Health Professions › General Health Professions

Patient and Public Engagement in Healthcare Research

Works Count: 34994

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Description

This cluster of papers focuses on patient and public engagement in healthcare research, particularly in the context of mental health services and recovery models. It explores the impact of patient and public involvement on research, service planning, and healthcare improvement. The cluster also delves into the role of peer support, stakeholder engagement, and systematic review methodologies in shaping research agendas and promoting user-centric healthcare practices.

Keywords

Patient Engagement; Public Involvement; Recovery Model; Mental Health Services; Peer Support; Healthcare Improvement; Research Agenda; Service User Involvement; Systematic Review; Stakeholder Engagement

Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material

2006-07-18

Elin Strømme Nilsen , Hilde Tinderholdt Myrhaug , Marit Johansen +2 more

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Recovery from mental illness: The guiding vision of the mental health service system in the 1990s.

1993-04-01

William A. Anthony

he implementation of deinstitutionalization in the 1960s and 1970s, and the increasing ascendance of the community support system concept and the practice of psychiatric rehabilitation in the 1980s, have laid … he implementation of deinstitutionalization in the 1960s and 1970s, and the increasing ascendance of the community support system concept and the practice of psychiatric rehabilitation in the 1980s, have laid the foundation for a new 1990s vision of service delivery for people who have mental illness. Recovery from mental illness is the vision that will guide the mental health system in this decade. This article outlines the fundamental services and assumptions of a recovery-oriented mental health system. As the recovery concept becomes better understood, it could have major implications for how future mental health systems are designed. The seeds of the recovery vision were sown in the aftermath of the era of deinstitutionalization. The failures in the implementation of the policy of deinstitutionalization confronted us with the fact that a person with severe mental illness wants and needs more than just symptom relief. People with severe T CHANGING TOWARD THE FUTURE

Beyond Rational Choice: The Social Dynamics of How People Seek Help

1992-01-01

Bernice A. Pescosolido

A classic problem common to sociology and other social sciences revolves around how people make decisions. Some recent approaches start with and revise an individually focused, rational action framework. While … A classic problem common to sociology and other social sciences revolves around how people make decisions. Some recent approaches start with and revise an individually focused, rational action framework. While this orientation to building transdisciplinary, multilevel models provides many insights, it fails to capture essential features of social life. The social organization strategy (SOS) framework presented in this article offers a complementary approach to social action in general and decision making in particular. This orientation, a network and event-centered counterpart to rational choice, rests on fundamental principles that distinguish the discipline of sociology: social interaction is the basis of social life, and social networks provide the mechanism (interaction) through which individuals learn about, come to understand, and attempt to handle difficulties. This approach shifts the from individual "choice" to socially constructed patterns of decisions, including consultation with others. Utilization research in medical sociology serves as a case for reviewing theoretical approaches to decision making and provides the background necessary to a theoretical exposition of the SOS approach using data from the National Survey of Access to Medical Care (1975-76.) The results support the utility of pursuing the SOS framework.

Crises and Life Changes and the Onset of Schizophrenia

1968-09-01

George W. Brown , J. L. T. Birley

Patient and service user engagement in research: a systematic review and synthesized framework

2013-06-03

Nathan D. Shippee , Juan Pablo Domecq Garces , Gabriela J. Prutsky Lopez +7 more

Abstract Background There is growing attention towards increasing patient and service user engagement ( PSUE ) in biomedical and health services research. Existing variations in language and design inhibit reporting … Abstract Background There is growing attention towards increasing patient and service user engagement ( PSUE ) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices. Objective This paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE . Design A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group ( PAG ). Eligible sources English‐language studies, commentaries, grey literature and other sources (including systematic and non‐systematic reviews) pertaining to patient and public involvement in biomedical and health services research. Data extracted Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE ‐related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions. Results Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE . Sources were synthesized into a two‐part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re‐assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational. Discussion and Conclusions Efforts at developing a solid evidence base on PSUE are limited by the non‐standard and non‐empirical nature of much of the literature. Our proposed two‐part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE .

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Peer Support/Peer Provided Services Underlying Processes, Benefits, and Critical Ingredients.

2004-01-01

Phyllis Solomon

The article defines peer support/peer provided services; discusses the underlying psychosocial processes of these services; and delineates the benefits to peer providers, individuals receiving services, and mental health service delivery … The article defines peer support/peer provided services; discusses the underlying psychosocial processes of these services; and delineates the benefits to peer providers, individuals receiving services, and mental health service delivery system. Based on these theoretical processes and research, the critical ingredients of peer provided services, critical characteristics of peer providers, and mental health system principles for achieving maximum benefits are discussed, along with the level of empirical evidence for establishing these elements.

From Engagement to Co-production: The Contribution of Users and Communities to Outcomes and Public Value

2012-08-04

Tony Bovaird , Elke Loeffler

Mapping the impact of patient and public involvement on health and social care research: a systematic review

2012-07-19

Jo Brett , Sophie Staniszewska , Carole Mockford +4 more

Abstract Background There is an increasing international interest in patient and public involvement ( PPI ) in research, yet relatively little robust evidence exists about its impact on health and … Abstract Background There is an increasing international interest in patient and public involvement ( PPI ) in research, yet relatively little robust evidence exists about its impact on health and social care research. Objective To identify the impact of patient and public involvement on health and social care research. Design A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS C entre for R eviews and D issemination 2009 and the C ritical A ppraisal S kills P rogramme ( CASP ). Grey literature was assessed using the D ixon‐ W oods et al . (2005) checklist. Inclusion criteria All study types that reported the impact PPI had on the health and/or social care research study. Main results A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. Conclusion This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.

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Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking

2009-02-05

Melanie Swan

A new class of patient-driven health care services is emerging to supplement and extend traditional health care delivery models and empower patient self-care. Patient-driven health care can be characterized as … A new class of patient-driven health care services is emerging to supplement and extend traditional health care delivery models and empower patient self-care. Patient-driven health care can be characterized as having an increased level of information flow, transparency, customization, collaboration and patient choice and responsibility-taking, as well as quantitative, predictive and preventive aspects. The potential exists to both improve traditional health care systems and expand the concept of health care though new services. This paper examines three categories of novel health services: health social networks, consumer personalized medicine and quantified self-tracking.

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Scoping studies: towards a methodological framework

2005-02-01

Hilary Arksey , Lisa O’Malley

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of … This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.

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The meaning of medications: Another look at compliance

1985-01-01

Peter Conrad

A review of the literature on peer support in mental health services

2011-07-19

Julie Repper , Tim Carter

Background. Although mutual support and self-help groups based on shared experience play a large part in recovery, the employment of peer support workers (PSWs) in mental health services is a … Background. Although mutual support and self-help groups based on shared experience play a large part in recovery, the employment of peer support workers (PSWs) in mental health services is a recent development. However, peer support has been implemented outside the UK and is showing great promise in facilitating recovery.Aims. This article aims to review the literature on PSWs employed in mental health services to provide a description of the development, impact and challenges presented by the employment of PSWs and to inform implementation in the UK.Method. An inclusive search of published and grey literature was undertaken to identify all studies of intentional peer support in mental health services. Articles were summarised and findings analysed.Results. The literature demonstrates that PSWs can lead to a reduction in admissions among those with whom they work. Additionally, associated improvements have been reported on numerous issues that can impact on the lives of people with mental health problems.Conclusion. PSWs have the potential to drive through recovery-focused changes in services. However, many challenges are involved in the development of peer support. Careful training, supervision and management of all involved are required.

The digitally engaged patient: Self-monitoring and self-care in the digital health era

2013-06-19

Deborah Lupton

Peer support: A theoretical perspective.

2001-01-01

Shery Mead , David Hilton , Laurie Curtis

This article offers one theoretical perspective of peer support and attempts to define the elements that, when reinforced through education and training, provide a new cultural context for healing and … This article offers one theoretical perspective of peer support and attempts to define the elements that, when reinforced through education and training, provide a new cultural context for healing and recovery. Persons labeled with psychiatric disability have become victims of social and cultural ostracism and consequently have developed a sense of self that reinforces the "patient" identity. Enabling members of peer support to understand the nature and impact of these cultural forces leads individuals and peer communities toward a capacity for personal, relational, and social change. It is our hope that consumers from all different types of programs (e.g. drop-in, social clubs, advocacy, support, outreach, respite), traditional providers, and policy makers will find this article helpful in stimulating dialogue about the role of peer programs in the development of a recovery based system.

Evidence based guidelines or collectively constructed “mindlines?” Ethnographic study of knowledge management in primary care

2004-10-28

John Gabbay , Andrée le May

<h3>Abstract</h3> Objective To explore in depth how primary care clinicians (general practitioners and practice nurses) derive their individual and collective healthcare decisions. Design Ethnographic study using standard methods (non-participant observation, … <h3>Abstract</h3> Objective To explore in depth how primary care clinicians (general practitioners and practice nurses) derive their individual and collective healthcare decisions. Design Ethnographic study using standard methods (non-participant observation, semistructured interviews, and documentary review) over two years to collect data, which were analysed thematically. Setting Two general practices, one in the south of England and the other in the north of England. Participants Nine doctors, three nurses, one phlebotomist, and associated medical staff in one practice provided the initial data; the emerging model was checked for transferability with general practitioners in the second practice. Results Clinicians rarely accessed and used explicit evidence from research or other sources directly, but relied on “mindlines”—collectively reinforced, internalised, tacit guidelines. These were informed by brief reading but mainly by their own and their colleagues9 experience, their interactions with each other and with opinion leaders, patients, and pharmaceutical representatives, and other sources of largely tacit knowledge. Mediated by organisational demands and constraints, mindlines were iteratively negotiated with a variety of key actors, often through a range of informal interactions in fluid “communities of practice,” resulting in socially constructed “knowledge in practice.” Conclusions These findings highlight the potential advantage of exploiting existing formal and informal networking as a key to conveying evidence to clinicians.

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A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

2014-07-17

Jo Brett , Sophie Staniszewska , Carole Mockford +4 more

Peer support among persons with severe mental illnesses: a review of evidence and experience

2012-06-01

Larry Davidson , Chyrell Bellamy , Kimberly Guy +1 more

Peer support is largely considered to represent a recent advance in community mental health, introduced in the 1990s as part of the mental health service user movement. Actually, peer support … Peer support is largely considered to represent a recent advance in community mental health, introduced in the 1990s as part of the mental health service user movement. Actually, peer support has its roots in the moral treatment era inaugurated by Pussin and Pinel in France at the end of the 18th century, and has re-emerged at different times throughout the history of psychiatry. In its more recent form, peer support is rapidly expanding in a number of countries and, as a result, has become the focus of considerable research. Thus far, there is evidence that peer staff providing conventional mental health services can be effective in engaging people into care, reducing the use of emergency rooms and hospitals, and reducing substance use among persons with co-occurring substance use disorders. When providing peer support that involves positive self-disclosure, role modeling, and conditional regard, peer staff have also been found to increase participants' sense of hope, control, and ability to effect changes in their lives; increase their self-care, sense of community belonging, and satisfaction with various life domains; and decrease participants' level of depression and psychosis.

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Examining the Factor Structure of the Recovery Assessment Scale

2004-01-01

Patrick W. Corrigan , Mark S. Salzer , R. O. Ralph +2 more

This article follows up on earlier research examining the factor structure of a measure of recovery from serious mental illness. Exactly 1,824 persons with serious mental illness who were participating … This article follows up on earlier research examining the factor structure of a measure of recovery from serious mental illness. Exactly 1,824 persons with serious mental illness who were participating in the baseline interview for a multistate study on consumer-operated services completed the Recovery Assessment Scale (RAS) plus measures representing hope, meaning of life, quality of life, symptoms, and empowerment. Results of exploratory and subsequent confirmatory factor analyses of the RAS for random halves of the sample yielded five factors: personal confidence and hope, willingness to ask for help, goal and success orientation, reliance on others, and no domination by symptoms. Subsequent regression analyses showed that these five factors were uniquely related to the additional constructs assessed in the study. We compared these findings with those of other studies to summarize the factor structure that currently emerges on recovery.

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Patient engagement in research: a systematic review

2014-02-26

Juan Pablo Domecq , Gabriela Prutsky , Tarig Elraiyah +7 more

A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and … A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

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Motivational interviewing in health settings: a review

2003-06-30

Eileen Britt , Stephen M. Hudson , Neville M. Blampied

Motivational Interviewing: Helping People Change

2013-02-18

Gillian Tober

Motivational Interviewing: Helping People Change . William R. Miller and Stephen Rollnick (3rd edn), New York: Guilford Press, 2013. £39.99. 482 pp. ISBN: 978-1-60918-227-4. Description of and instruction in the … Motivational Interviewing: Helping People Change . William R. Miller and Stephen Rollnick (3rd edn), New York: Guilford Press, 2013. £39.99. 482 pp. ISBN: 978-1-60918-227-4. Description of and instruction in the art of motivational interviewing (MI) has made a significant contribution to the optimism of practitioners treating addiction disorders. This is the field in which MI arose 30 years ago. Its use has generalized into other health behaviour change interventions, and beyond into general decision making. For the addiction field, the essence of the contribution has been to give practitioners a set of skills to deal with that most challenging characteristic of people with addiction disorders, namely resistance to change. This third edition of Motivational Interviewing elaborates on the method described in the two previous editions (Miller and Rollnick, 1991, 2002), but without the assistance of contributing authors and with the change of the sub-title to ‘Helping People Change’. The previous sub-titles were: Volume 1 ‘Helping People Change Addictive Behaviour’ and Volume 2: ‘Preparing People for Change’. These subtle differences are important; the practice of MI appears to stop where the behaviour change plan begins. Hence, arguably the second volume's sub-title is the most apt. All are based on the once novel approach in …

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Scientific and Consumer Models of Recovery in Schizophrenia: Concordance, Contrasts, and Implications

2005-09-28

Alan S. Bellack

Schizophrenia has traditionally been viewed as a chronic condition with a very pessimistic outlook, but that assumption may not be valid. There has been a growing consumer movement among people … Schizophrenia has traditionally been viewed as a chronic condition with a very pessimistic outlook, but that assumption may not be valid. There has been a growing consumer movement among people with schizophrenia that has challenged both the traditional perspective on the course of illness and the associated assumptions about the possibility of people with the illness living a productive and satisfying life. This new conception of the illness is supported by long-term studies that suggest that as much as 50% of people with the illness have good outcomes. There has also been a change in political and public health perspectives of the illness, stimulated in part by the President's New Freedom Commission on Mental Health. The purpose of this article is to provide an overview of some key themes about the recovery concept, as applied to schizophrenia. The article will address 3 questions: (1) What is recovery? (2) Is recovery possible? and (3) What are the implications of a recovery model for a scientific approach to treatment (ie, the use of evidence-based practices)? Scientific and consumer models of recovery are described, and commonalities and differences are discussed. Priorities for future research are suggested.

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The Experience of Recovery from Schizophrenia: Towards an Empirically Validated Stage Model

2003-09-23

Retta Andresen , Lindsay G. Oades , Peter Caputi

Objective: The consumer movement is advocating that rehabilitation services become recovery-orientated. The objectives of this study are to gain a better understanding of the concept of recovery by: (i) identifying … Objective: The consumer movement is advocating that rehabilitation services become recovery-orientated. The objectives of this study are to gain a better understanding of the concept of recovery by: (i) identifying a definition of recovery that reflects consumer accounts; and (ii) developing a conceptual model of recovery to guide research, training and inform clinical practice. Method: A review was conducted of published experiential accounts of recovery by people with schizophrenia or other serious mental illness, consumer articles on the concept of recovery, and qualitative research and theoretical literature on recovery. Meanings of recovery used by consumers were sought to identify a definition of recovery. Common themes identified in this literature were used to construct a conceptual model reflecting the personal experiences of consumers. Results: The definition of recovery used by consumers was identified as psychological recovery from the consequences of the illness. Four key processes of recovery were identified: (i) finding hope; (ii) re-establishment of identity; (iii) finding meaning in life; and (iv) taking responsibility for recovery. Five stages were identified: (i) moratorium; (ii) awareness; (iii) preparation; (iv) rebuilding; and (v) growth. Conclusion: A five-stage model compatible with psychological recovery is proposed, which offers a way forward for attaining recovery-orientated outcomes. After further empirical investigation, a version of this model could be utilized in quantitative research, clinical training and consumer education.

Uses and abuses of recovery: implementing recovery-oriented practices in mental health systems

2014-02-01

Mike Slade , Michaela Amering , Marianne Farkas +7 more

An understanding of recovery as a personal and subjective experience has emerged within mental health systems. This meaning of recovery now underpins mental health policy in many countries. Developing a … An understanding of recovery as a personal and subjective experience has emerged within mental health systems. This meaning of recovery now underpins mental health policy in many countries. Developing a focus on this type of recovery will involve transformation within mental health systems. Human systems do not easily transform. In this paper, we identify seven mis-uses ("abuses") of the concept of recovery: recovery is the latest model; recovery does not apply to "my" patients; services can make people recover through effective treatment; compulsory detention and treatment aid recovery; a recovery orientation means closing services; recovery is about making people independent and normal; and contributing to society happens only after the person is recovered. We then identify ten empirically-validated interventions which support recovery, by targeting key recovery processes of connectedness, hope, identity, meaning and empowerment (the CHIME framework). The ten interventions are peer support workers, advance directives, wellness recovery action planning, illness management and recovery, REFOCUS, strengths model, recovery colleges or recovery education programs, individual placement and support, supported housing, and mental health trialogues. Finally, three scientific challenges are identified: broadening cultural understandings of recovery, implementing organizational transformation, and promoting citizenship.

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Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis

2011-12-01

Mary Leamy , Victoria Bird , Clair Le Boutillier +2 more

Background No systematic review and narrative synthesis on personal recovery in mental illness has been undertaken. Aims To synthesise published descriptions and models of personal recovery into an empirically based … Background No systematic review and narrative synthesis on personal recovery in mental illness has been undertaken. Aims To synthesise published descriptions and models of personal recovery into an empirically based conceptual framework. Method Systematic review and modified narrative synthesis. Results Out of 5208 papers that were identified and 366 that were reviewed, a total of 97 papers were included in this review. The emergent conceptual framework consists of: (a) 13 characteristics of the recovery journey; (b) five recovery processes comprising: connectedness; hope and optimism about the future; identity; meaning in life; and empowerment (giving the acronym CHIME); and (c) recovery stage descriptions which mapped onto the transtheoretical model of change. Studies that focused on recovery for individuals of Black and minority ethnic (BME) origin showed a greater emphasis on spirituality and stigma and also identified two additional themes: culturally specific facilitating factors and collectivist notions of recovery. Conclusions The conceptual framework is a theoretically defensible and robust synthesis of people's experiences of recovery in mental illness. This provides an empirical basis for future recovery-oriented research and practice.

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Peer Support Among Adults With Serious Mental Illness: A Report From the Field

2005-09-28

Larry Davidson , Matthew Chinman , Dave Sells +1 more

Peer support is based on the belief that people who have faced, endured, and overcome adversity can offer useful support, encouragement, hope, and perhaps mentorship to others facing similar situations. … Peer support is based on the belief that people who have faced, endured, and overcome adversity can offer useful support, encouragement, hope, and perhaps mentorship to others facing similar situations. While this belief is well accepted for many conditions, such as addiction, trauma, or cancer, stigma and stereotypes about mental illness have impeded attempts on the part of people in recovery to offer such supports within the mental health system. Beginning in the early 1990s with programs that deployed people with mental illness to provide conventional services such as case management, opportunities for the provision and receipt of peer support within the mental health system have proliferated rapidly across the country as part of the emerging recovery movement. This article defines peer support as a form of mental health care and reviews data from 4 randomized controlled trials, which demonstrated few differences between the outcomes of conventional care when provided by peers versus non-peers. We then consider what, if any, unique contributions can be made by virtue of a person's history of serious mental illness and recovery and review beginning efforts to identify and evaluate these potential valued-added components of care. We conclude by suggesting that peer support is still early in its development as a form of mental health service provision and encourage further exploration and evaluation of this promising, if yet unproven, practice.

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Negotiating the coresearcher mandate – service users’ experiences of doing collaborative research on mental health

2012-04-10

Christian Moltu , Jon Stefansen , Marit Svisdahl +1 more

Purpose: Traditionally, the voices of service users have been silent in research into mental health issues. A Norwegian research network, however, recognizes the importance of involving service users as coresearchers … Purpose: Traditionally, the voices of service users have been silent in research into mental health issues. A Norwegian research network, however, recognizes the importance of involving service users as coresearchers and initiated a training program in research methodology and design intended to empower them as active participants in research projects. In this article, we explore how these coresearchers with a mental health service user background experience their participation in projects as well as in attending the training: What is it like being a service user coresearcher in collaborative studies on issues in mental health? How do coresearchers negotiate their roles and mandate? Method: We used focus groups as our data collection method, transcribed the group discussions verbatim, and analyzed the transcriptions using qualitative methodology. We then took the preliminary analyses back to the participants for discussion, auditing, and reanalysis. Results: We identified themes that represent important social processes around which the participants developed a consensual understanding: self-definition, constructive differentiation and negotiations. Conclusion: Our findings generate hypotheses on how participatory research into mental health issues can be fruitfully organized, in a way that empowers service users to active and constructive participation.

The Subject and Power

1982-07-01

Michel Foucault

Implementing Dual Diagnosis Services for Clients With Severe Mental Illness

2001-04-01

Robert E. Drake , Susan M. Essock , Andrew Shaner +7 more

After 20 years of development and research, dual diagnosis services for clients with severe mental illness are emerging as an evidence-based practice. Effective dual diagnosis programs combine mental health and … After 20 years of development and research, dual diagnosis services for clients with severe mental illness are emerging as an evidence-based practice. Effective dual diagnosis programs combine mental health and substance abuse interventions that are tailored for the complex needs of clients with comorbid disorders. The authors describe the critical components of effective programs, which include a comprehensive, long-term, staged approach to recovery; assertive outreach; motivational interventions; provision of help to clients in acquiring skills and supports to manage both illnesses and to pursue functional goals; and cultural sensitivity and competence. Many state mental health systems are implementing dual diagnosis services, but high-quality services are rare. The authors provide an overview of the numerous barriers to implementation and describe implementation strategies to overcome the barriers. Current approaches to implementing dual diagnosis programs involve organizational and financing changes at the policy level, clarity of program mission with structural changes to support dual diagnosis services, training and supervision for clinicians, and dissemination of accurate information to consumers and families to support understanding, demand, and advocacy.

Mental illness and well-being: the central importance of positive psychology and recovery approaches

2010-01-26

Mike Slade

A new evidence base is emerging, which focuses on well-being. This makes it possible for health services to orientate around promoting well-being as well as treating illness, and so to … A new evidence base is emerging, which focuses on well-being. This makes it possible for health services to orientate around promoting well-being as well as treating illness, and so to make a reality of the long-standing rhetoric that health is more than the absence of illness. The aim of this paper is to support the re-orientation of health services around promoting well-being. Mental health services are used as an example to illustrate the new knowledge skills which will be needed by health professionals. New forms of evidence give a triangulated understanding about the promotion of well-being in mental health services. The academic discipline of positive psychology is developing evidence-based interventions to improve well-being. This complements the results emerging from synthesising narratives about recovery from mental illness, which provide ecologically valid insights into the processes by which people experiencing mental illness can develop a purposeful and meaningful life. The implications for health professionals are explored. In relation to working with individuals, more emphasis on the person's own goals and strengths will be needed, with integration of interventions which promote well-being into routine clinical practice. In addition, a more societally-focussed role for professionals is envisaged, in which a central part of the job is to influence local and national policies and practices that impact on well-being. If health services are to give primacy to increasing well-being, rather than to treating illness, then health workers need new approaches to working with individuals. For mental health services, this will involve the incorporation of emerging knowledge from recovery and from positive psychology into education and training for all mental health professionals, and changes to some long-established working practices.

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What Is Recovery? A Conceptual Model and Explication

2001-04-01

Nora Jacobson , D Greenley

This paper describes a conceptual model of recovery from mental illness developed to aid the state of Wisconsin in moving toward its goal of developing a "recovery-oriented" mental health system. … This paper describes a conceptual model of recovery from mental illness developed to aid the state of Wisconsin in moving toward its goal of developing a "recovery-oriented" mental health system. In the model, recovery refers to both internal conditions experienced by persons who describe themselves as being in recovery—hope, healing, empowerment, and connection—and external conditions that facilitate recovery—implementation of the principle of human rights, a positive culture of healing, and recovery-oriented services. The aim of the model is to link the abstract concepts that define recovery with specific strategies that systems, agencies, and individuals can use to facilitate it.

Sense of self in recovery from severe mental illness

1992-06-01

Larry Davidson , John S. Strauss

This report based on research interviews conducted with persons struggling to recover from prolonged psychiatric disorders suggests that the rediscovery and reconstruction of an enduring sense of the self as … This report based on research interviews conducted with persons struggling to recover from prolonged psychiatric disorders suggests that the rediscovery and reconstruction of an enduring sense of the self as an active and responsible agent provides an important aspect of improvement. This process of developing a functional sense of self in the midst of persisting psychotic symptoms and dysfunction is described, and its implications for understanding severe mental illness and processes of change are discussed. It is suggested that viewing the development of a dynamic sense of self as central to the improvement process provides a coherent thread which ties together diverse research findings concerning factors influencing course and outcome of illness. It is also suggested that for treatment and rehabilitation to elicit and foster a more functional sense of self, models of improvement will need to allow for, and encourage, a more active and collaborative role for the person with the disorder.

The snakes and ladders of user involvement: Moving beyond Arnstein

2005-07-13

Jonathan Tritter , Alison McCallum

Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

2014-06-26

Carl May , David T. Eton , Kasey R. Boehmer +7 more

In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of … In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment.As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization.Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.

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The Health of the Nation

1994-06-01

Rachel Jenkins

The Health of the Nation – A Strategy for England is a national response to WHO'S Health for All by the Year 2000 initiative. It has great importance both because … The Health of the Nation – A Strategy for England is a national response to WHO'S Health for All by the Year 2000 initiative. It has great importance both because it focuses on health outcomes and because it selects mental illness as one of five priority areas. This article traces the historical background to the development of the White Paper, summarises the content of the mental illness key area and current progress in improving information and understanding and developing comprehensive services, and improving good practice. It draws out the implications for individual practitioners, users and cares, and for the working arrangements between purchasers and providers.

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The “Helper” Therapy Principle

1965-04-01

ency—it may be that emphasis is being placed on the wrong person in centering at tention on the individual receiving help. More attention might well be given the individual who … ency—it may be that emphasis is being placed on the wrong person in centering at tention on the individual receiving help. More attention might well be given the individual who needs the help less, that is, the person who is providing the assistance, because frequently it is he who improves! While it may be uncertain that people receiving help are always benefited, it seems more likely that the people giving help are profiting from their role. This ap pears to be the case in a wide variety of self-help therapies, including Synanon (for drug addicts), Recovery Incorporated (for psychologically disturbed people), and Alcoholics Anonymous. Mowrer notes that there are over 265 groups of this kind listed in a directory, Their Brother's Keepers.1 The American Conference of Therapeutic Self-Help Clubs publishes an official maga zine, Action, describing some of the func tions of these groups. While there is still a need for firm re search evidence that these programs are effective, various reports (many of them admittedly impressionistic) point to im

The future of mental health care: peer-to-peer support and social media

2016-01-08

John A. Naslund , Kelly A. Aschbrenner , Lisa A. Marsch +1 more

People with serious mental illness are increasingly turning to popular social media, including Facebook, Twitter or YouTube, to share their illness experiences or seek advice from others with similar health … People with serious mental illness are increasingly turning to popular social media, including Facebook, Twitter or YouTube, to share their illness experiences or seek advice from others with similar health conditions. This emerging form of unsolicited communication among self-forming online communities of patients and individuals with diverse health concerns is referred to as peer-to-peer support. We offer a perspective on how online peer-to-peer connections among people with serious mental illness could advance efforts to promote mental and physical wellbeing in this group.In this commentary, we take the perspective that when an individual with serious mental illness decides to connect with similar others online it represents a critical point in their illness experience. We propose a conceptual model to illustrate how online peer-to-peer connections may afford opportunities for individuals with serious mental illness to challenge stigma, increase consumer activation and access online interventions for mental and physical wellbeing.People with serious mental illness report benefits from interacting with peers online from greater social connectedness, feelings of group belonging and by sharing personal stories and strategies for coping with day-to-day challenges of living with a mental illness. Within online communities, individuals with serious mental illness could challenge stigma through personal empowerment and providing hope. By learning from peers online, these individuals may gain insight about important health care decisions, which could promote mental health care seeking behaviours. These individuals could also access interventions for mental and physical wellbeing delivered through social media that could incorporate mutual support between peers, help promote treatment engagement and reach a wider demographic. Unforeseen risks may include exposure to misleading information, facing hostile or derogatory comments from others, or feeling more uncertain about one's health condition. However, given the evidence to date, the benefits of online peer-to-peer support appear to outweigh the potential risks.Future research must explore these opportunities to support and empower people with serious mental illness through online peer networks while carefully considering potential risks that may arise from online peer-to-peer interactions. Efforts will also need to address methodological challenges in the form of evaluating interventions delivered through social media and collecting objective mental and physical health outcome measures online. A key challenge will be to determine whether skills learned from peers in online networks translate into tangible and meaningful improvements in recovery, employment, or mental and physical wellbeing in the offline world.

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A Preliminary Theory of Interorganizational Network Effectiveness: A Comparative Study of Four Community Mental Health Systems

1995-03-01

Keith G. Provan , H. Brinton Milward

From tokenism to empowerment: progressing patient and public involvement in healthcare improvement

2016-03-18

Josephine Ocloo , Rachel Matthews

There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and … There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this problem. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement.A selective narrative literature search was guided by the authors' broad expertise, covering a range of disciplines across health and social care, policy and research. Published systematic literature reviews were used to identify relevant authors and publications. Google and hand searches of journal articles and reference lists and reports augmented identification of recent evidence.Patients and the wider public can be involved at most stages of healthcare, and this can have a number of benefits. Uncertainty persists about why and how to do involvement well and evaluate its impact, how to involve and support a diversity of individuals, and in ways that allow them to work in partnership to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism.Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies. These aspects of involvement should receive greater attention, as well as the adoption of models and frameworks that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.

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Recovery: The lived experience of rehabilitation.

1988-04-01

Patricia E. Deegan

Achieving Research Impact Through Co‐creation in Community‐Based Health Services: Literature Review and Case Study

2016-06-01

Trisha Greenhalgh , Claire Jackson , S. E. Shaw +1 more

Policy Points: Co-creation—collaborative knowledge generation by academics working alongside other stakeholders—is an increasingly popular approach to aligning research and service development. It has potential for "moving beyond the ivory towers" … Policy Points: Co-creation—collaborative knowledge generation by academics working alongside other stakeholders—is an increasingly popular approach to aligning research and service development. It has potential for "moving beyond the ivory towers" to deliver significant societal impact via dynamic, locally adaptive community-academic partnerships. Principles of successful co-creation include a systems perspective, a creative approach to research focused on improving human experience, and careful attention to governance and process. If these principles are not followed, co-creation efforts may fail. Context Co-creation—collaborative knowledge generation by academics working alongside other stakeholders—reflects a "Mode 2" relationship (knowledge production rather than knowledge translation) between universities and society. Co-creation is widely believed to increase research impact. Methods We undertook a narrative review of different models of co-creation relevant to community-based health services. We contrasted their diverse disciplinary roots and highlighted their common philosophical assumptions, principles of success, and explanations for failures. We applied these to an empirical case study of a community-based research-service partnership led by the Centre of Research Excellence in Quality and Safety in Integrated Primary-Secondary Care at the University of Queensland, Australia. Findings Co-creation emerged independently in several fields, including business studies ("value co-creation"), design science ("experience-based co-design"), computer science ("technology co-design"), and community development ("participatory research"). These diverse models share some common features, which were also evident in the case study. Key success principles included (1) a systems perspective (assuming emergence, local adaptation, and nonlinearity); (2) the framing of research as a creative enterprise with human experience at its core; and (3) an emphasis on process (the framing of the program, the nature of relationships, and governance and facilitation arrangements, especially the style of leadership and how conflict is managed). In both the literature review and the case study, co-creation "failures" could often be tracked back to abandoning (or never adopting) these principles. All co-creation models made strong claims for significant and sustainable societal impacts as a result of the adaptive and developmental research process; these were illustrated in the case study. Conclusions Co-creation models have high potential for societal impact but depend critically on key success principles. To capture the nonlinear chains of causation in the co-creation pathway, impact metrics must reflect the dynamic nature and complex interdependencies of health research systems and address processes as well as outcomes.

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GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

2017-08-02

Sophie Staniszewska , Jo Brett , Iveta Simera +7 more

While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it … While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why. To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2. The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. One hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus. GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites.

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Recovery as a journey of the heart.

1996-01-01

Patricia E. Deegan

Engaging patients to improve quality of care: a systematic review

2018-07-20

Yvonne Bombard , G. Ross Baker , Elaina Orlando +6 more

To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services.We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social … To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services.We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients' experiences of being engaged.Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign-discrete products largely derived from low-level engagement (consultative unidirectional feedback)-whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients' experiences of the engagement process (n = 12; 25%). While most experiences were positive-increased self-esteem, feeling empowered, or independent-some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made.Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients' experiences of the engagement process and whether these outcomes translate into improved quality of care.N/A (data extraction completed prior to registration on PROSPERO).

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The dark side of coproduction: do the costs outweigh the benefits for health research?

2019-03-28

Kathryn Oliver , Anita Kothari , Nicholas Mays

Coproduction, a collaborative model of research that includes stakeholders in the research process, has been widely advocated as a means of facilitating research use and impact. We summarise the arguments … Coproduction, a collaborative model of research that includes stakeholders in the research process, has been widely advocated as a means of facilitating research use and impact. We summarise the arguments in favour of coproduction, the different approaches to establishing coproductive work and their costs, and offer some advice as to when and how to consider coproduction. Despite the multiplicity of reasons and incentives to coproduce, there is little consensus about what coproduction is, why we do it, what effects we are trying to achieve, or the best coproduction techniques to achieve policy, practice or population health change. Furthermore, coproduction is not free risk or cost. Tensions can arise throughout coproduced research processes between the different interests involved. We identify five types of costs associated with coproduced research affecting the research itself, the research process, professional risks for researchers and stakeholders, personal risks for researchers and stakeholders, and risks to the wider cause of scholarship. Yet, these costs are rarely referred to in the literature, which generally calls for greater inclusion of stakeholders in research processes, focusing exclusively on potential positives. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders. First, we recommend identifying specific motivations for coproduction and clarifying exactly which outcomes are required for whom for any particular piece of research. Second, we suggest selecting strategies specifically designed to enable these outcomes to be achieved, and properly evaluated. Finally, in the absence of strong evidence about the impact and process of coproduction, we advise a cautious approach to coproduction. This would involve conscious and reflective research practice, evaluation of how coproduced research practices change outcomes, and exploration of the costs and benefits of coproduction. We propose some preliminary advice to help decide when coproduction is likely to be more or less useful.

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Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

2019-04-22

Trisha Greenhalgh , Lisa Hinton , Teresa Finlay +4 more

Abstract Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, … Abstract Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.

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Research co-design in health: a rapid overview of reviews

2020-02-11

Peter Slattery , Alexander K. Saeri , Peter Bragge

Abstract Background Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in … Abstract Background Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised. Methods Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement . Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised. Results A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design. Conclusions Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.

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Research in Community and Mental Health

2000-01-01

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

2017-08-02

Sophie Staniszewska , Jo Brett , Iveta Simera +7 more

Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how … Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why. Objective To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2. Methods The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. Results 143 participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus. Conclusions GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites.

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Caught in the crossfire. Snitching and peer workers’ dilemmas

2025-06-25

Liese Recke , Camilla Vaccaro | Nordic Social Work Research

Advancing the Science of Meaningful Community Engagement Strategies: Contributions From the Nationwide Health Equity Action Network

2025-06-25

Lorna E. Thorpe , Nadia Islam | American Journal of Public Health

Engage and adapt: peer-led implementation of HIV navigation in Australia

2025-06-25

Timothy Krulic , Graham Brown , Sara Graham +1 more | Sexual Health

Background Alongside partnership, adaptation is one of the enduring themes of the Australian response to HIV, but the ability of peer insight and engagement to shape responses to change is … Background Alongside partnership, adaptation is one of the enduring themes of the Australian response to HIV, but the ability of peer insight and engagement to shape responses to change is often undervalued. In this article, we present a case study of a peer navigation for people living with HIV, run in partnership with clinical stakeholders, to examine its effectiveness and adaptability within a changing epidemiological landscape. Methods We draw on interviews and focus groups conducted in 2019 and 2020 with 30 peer workers, management and clinical stakeholders of a peer navigation program for people living with HIV operating in Victoria, Australia. Our interpretation uses a complex systems framework to evaluate peer programs, including their influence on health and service systems. Results We found that the peer navigation program’s ability to adapt and remain effective in a changing epidemic and clinical service landscape was based partly on its engagement with its communities and partly on its efforts to align with the service and policy systems. There was evidence that the program influenced the policy sector based on the quality of its community engagement to reduce the vulnerabilities the sudden implementation of COVID-19-related restrictions created for people living with HIV. Conclusions Our findings demonstrate the wider value peer navigation programs deliver in the response to HIV and illustrate the partnership and investment strategies required to improve the implementation and impact of similar programs.

Partners in Care: Training Healthcare Professionals in Using Patient Feedback

2025-06-25

Matthijs H. Bosveld , Max Hermans , M.J.F.W. Verhoeven +2 more | The Clinical Teacher

ABSTRACT Background Patients are the raison d'être of all those working in healthcare. Despite the recognised value of patient feedback, its integration into healthcare professionals' lifelong learning remains limited. At … ABSTRACT Background Patients are the raison d'être of all those working in healthcare. Despite the recognised value of patient feedback, its integration into healthcare professionals' lifelong learning remains limited. At the same time, healthcare professionals have most of their contact with patients after completing their training, and with it, the biggest impact on patient care. We present the development and evaluation of an interprofessional, evidence‐informed patient feedback training activity for healthcare professionals. Approach Using a design‐based research approach, we conducted interviews with 12 healthcare professionals and 10 patients to explore perspectives on patient feedback and lifelong learning. Insights from these interviews informed the design of a two‐session training program, which we piloted in an academic hospital and evaluated through observations and a survey. The first training session covers theoretical aspects of and patients' lived experiences with patient feedback. In‐between sessions, healthcare professionals are tasked with gathering patient feedback in daily practice. In the second session, participants discuss experiences and engage in peer‐to‐peer coaching facilitated by a trained patient. Evaluation of Innovation The training fostered a safe space for open dialogue between patients and healthcare professionals. Professionals sharing personal accounts on their own lived experience with care helped participants recognise healthcare professionals' humanity and highlighted the value of patient feedback in professionals' continuing development. Implications Engaging patients and healthcare professionals in co‐designing training programs supports healthcare professionals' use of patient feedback. While trainings can help professionals incorporate patient feedback into their learning, genuine integration requires embedding feedback‐seeking behaviours into daily practice.

De nouveaux métiers en addictologie : exemple des patients experts

2025-06-24

Nathalie Enjolras | Psychotropes

Les Patients Experts en Addictologie enrichissent la prise en charge des addictions par leur savoir expérientiel, offrant une approche empathique et personnalisée du rétablissement. Leur rôle s’étend au soutien clinique, … Les Patients Experts en Addictologie enrichissent la prise en charge des addictions par leur savoir expérientiel, offrant une approche empathique et personnalisée du rétablissement. Leur rôle s’étend au soutien clinique, à la réinsertion médico-sociale, à la prévention, à la formation des professionnels et à la recherche. Les formations spécifiques, alliant expérience vécue et compétences techniques, facilitent leur intégration dans les équipes soignantes. Cependant, des enjeux subsistent concernant la confidentialité, les limites statutaires et la rémunération. Bien que leur impact positif soit reconnu, des recherches supplémentaires sont nécessaires, pour renforcer les résultats déjà observés.

An approach to implementing patient and public involvement in investigator-initiated clinical trials

2025-06-24

Kristin Marie Bivens , Amélie J. A. A. Guyon , Valerie Behan +1 more | Schweizerische medizinische Wochenschrift

As patient and public involvement (PPI) in academic clinical research, especially clinical trials, is gaining recognition, including acceptance and implementation, questions arise about how to establish an effective "basic framework … As patient and public involvement (PPI) in academic clinical research, especially clinical trials, is gaining recognition, including acceptance and implementation, questions arise about how to establish an effective "basic framework for PPI in academic clinical research" for all stakeholders in Switzerland. In this Viewpoint, the authors focus on one aspect of the survey and interview results reported by Eberle and colleagues from PPI contributors, researchers, academic research infrastructure staff, and representatives of regulatory and funding bodies to identify a possible direction for a basic PPI framework in Switzerland. Specifically, they describe how they prepare two groups of stakeholders - clinical researchers and PPI contributors - for collaboration. They present clear definitional distinctions to help clinical researchers prepare for the 2025 call for proposals from the Swiss National Science Foundation (SNSF) for Investigator-Initiated Clinical Trials (IICT) and provide important background information that is essential for understanding the fundamentals of PPI.

Progressive Developments in Psychiatry

2025-06-24

Robert B. Dudas , David Crepaz‐Keay | Cambridge University Press eBooks

Lived experience perspectives about gaps and barriers in services for those living with, and those providing care, for people with young-onset dementia in Australia: Findings from the Joint Solutions Project

2025-06-24

Samantha M. Loi , Priscilla Tjokrowijoto , Nathan M. D’Cunha +7 more | PubMed

Young-onset dementia (YOD) is a dementia where symptom onset occurs at less than 65 years of age. There has been increased recognition of YOD with improved diagnostic assessments and the … Young-onset dementia (YOD) is a dementia where symptom onset occurs at less than 65 years of age. There has been increased recognition of YOD with improved diagnostic assessments and the introduction of the National Disability Insurance Scheme (NDIS). The Joint Solutions project aimed to evaluate the gaps and barriers along the pathway of care in Australia from a range of stakeholder perspectives to investigate access to services from those who have YOD and those who provide care for them. A cross-sectional quantitative approach was used, with questionnaires designed in consultation with general practitioners (GPs), clinicians, people with YOD, caregivers and community service providers. 313 people responded, including 45% lived experience (n = 33 people with YOD; 105 caregivers), 30% clinicians (n = 7 GPs; n = 86 clinicians), and 25% community providers. All states of Australia were represented, with Victoria having the largest proportion of respondents (39%). Time to diagnosis was 12 months from symptom onset for 70% of caregivers. Up to 90% of caregivers reported their family member with YOD had cognitive testing and neuroimaging. Access to age-appropriate post-diagnostic support varied, with 40% of caregivers reporting their family member received allied health and psychological support. There was limited information provided on employment, driving, legal and financial issues. Sixty percent of people with lived experience stated they had difficulties accessing the NDIS. There is improvement in the diagnosis of YOD but access to and availability of post-diagnostic support varies. More work is needed to improve equity and collaboration between service providers and clinicians and those affected by YOD.

Health Professionals’ Perspective on Implementing Recovery-Oriented Practice in A Mental Health Centre: A Critical Discourse Analysis

2025-06-24

Kim Jørgensen , Morten T. Hansen , Jacob Dahl Rendtorff | Nordisk Sygeplejeforskning

Assessing change and establishing empirical cutoffs: the Brief INSPIRE-O measure for personal recovery in mental health services

2025-06-24

Stine Bjerrum Møeller , Pia Veldt Larsen , Stephen F. Austin +4 more | Social Psychiatry and Psychiatric Epidemiology

Personal recovery in mental health services, encouraged by the World Health Organization, has gained significance in research and clinical settings. However, measuring personal recovery remains challenging due to the lack … Personal recovery in mental health services, encouraged by the World Health Organization, has gained significance in research and clinical settings. However, measuring personal recovery remains challenging due to the lack of universally accepted instruments. This study assessed Brief INSPIRE-O's ability to map personal recovery by determining cut-off scores and its ability to detect change in the process of personal recovery. Data was from the internet-based monitoring system (IMS) at the Mental Health Service, Capital Region of Denmark. Between 2018 and 2020, 8,192 patients with baseline data on Brief INSPIRE-O were included to assess its role in measuring personal recovery. Additionally, for analyses focusing on Brief-INSPIRE-O as a measure of change in personal recovery, we included 2,714 patients with pre- and post-treatment data. Brief INSPIRE-O was examined along with well-being (WHO-5) and measures of symptom distress (SCL-10), and functioning (SDS-M). Scores on all measures improved from pre- to post-treatment, except for functional impairment (SDS-M). Convergent validity was established with symptom distress (SCL-10; r = -0.63) and functioning (SDS-M; r = -0.55). A 10-point change in WHO-5 corresponded to an 18.9-point increase in Brief INSPIRE-O. ROC analysis identified an empirical cutoff of 50 for personal recovery and 8 points for clinically relevant change. The Brief INSPIRE-O demonstrated strong validity and sensitivity to change, supporting its use as a reliable tool for assessing personal recovery and treatment quality in clinical practice. It can be considered a relevant brief patient reported outcome measure to be used in international standards of quality and outcome monitoring.

Research impact assessment of a Canadian digital health funding program: a case study

2025-06-23

Jessica Nadigel , Bahar Kasaai , Halla Thorsteinsdóttir +4 more | Health Research Policy and Systems

Social frames promoting sharing in Norwegian Recovery Colleges: an ethnographic study

2025-06-23

Therese Ersvær Sjursæther , Christine Øye , Sonja Mellingen | Frontiers in Psychiatry

Introduction Recovery Colleges (RCs) for people with substance use and mental health challenges represent an innovation in mental health services, emphasising co-creation and adult learning. Students and course facilitators with … Introduction Recovery Colleges (RCs) for people with substance use and mental health challenges represent an innovation in mental health services, emphasising co-creation and adult learning. Students and course facilitators with diverse experiences engage in collaborative learning in these settings by sharing experiences, knowledge, and skills. This paper examines the social frameworks that facilitate or hinder sharing within RCs. Methods We conducted an ethnographic study in two distinct RC settings, using participatory observation and semi-structured interviews with facilitators, students, and leaders. We employed Goffman’s frame analysis to understand the social framework in RC and how its organisational structures and physical premises influence sharing among students and facilitators. Results Our results reveal layers of social frameworks that emphasise learning, recovery, strengths, equality, and open discussions about mental health. Organisational structures and physical premises significantly support or hinder these social frameworks. Clear communication, preparatory conversations, respect for boundaries, and neutral settings were identified as key aspects promoting sharing. Conversely, focus on diagnoses, top-down attitudes, inadequate preparations, excessive facilitator involvement, health-related settings, and overly exposed arrangements could inhibit sharing. Discussion The organic interactions within RC courses create complexities in understanding the promoters and inhibitors of sharing within these social frameworks. What promotes sharing in one setting can inhibit sharing in another. We illustrated situations where disruptions to the frames either promoted active participation for some or inhibited sharing for those who felt overwhelmed. Recognising this complexity is crucial for facilitators in RCs to effectively frame sharing and achieve mutual learning among students.

From participants to partners: advancing consumer involvement in transformative research

2025-06-23

Joan Carlini , E‐J Milne , Elizabeth Kendall +2 more | Journal of Marketing Management

The role of intersectionality in shaping participant engagement with health research through digital methods: findings from a qualitative study

2025-06-21

Cherish Boxall , Felicity L. Bishop , Nisreen A Alwan +6 more | Trials

Abstract Background Digital research methods were rapidly adopted into clinical trials and health research during the COVID pandemic in 2020. Current UK policy aims to make digital research methods a … Abstract Background Digital research methods were rapidly adopted into clinical trials and health research during the COVID pandemic in 2020. Current UK policy aims to make digital research methods a norm, but their influence on recruitment, retention, and representation in health research remains largely unknown. Whilst efforts have been made to improve engagement with digital health interventions, less attention has been given to digital research methods—such as informed consent, data collection, and research communications—despite their potential to influence study participation and participant experience. Objective This qualitative study aims to understand the factors influencing the initial uptake and ongoing engagement with digital research methods across diverse populations, capturing experiences and perspectives to inform diverse and efficient health research conduct. Methods Semi-structured interviews were conducted with 50 people who had participated in health research in the past 12 months. Reflective thematic analysis was used to understand factors influencing study engagement from participant perspectives, acknowledging the role of the researcher in data interpretation. Results Three interconnected themes were identified: (1) Digital Positionality: The Interplay of Social Position, Personal Experience, and Identity; (2) Power Redistribution in Research Relationships: Navigating Vulnerability and Agency; (3) Trust Assemblages: How Intersecting Identities Shape Multi-modal Verification Practices in Research Engagement. These themes illustrate how intersecting identity factors and social contexts shape engagement with digital methods in health research. The first theme revealed how factors such as age, social role, migration, and socioeconomic status create pathways towards or away from engagement with digital methods. The second theme highlights how different digital methods can shift power dynamics in participant-research relationships or expose social vulnerabilities. The third theme uncovered the complex ways participants established trust in research, relying on multi-channel trust makers. Conclusions The study reveals intersecting factors shaping participant engagement with digital methods, offering insights to enhance research conduct and increase diversity in health research participation. Future studies should integrate theoretical frameworks to examine these influencers and develop effective approaches for optimising diverse engagement with digital methods.

The MBCRC Advocate Researcher Program (MARP): connecting advocates and researchers as collaborative partners in cancer research

2025-06-21

Hillary S. Andrews , Igor Bado , Amy Beumer +7 more | npj Breast Cancer

Abstract Involving patient advocates as partners in cancer research improves research and provides favorable experiences for both the researcher and the advocate. Previous work demonstrates challenges to establishing relationships between … Abstract Involving patient advocates as partners in cancer research improves research and provides favorable experiences for both the researcher and the advocate. Previous work demonstrates challenges to establishing relationships between researchers and advocates, including uncertainty about why the relationships are necessary, how to establish them, what to say, and how they should be structured. To overcome these challenges, we established the Metastatic Breast Cancer Research Conference (MBCRC) Advocate Researcher Program (MARP) at the MBCRC in 2023. We outline the approach to the program to serve as a model for others interested in performing similar activities and report findings from surveys to establish evidence about the value of these relationships. The program connected 21 pairs of researchers and advocates, and participants responded to surveys about their experience, largely describing positive outcomes. Our hope is that a program like this could be used at any cancer conference in the future as we continue to encourage advocates and researchers to work together.

Navigating Mental Health Services as an (Im)Perfect Service User

2025-06-21

Suzette Jackson | Journal of Psychiatric and Mental Health Nursing

ABSTRACT Purpose This paper reflects on my experiences as a Māori woman navigating addiction, family violence, and recovery in New Zealand. The paper also explores how psychiatric and mental health … ABSTRACT Purpose This paper reflects on my experiences as a Māori woman navigating addiction, family violence, and recovery in New Zealand. The paper also explores how psychiatric and mental health nurses can better support women who use drugs (WWUD) by embracing complexity and rejecting idealized recovery models. Background WWUD who are also parenting and experiencing family violence face systemic stigma and exclusion from mental health and social services. Their experiences are shaped by intersecting barriers, including social judgment, fears around child protection, and a lack of appropriate services. Methods Using Frank's (1995) narrative typologies—chaos, restitution, and quest—I reflect on my lived experiences and draw insights from my doctoral research with mothers in a residential drug treatment and parenting program.

Structural and cultural barriers to integrated care for co-existing mental health and substance use: a morphogenetic analysis

2025-06-21

Simon Bratt | Deleted Journal

Abstract Co-existing mental health and substance use challenges (CEMS) remain a critical barrier to integrated care due to systemic fragmentation, rigid eligibility criteria, and risk-averse service cultures. Despite policy commitments … Abstract Co-existing mental health and substance use challenges (CEMS) remain a critical barrier to integrated care due to systemic fragmentation, rigid eligibility criteria, and risk-averse service cultures. Despite policy commitments to coordination, individuals with CEMS face exclusion, crisis-driven interventions, and stigma, reinforcing cycles of disengagement. This study applies Archer’s (Being human: the problem of agency, 2004) morphogenetic framework to analyse structural and cultural barriers to integration. Using qualitative methods, it examines Freedom of Information (FOI) data from NHS mental health trusts and open interviews with professionals and individuals with lived experience. Findings reveal persistent service silos, abstinence-based eligibility policies, and professional constraints that sustain morphostasis, preventing reform. The Integrated Morphogenetic Care Model (IMCM) is proposed as a framework to promote structural flexibility, and co-produced service design. Urgent reforms are needed to ensure person-centred, trauma-informed care for individuals with CEMS.

Co-production and transformative change: lessons and challenges

2025-06-21

Lyla Mehta , Nathan Oxley , Shibaji Bose +5 more | Global Social Challenges Journal

This article takes the case of the TAPESTRY project to look at how transformative change can be co-produced between local communities, researchers, community-based organisations and other actors. We lay out … This article takes the case of the TAPESTRY project to look at how transformative change can be co-produced between local communities, researchers, community-based organisations and other actors. We lay out the process, challenges and tensions of doing co-produced research with marginalised people in marginalised environments affected by climate-related uncertainties and other crises. We reflect on the strategies needed to ensure that the voices of the most marginalised, who are at the forefront of climate uncertainty, are able to come to the fore and as far as possible in their own terms. We argue that despite significant challenges due to the COVID-19 pandemic and in tackling existing power relations and social and gender inequities, co-produced research can help lift and give spaces to voices and perspectives that do not normally find their way to the realm of decision making. We demonstrate that critical transdisciplinary and interdisciplinary co-produced research can help reframe marginalised landscapes, and challenge dominant narratives and relations of power. While identifying concrete impacts on the ground can sometimes be difficult, co-production in itself can be a powerful agent of transformative change, leading to iterative learning and new insights among all participants. However, there are limits to how much can be achieved and scaled up in a conventional three- or four-year research project, calling for funders and donors to encourage longer-term engagements that enable local communities to take forward the research evidence and co-produced actions in locally appropriate ways.

Understanding barriers and facilitators to participation in Parkinson's research in Black communities in the UK

2025-06-20

Ivelina Dobreva , Sabrina Kalam , Moïse Roche +3 more | Journal of Parkinson s Disease

People from Black backgrounds are underrepresented in Parkinson's research, despite evidence of higher disease burden and risk of dementia. Greater understanding of the factors influencing participation in Parkinson's research can … People from Black backgrounds are underrepresented in Parkinson's research, despite evidence of higher disease burden and risk of dementia. Greater understanding of the factors influencing participation in Parkinson's research can improve recruitment, quality and generalizability of both observational research studies and clinical trials. Through focus groups with 17 people with Parkinson's and carers from Black communities, we identified distrust in the research process, stigma of Parkinson's diagnosis, and accessibility as key barriers to research participation. Participants made recommendations including: raising awareness of Parkinson's and related research, involving community ambassadors, improving communication throughout the research process, and providing practical support.

Increasing community members’ engagement in cancer research: the making research CLEAR program

2025-06-19

Rebecca J. Melillo , Christiane El Khoury , J Blanding Godbolt +3 more | Research Involvement and Engagement

Despite the importance of engaging community members in research, multiple barriers from the perspective of the investigator and community member exist. The Making Research CLEAR (Community Learning and Experience about … Despite the importance of engaging community members in research, multiple barriers from the perspective of the investigator and community member exist. The Making Research CLEAR (Community Learning and Experience about Research) Program aims to bridge the gap between research conducted at an NCI-designated cancer center and the community. Community members and a cancer center investigator were paired for a 6-month immersive research experience. Community members had at least one research experience per month with their investigator, while also attending cancer center activities such as Institutional Review Board (IRB) meetings, research lectures, protocol review meetings, and community outreach events. Community members and investigators completed baseline and endpoint surveys to assess perceptions and impact of the program. Seven community member-investigator dyads completed the program. There was strong agreement among community members that participation increased their awareness (Pre M = 4.0, Post M = 4.43) and understanding (Pre M = 3.43, Post M = 4.57) of current cancer research efforts, although there was decreased agreement that their participation would add value to the research (Pre M = 4.71, Post M = 4.57). Community members had increased interest in participating in clinical trials (Pre M = 4.29, Post M = 4.43) and their attitudes towards trials improved (Pre M = 4.57, Post M = 4.71). Their confidence in the safety and benefit of clinical trials was high at baseline (M = 4.71) yet remained unchanged at endpoint. Researchers strongly agreed that the program offered an opportunity to build trust between researchers and community members (Pre M = 4.57, Post M = 5.00) and it improved their understanding of the community's culture (Pre M = 4.57, Post M = 4.86). Overall, measures of community members' trust and transparency in research and clinical trials increased yet perceptions of their impact on research were mixed. Community input may have limited ability to directly impact the scientific process in a span of 6 months, but researchers' willingness to partner with community members in the future is promising.

Health, Well-Being, and Community

2025-06-19

William Mangold | Routledge eBooks

Coproduction Within Intersectoral Collaboration in the Context of a Neighborhood with Low Socioeconomic Scores in The Netherlands

2025-06-18

Roos van Lammeren , Jelmer Schalk , Suzan van der Pas +1 more | International Journal of Environmental Research and Public Health

Intersectoral collaboration between health care, social care and other sectors has been widely advocated to improve population health outcomes. Similarly, the active role of citizens as coproducers is increasingly described … Intersectoral collaboration between health care, social care and other sectors has been widely advocated to improve population health outcomes. Similarly, the active role of citizens as coproducers is increasingly described in the literature as an important element for improving people's health and well-being. Yet, there is little understanding of the role of coproduction in intersectoral collaboration, particularly in neighborhoods with low socioeconomic scores (SESs). In this empirical study, we analyze two aspects of coproduction that potentially drive positive health outcomes in intersectoral collaboration: How do coproducers in neighborhoods with low socioeconomic scores actively contribute to intersectoral collaboration, and what role does the relationship between professionals and citizens play in shaping these contributions? The study was conducted in a low-SES neighborhood in The Hague, the Netherlands. In this study, we explored the team 'the Connectors', an intersectoral collaboration of professionals and citizens with various (professional) backgrounds, focusing on accessible support for mental health services. The cause of mental health problems in low-SES neighborhoods varies; therefore, intersectoral collaboration is required in the approach to addressing these mental health problems. Using an action research approach, we demonstrated the importance of a reciprocal relationship between coproducers and professionals. We also found that 'boundary spanners' can help to improve this relationship, regardless of whether they are professionals or coproducers. We conclude that citizens in a low-SES neighborhood can not only benefit from coproduction, but can also contribute to it, because they have a high incentive to improve their neighborhood together with professionals in the intersectoral collaboration.

Needs Assessment of Digital Technology in Co-Creation: A Health CASCADE Scoping Review

2025-06-18

Quentin Loisel , Qingfan An , Vinayak Anand-Kumar +6 more | Research Square (Research Square)

<title>Abstract</title> <bold>Background:</bold> Patient and public involvement (PPI) is increasingly recognised as essential for meaningful, equitable, and impactful health and social care research. Co-creation is a promising involvement approach, but it … <title>Abstract</title> <bold>Background:</bold> Patient and public involvement (PPI) is increasingly recognised as essential for meaningful, equitable, and impactful health and social care research. Co-creation is a promising involvement approach, but it faces barriers to enable its optimal potential. Digital technologies have the potential to overcome these challenges and strengthen the participatory process, but the specific technology needs that underpin effective participation and engagement remain underexplored. <bold>Methods:</bold> We conducted a comprehensive scoping review of 60 peer-reviewed studies to systematically map the digital technology needs supporting co-creation processes. Needs were extracted and thematically analysed, resulting in a structured synthesis. <bold>Results:</bold> A total of 337 distinct digital technology needs were identified and organised into five thematic areas: Ensuring Integrity, Enabling Methodology, Cognitive Needs, Group Dynamics, and Process Management. While most needs focused on functional attributes, non-functional characteristics, such as usability, scalability, and inclusivity, emerged as critical for meaningful patient and public engagement. The review highlights the fragmented articulation of technology needs across disciplines and settings. It proposes a structured framework to make latent needs visible, align stakeholder perspectives, and guide the development of digital tools. The emerging role of artificial intelligence in supporting hybrid models of involvement, along with the associated ethical challenges, is also discussed. <bold>Conclusion:</bold> This review provides the first thematic framework for understanding and addressing digital technology needs in co-creation. The findings offer a foundation for researchers, practitioners, and policy-makers within health and social care to develop and implement digital tools that enhance accessibility, engagement, and impact of participatory processes. Future research should validate and refine these insights in partnership with patients, service users, and diverse communities to ensure technological solutions foster truly inclusive and effective involvement.

Free, culturally responsive and trauma-informed physical activity service for people experiencing social disadvantage in Sydney, Australia: the ‘Addi Moves’ initiative

2025-06-18

Chiara Mastrogiovanni , U.K. Choudhry , Oscar Lederman +7 more | British Journal of Sports Medicine

The content of Recovery College courses in England: a 71 college document analysis

2025-06-17

Simran Takhi , Holly Hunter Brown , Amy Ronaldson +7 more | Frontiers in Psychiatry

Introduction Recovery Colleges (RCs) exist in 28 countries and across five continents. The concept of recovery and recovery-oriented care has become widespread internationally and embedded in policy documentation and mental … Introduction Recovery Colleges (RCs) exist in 28 countries and across five continents. The concept of recovery and recovery-oriented care has become widespread internationally and embedded in policy documentation and mental health services. As a result, Recovery Colleges, which focus on adult learning and co-production, have now developed a global presence, but many psychiatrists are unfamiliar with this intervention. RCs can be categorized as ‘Strengths Oriented’, focusing on skills and knowledge development, or ‘Community-oriented’, emphasizing strengthening community and social connections. Research has not sufficiently investigated RC curriculum and how course provision differs depending on RC orientation. The study aimed to develop a typology of RC courses and assess differences in course types across RC orientations. Method A document analysis was conducted. The websites of 88 RCs in England were searched to collect online prospectuses. Overall, 2,330 courses described in 551 documents from 71 RCs were collated. Inductive content analysis was applied to the course titles to develop a typology of courses offered. Mann-Whitney U tests were used to assess differences in the median number of course types offered by Strengths-Oriented versus Community-Oriented colleges. Results A typology of 14 superordinate course categories was created. The three most common course categories were Self-management of Well-being (96% RCs ≥1 course, median 10 courses per RC), Mental Health Conditions and Symptoms (85% RCs ≥1 course, 4 courses per RC), and Creativity (86% RCs ≥1 course, 3 courses per RC). The least common course categories included Issues relating to the Extended Support Network and Issues relating to Staff (38% RCs ≥1 course, 0 courses per RC) (6% RCs ≥1 course, 0 courses per RC). The median number of courses did not differ between Strengths-oriented versus Community-oriented RCs, with the exception of more Practical Life Skills (p=0.021) and Involvement, Co-production and Research (p=0.036) courses in Strengths-oriented RCs. Conclusions RCs support mental health recovery through a diverse curriculum. Community-facing and strengths-based, health service-affiliated RCs offer similar courses. RCs prioritize equipping students with knowledge about living with mental health issues. Courses targeted to informal carers are lacking. Further cross-cultural extension of the typology is needed.

The Role of Caregivers in Supporting Personal Recovery in Youth with Mental Health Concerns

2025-06-17

Denise B. McKern , Govind Krishnamoorthy , Vicki C. Dallinger +2 more | Children

Background/Objectives: Mental disorders that emerge during adolescence frequently extend into adulthood, predicting poor academic and employment outcomes and heavy societal burdens. Novel efforts to improve youth mental health have transitioned … Background/Objectives: Mental disorders that emerge during adolescence frequently extend into adulthood, predicting poor academic and employment outcomes and heavy societal burdens. Novel efforts to improve youth mental health have transitioned from clinical recovery, typically focused on a cure, to a strength-based approach to wellbeing in supporting youth within mental health services. Mental health scholars have appealed for interventions to adopt an ecological system of care approach that integrates the principal caregivers in a young person's life. Despite preliminary literature indicating the importance of caregivers, little research has focused on the caregiver's role in supporting personal recovery in youth. Methods: This study sought to understand the role of caregivers in youth recovery by employing a qualitative design to inductively analyze the narratives from nine semi-structured interviews with caregivers. Additionally, deductive analysis explored the core five underpinnings of personal recovery connectedness, hope, identity, meaning, and empowerment (CHIME). Results: A thematic analysis of the literature identified five themes: providing unconditional love and positive regard; encouraging connection with peers; co-creating a sense of purpose, meaning, and hope; supporting assertiveness and advocacy; and promoting strength and opportunity for mastery aligning with the CHIME framework. The findings will allow health services to understand caregivers' roles better, thus providing information to guide recovery-oriented and family-centered care.

The ultimate power play in research - partnering with patients, partnering with power

2025-06-17

Dawn P Richards , Janelle Bowden , Patrick O. Gee +7 more | Research Involvement and Engagement

Abstract Background Patient and public involvement (PPI), also called patient engagement, patient partnership, or consumer involvement, holds potential to change approaches and outcomes in research and healthcare. All research teams … Abstract Background Patient and public involvement (PPI), also called patient engagement, patient partnership, or consumer involvement, holds potential to change approaches and outcomes in research and healthcare. All research teams have complex power dynamics, including those with patient/public members. We present our perceptions and understandings of power arising from our own experiences on health research teams. We suggest ways for members of health research teams to move forward in efforts to minimize power discrepancies. Main body As an international group of patients, caregivers, and research allies, we have experienced power dynamics within PPI collaborations and believe they must be challenged to achieve more equitable partnerships. We explore four themes relating to power in no order of importance: (1) The unstable and changing nature of power in PPI. Patient/public partners’ abilities and capacities to engage equally depend on the working environment and on their economic, cultural, social and symbolic (including health) capitals; (2) Power between and amongst patients/public partners. Layers of power exist between and amongst patient/public partners and their networks, which may lead to a lack of diversity in partners and/or bullying and requires recognizing that not all patient/public partners bring the same experiences, skills or perspectives to research teams; (3) Power and tokenism. Tokenism occurs when patient/public perspectives in PPI are mostly ignored, results when power and resources are disproportionately concentrated, and can be perpetuated by funding and funding agency infrastructures; and, (4) PPI as a commodity or product. PPI may be seen or used as a means to extract experiences or validate one’s work without truly involving patients/public contributors in the research design and process. PPI aligns with a broader trend of academic research methodologies grounded in standpoint epistemology (that is, how a person’s social identity influences what they know). We include practical recommendations for researchers and for patient/public partners to share power more equitably on research teams. Conclusion In our experiences on health research teams, patient/public partners are often the most vulnerable and most disadvantaged members of the team who experience the largest power inequities. We hope our identified themes about power, the context related to power, and our reflections and recommendations on them inspire those holding power on research teams to share that power.

Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol

2025-06-17

Colleen Pawliuk , Elaha Niazi , Anne‐Mette Hermansen +4 more | MethodsX

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Lived experience in mental health research in Ghana and Indonesia: What have we learned?

2025-06-17

Hannan Legend Tizaa , Lisa Agyinor Forson Aboagye , Esenam Abra Drah +7 more | PLOS mental health.

There are increasing calls for the involvement of people with lived experience in mental health research. However, to date there are few examples of peer research conducted by people with … There are increasing calls for the involvement of people with lived experience in mental health research. However, to date there are few examples of peer research conducted by people with lived experience of mental health conditions from the Global South. This paper explores the experiences of peer researchers involved in mental health research in Ghana and Indonesia. Peer researchers with lived experience of mental health conditions were employed as part of the research team to carry out qualitative and participatory arts-based research. Following this, peer researchers completed feedback forms and written reflections as well as taking part in unstructured discussions on their experience. Together with the academic research team, themes were developed from this feedback to identify the benefits, challenges and lessons learned from this process. Peer researchers benefited from developing skills and confidence, sharing lived experience, opportunities to engage with stakeholders and a supportive working environment. However, they identified several challenges including balancing care for self and others, precarious working conditions, enduring power imbalances and limited training and preparation. Key lessons included the need to consider safety and support needs, preparation for working with participants with lived experience, meeting resource needs and the importance of involving peer researchers across the research cycle. Based on these experiences, we identify several recommendations for peer research, particularly in Global South settings. These include involving people with lived experience in research design and costing, careful preparation and training, creating safe spaces and enabling access to mental health support, providing fair and comprehensive remuneration, creating opportunities for career development and democratizing opportunities for participation.

Technological Innovations in Dementia Care: The Role of Social Work Advocacy

2025-06-17

E. S. Park | Columbia Social Work Review

According to the World Health Organization (2023), dementia affects over 55 million people across the globe, projected to increase to 139 million individuals by the year 2050. The caregiver burden, … According to the World Health Organization (2023), dementia affects over 55 million people across the globe, projected to increase to 139 million individuals by the year 2050. The caregiver burden, which compounds over the years of illness, includes emotional, physical, and financial challenges. These challenges disproportionately impact low-income and minority communities (Mickens et al., 2020). This research paper explores the role of technology in alleviating these challenges by improving the quality of life of both persons with dementia (PWDs) and their caregivers. Current technological tools, including healthcare monitoring tools, location-tracking devices, and reminiscence therapy platforms, are analyzed for their strengths in addressing the cognitive and safety needs of PWDs. I also address limitations such as financial barriers, digital literacy gaps, and accessibility challenges among older adult populations. The study emphasizes the significant role of social workers in advocating for equitable, person-centered care through policy and community-level interventions. Recommendations for social workersare provided, including promoting digital literacy programs, subsidizing assistive technology costs, and prioritizing user-centered designs to ensure equitable access to dementia care technologies.

Peer researchers in NHS research: approved in principle, undermined in practice?

2025-06-16

Bryher Bowness , Peter Bates , Anoop Chauhan +3 more | Research Involvement and Engagement

Abstract Background Despite the increasing support and expectation for involving people with lived experience in healthcare research in England, challenges persist when navigating organisational structures. This can result in unintentional … Abstract Background Despite the increasing support and expectation for involving people with lived experience in healthcare research in England, challenges persist when navigating organisational structures. This can result in unintentional exclusion and disempowerment. Main body This reflective case report describes the experiences of a doctoral student working with their Research & Development department to determine the checks required for a peer researcher (without an employment contract) to co-facilitate focus groups with National Health Service (NHS) users. Despite best efforts, the absence of clear guidance about the necessary processes for obtaining her approval documents (known as ‘Research Passports in the UK) resulted in delays, distress, and the peer researcher resigning. Current procedural complexities of facilitating peer research in the NHS may be perpetuating rather than addressing systemic inequality. Reflecting together as academics and research governance departments, we hope to illuminate steps that can be taken in advance to mitigate future harms. Conclusions By taking shared responsibility for what needs to be changed, we hope to open a dialogue that will create collaborative and consistent practices aligned with the principles and aspirations of involving peer researchers.

Six ways to get a grip on co-creating curriculum with patients

2025-06-16

Lisa Graves , Eleftherios Soleas , Jennifer Turnnidge +7 more | Canadian Medical Education Journal

There is growing recognition of the value and importance of patient engagement in medical education. In this work, we reflect on both the literature on patient engagement and our experiences … There is growing recognition of the value and importance of patient engagement in medical education. In this work, we reflect on both the literature on patient engagement and our experiences with a recent initiative focused on the co-creation of educational curricula with patient and healthcare professional partners and offer recommendations for educators and researchers interested in engaging in patient partnerships to develop medical education curriculum. We adopted a co-creation approach, in which patient and healthcare professional Subject Matter Experts (SMEs) were provided an opportunity to co-create curricular material. During the curricular development period, we experienced successes and challenges that allowed us to develop six recommendations to “get a grip” on adopting co-creation approaches to curriculum development in medical education. By applying these recommendations, medical educators can help foster meaningful and sustainable patient partnerships.

The distant, the capable and trustworthy, and the digitally skilled—the production of client roles in municipal activation and social assistance services using automated decision-making

2025-06-15

Kettil Nordesjö , Gabriella Scaramuzzino | Journal of European Social Policy

While research on the ramifications of automated decision-making (ADM) for welfare organisations is growing rapidly, less attention has been paid to elucidating the role and experiences of clients in the … While research on the ramifications of automated decision-making (ADM) for welfare organisations is growing rapidly, less attention has been paid to elucidating the role and experiences of clients in the ADM process. This paper draws attention to how the performance of ADM policy in social assistance organisations working from an activation perspective is not merely a passive way of processing clients within the constraints of a given institution but an active interaction between clients and the organisation’s employees that ultimately constructs and produces the individual client in line with the purposes of the organisation. This article aims to explore how the role of the client is produced in the interaction between employees and clients when applying for social assistance in two Swedish social assistance organisations using ADM. The data consist of 28 qualitative interviews with managers, quality personnel, professionals, and clients. Findings depict the emergence of three client roles— the distant , the capable and trustworthy , and the digitally skilled client—the configurations of which are shaped by the interplay between employees and clients, serving to fulfil specific organisational imperatives.

Extending the peer support specialist pathway for supporting recovery

2025-06-12

Anthony Coetzer-Liversage , Pete Nelson , Ben Suker | Journal of Community Safety and Well-Being

Recovery Corps is a pioneering social innovation in behavioural health, addressing the critical need for peer-driven recovery support services amidst the ongoing substance use crisis in the United States. Leveraging … Recovery Corps is a pioneering social innovation in behavioural health, addressing the critical need for peer-driven recovery support services amidst the ongoing substance use crisis in the United States. Leveraging AmeriCorps infrastructure, Recovery Corps recruits and trains individuals with substance use disorder (SUD) lived experience to provide peer support in underserved communities. This narrative examines central assumptions associated with the Recovery Corps initiative, including those related to a perceived unmet demand for peer support, the feasibility of training community members without professional backgrounds, the impact of Recovery Corps peer support on recovery outcomes, and the degree to which Recovery Corps experience creates career pathways for individuals in recovery. By bridging service gaps, enhancing recovery capital, and fostering sustainable workforce development, Recovery Corps offers a comprehensive model for integrating peer support within behavioural health frameworks. Lessons drawn from Recovery Corps underscore the importance of capacity building, flexible evaluation methods, and strategic partnerships to sustain and scale peer-driven interventions. This program highlights an adaptable approach to recovery support, presenting a model that may inform future social innovation in behavioural health.

Social demographics and clinical characteristics of referred adult mental health patients to an Australian secure extended care unit: A 5-year retrospective study

2025-06-12

Partha Pratim Das , Emma Robertson , V.H. Harpwood +1 more | International Journal of Social Psychiatry

Introduction: Secure Extended Care Units (SECU) offer low-secure, long-term inpatient rehabilitation for patients with severe mental illnesses. Limited research is available about the profile of patients referred to such units. … Introduction: Secure Extended Care Units (SECU) offer low-secure, long-term inpatient rehabilitation for patients with severe mental illnesses. Limited research is available about the profile of patients referred to such units. Objective: This study aimed to explore the sociodemographic and clinical characteristics of patients referred to Austin Health SECU over a 5-year period in Australia. Methods: A retrospective study design was used to investigate 121 consecutive referrals. The 98 first-time patient referrals were included in the primary analysis. Descriptive statistics were used with non-parametric comparisons (Chi-square and Fisher’s exact test where appropriate). Results: Most of the total sample were single males of European ancestry, between 25 and 34 years old, with 10 years or less of education and receiving disability benefits. Schizophrenia was the predominant diagnosis, with 50% having a comorbid personality trait/disorder; substance use was high (82.6%). More than three-fourths had a history of trauma. Physical comorbidity was high (80%), with hepatitis C positivity at 20%. Treatments like Clozapine and Electroconvulsive therapy (ECT) were low. The Median Health of Nations Outcome Scale (HoNOS) was 20 (IQR: 14, 23) and the Life Skills Profile (LSP) was 22.5 (IQR: 16.25, 27). Conclusions: Referrals showed a high level of psychosocial-physical complexity, with a range of patient needs, service goals, and high psychiatric and interpersonal risk before the referral. The study discusses the need for medium and high-secure beds and a new model of care that integrates Community Care Units (CCU). A trauma-informed approach that creates holistic treatment plans and includes patients and families is indicated. The study makes a case for Universal screening of patients for Bloodborne Hepatitis and treatment for this cohort in an inpatient setting.

Care Management Intervention for Medicaid-Enrolled Adults With First-Time Psychiatric Admission

2025-06-12

Shari L. Hutchison , Jamie F. Edwards , Irina Karpov +1 more | Psychiatric Services

A behavioral health managed care organization in Pennsylvania expanded a bridging strategy associated with reducing multiple readmissions to Medicaid-enrolled adults with a first admission to an inpatient mental health service. … A behavioral health managed care organization in Pennsylvania expanded a bridging strategy associated with reducing multiple readmissions to Medicaid-enrolled adults with a first admission to an inpatient mental health service. The intervention consisted of active problem solving, screenings, assessment of individuals' motivation for ongoing treatment, care management services, and resource coordination. The intervention was associated with significantly lower rates of readmission and higher rates of aftercare receipt within 30 days compared with nonreceipt of the intervention. Direct cost savings were achieved through fewer readmissions, but longer-term savings may be achieved by affecting the illness trajectory for individuals with behavioral health disorders.

Burnout in peer workers working in mental health services: a scoping review of the literature

2025-06-12

Eileen Dukes , Michelle Rydon‐Grange | Advances in Mental Health

Engaging youth to promote their well-being: methods and findings from a knowledge mobilization project in Nova Scotia, Canada

2025-06-12

Julia Kontak , Caitlyn Macrae , Luther Stronach +2 more | Research Involvement and Engagement

Patient and caregiver involvement in identifying and designing interventions for trials in chronic kidney disease: a scoping review

2025-06-12

Rebecca Wu , Anastasia Hughes , Javier Recabarren Silva +7 more | The Nephron journals/Nephron journals

Background: Patient and caregiver involvement in identifying and designing health interventions can enhance the acceptability and uptake of interventions for person-centered care and outcomes. Our aim was to describe the … Background: Patient and caregiver involvement in identifying and designing health interventions can enhance the acceptability and uptake of interventions for person-centered care and outcomes. Our aim was to describe the approaches used to involve patients and caregivers in the identification and design of interventions in chronic kidney disease (CKD). Methods: Electronic databases were searched to April 2024 for articles that described the involvement of patients and caregivers in the identification and design of interventions for research in CKD. The findings were synthesized using a framework that addressed the type of intervention, purpose and reason of involvement, population involved, mode of involvement, and impacts of patient/caregiver involvement on the intervention. Results: We identified 14 studies that involved patients with CKD (n=238) and/or caregivers (n=36). The types of interventions included psychosocial, educational, lifestyle, and navigator programs. Patients and caregivers were involved to identify and prioritize features of the intervention, describe their lived experience to inform the intervention, provide feedback on intervention design, and identify potential facilitators and barriers to the uptake of the intervention. Patients and caregivers were involved as members of steering committees and advisory groups, and participated through workshops, interviews, focus groups, meetings, and an online messaging forum. The input of patients and caregivers resulted in the addition and changes to intervention features (e.g., content, structure, delivery, and materials) to personalize the intervention and to improve its inclusivity, accessibility, and suitability. Conclusion: Very few studies have described patient and caregiver involvement in the identification and design of interventions for research in CKD. Patients and caregivers were mostly involved in developing educational, lifestyle, and navigator interventions. Further efforts to involve patients and caregivers in developing interventions for research can help maximize the uptake and impact of person-centered interventions.

A study testing whether the 'Beat the Kick' programme helps adults with mild intellectual disabilities who have problems with alcohol or drugs to feel more motivated and take steps toward change

2025-06-11

Rosemarie Gideonse | http://isrctn.com/

Commentary prompted by “guidance on co-producing research with family carers”: representation and the demands of democratising knowledge production

2025-06-10

Abigail Croydon | Tizard Learning Disability Review

Purpose This commentary asks questions about representation and inclusion, especially in relation to the coproduction aim to democratise knowledge production. The purpose of this paper is to encourage broad knowledge … Purpose This commentary asks questions about representation and inclusion, especially in relation to the coproduction aim to democratise knowledge production. The purpose of this paper is to encourage broad knowledge of whose views and values are reflected in research and to support robust communication about the democratic arguments underpinning coproduction. Design/methodology/approach This commentary responds to Sutherland and Colleagues’ guidance, specifically to statements on representing views and values, and democratising purposes. It argues for attention to the complex question of representation and for setting a high bar for claims of serving a democratising function. Findings Who is represented and included in research changes over time. Some people with learning disabilities should now be recognised for their research experience as much as their lived experience. Evidence of past exclusions serves to question whether coproduction, as currently conceived, is always the most effective way to democratise knowledge production. Research limitations/implications To make progress in reaching the people whose views and values are underrepresented may mean using a range of collaborative approaches beyond coproduction. Practical implications Researchers might consider the tension between a wish to share the full range of research tasks and the goal of widening participation. Social implications Seeing value in different skills, interests and ways of being matters for people with learning disabilities and families. Originality/value The need to represent different kinds of people with learning disability is often underplayed. Closer attention to diversity in the learning disability community might improve understanding of who is underrepresented and how they might be brought into research.