Researching recovery from psychosis: a user-led project

Pitt, Liz; Kilbride, Martina; Nothard, Sarah; Welford, Mary; Morrison, Anthony P.

doi:10.1192/pb.bp.105.008532

Cited by 176 publications

(225 citation statements)

References 12 publications

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“…The number of hours per week spent engaged in structured activity on average over the previous month was the measure of functioning used to model social recovery trajectories. Social and occupational functioning have been deemed among the most important markers of recovery by experts by both professional (Kane et al, 2003) and lived experience (Pitt et al, 2007).…”

Section: Participantsmentioning

confidence: 99%

The course of negative symptom in first episode psychosis and the relationship with social recovery

Gee

Hodgekins

Fowler

et al. 2016

Schizophrenia Research

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(2016) The course of negative symptom in first episode psychosis and the relationship with social recovery. Schizophrenia Research,. 065-171. Permanent WRAP URL:http://wrap.warwick.ac.uk/79034 Copyright and reuse:The Warwick Research Archive Portal (WRAP) makes this work by researchers of the University of Warwick available open access under the following conditions. Copyright © and all moral rights to the version of the paper presented here belong to the individual author(s) and/or other copyright owners. To the extent reasonable and practicable the material made available in WRAP has been checked for eligibility before being made available.Copies of full items can be used for personal research or study, educational, or not-for-profit purposes without prior permission or charge. Provided that the authors, title and full bibliographic details are credited, a hyperlink and/or URL is given for the original metadata page and the content is not changed in any way. A note on versions:The version presented here may differ from the published version or, version of record, if you wish to cite this item you are advised to consult the publisher's version. Please see the 'permanent WRAP URL' above for details on accessing the published version and note that access may require a subscription. Method: 1006 participants were followed up for 12 months following acceptance into EarlyIntervention in Psychosis services. Negative symptom trajectories were modelled using latent class growth analysis (LCGA) and predictors of trajectories examined using multinomial regression. Social recovery trajectories -also modelled using LCGA -of members of each negative symptom trajectory were ascertained and the relationship between negative symptom and social recovery trajectories examined. proportion of FEP patients with elevated negative symptoms at baseline will achieve remission of these symptoms within 12 months. However, elevated negative symptoms at baseline, whether or not they remit, are associated with poor social recovery, suggesting targeted interventions for service users with elevated baseline negative symptoms may help improve functional outcomes. Results

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Section: Participantsmentioning

confidence: 99%

The course of negative symptom in first episode psychosis and the relationship with social recovery

Gee

Hodgekins

Fowler

et al. 2016

Schizophrenia Research

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“…173,220 Basing data collection on the UKCRN portfolio will have also excluded smaller charity-funded projects; however, the portfolio does represent mainstream health-care research. In addition, some numbers within a topic area are very small, making analysis/significant differences difficult to calculate in the scoping and survey.…”

Section: Reflections On and Limitations Of The Researchmentioning

confidence: 99%

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

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

223

281

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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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“…Traditionally, recovery from psychosis meant 'clinical recovery' [11], entailing treatment compliance, psychotic symptom reduction, and the restoration of previous levels of functioning [12] Individuals were positioned as passive recipients [13] and psychosocial aspects of recovery were neglected [12,14]. An expanded view of 'personal recovery' developed as service users started to speak openly about their experiences [15].…”

Section: Recovery and Adaptationmentioning

confidence: 99%

Understanding Adaptation to First Episode Psychosis Through the Creation of Images

Attard

Larkin

Boden

et al. 2017

J. Psychosoc. Rehabil. Ment. Health

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This article aims to understand and explore the meaning of adaptation to First Episode Psychosis (FEP). An innovative method of data collection was used with ten participants who experienced FEP which integrated drawings of their lived experience within semi-structured interviews. The data were analysed through Interpretative Phenomenological Analysis and hermeneutic-phenomenological image analysis. Participants' experience was captured in four superordinate themes which identified that adaptation to FEP entailed: 'Finding out how psychosis fits into my story', 'Breaking free from psychosis', 'Fighting my way through psychosis', and 'Finding a new way of being 'me''. The participants' path of adaptation to FEP was an interplay of pains, challenges, and gains, and there was resonance with posttraumatic growth in their accounts. This article illustrates that creating images may offer a powerful way of conveying the multifaceted aspects of adaptation to FEP and could help individuals in communicating and processing their experience.

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Researching recovery from psychosis: a user-led project

Cited by 176 publications

References 12 publications

The course of negative symptom in first episode psychosis and the relationship with social recovery

The course of negative symptom in first episode psychosis and the relationship with social recovery

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

Understanding Adaptation to First Episode Psychosis Through the Creation of Images

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