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Rationale, Aims and Objectives: Despite extensive evidence on the value of patient decision support interventions (DESIs), there is no consensus on optimal DESI formats. Assessing clinicians' perceptions about DESI formats can help facilitate their adoption. The aim of this study was to assess clinicians' perceptions of DESIs formats and potential use in practice., Methods: Semi-structured qualitative interviews were conducted with doctors from diverse practice areas (internal medicine, OB/GYN, surgery, medical oncology, emergency medicine) and elicited perceptions toward patient DESIs formats (digital vs. paper) and timing of administration. Questions also elicited beliefs underlying attitudes, perceived social norms and self-efficacy for using DESIs and the feasibility of doing so. Data analysis was conducted using a thematic analysis approach., Results: Participants identified strengths of both more comprehensive digital and shorter paper-based tools and thought they could complement each other. Participants consistently expressed the advantages of using DESIs outside the consultation to supplement clinical discussions about cancer decisions given the amount of information to discuss during these emotion-laden conversations. Participants felt that patients with older age and lower socio-economic status were more likely to use a paper-based compared with a digital DESI. Participants also noted challenges related to reliable resources such as computers and Internet in the practice setting, which would be necessary for implementing the digital DESIs on site., Conclusions: Clinicians' perceptions and opinions about value of DESIs can vary widely across doctor, patient and clinic characteristics. A one-size-fits-all approach to implementation might not be feasible, suggesting that flexible approaches to providing decision support for patients are needed to drive broader adoption., (© 2014 John Wiley & Sons, Ltd.)

Rationale: A 'patient-oriented' research paradigm, also known as patient and public engagement, has infiltrated the field of health sciences and continues to spread. At first blush, it is difficult to reprove anything labelled 'patient-oriented'; however, the patient-oriented paradigm may easily become an ideological 'good', leading to unintended consequences that may well prove more detrimental than beneficial. While patient-oriented research has its roots in more radical forms of patient and public engagement, its recent instantiation betrays its roots and forecloses on more radical forms of engagement, such as critical participatory research., Aim and Objectives: The objective of this article is to deconstruct the patient-oriented research narrative and to demonstrate how such a discourse imposes itself as a dominant approach in health sciences., Approach: Following Derrida's deconstructive approach, we bring to light the unexamined presuppositions, false pretences, and presumed 'goodness' and 'naturalness' of patient-oriented discourse., Discussion: By deconstructing the patient-oriented narrative we demonstrate how pre-existing power structures (biomedical, economic, etc.) shape the conduct of the approach and serve to depoliticize the truly participatory aspects of research. Rather than being modelled on the evidence-based movement or seen as its natural 'evolution', patient-oriented research should resist by affirming itself as a radical form that is both participatory and emancipatory., (© 2023 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Background: When we are faced with health challenges, we have to choose a treatment from several alternatives. Most of the time, we must make a choice even though some information regarding the options is missing. Previous research found that missing information systematically impacts our choices., Aim: The present study investigated if context-related variables (type of information: advantages or costs, the label of the alternatives) and individual differences (moral purity, thinking style) have an impact on the way people make these kinds of choices. Methods: One hundred twenty-three students (52% males) had to make 27 decisions regarding their preferred alternative for treating various medical conditions. We manipulated the type of comparable information (i.e., regarding advantages, disadvantages, or costs), and the label of the treatment alternatives (i.e., abstract vs. recognizabletreatments). Additionally, we measured the participants' moral purity endorsement and thinking style via self-report questionnaires., Results: The results showed that context variables like the type of comparable information and the label of the alternatives are significant predictors of people's medical treatment choices. At the same time, self-reported measures were unrelated to the way people choose medical treatment., Conclusion: The results highlight the importance of discussing the issue of missing information with healthcare consumers and patients., (© 2022 John Wiley & Sons Ltd.)

Rationale, Aims, and Objectives: Patients with mental health problems experience numerous transitions into and out of hospital. This study explores former patients' views of pathways in transition between district psychiatric hospital centres (DPCs) and community mental health services., Method: A descriptive qualitative design was chosen. Three focus group interviews with a total of 10 informants from five different communities were conducted. Interviews were transcribed and analysed thematically where themes describe promoting or inhibitory factors to the transition phase., Results: The informants shared their experiences on issues promoting and preventing successful care pathways in mental health. Four main paired themes were identified: (a) patient participation/activation/empowerment versus paternalism and institutionalization, (b) patient-centred care versus care interpreted as humiliation, (c) interprofessional collaboration or teamwork versus unsafe patient pathways in mental health services, and (d) sustainable integrated care versus fragmented, noncollaborative care., Conclusions: Shared decision making was reported more precisely as informed shared decision making. Shared information between all parties involved in care pathways is key., (© 2019 Norwegian University of Science and Technology. Journal of Evaluation in Clinical Practice Published by John Wiley & Sons Ltd.)

Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

This special section represents a collection of papers on recruitment and retention of couples from underrepresented backgrounds in couple intervention research. Research shows that couples from underrepresented backgrounds tend to be missing from intervention research. This gap is concerning; conclusions about the effectiveness of these interventions are not being drawn from diverse and representative samples and it may be that scholars are inadvertently creating inappropriate and inaccessible services for these couples. Recruiting and retaining these couples require specialized efforts and attention. In this summary paper, we describe (a) the origins of this special section, (b) the existing research on recruitment and retention in couple intervention research, (c) an overview of the papers in this special section, and (d) future recommendations and directions for this aspect of methodology in couple research. This collection of papers elevates the need to involve community members from the beginning, reduce barriers to access, and create recruitment materials and a service delivery environment that is specific for the target population. [ABSTRACT FROM AUTHOR]

Background: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient‐led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi‐CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi‐CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi‐CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi‐CI programme development process and its impact on professional CI rehabilitation and research. Methods: Programme development was described using a 3‐layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video‐recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. Results: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI‐rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. Conclusion: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. Patient or Public Contribution: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write‐up of the results, and co‐authored this paper. [ABSTRACT FROM AUTHOR]

Rationale A multidisciplinary primary care clinic in Sydney, Australia, was planning to use electronic questionnaires to measure patient-reported outcomes. Methods Semi-structured interviews with 20 patients were undertaken to explore, among other things, practical issues regarding different questionnaire formats. The response rates and costs of email versus postal invitations were also evaluated. Results Compared with postal invitations, email invitations offered a cost-effective and practical alternative, with a greater proportion of patients volunteering for an interview. Assuming the interface is well-designed and user-friendly, many patients were happy to use the Internet to answer questionnaires. Most patients thought alternate formats should also be offered. Patients discussed advantages and disadvantages of the Internet format. Although more younger patients and females had given the clinic an email address; both sexes, and young and old patients, expressed strong preferences for either wanting or not wanting to use the Internet. Conclusion Researchers should consider using email invitations as a cost-effective first-line strategy to recruit patients to participate in health services research. Internet questionnaires are potentially cheaper than paper questionnaires, and the format is acceptable to many patients. However, for the time being, concurrent alternate formats need to be offered to ensure wider acceptability and to maximize response rates. [ABSTRACT FROM AUTHOR]

Introduction: For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit. Methods: We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real‐life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described. Results: We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions 'Patient‐clinician collaboration: content' (N = 396, 32%) and 'Patient‐clinician collaboration: manner' (N = 382, 31%) and the least related to 'Ongoing and iterative process' (N = 22, 2%) and in 'Minimally disruptive of patient lives' (N = 29, 2%). The items referred to 27 specific actions. Most items referred to 'Informing' (N = 308, 25%) and 'Exploring' (N = 93, 8%), the fewest items referred to 'Following up', 'Comforting' and 'Praising' (each N = 3, 0.2%). Discussion: Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care. Patient Contribution: Patients and caregivers from the 'Making care fit Collaborative' were involved in drafting the dimensions relevant to patient–clinician collaboration. [ABSTRACT FROM AUTHOR]

Background: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. Objective: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. Methods: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. Results: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. Conclusion: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. Patient or Public Contribution: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members. [ABSTRACT FROM AUTHOR]

The research into patient involvement is seldom concerned with the significance of cultural and structural factors. In this discussion paper, we illustrate our considerations on some of the challenges in implementing the ideal of patient involvement by showing how such factors take part in shaping the ways in which the intentions to involve patients are converted to practical interventions. The aim was to contribute to the approach dealing with contextual and structural factors of significance for patient involvement. With the idea of "institutional logics," borrowed from the Danish scholar, Erik Riiskjær, we first demonstrate, with examples from our own research, how patient involvement is interpreted differently within the different logics. Then, we show how the different interpretations of patient involvement meet and conflict in mutual competition as the ideals are sought to be converted to practical interventions. At last, we argue that an adequate theoretical model for the development in the future health care system should be expanded with a "patient logic." [ABSTRACT FROM AUTHOR]

Background: This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. Methods: Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem‐based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. Results: Sixty‐six CYP (aged 10–18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12‐page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. Discussion: Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. Public Contribution: One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Objectives To characterise the literature on public involvement in health research published between 1995 and 2009. Methods Papers were identified from three systematic reviews, one narrative review and two bibliographies. The analysis identified journals where papers were published; countries of lead authors; types of public involved; health topic areas; and stages of research involving the public. Papers were also classified as to whether they were literature reviews or empirical studies; focused on participatory/action research; were qualitative, quantitative or mixed-method. The number of papers published per year was also examined. Findings Of the 683 papers identified, 297 were of USA origin and 223 were of UK origin. Of the 417 empirical papers: (i) participatory/action research approach was dominant, together with qualitative data collection methods; (ii) the stage of research the public was most involved was question identification; (iii) indigenous groups were most commonly involved; (iv) mental health was the most common health topic. Published studies peaked in 2006. Conclusions The present study identifies publication patterns in public involvement in health research and provides evidence to suggest that researchers increasingly are 'walking the walk' with respect to public involvement, with empirical studies consistently out-numbering literature reviews from 1998. [ABSTRACT FROM AUTHOR]

Background: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross‐sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. Objective: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. Results: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. Conclusions: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co‐create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. Patient or Public Contribution: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. Clinical Trial Registration: Not applicable. [ABSTRACT FROM AUTHOR]

Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]

Introduction: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co‐design Forward with Dementia—Social Care, a resource and information website supporting people receiving a dementia diagnosis. Methods: The PPIE partnership was set up in four stages: 1–identifying communities that have been under‐represented from PPIE in dementia research; 2—recruiting PPIE partners from these communities; 3—supporting PPIE partners to become confident to undertake their research roles and 4—undertaking research co‐design activities in an equitable fashion. Results: To address under‐representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. Conclusion: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co‐design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co‐design of research outputs that reflect the diversity and complexity of UK contemporary society. Patient or Public Contribution: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co‐authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co‐authors. [ABSTRACT FROM AUTHOR]

Background: Youth engagement in research, wherein youth are involved in the research beyond mere participation as human subjects, is growing and becoming more popular as an approach to research. However, systematic and deliberate theory‐building has been limited. We conducted a systematic review to identify and synthesize theories, models and frameworks that have been applied in the engagement of youth in health research, including mental health. Methods: Six academic databases (MEDLINE, PsycINFO, Embase, PubMed, Scopus, CINAHL) and the grey literature were searched for relevant studies. Citation tracking was conducted through ancestry and descendancy searches. The final search was completed on 7 February 2023. Findings were summarized in a narrative synthesis informed by principles of hermeneutic analysis and interpretation. Reporting of results is in accordance with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta‐Analyses) 2020 Statement. Results: Of the 1156 records identified, 16 papers were included, from which we extracted named theories (n = 6), implicit theories (n = 5) and models and frameworks (n = 20) used for youth engagement in health research. We identified theories that were explicitly stated and surfaced theories that were more implicitly suggested. Models and frameworks were organized into four categories based on their principal features: power‐focused (n = 8), process‐focused (n = 7), impact‐focused (n = 3) and equity‐focused (n = 2). Few frameworks (n = 5) were empirically tested in health‐related research. Conclusions: The state of theoretical development in youth engagement in research is still evolving. In this systematic review, we identified theories, models and frameworks used for youth engagement in health research. Findings from this systematic review offer a range of resources to those who seek to develop and strengthen youth engagement in their own research. Patient or Public Contribution: Youth engaged as patients in the research were not involved in planning or conducting the systematic review. However, youth researchers in their early to mid‐20s led the planning, implementation and interpretation of the review. As part of subsequent work, we formed a youth advisory board to develop a youth‐led knowledge mobilization intended for an audience of youth with lived experience of being engaged as patients in research. [ABSTRACT FROM AUTHOR]

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Introduction: Consumer engagement in research is becoming an ethical, political, and moral imperative. The aim of this scoping review was to provide a snapshot of the current status of the emerging area of consumer engagement in occupational therapy health‐related research, as published in the Australian Occupational Therapy Journal. Methods: A scoping review was conducted of all health‐related original research published in the Australian Occupational Therapy Journal for 5½ years, plus Early View, as at June 2019. Eligible papers were examined for consumer engagement content which included any active choice or control by consumers, beyond being a research participant. A recognised six stage methodology was used with quantitative and qualitative data analysed. Two consumers collaborated in interpreting the data including finalising themes, leading theme naming, developing key discussion points, and producing recommendations. Results: Of the 123 eligible papers, 48 (39.02%) included consumer engagement. However, only two incorporated consumer engagement across all research phases—preparation, execution and translation. A total of 103 consumer engagement activities were charted and categorised across all papers. There were limited instances of consumer collaboration (14/103, 13.59%) or consumer‐led research processes (15/103, 14.56%) reported. Four themes emerged: Parity in research partnerships; It's important to know the Who, What, When, How and So What of consumer involvement; Consumer engagement must be a two‐way process—not a dead end street; and Meeting the challenge—being diverse and inclusive. Conclusion: Comprehensive consumer‐researcher partnerships may not be common‐place in health‐related occupational therapy research in the Australian Occupational Therapy Journal. This paper is a call to action. Occupational therapists must embrace consumer research partnerships as a demonstration of the key philosophies of enabling and empowering consumers and communities. Collaboration with two consumers in finalising data analysis, results interpretation and reporting added a diverse and valuable perspective. [ABSTRACT FROM AUTHOR]

Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy‐making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy‐making for older adults. Methods: A systematic search of peer‐reviewed and grey literature (English only) describing public engagement initiatives in health policy‐making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy‐making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation‐type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. Conclusion: This review describes how public engagement practices have been conducted to help inform health policy‐making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. Patient or Public Contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults. [ABSTRACT FROM AUTHOR]

Introduction: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). Method: We were awarded funds via a competitive application process by Bellberry Limited, a national not‐for‐profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. Findings: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co‐chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. Conclusion: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. Public Contribution: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits. [ABSTRACT FROM AUTHOR]

Objectives: Despite high levels of mental ill‐health amongst young people (aged 15–30), this group demonstrates low help‐seeking and high drop‐out from mental health services (MHS). Whilst shared decision‐making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co‐design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth‐focused form of highly personalised and measurement‐based care, is designed to promote shared decision‐making between young people and clinical service providers. Methods: We conducted workshops with 24 young people (16–31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher. Results: Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self‐blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement‐based care was seen as an important method of improving shared decision‐making between young people and health professionals; however, to facilitate shared decision‐making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences. Conclusions: These findings will inform the delivery of the further development and implementation of a youth‐specific clinical education and participant information programme for the BMC Youth Model. Patient or Public Contribution: Workshops were facilitated by researchers with lived expertise in mental ill‐health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper. [ABSTRACT FROM AUTHOR]

The main aim of this paper is to explore and discuss the interesting juxtaposition of patient involvement within a standardised Enhanced Recovery After Surgery care programme (ERAS). We address our aim by examining the work and strategies of nursing staff caring for patients during postoperative recovery from surgery, exploring how these two potentially competing priorities might effectively co‐exist within a hospital ward. This was a qualitative exploratory study, with data generated through 42 semi‐structured interviews with patients and nurses who had taken part in an ERAS programme in one of three hospital wards in the United Kingdom, adopting a reflexive thematic approach to data analysis. We shine a light on the work undertaken by patients and nurses during the navigation of postoperative recovery, identifying strategies of collaboration and negotiation during this journey. Furthermore, we also identify and consider patients engaged in peer‐peer support during postoperative recovery. This paper adds to the existing literature and current ways of thinking in relation to the quest for standardised, clinically effective care balanced with the aspirations for individualised, patient‐centred care. This paper also helps inform thinking about the use of care pathways in relation to service delivery, considering how best to initiate and deploy best practice aimed at safe and effective postoperative recovery. [ABSTRACT FROM AUTHOR]

Background: Involving consumers in systematic reviews can make them more valuable and help achieve goals around transparency. Systematic reviews are technically complex and training can be needed to enable consumers to engage with them fully. The Cochrane Common Mental Disorders group sought to engage people with lived experience of mental health problems in the Voice of Experience College, three workshops introducing them to systematic review methods and to opportunities to contribute as Cochrane consumers. We aimed to collectively evaluate the College from the perspective of both facilitators and consumers, to critically reflect on the experience, and to identify how the College could be sustained and spread to other review groups. Methods: This study was a longitudinal qualitative and collaborative evaluation, structured around normalisation process theory. Both facilitators and consumers were involved in not only providing their perspectives but also reflecting on these together to identify key learning points. Results: The workshops were positively evaluated as being engaging and supportive, largely due to the relational skills of the facilitators, and their willingness to engage in joint or two‐way learning. The College suffered from a lack of clarity over the role of consumers after the College itself, with a need for greater communication to check assumptions and clarify expectations. This was not achieved due to pandemic disruptions, which nevertheless demonstrated that resources for involvement were not prioritised as core business during this period. Conclusions: Soft skills around communication and support are crucial to effective consumer engagement. Sustaining involvement requires sustained communication and opportunities to reflect together on opportunities and challenges. This requires committed resources to ensure involvement activity is prioritised. This is critical as negative experiences later in the involvement journey can undermine originally positive experiences if contributors are unclear as to what their involvement can lead to. Open discussions about this are necessary to avoid conflicting assumptions. The spread of the approach to other review groups could be achieved by flexibly adapting to group‐specific resources and settings, but maintaining a core focus on collaborative relationships as the key mechanism of engagement. Patient and Public Contribution: Public contributors were collaborators throughout the evaluation process and have co‐authored the paper. [ABSTRACT FROM AUTHOR]

Background: Involving men and boys as both users and supporters of Family Planning (FP) is now considered essential for optimising maternal and child health outcomes. Evidence on how to engage men and boys to meet FP needs is therefore important. Objectives: The main objective of this review was to assess the strength of evidence in the area and uncover the effective components and critical process‐ and system‐level characteristics of successful interventions. Search Methods: We searched nine electronic databases, seven grey literature databases, organisational websites, and the reference lists of systematic reviews relating to FP. To identify process evaluations and qualitative papers associated with the included experimental studies, we used Connected Papers and hand searches of reference lists. Selection Criteria: Experimental and quasi‐experimental studies of behavioural and service‐level interventions involving males aged 10 years or over in low‐ and middle‐income countries to increase uptake of FP methods were included in this review. Data Collection and Analysis: Methodology was a causal chain analysis involving the development and testing of a logic model of intervention components based on stakeholder consultation and prior research. Qualitative and quantitative data relating to the evaluation studies and interventions were extracted based on the principles of 'effectiveness‐plus' reviews. Quantitative analysis was undertaken using r with robust variance estimation (RVE), meta‐analysis and meta‐regression. Qualitative analysis involved 'best fit' framework synthesis. Results: We identified 8885 potentially relevant records and included 127 in the review. Fifty‐nine (46%) of these were randomised trials, the remainder were quasi‐experimental studies with a comparison group. Fifty‐four percent of the included studies were assessed as having a high risk of bias. A meta‐analysis of 72 studies (k = 265) showed that the included group of interventions had statistically significantly higher odds of improving contraceptive use when compared to comparison groups (odds ratio = 1.38, confidence interval = 1.21 to 1.57, prediction interval = 0.36 to 5.31, p < 0.0001), but there were substantial variations in the effect sizes of the studies (Q = 40,647, df = 264, p < 0.0001; I2 = 98%) and 73% was within cluster/study. Multi‐variate meta‐regression revealed several significant intervention delivery characteristics that moderate contraceptive use. These included community‐based educational FP interventions, interventions delivered to women as well as men and interventions delivered by trained facilitators, professionals, or peers in community, home and community, or school settings. None of the eight identified intervention components or 33 combinations of components were significant moderators of effects on contraceptive use. Qualitative analysis highlighted some of the barriers and facilitators of effective models of FP that should be considered in future practice and research. Authors' Conclusions: FP interventions that involve men and boys alongside women and girls are effective in improving uptake and use of contraceptives. The evidence suggests that policy should continue to promote the involvement of men and boys in FP in ways that also promote gender equality. Recommendations for research include the need for evaluations during conflict and disease outbreaks, and evaluation of gender transformative interventions which engage men and boys as contraceptive users and supporters in helping to achieve desired family size, fertility promotion, safe conception, as well as promoting equitable family planning decision‐making for women and girls. [ABSTRACT FROM AUTHOR]

Introduction: Patient and public involvement is vital for high‐quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice‐based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. Methods: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. Results: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. Conclusion: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. Patient or Public Contribution: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co‐production of interventions and information material, and the interpretation of data. [ABSTRACT FROM AUTHOR]

Background: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. Methods: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). Findings: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty‐four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher‐income countries (n = 51). Community‐based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist‐utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). Conclusions: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. Patient and Public Contribution: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. Review Registration: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/). [ABSTRACT FROM AUTHOR]

Background: Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality. Methods: This rapid review was pre‐registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer‐reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE‐II) Instrument. Data was analysed using descriptive analyses and narrative synthesis. Results: We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context‐specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods. Conclusion: This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods. Patient and Public Involvement: Adolescent co‐researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer‐reviewed articles at the title and abstract screening stage and 10% at full‐text screening stage. C. W. extracted data from 10% of the included guidelines. Both co‐researchers reviewed and shared their feedback on the article and are co‐authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review. [ABSTRACT FROM AUTHOR]

This paper explores how research advisory groups can be a vehicle for youth activism. It draws on our experiences with young activists, aged 15–26 years, in India and Brazil, who were advisors on a research project focused on youth livelihoods in cities. These young people played a vital role in supporting youth researchers, identifying research themes and developing engagement and advocacy strategies. Through this paper, we explore how the Youth Expert Group advisory model evolved differently in each location and examine how these were shaped by the context, the 'adult' research team and the youth activists themselves. A critically reflexive response in intergenerational partnership is essential to support youth activists in research activities. [ABSTRACT FROM AUTHOR]

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from 'epistemic injustices' – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non‐psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones. [ABSTRACT FROM AUTHOR]

Background: When parents bring their child to appointments and then adhere to agreed speech and language therapy (SLT) recommendations, there is the potential to increase the intensity of the intervention, support generalization and improve outcomes. In SLT, however, little is known about factors that may promote attendance or adherence. Studies in other clinical areas such in medicine, psychology and physiotherapy have identified risk factors for non‐attendance or non‐adherence that are multifactorial and variable dependent on, for example, population and intervention. Aims: To identify rates of non‐attendance and non‐adherence, and to identify parent or child factors associated with parent involvement in intervention for children under 5 years of age receiving SLT. Methods: Parents completed questionnaires at two time points assessing the domains of parents' beliefs (problem perceptions, self‐efficacy), personal circumstances (socio‐demographics, family functioning), treatment experience and child factors. Predictors of parent attendance and adherence were identified through multiple regression analyses. Non‐attendance rates were identified via local health records and non‐adherence ascertained using a specific parent‐reported measure within the treatment experience domain. Results: Participants (N = 199) were predominantly mothers, and were ethnically and socio‐economically diverse, speaking a wide range of languages. Their children presented with a range of speech, language communication needs (SLCN). The rate of non‐attendance was 25% and the main predictors of non‐attendance were maternal age, education level and two factors within the parent beliefs domain. This model explained 40% of the variance in attendance. The rate of non‐adherence in this cohort was 26% with parental rating of the importance of a recommendation and self‐efficacy beliefs predicting adherence; this explained 56% of the variance in adherence to SLT recommendations at home. Conclusions & Implications: Our research has provided preliminary evidence of the influence of parents' beliefs, personal circumstances and treatment experiences on their involvement in their child's therapy. Speech and language therapists should consider factors impacting attendance and adherence to treatment and explore parental perceptions of their child's SLCN before embarking on an intervention, a foundation for collaborative practice. A possible limitation of this study is that the levels of attrition in our sample led to generally high measured rates of participation, which should be considered in future studies. Future research should explore adherence in treatments with varying doses, with different types of SLCN or interventions and in different settings. WHAT THIS PAPER ADDS: What is already known on the subject: It is acknowledged that parent involvement in their child's therapy, such as attending and adhering to recommendations, is important but little is known about the rates of involvement and what factors may be associated with attendance and adherence in SLT. Qualitative research has explored parental involvement suggesting that beliefs about an intervention may be pertinent. Extensive research in other clinical areas suggest multiple and varied factors are influential and further exploration of particular populations and interventions is necessary. What this paper adds to the existing knowledge: This study identified rates of parental non‐attendance and non‐adherence in a cohort of predominantly mothers of children under the age of 5 years. It is the first study to measure parent adherence in SLT and identify factors that are associated parental adherence to SLT recommendations. It adds to the small body of SLT specific research in understanding risk factors for non‐attendance. What are the potential or actual clinical implications of this work?: This study highlights the need for a speech and language therapist to consider and explore parents' perspectives of their child's SLCN as a part of achieving collaboration with a parent in order to achieve the best outcomes. It provides a foundation for further systematic research into parent involvement with the ultimate aim of enhancing outcomes for children with SLCN. [ABSTRACT FROM AUTHOR]

Background: Co‐design is becoming common practice in the development of mental health services, however, little is known about the experience of such practices, particularly when young people are involved. Objective: The aim of this study was to conduct a process evaluation of the co‐design which was undertaken for the development of an intervention for youth and adolescents at risk of suicide. This paper briefly outlines the co‐design process undertaken during a COVID‐19 lockdown and then focuses on a qualitative evaluation of the experience of taking part in a co‐design process. Setting and Participants: The evaluation involved young consumers of a public youth mental health service, their carers/parents and service delivery staff who had taken part in the co‐design process. Method: This study used follow‐up semistructured interviews with the co‐design participants to explore their experience of the co‐design process. Inductive thematic analysis was used to draw out common themes from the qualitative data. Results: It was found that despite the practical efforts of the project team to minimise known issues in co‐design, challenges centred around perceptions regarding power imbalance, the need for extensive consultation and time constraints still arose. Discussion: Despite these challenges, the study found that the co‐design provided a human‐centred, accessible and rewarding process for young people, parents and staff members, leaving them with the feeling that they had made a worthwhile contribution to the design of the new service, as well as contributing to changing practice in service design. Conclusion: With sensitivity and adaptation to usual practice, it is possible to include young people with suicidal ideation, their parents/carers and professional staff in a safe and effective co‐design process. Patient and Public Contribution: The authors would like to thank and acknowledge the young people with a lived experience and their carers who participated in the co‐design process and research evaluation component of this study. We also wish to thank the clinical staff, peer workers and family peer workers who participated in this research. [ABSTRACT FROM AUTHOR]

Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]

Introduction: The implementation and evaluation of patient participation to obtain high‐quality transitional care for older people is an international priority. Intermediate care (IC) services are regarded as an important part of the patient's pathway from the specialist to the primary care levels, bridging the gap between the hospital and the home. Patients may experience varying capacities and conditions for patient participation. Yet, few tools for evaluating patients' preferences for patient participation within IC services are at hand. Accordingly, further knowledge is needed to understand and scaffold processes for patient participation in IC. Therefore, the aim of this project was to translate, validate and pilot test the Patient Preferences for Patient Participation (the 4Ps) with patients in IC services in Norway. Methods: This project comprised two phases: (1) a careful translation and cultural adaptation process, followed by a content validity trial among 15 patients and staff in Norwegian IC and (2) a cross‐sectional survey of the instrument with 60 patients admitted to IC. Results: The translation between Swedish and Norwegian required no conceptual or contextual adaptations. The subsequent cross‐sectional study, designed as a dialogue between the patients and staff, revealed that only 50% of the participants received a sufficient level of patient participation based on their preferences, mostly indicating that patients were receiving less‐than‐preferred conditions for engaging in their health and healthcare issues. Conclusion: The 4Ps instrument was deemed suitable for measuring patient participation based on patient preferences in the IC context and was feasible for both healthcare professionals and patients to complete in an interview when arriving at and leaving services. This may support person‐centred communication and collaboration, calling for further research on what facilitates patient participation and the implementation of person‐centred services for patients in IC. Patient or Public Contribution: First, the current paper is part of the IPIC study (i.e., the implementation of patient participation in IC). Influenced by a James Lind Alliance process, the study addresses research uncertainties identified by patients, next of kin, staff and researchers in the cocreation process. Second, cognitive interviewing was conducted with 15 representatives of the target population: seven patients receiving IC services, one home‐dwelling previous IC patient (altogether four women and four men, most of them 80 years or older) and seven healthcare staff working in IC services. The interviews determined the relevance, comprehensiveness and clarity of the 4Ps. Finally, 60 patients admitted to IC took part in the cross‐sectional study. [ABSTRACT FROM AUTHOR]

Introduction: Ensuring adequate representation and the active, meaningful and visible involvement of groups likely to be most impacted by research findings and/or the lack of research inquiry are increasingly acknowledged. This is particularly relevant for Black racially minoritised groups who are less visible as research participants and in patient and public involvement and engagement (PPIE) roles. Our viewpoint article sought to discuss reflections and insights on their involvement experience, with particular attention to perceived barriers and enablers to PPIE involvement. Methods: Qualitative data were collected as part of facilitated group discussions from nine Black racially minoritised experts‐by‐experience involved in a PPIE advisory group. Data were subjected to thematic analysis to identify key themes. Results: Five main themes were identified that reflected factors linked to practicalities: role unfamiliarity, benefits for the larger community, acknowledgement of previous harm and mental health stigma. Conclusion: Given the existence and importance of the direct links between research and service and treatment innovations in health and social care, ensuring that those from underrepresented Black racial communities are meaningfully and equitably supported to have roles in advising and influencing research programmes should be prioritised and an ongoing consideration for different stakeholders, including research funders, researchers, healthcare providers and community leaders/representatives. Patient or Public Contribution: This viewpoint article is a collaboration between lived experience stakeholders and researchers, comprising conceiving the original idea for the paper, its conceptualisation and data generation and the coproduction including editing of the manuscript. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under‐reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation. Methods: The scoping review was conducted in accordance with PRISMAScR and included any study published in a peer‐reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed‐method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers. Results: Of the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion. Conclusion: Healthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation. Patient or Public Contribution: One of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper. [ABSTRACT FROM AUTHOR]

Through the creation of safe spaces in which to explore and challenge dominant negative views of disabled children and young people, this co‐written paper presents unique insight into the meaning and impact upon disabled young people's lives of medical lenses and deficit models of disability. Bodies of work and dominant debates in medical sociology, disability studies and childhood studies have so far largely overlooked the experiences and positioning of disabled children and young people and have rarely involved them in the development or discussion of theory. Drawing on empirical data, and through a series of creative, reflective workshops with a UK‐based disabled young researchers' collective (RIP:STARS), this paper discusses areas of theoretical importance identified by the disabled young researcher collective—the validation of their lives, negotiation of their identity and acceptance in society. The implications, and possibilities, of platforming disabled children and young people's voices in theoretical debates are deliberated and are achieved through the yielding of privileged academic voice and the development of a symbiotic, genuine partnership which resonates with disabled young people and recognises them as experts in their own lives. [ABSTRACT FROM AUTHOR]

Introduction: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle and imaging data from European cohorts. Stakeholder activities of Lifebrain—organized in a separate work package—included organizing stakeholder events, investigating public perceptions of brain health and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. Methods: Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders and stakeholders' feedback at stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach, and results from evaluation forms were summarized after reviewing the frequency of responses. Results: Consortium researchers and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized data collection on brain health perceptions and the production of papers and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest and research results relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and challenges in communicating complex scientific issues in lay language and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints and insufficient communication between researchers and stakeholders. Conclusion: Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. Public Contribution: Patient organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration. [ABSTRACT FROM AUTHOR]

Background and Aim: It is widely acknowledged that children should participate in healthcare decisions, service development and even setting research agendas. Dental traumatology is a major component of paediatric dentistry practice and research. However, little is known about young patients' contribution to new knowledge in this field. The aim of the study was to establish the extent to which children are involved in contemporary dental trauma research and to evaluate the quality of the related literature.Material and Methods: A systematic review of the dental trauma literature was conducted from 2006 to 2014. The electronic databases, MEDLINE and Scopus, were used to identify relevant studies. The selected papers were independently examined by five calibrated reviewers. Studies were categorized by the degree of children's involvement and appraised using a validated quality assessment tool.Results: The initial search yielded 4374 papers. After application of the inclusion and exclusion criteria, only 96 studies remained. Research on children accounted for 87.5% of papers, and a proxy was involved in 4.2%. Children were engaged to some degree in only 8.3% of studies, and there were no studies where children were active research participants. In the quality assessment exercise, papers scored, on average, 57% (range = 14-86%).Conclusion: There is scope to encourage more active participation of children in dental trauma research in the future. Furthermore, there are some areas where the quality of research could be improved overall. [ABSTRACT FROM AUTHOR]

Background: To improve harm prevention, patient engagement in safety at the direct care level is advocated. For patient safety to most effectively include patients, it is critical to reflect on existing evidence, to better position future research with implications for education and practice. Methods: As part of a multi‐phase study, which included a qualitative descriptive study (Duhn & Medves, 2018), a scoping review about patient engagement in safety was conducted. The objective was to review papers about patients' attitudes and behaviours concerning their involvement in ensuring their safe care. The databases searched included MEDLINE, CINAHL and EMBASE (year ending 2019). Results: This review included 35 papers about "Patient Attitudes" and 125 papers about "Patient Behaviours"—indicative of growing global interest in this field. Several patterns emerged from the review, including that most investigators have focused on a particular dimension of harm prevention, such as asking about provider handwashing, and there is less known about patients' opinions about their role in safety generally and how to actualize it in a way that is right for them. While patients may indicate favourable attitudes toward safety involvement generally, intention to act or actual behaviours may be quite different. Conclusion: This review, given its multi‐focus across the continuum of care, is the first of its kind based on existing literature. It provides an important international "mapping" of the initiatives that are underway to engage patients in different elements of safety and their viewpoints, and identifies the gaps that remain. [ABSTRACT FROM AUTHOR]

Aims: Across higher education, systems and policies explicitly address the impact of research. This paper contributes to the impact and engagement discussion from a regional, rural and remote perspective. We focus on how impact and engagement fit with regional, rural and remote research and explore strategies that can be employed to enhance impact and engagement in a rural health research context. Context: The impact agenda in Australia is a response to a worldwide call for demonstrable change or potential for change resulting from university research. As funding models evolve to integrate impact, there are increased pressures for universities and academics to plan for, evidence and report on it. The current lack of focus on impact in regional, rural and remote research may further disadvantage regional, rural and remote researchers' prospects for career progression and funding opportunities. Approach: Ignoring or avoiding impact will marginalise rural researchers and research. We discuss the definitions of impact and engagement as they apply to rural research and argue that engagement and impact must be commensurate with employment conditions. To platform regional, rural and remote impact, we provide strategies to assist researchers and administrators in building impact and engagement into their research and academic culture. Conclusion: The message to researchers is that impact is here to stay. The high levels of rural engagement can lead to impact, but we need to be clever at providing clear evidence to make that visible. [ABSTRACT FROM AUTHOR]

Objectives: Ward round communication is essential to patient care. While communication in general with older patients is well described, little is known about how communication with older patients and their relatives at ward rounds can be optimised. Hence, this scoping review aims to provide an overview of ward round communication with older patients. Furthermore, the review investigates barriers to the optimal communication. Such an overview would provide a point of departure for developing future health care professionals' education in ward round communication training. Method: A scoping review was performed by searching CINAHL, Embase, MEDLINE, and PubMed databases. The search strategy included terms synonymous with "ward rounds" and "older patients." We included studies regarding communication with patients above 65 years during ward rounds. Thematic analysis was applied. Results: Seven of the 2322 identified papers were included in the present review. Thematic analysis revealed three overall themes: Communication strategy, frailty and patient participation, and organisational and age norm challenges. Barriers included frailty‐related patient characteristics and imbalance of power between physicians and patients. Papers focused mainly on what the optimal ward round communication should include rather than how it should be performed. Conclusion: Characteristics of frail older patients and organisational barriers challenge effective and safe ward round communication. Little is known about how ward round communication with frail older patients and their relatives can be optimised. [ABSTRACT FROM AUTHOR]

Background: Normal physiologic birth has been shown to result in optimal maternal–infant outcomes, but the concept of physiologic birth is continually evolving. Midwives play an important role in advocating for normal physiologic birth; however, their perceptions of what this approach entails have not been systematically appraised. Objective: In this qualitative review, we aimed to examine midwives' perceived meanings of "normal physiologic birth" and to describe their experiences facilitating such births. Methods: Five electronic databases were searched, and 26 qualitative papers were included, representing a total of 433 midwives from different backgrounds (i.e., independent, home‐based, community‐based, and hospital‐based). Eligible papers were assessed for quality, and then data were coded and synthesized thematically. Results: Four highly connected themes were generated: (1) the midwife: fundamental beliefs; (2) the woman: empowerment and advocacy; (3) the environment: ambience and culture; and (4) the team: need for institutional support and recognition. The fundamental beliefs of midwives, such as their perceived role and definition of normal physiologic birth and their self‐confidence, influence practice styles and contribute to personal and professional development. Midwives often advocate for a person‐centered approach that encouraged women's and other birthing person's autonomy and involvement in shared decision‐making. The midwife–client relationship is also central. Most importantly, a conducive birthing environment and an inclusive workplace culture that encourages interprofessional support, collaboration, and recognizes midwifery practices were identified as crucial in providing optimal conditions for the facilitation of physiologic birth. Conclusions: This review provides healthcare policymakers and institutions fresh impetus to evaluate and revise as needed current workplace policies to be more inclusive and supportive of midwifery practices and physiologic birth. [ABSTRACT FROM AUTHOR]

Background: Community‐based health interventions have been implemented as a key strategy for achieving improved health outcomes in Ghana. Effectiveness, however, largely depends on the successful implementation of patient–public engagement (PPE). Although several PPE studies have been conducted in Ghana, little research has been done to understand the specific role of PPE in the context of implementing community‐based health programmes. This paper, therefore, examines the extent of PPE implementation in three selected community‐based health programmes (Community‐based Health Planning and Service [CHPS], Community‐based Maternal and Child Health and Buruli Ulcer) to understand their specific effects on health outcomes. Methods: Three focus groups, involving 26 participants, were held in three districts of the Ashanti region of Ghana. Participants were mainly health service users involving community health committee members/volunteers, residents and health professionals. They were invited to participate based on their roles in the design and implementation of the programmes. Participants focused on each of Rifkin's spider‐gram components. Data were transcribed and analysed descriptively using NVIVO 12 Plus. Results: PPE implementation was found to be extensive across the three programmes in specific areas such as organisation and resource mobilisation. PPE was more restricted in relation to community needs assessment, leadership and management, particularly for the CHPS and Buruli Ulcer programmes. Conclusion: Findings suggest that benefits from community‐based health interventions are likely to be greater if PPE can be widely implemented across all dimensions of the spider‐gram framework. [ABSTRACT FROM AUTHOR]

Objectives: To explore the perceptions of patients and healthcare professionals on Raman‐faecal immunochemical test (FIT) as an alternative test for colorectal cancer exclusion in primary care. Design: Semi‐structured interviews within a feasibility study. Setting: Patients presenting to primary care with colorectal symptoms and healthcare professionals working in primary and secondary care. Participants: A total of 23 patients and 12 healthcare professionals. Methods: Patient participants were asked to complete a novel combined Raman‐FIT test before being seen in secondary care. This study sought their opinions about the test. We also sought the views of healthcare professionals. Findings: Patients and healthcare professionals agreed that Raman‐FIT was a suitable test to be given in primary care. It aligned with routine practice and was a simple test for most patients to complete. Conclusions: Patients are willing and able to complete the Raman‐FIT test in primary care. Raman‐FIT may accelerate access to diagnosis with the potential to improve cancer outcomes. Patient and Public Involvement: Lay members (J. H. and I. H.) with experience and knowledge of colorectal cancer and screening contributed to developing, undertaking, and disseminating all aspects of the research. They were supported to collaborate as equal members of the research team. They were involved in developing the study as coapplicants, using personal experience to ensure that the research and its methods were relevant to the patient and public needs. Both prepared participant information sheets, coanalysed data, and contributed to study reporting and dissemination through papers, conference presentations and a lay summary. [ABSTRACT FROM AUTHOR]

Background: Engagement is recognized as an important factor in aphasia treatment response and outcomes, yet gaps remain in our understanding of engagement and practices that promote engagement from the client perspective. Aims: The purpose of this phenomenological study was to explore how clients with aphasia experience engagement during their inpatient aphasia rehabilitation. Methods & Procedures: An interpretative phenomenological analysis approach guided the study design and analysis. Data were collected through in‐depth interviews with nine clients with aphasia, recruited through purposive sampling, during their inpatient rehabilitation admission. Analysis was completed using a variety of analytic techniques including coding, memoing, triangulation between coders and team discussion. Outcomes & Results: The analysis revealed that for clients with aphasia in the acute phrase of recovery, the rehabilitation process resembles travelling on a journey through a foreign land. Successful engagement in the journey was accomplished when one had a therapist who served as a trusted guide and was able to be a friend, invested, adaptable, a co‐creator, encouraging and dependable. Conclusions & Implications: Engagement is a dynamic, multifaceted and person‐centred process involving the client, provider and rehabilitation context. Findings from this work have implications for measuring engagement, training student clinicians to be skilled facilitators in engaging their clients and implementing person‐centred practices that promote engagement within clinical settings. WHAT THIS PAPER ADDS: What is already known on the subject: Engagement is recognized as an important factor in rehabilitation treatment response and outcomes. Prior literature suggests that the therapist plays a critical role in facilitating engagement within the client–provider relationship. Communication impairments associated with aphasia may negatively impact a client's ability to develop interpersonal connections and participate in the rehabilitation process. There is a dearth of research directly exploring the topic of engagement in aphasia rehabilitation, particularly from the perspective of clients with aphasia. Capturing the client perspective can provide novel insights regarding practices to foster and maintain engagement in aphasia rehabilitation. What this paper adds to existing knowledge: This interpretative phenomenological study revealed that for individuals with aphasia in the acute phase of recovery, the rehabilitation process resembles travelling on a sudden and foreign journey. Successful engagement in the journey was accomplished when one had a therapist who served as a 'trusted guide' and was able to be a friend, invested, adaptable, a co‐creator, encouraging and dependable. Through the client experience, engagement is seen as a dynamic, multifaceted and person‐centred process involving the client, provider and rehabilitation context. What are the potential or actual clinical implications of this work?: The current study highlights the complexity and nuance of engagement within the rehabilitation context, which has implications for measuring engagement, training student clinicians to be skilled in engaging their clients and implementing person‐centred practices that promote engagement within clinical settings. It is necessary to recognize that client and provider interactions (and thus engagement) are embedded in and influenced by the broader healthcare system. With this in mind, a patient‐centred approach to engagement in aphasia care delivery cannot be achieved through individual efforts only and may require prioritization and action at the systems level. Future work is needed to explore barriers and facilitators to enacting engagement practices, in order to develop and test strategies to support practice change. [ABSTRACT FROM AUTHOR]

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and similarities, although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision‐making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation. [ABSTRACT FROM AUTHOR]

Background: Mil Días (A Thousand Days) is a programme for the first thousand days of life, from gestation to 2 years of age, targeted at highly vulnerable children and/or mothers and pregnant women. The programme was implemented in August 2015 in the municipality of San Miguel, in Argentina. Mil Días is designed in a holistic and intersectoral way. The main form of intervention is through home visits, but other benefits are available depending on the 51 vulnerability criteria by which participants are admitted to the programme, most of which are related to health issues. Exits of the programme occur when the mother and/or child have reversed the deprivation/s of the entrance‐criteria. Methods: This paper provides an analysis of the programme's primary data between August 2015 and May 2019, with a total of 1,111 programme participants. First, we perform a statistical analysis of the targeted population of the programme. Second, using a logistic regression, we study factors associated to the withdrawal from the programme. Third, using survival analysis, we study the correlates of time to graduation from the programme. Results: We find that the programme is well‐targeted, as participants exhibit higher deprivation levels than those exhibited by beneficiaries of social programmes in general in the same municipality. We also find that programme participants in situations of most extreme vulnerability are more likely to abandon the programme and that successful exits from the programme take longer for more complex cases. Conclusions: Mil Días–San Miguel is a programme for early childhood development in Argentina, which was pioneer when it was first introduced. It is well targeted and exhibits encouraging results despite complex cases taking longer to sucessfully exit the programme. In addition, the poorest poor participants are more likely to abandon the programme and so additional actions could be taken to retain them, as intended by the 'Leave No One Behind' 2030 commitment. [ABSTRACT FROM AUTHOR]

Aim: The prevalence of mental health difficulties and the demand for psychological support for students in higher education (HE) appear to be increasing. Online therapy is a widely accessible resource that could provide effective support; however, little is known about such provision. The aim of this study was therefore to answer the research question 'What factors serve to influence higher education students' levels of engagement with online therapy?' Method: A systematic review of qualitative scholarly and peer‐reviewed literature was conducted across 10 databases. Six papers met the inclusion criteria, were assessed for quality and were analysed using thematic synthesis. Findings: Factors that serve to motivate HE students to engage with online therapy included the perception that it might enhance the quality of the therapeutic relationship, that it would facilitate more autonomy in the work, and that it might enable them to be anonymous and avoid face‐to‐face contact. In contrast, demotivating factors were primarily practical in nature. Fitting therapeutic work into their busy lives, technological challenges and persisting mental health stigma proved important factors. Conclusion: This review synthesises the reasons why HE students might engage with or withdraw from online therapy. It highlights that students appear to view online therapy positively, but they can be inhibited by both personal and practical issues. Therapeutic services therefore need to ensure that information about the work they offer online is clear and transparent and that the platforms they work on are secure and stable. Finally, the need for further research, to keep abreast of technological developments, is recommended. [ABSTRACT FROM AUTHOR]