Passionate participation: Emotional experiences and expressions in deliberative forums

Barnes, Marian

doi:10.1177/0261018308095280

Cited by 89 publications

(101 citation statements)

References 30 publications

(25 reference statements)

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“…101,193 Reciprocity is often defined as a co-operative or mutual exchange of gifts or privileges. 194 Criticisms of PPI include tokenism and power asymmetries between researcher and lay representative.…”

Section: Reciprocitymentioning

confidence: 99%

“…This included sharing personal narratives, which Barnes 197 argues is important in ensuring mutual recognition, and allows the researcher to understand where the PPI representative is 'coming from'. 193 In the theoretical conceptualisation of PPI by Gibson et al, 130 there is a call for a 'plurality of arenas' where the different voices (lay and professional/researcher) can be heard. Many of the RAPPORT case studies suggested that different arenas were created to enable the emotive and rational voices to be heard and to contribute to the research study.…”

Section: Arenas For Relationshipsmentioning

confidence: 99%

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ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

210

278

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Reciprocitymentioning

confidence: 99%

Section: Arenas For Relationshipsmentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

210

278

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“…The Survivors History Group (The Survivors History Group 2012) emphasises the grassroots nature of the movement with ex-patients organising for and by themselves. The importance of emotions motivating collective action in response to injustices is also highlighted, but this can cause frustration in encounters with official discourse and bureaucracy (Barnes 2008). Writing in Canada, Church identifies the way in which officials discounted the expression of emotions in official forums as 'bad manners' (Church 1996).…”

Section: A New Social Movement?mentioning

confidence: 99%

“…Metro's robust approach was its undoing and their frustrations most explicitly stemmed from their refusals to conform to institutional norms of behaviour, eschew emotion and to rely on their membership's direct experience of services. All the groups departed in some degree from what institutional norms dictate negotiating change should 12 look like (Barnes 2008) but only Metro did this to such a degree that its position became untenable in a context in which 'user involvement' had become an official practice.…”

Section: Autonomy Knowledge and Institutional Normsmentioning

confidence: 99%

Service user led organisations in mental health today

Rose

MacDonald

Wilson

et al. 2016

Journal of Mental Health

Self Cite

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Background: Since 1990, health policy in England has stressed the importance of user involvement in shaping and delivering services.Aims: To explore mental health service user-led organisations (ULOs) in England as they interact with decision-makers to bring about change desired by them with a focus is on institutional norms behaviour and specialised knowledge impacting service users' relationships with services.Method: An ethnography of five ULOs in two provider organisations (NHS Trusts) including observing their meetings and interactions with decision-makers, conducting in-depth interviews and collecting reflective diaries kept by two members of each group.Results: During the study, one group ceased to operate. This was a group which refused to adopt the institutional rules and norms of managerial discourse. The other four groups survived by navigating the changing environment which existed at the time of the study, although often at some cost.Themes of autonomy and leadership were also identified. Conclusion:The current environment is one of organisational complexity and change and the place of ULOs is an ambiguous one as they strive to maintain autonomy whilst at the same time being an acceptable voice to managers.186 words

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“…The experience of a tense, real relationship in engagement (Barnes, 2008), linked to the experience of physical improvement, enabled a narrative to be constructed that placed the community"s activism at the forefront of regeneration. For example, in Wester Hailes a community activist argued:…”

Section: Accepted By Environment and Planning C: Government And Policymentioning

confidence: 99%

From Area-Based Initiatives to Strategic Partnerships: Have We Lost the Meaning of Regeneration?

Matthews

2012

Environ Plann C Gov Policy

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For forty years area-based initiatives (ABIs) were the primary tool used by UK governments to tackle problems of concentrated deprivation and dereliction. The last decade has seen these initiatives end, replaced by new forms of city or region-wide governance; Local Strategic Partnerships in England and Community Planning Partnerships in Scotland. It has been argued in both policy documents and policy analysis that these would deliver more effective regeneration for all communities. Challenging this narrative, this paper presents this policy shift as a change in the meaning of regeneration policy using the methodology of interpretive policy analysis. The evidence from Scottish experience suggests that for a key policy actorcommunity activists in deprived neighbourhoods -the approach of ABIs had a great deal of meaning as regeneration. Furthermore, this was still present a decade after an ABI had ended.Meanwhile the newer strategic partnerships were delivering little meaningful change. This difference in meanings is used to re-imagine strategic regeneration as a more positive process.

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Passionate participation: Emotional experiences and expressions in deliberative forums

Cited by 89 publications

References 30 publications

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Service user led organisations in mental health today

From Area-Based Initiatives to Strategic Partnerships: Have We Lost the Meaning of Regeneration?

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