapes of care with equal opportunities for active and authentic societal participation. An ideal world is one where young people themselves no longer have to struggle for their recognition. As long as we have not achieved this, I posit, participatory research is an urgent need.

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022 Pp: Research Design Boundaries for Qualitative Research, Stakeholder and Patient and Public Involvement, and Why They Matter

Cited by 3 publications

References 0 publications

A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards

A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards

Young onset dementia: Public involvement in co-designing community-based support

Participatory Dialogues in Landscapes of Care

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