Patient and carer involvement in healthcare education, service delivery and research: avoiding tokenism

Smith, Joanna; Dransfield, Annie

doi:10.1136/ebnurs-2019-103105

Cited by 10 publications

(10 citation statements)

References 6 publications

(4 reference statements)

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“…The importance of representing of all relevant stakeholder groups including patients in COS development4 7 is increasingly recognised, as it is in wider health research 16–18. There is also growing appreciation of the importance of supporting their participation in ways that are meaningful, thus avoiding tokenism and enhancing the credibility and validity of the resulting research 19 20. However, our findings suggest that not all the interviewees thought their participation in COS development was meaningful, as the purpose and process of the study were communicated in ways that were not accessible for them.…”

Section: Discussionmentioning

confidence: 82%

Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance

et al. 2019

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ObjectivesTo explore participants’ views of Delphi surveys in core outcome set (COS) development.Study design and settingPatients and health professionals (n=24) from seven recently concluded COS studies that had involved a Delphi survey took part in semistructured qualitative interviews (telephone and email exchange). Interviews explored participants’ understanding of COS and their experiences of the Delphi survey. Analysis was thematic.ResultsSeveral interviewees had previously participated in two or more COS or Delphi surveys. Those with multiple experiences of participation generally understood the purpose of COS and were satisfied with the Delphi survey. However, some interviewees who were first-time participants struggled to understand the purpose of COS and aspects of the Delphi survey, which limited their contribution and satisfaction with the study. Interviewees also differed in how they interpreted and subsequently used the written documentation provided to COS participants. Some interviewees wanted guidance regarding whose perspective to take into account when scoring outcomes and on how to use the scoring system. Interviewees reported being motivated to take part by the international and expert consensus aspects of the Delphi survey. A few interviewees reported experiencing either positive or negative emotional impacts arising from when they reviewed outcomes and stakeholder feedback.ConclusionThis study identifies important information that should be communicated to COS Delphi study participants. It also indicates the importance of communicating about COS Delphi studies in ways that are accessible and salient to participants, to enhance their experience of participation and make the process more meaningful for all.

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Section: Discussionmentioning

confidence: 82%

Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance

et al. 2019

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“…Our findings show how tokenism is characterized which resonates with some previous observations, that community stakeholders and gatekeepers are prioritized (Ahern, 2014; MacQueen & Auerbach, 2018); that there is over-reliance on the CAB model (Tindana et al, 2015); that there are questions about CAB representativeness (Campbell et al, 2015; Kruger et al, 2014; Simwinga et al, 2018), and independence (Campbell et al, 2015; Kruger et al, 2014); that engagement is prioritized at the early stages of trials e.g. recruitment (Adhikari et al, 2020; Day et al, 2018; MacQueen & Auerbach, 2018); that stakeholder voices are ineffectual (Simwinga et al, 2018; Smith & Dransfield, 2019; Vicari et al, 2019); that engagement is inadequately funded (King et al, 2014; Newman et al, 2006) and poorly documented (MacQueen & Auerbach, 2018; MacQueen et al, 2015). We show that “stale” engagement is also perceived as problematic.…”

Section: Discussionmentioning

confidence: 99%

“It’s Almost as if Stakeholder Engagement is the Annoying ‘Have-to-do'…”: Can Ethics Review Help Address the “3 Ts” of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement?

Wilkinson

Slack

Thabethe

et al. 2022

Journal of Empirical Research on Human Research Ethics

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Ethics guidance recommends that researchers engage stakeholders and that RECs review research for such engagement. The ethics review process may present a unique opportunity to support stakeholder engagement practices for HIV prevention studies. We conducted 28 interviews with experts from 12 countries to explore this issue, and analyzed the data using Thematic Analysis. We found that the value of engagement and review processes was strongly endorsed. However, we identified 3 major thematic complexities, namely: “Tokenism” where processes risk being “tick-box”; “Toxicity”, where practices may inadvertently have negative consequences; and “Tailoring”, where processes need careful variation in intensity. We make recommendations for how these “Ts” can be addressed during the review process to help contribute to thoughtful review of meaningful stakeholder engagement in research.

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“…The importance of continuously asking, listening to and acknowledging consumers was consistent with a desire for authentic partnering. Authenticity is well recognised in the literature, is relationship and values based, and requires, among other things, compassion, perspective taking, reciprocity, trust, confidentiality, respect and empathy (Lloyd & Carson, 2011; Smith & Dransfield, 2019; Woolf, Zimmerman, Haley, & Krist, 2016). However, a contested space in which the rhetoric of authentic partnering had not translated into everyday practice also existed (Glimmerveen, Ybema, & Nies, 2018; Hahn et al., 2016; Stewart, Watson, Montague, & Stevenson, 2008; Wellard, Lillibridge, Beanland, & Lewis, 2003).…”

Section: Discussionmentioning

confidence: 99%

Consumer engagement in health services in Queensland, Australia: A qualitative study about perspectives of engaged consumers

Ehrlich

Slattery

Kendall

2020

Health Soc Care Community

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Successive health policies demonstrate unwavering commitment to partnering with consumers and communities. However, engaging consumers is complex and replete with priorities, perspectives and values that are firmly held, virtuous and different. In the context of political imperatives and different approaches to partnering with consumers in health services, we sought to explore consumers' experiences of engagement in public, private, primary care and non-government health services in Queensland, Australia. Participants identified themselves as consumers of health services and were currently, or had previously been, involved in planning, designing, delivering, monitoring and/or evaluating health services; were aged over 18 and consented to being involved. This qualitative study used semi-structured individual interviews to collect data which were analysed thematically. Four themes were identified, (a) authentic engagement and representation: asking, listening and acknowledging; (b) a continuum of consumer expertise; (c) contested engagement: transgressing health services thresholds of tolerance and (d) creating value for consumers and health services: reciprocity, trust, respect and remuneration. Findings demonstrated that 'rules of engagement' exist between consumers and staff employed in clinical, managerial, executive and administrative positions within health services in response to a legislated requirement that health services partner with consumers. The rules of consumer engagement centred on authenticity, transparency, expertise and individual capacity to transcend personal experience. If health services and the broader public are to fully benefit from safety and quality advances proposed by partnering with consumers, then it is essential that areas of contestation are identified and addressed.

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Patient and carer involvement in healthcare education, service delivery and research: avoiding tokenism

Cited by 10 publications

References 6 publications

Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance

Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance

“It’s Almost as if Stakeholder Engagement is the Annoying ‘Have-to-do'…”: Can Ethics Review Help Address the “3 Ts” of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement?

Consumer engagement in health services in Queensland, Australia: A qualitative study about perspectives of engaged consumers

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