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Background: Within the contemporary policy turn towards co-production and co-research in Sweden, older people, practitioners and researchers alike have expressed uncertainty about how to undertake co-research. Moreover, scepticism persists about the merits and contributions of co-research and co-production to research and service development. In this paper, we aim to describe a co-research model developed with older care-experienced lay co-researchers and explore the utility of our model's outcomes to social care research and practice. Method: In a Participatory Action Research project, we established a team of three co-researchers by professional experience and eight lay co-researchers by lived experience who were over age 75. Our team undertook a complete study cycle from inception and funding through to knowledge exchange and dissemination. Our process lasted one year and comprised three phases: the group alone establishing collective knowledge, testing knowledge in peer interviews with acquaintances, exchanging knowledge in events with multi-sector actors. We generated and analysed data concurrently in fortnightly workshops and round-table meetings using procedures inspired by framework analysis to produce themes illustrated by vignettes. Findings: We highlight our co-research model's utility to social research, policy and practice under three themes. Expressly, how our approach (1) reaches and engages older people who are isolated at home, (2) generates out-of-the box thinking and innovative solutions for service development and research, (3) recognizes and benefits from older people's authentic experience and knowledge. We critically reflect upon these three themes and the conditions that lead towards or away from the adoption of key co-research principles. Conclusions: Public services and research and development units working in the interests of older people can take inspiration from our co-research model when seeking to meet the challenges brought by new reforms towards closer community involvement. Despite messiness in the process, integrating and embedding principled co-research and co-production can bring clarity and structure to the issues that matter most to older people, and draw organisations closer to the communities they serve. Plain English summary: In this paper we respond to the call for clearer descriptions of how co-research is carried out and contributes to developing eldercare services and building new knowledge. Our co-research team includes three researchers with professional experience of health and social care for older people, and eight researchers aged over 75 with lived experience of giving or receiving formal or informal care. Over one year we conducted a whole research cycle (from funding and study design, to presenting findings and planning new research) in a three-phase process: (1) the group worked alone to pool their knowledge on a topic that was important to them, (2) they tested this knowledge by interviewing other older people, and (3) they shared this knowledge with professionals in research and development units, eldercare services and wider stakeholder organisations. In undertaking and describing our co-research we found that our way of working was useful for social care research and practice in Sweden, which faces new legislative and policy reforms. Specifically, we saw that our co-research model reached and engaged with older people that services often consider hard to reach due to isolation at home. Moreover, our model gave us a deepened understanding of issues that mattered which led to out-of-the-box thinking that could contribute fresh ideas to services aiming to solve complex problems. Finally, for research to genuinely benefit from older people's lived experience, older people must have influence at the earliest opportunity in a flexible approach that breaks intergenerational taboos and provides space for knowledge to flourish. [ABSTRACT FROM AUTHOR]

Background: Rehabilitation is considered paramount for enhancing quality of life and reducing healthcare costs. As a result of healthcare reforms, Norwegian municipalities have been given greater responsibility for allocating rehabilitation services following discharge from hospital. Individual decision letters serve as the basis for implementing services and they have been described as information labels on the services provided by the municipality. They play an important role in planning and implementing the services in collaboration with the individual applicants. Research indicates that the implementation of policies may lead to unintended consequences, as individuals receiving municipal services perceive them as fragmented. This perception is characterised by limited user involvement and a high focus on body functions. The aim of this study was to examine how municipal decision letters about service allocation incorporate the recommendations made in the official national guideline and reflect a holistic approach to rehabilitation, coordination and user involvement for individuals with comprehensive needs. Methods: The decision letters of ten individuals with moderate to severe brain injury allocating rehabilitation services in two municipalities were examined. It was assessed whether the content was in accordance with the authorities' recommendations, and a discourse analysis was conducted using four tools adapted from an established integrated approach. Results: The letters primarily contained standard texts concerning legal and administrative regulations. They were predominantly in line with the official guideline to municipal service allocation. From a rehabilitation perspective, the focus was mainly on medically oriented care, scarcely referring to psychosocial needs, activity, and participation. The intended user involvement seemed to vary between active and passive status, while the coordination of services was given limited attention. Conclusions: The written decision letters did fulfil legal and administrative recommendations for service allocation. However, they did not fulfil their potential to serve as a means of conveying rehabilitation issues, such as specification of the allocated services, a holistic approach to health, coordination, or the involvement of users in decision processes. These elements must be incorporated throughout the allocation process if the policies are to be implemented as intended. Findings can have international relevance for discussions between clinicians and policy makers. [ABSTRACT FROM AUTHOR]

Background: Psychosocial interventions such as psychoeducation are increasingly being used to treat adult ADHD, both as an alternative and as a supplement to pharmacotherapy. A thorough overview of the literature on psychoeducation for adult ADHD is lacking. The objectives of this scoping review were therefore to identify the characteristics of psychoeducation interventions designed for adults with ADHD, examine how the patient experience or perspective is considered during the intervention's development and implementation, determine the typical themes covered, and explore how 'psychoeducation' is defined in these interventions. Methods: A comprehensive search was performed to identify records in MEDLINE, Embase, PsycINFO, Web of Science, Cochrane CENTRAL, AMED, and ClinicalTrials.gov. Two or more reviewers were included in every step of the screening process and the final selection of included studies. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist (Supplementary Material 1) was used to report the results, and the framework developed by Arksey and O'Malley was used as a guide throughout the scoping process. Results: A total of 2121 records were identified through the literature search. After screening and full-text analysis, ten studies were included for final analysis. Most studies were conducted in Europe and followed a group format. Seven main themes were identified: Information about the diagnosis, treatment options, somatic health and ADHD, the insider perspective, ADHD and social life, coping and psychological skills, and ADHD and work. There was significant overlap in themes covered, but coverage of each theme varied. Themes deemed important by newer research, such as sexuality and gender-specific issues, were missing. Only one intervention involved patients in its development and implementation, and two interventions involved family members. There was variation in how psychoeducation was defined in the included studies, and the implications of this are discussed. Conclusion: The literature on psychoeducation for adult ADHD is not ready for any systematic effect estimation. Before such estimations are conducted, a shared understanding and definition of psychoeducation are needed. The involvement of end users in the development and delivery of interventions may aid reach this goal but results from this review indicate that such practices are rare. [ABSTRACT FROM AUTHOR]

Background: Video consultations has been suggested to lower the threshold for child and adolescent mental healthcare treatment. This study explores how young people receiving child welfare services experience video consultations in child and adolescent mental healthcare. The study is part of a larger Norwegian study of access to health services for this target group. Methods: The study has a mixed methods design including qualitative interviews and a quantitative survey, with young people receiving child welfare services. The qualitative interviews included 10 participants aged 15–19. The survey included 232 participants aged 16–24 of which 36 reported having received video consultations in mental healthcare. The interviews were analysed using thematic analysis. The survey data was presented as frequencies to clarify the distribution of positive and negative perceptions of video consultation. Results: The results show that the participants experienced video consultations as more superficial and less binding, compared to in-person sessions. They raised concerns of the therapeutic relationship, however some found it easier to regulate closeness and distance. In the survey several reported that their relationship with the therapist got worse, and that it was much more difficult to talk on screen. Moreover, a large proportion (42%) claimed that video consultations did not fit their treatment needs overall. However, a minority of the participants found it easier to talk to the therapist on screen. Conclusions: The study reveals important weaknesses and disadvantages of online therapy as experienced by young people receiving child welfare services. It is particularly worrying that their criticism involves the relational aspects of treatment, as children receiving child welfare services often have relational experiences which make them particularly sensitive to challenges in relationships. This study shows that youth involvement in decision making of video consultations in therapy has been rare. Clinicians should be aware of these young people's doubts regarding the quality of video consultations in child and adolescent mental health care. Further studies should examine how user involvement can be incorporated in video consultations in therapy and how this could improve experiences and the quality of video consultations. [ABSTRACT FROM AUTHOR]

Background: Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees' attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. Methods: We used panel data in a longitudinal design study to measure variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0–T1–T2). Mixed models were used to account for dependence of data in persons who participated more than once. Results: In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. Conclusions: This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since—despite the intrinsic value of participating in ERG or MCD—CES inherently aims, and should aim, at improving clinical practices. [ABSTRACT FROM AUTHOR]

Background: User involvement in research has rapidly increased and is often a precondition to obtain research funding. Benefits such as effectiveness and increased relevance of research are described in the literature, but the evidence to support this is weak. Little is known about ageing and health researchers' experiences and perspectives towards user involvement in research, and their attitudes towards user involvement compared to the attitudes of the users involved are largely unknown. To examine researchers' experiences and perspectives of user involvement in research on ageing and health, and to compare their attitudes towards user involvement to the attitudes of older adults in the general population.Methods: A panel study survey was used to elicit responses from researchers in ageing and health as well as from older adults (aged 60 years and older). The researcher sample (N = 64) completed the survey online, while the older adult sample (N = 881) could choose among three different options to complete the survey (online, paper format, telephone). A professional survey company collected the data. Descriptive statistics, exploratory comparisons and descriptive qualitative content analysis were used to analyse the data.Results: More than half (58%) of the researchers had previous experience of involving different categories of users in a wide range of research activities. The most frequent motivation for involving users was to ensure that the research produced is relevant to the target population. A majority (86%) reported benefits, and more than half (59%) described challenges. Differences in attitudes were found between researchers and older adults in the general population.Conclusions: Ageing and health researchers involve users in their research to improve quality and ensure relevance, but there is no consensus among them whether users should be involved in publicly funded research. While several challenges were identified, training, institutional support and resources from funders could alleviate many of these. Findings reveal significant differences in attitudes between older adults in the general population and researchers. Further research with comparable larger samples is needed to confirm and understand the possible consequences such controversy might have and how to solve them. IRRID (International Registered Report Identifier): RR2-10.2196/17759. [ABSTRACT FROM AUTHOR]

Background: Using participatory methods to engage end-users in the development and design of eHealth is important to understand and incorporate their needs and context. Within participatory research, recent social distancing practice has forced a transition to digital communication platforms, a setting that warrants deeper understanding. The aim of this study was to describe the experiences of, and evaluate a digital co-creation process for developing an eHealth tool for people with chronic obstructive pulmonary disease (COPD).Methods: The co-creation was guided by Participatory appreciative action and reflection, where a convenience sample (n = 17), including persons with COPD, health care professionals, relatives and a patient organization representative participated in six digital workshops. User instructions, technical equipment, and skilled support were provided if necessary. Workshops centred around different topics, with pre-recorded films, digital lectures and home assignments to up-skill participants. Process validity, experiences and ownership in the co-creation process were evaluated by repeated respondent validation, member checking, questionnaires and by assessing attendance. Data was analysed quantitatively or qualitatively as appropriate.Results: The co-creators were in general satisfied with the digital format of the workshops. Mean attendance and perceived engagement in workshops was high and the experience described as enjoyable. Engagement was facilitated by up-skilling activities and discussions in small groups. Few had used digital communication previously, and feelings ranging from excitement to concern were expressed initially. Technical issues, mainly audio related, were resolved with support. At completion, skills using equipment and digital platform surpassed expectations. Few disadvantages with the digital format were identified, and advantages included reduced travel, time efficiency and reduced infection risk.Conclusions: Experiences of digital co-creation were overwhelmingly positive, despite initial barriers related to computer naivety and use of digital equipment and platforms. The high level of satisfaction, engagement, attendance rates, and agreement between individual and group views suggests that a digital co-creation process is a feasible method. Several important success factors were identified, such as the provision of information and education on discussion topics in advance of workshops, as well as the smaller group discussions during workshops. The knowledge gained herein will be useful for future digital co-creation processes. [ABSTRACT FROM AUTHOR]

Background: There is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived as challenging by researchers. To actively involve frail older people in research processes in a meaningful way, the knowledge about their own views on what research is must be widened and deepened. Methods: Individual interviews were conducted with 17 frail older men and women with former experience of participation in research studies. Qualitative data were analysed using content analysis. Results: Frail older people's views on what research means are described through the main category; An essentiality beyond one's own competence, which describes research as a complex process that is important for society but difficult to understand. This is described in the sub-categories; A driving force for societal development, A benefit when based on lived experience, A source of knowledge difficult to access and understand, and A respected job filled with responsibilities. Conclusion: Different views on research from the perspective of frail older people show that research is viewed as a complex yet important phenomenon to frail older people. Research was also seen as a natural part in society. Research was viewed as difficult to access and understand. Thus, researchers must train themselves to communicate research findings to the public in an understandable way. To create common understandings through information and education, researchers might be better placed to involve frail older people in a meaningful way and thereby also have the possibility to develop good working practice and relationships with those involved. Plain English summary: It is essential to the make voices of frail older people heard in research. Therefore, there is a growing interest to find ways to involve this group. However, to involve them in research is perceived as challenging for many researchers and frail older people might be excluded without acceptable reasons for exclusion. For frail older people to be involved in research processes, researchers must understand older peoples views, how to engage them and how to make research more inclusive. We therefore interviewed seventeen frail older people about their view of research, i.e., we asked questions on what research is and what it means for them. We found that research is viewed as important and necessary for societal development, but also as a something that is difficult to understand for the interviewed group. The participants did not feel competent or responsible for conducting research, and they respected researchers who they viewed as a group with great knowledge. Another pattern in the interviews was that the participants viewed research on frail older people's everyday issues as important, and that this was an area where they could contribute. What we can learn from these descriptions is that it is important to strive for collaboration that attends to the different experiences and needs of frail older people and support them to understand research findings and make their voices heard in an allowing research environment. [ABSTRACT FROM AUTHOR]

Background: While patient and public involvement (PPI) in clinical trials is beneficial and mandated by some funders, formal guidance on how to implement PPI is limited and challenges have been reported. We aimed to investigate how PPI is approached within a UK Clinical Trials Unit (CTU)'s portfolio of randomised controlled trials, perceived barriers to/facilitators of its successful implementation, and perspectives on the CTU's role in PPI.Methods: A mixed-methods study design, involving (1) an online survey of 26 trial managers (TMs) and (2) Interviews with Trial Management Group members and public contributors from 8 case-study trials. Quantitative survey data were summarised using descriptive statistics and interview transcripts analysed thematically. Two public contributors advised throughout and are co-authors.Results: (1) 21 TMs completed the survey; (2) 19 in-depth interviews were conducted with public contributors (n=8), TMs (n=5), chief investigators (n=3), PPI coordinators (n=2) and a researcher. 15/21 TMs surveyed reported that a public contributor was on the trial team, and 5 used another PPI method. 12/21 TMs reported that public contributors were paid (range £10-50/h). 5 TMs reported that training was provided for public contributors and few staff members had received any formal PPI training. The most commonly reported tasks undertaken by public contributors were the review of participant-facing materials/study documents and advising on recruitment/retention strategies. Public contributors wanted and valued feedback on changes made due to their input, but it was not always provided. Barriers to successful PPI included recruitment challenges, group dynamics, maintaining professional boundaries, negative attitudes to PPI amongst some researchers, a lack of continuity of trial staff, and the academic environment. Successful PPI required early and explicit planning, sharing of power and ownership of the trial with public contributors, building and maintaining relationships, and joint understanding and clarity about expectations/roles. CTUs have an important role to play in supporting recruitment, signposting and coordinating PPI.Conclusions: While highly valuable, PPI in trials is currently variable. PPI representatives are recruited informally, may not be provided with any training and are paid inconsistently across trials. Study findings can help optimise PPI in trials and ensure researchers and public contributors are adequately supported. [ABSTRACT FROM AUTHOR]

Background: This paper presents a user involvement process, called needs-led research, conducted as a part of a doctoral degree project aiming to explore research priorities and, ultimately, to develop a final top 10 list of questions relevant to the field of research. There is evidence of a mismatch between what user groups within a research field find relevant to study and what is actually being done. User involvement is a method that can accommodate this, and there is a growing attention and amount of research in this field based on an understanding that people who receive health care services, and their next of kin and clinicians, are uniquely positioned to contribute to research in order to understand their experiences better and improve the services. This paper presents a user involvement process in a small-scale study, referred to as needs-led research, which concerns the 'performance of the trust model in community home-based health care services'. The process was conducted as part of a doctoral degree project. Method: The needs-led research process is inspired by the James Lind Alliance (JLA), which focuses on bringing together service users, next of kin and clinicians on equal terms to explore research priorities. The process consisted of five-steps, each of which involved representatives from service users, next of kin and clinicians: 1) narrowing down the theme; 2) steering group meeting; 3) gathering input through a survey; 4) data processing and interim priority setting; and 5) final priority setting. Results: Almost 200 participants contributed during the five steps, 294 inputs were gathered, and 35 participants voted for the top 10 list. The top 10 list is presented. Conclusion: This paper provides an example of how user involvement can be employed to devise research questions that are relevant for clinicians, service users, next of kin and service providers concerning the 'performance of the trust model in home-based health care'. It also outlines some strengths and limitations of the process. The needs-led research process shows that user involvement in research is feasible for developing research questions in small-scale studies. We hope that the top 10 list presented will encourage future research to address issues of importance regarding the performance of the trust model in community home-based health care services. Plain English summary: User involvement is a topic that has received increasing attention in research aimed at ensuring relevant and needed knowledge. It can be practised in a variety of ways, and the literature claims that there is no gold standard for how it should be done. This paper presents a user involvement process conducted autumn 2019 to spring 2020, hereby referred to as needs-led research (NLR), inspired by the James Lind Alliance (JLA). The scope of the process is the 'performance of the trust model in community home-based health care services'. The trust model is a new way of organising home-based health care services where small interdisciplinary teams work with the service users and their next of kin on tailoring the services based on the users' answers to the question 'What matters to you?' Through a five-step process, in which representatives of service users, next of kin and clinicians participated in meetings and online surveys, the goal of the NLR process was to explore research priorities and, ultimately, to develop a final top 10 list of questions relevant to the field of research. This paper describes the NLR process and discusses its strengths and limitations. We found the process to be important when identifying relevant research questions concerning a topic on which little research has been conducted, and in which we as researchers have little experience. The final top 10 list is also presented. [ABSTRACT FROM AUTHOR]

Background: Citizen involvement is important for ensuring the relevance and quality of many research and innovation efforts. Literature shows that inadequate citizen involvement poses an obstacle during the research, development, and implementation of assistive technology. Previous studies have addressed the advantages and disadvantages of citizen engagement in health research and technology development, and there is concern about how to ensure valuable engagement to avoid situations where they don't have influence. Frail older adults are often excluded from being active partners in research projects. The overall objective of this commentary is to describe a case where dialogue cafés was used as a method for involving assisted living residents in technology discussions, elaborating on the following research question: In what ways are dialogue cafés useful for directing research and development and for engaging residents in assisted living facilities in assistive technology discussions? Method: Six dialogue cafés with assisted living residents as participants were carried out over a period of 3 years (2016–19). Reports that were written after each café by the group leaders and rapporteurs provide the material for the analyses in this paper. Results: This study demonstrates an example of facilitating user involvement where the participants felt useful by contributing to research and discussions on assistive technology and where this contribution in fact directed the research and development in the overall Assisted Living Project. Conclusion: This study demonstrated that dialogue cafés enable older residents at an assisted living facility to contribute with opinions about their needs and perspectives on assistive technologies. This negates the view of older adults as too frail to participate and demonstrates the importance of including and collaborating with older adults in research. Plain Language Summary: Assistive technology is used to provide older adults with the opportunity to preserve their quality of life and their ability to cope in everyday life live independently longer and enhance participation in everyday life. This commentary describes dialogue cafés as a method for involving residents in an assisted living facility in discussions about assistive technology. It elaborates on how dialogue cafés are useful for directing research and development and for engaging older adults in assistive technology discussions. Six dialogue cafés were held between 2016 and 2019 with residents (aged between 65 to 92) as participants in an assisted living facility in Norway. Reports that were written after each café by the group leaders and rapporteurs provide the material for the analyses in this paper. The study demonstrated that the engagement process was found to be positive by the participants in the dialogue café groups. It also succeeded in directing the research and technology development in the project. The dialogue cafés seemed to demonstrate a two-way learning process for the researchers and the participants. [ABSTRACT FROM AUTHOR]

Background: Over the last decades, many high-income countries have successfully implemented assertive outreach mental health services for acute care. Despite evidence that these services entail several benefits for service users, Germany has lagged behind and has been slow in implementing outreach services. In 2018, a new law enabled national mental health care providers to implement team-based crisis intervention services on a regular basis, allowing for different forms of Inpatient Equivalent Home Treatment (IEHT). IEHT is similar to the internationally known Home Treatment or Crisis Resolution Teams. It provides acute psychiatric treatment at the user's home, similar to inpatient hospital treatment in terms of content, flexibility, and complexity. Methods/design: The presented naturalistic, quasi-experimental cohort study will evaluate IEHT in ten hospitals running IEHT services in different German regions. Within a multi-method research approach, it will evaluate stakeholders' experiences of care, service use, efficacy, costs, treatment processes and implementation processes of IEHT from different perspectives. Quantitative surveys will be used to recruit 360 service users. Subsequently, 180 service users receiving IEHT will be compared with 180 matched statistical 'twins' receiving standard inpatient treatment. Assessments will take place at baseline as well as after 6 and 12 months. The primary outcome is the hospital re-admission rate within 12 months. Secondary outcomes include the combined readmission rate, total number of inpatient hospital days, treatment discontinuation rate, quality of life, psycho-social functioning, job integration, recovery, satisfaction with care, shared decision-making, and treatment costs. Additionally, the study will assess the burden of care and satisfaction with care among relatives or informal caregivers. A collaborative research team made up of researchers with and without lived experience of mental distress will conduct qualitative investigations with service users, caregivers and IEHT staff teams to explore critical ingredients and interactions between implementation processes, treatment processes, and outcomes from a stakeholder perspective. Discussion: By integrating outcome, process and implementation research as well as different stakeholder perspectives and experiences in one study, this trial captures the various facets of IEHT as a special form of home treatment. Therefore, it allows for an adequate, comprehensive evaluation on different levels of this complex intervention. Trial registration: Trial registrations: 1) German Clinical Trials Register (DRKS), DRKS000224769. Registered December 3rd 2020, https://www.drks.de/drks%5fweb/setLocale%5fEN.do; 2) ClinicalTrials.gov, Identifier: NCT0474550. Registered February 9th 2021. [ABSTRACT FROM AUTHOR]

Background: Over the last decades, many high-income countries have successfully implemented assertive outreach mental health services for acute care. Despite evidence that these services entail several benefits for service users, Germany has lagged behind and has been slow in implementing outreach services. In 2018, a new law enabled national mental health care providers to implement team-based crisis intervention services on a regular basis, allowing for different forms of Inpatient Equivalent Home Treatment (IEHT). IEHT is similar to the internationally known Home Treatment or Crisis Resolution Teams. It provides acute psychiatric treatment at the user's home, similar to inpatient hospital treatment in terms of content, flexibility, and complexity. Methods/design: The presented naturalistic, quasi-experimental cohort study will evaluate IEHT in ten hospitals running IEHT services in different German regions. Within a multi-method research approach, it will evaluate stakeholders' experiences of care, service use, efficacy, costs, treatment processes and implementation processes of IEHT from different perspectives. Quantitative surveys will be used to recruit 360 service users. Subsequently, 180 service users receiving IEHT will be compared with 180 matched statistical 'twins' receiving standard inpatient treatment. Assessments will take place at baseline as well as after 6 and 12 months. The primary outcome is the hospital re-admission rate within 12 months. Secondary outcomes include the combined readmission rate, total number of inpatient hospital days, treatment discontinuation rate, quality of life, psycho-social functioning, job integration, recovery, satisfaction with care, shared decision-making, and treatment costs. Additionally, the study will assess the burden of care and satisfaction with care among relatives or informal caregivers. A collaborative research team made up of researchers with and without lived experience of mental distress will conduct qualitative investigations with service users, caregivers and IEHT staff teams to explore critical ingredients and interactions between implementation processes, treatment processes, and outcomes from a stakeholder perspective. Discussion: By integrating outcome, process and implementation research as well as different stakeholder perspectives and experiences in one study, this trial captures the various facets of IEHT as a special form of home treatment. Therefore, it allows for an adequate, comprehensive evaluation on different levels of this complex intervention. Trial registration: Trial registrations: 1) German Clinical Trials Register (DRKS), DRKS000224769. Registered December 3rd 2020, https://www.drks.de/drks%5fweb/setLocale%5fEN.do; 2) ClinicalTrials.gov, Identifier: NCT0474550. Registered February 9th 2021. [ABSTRACT FROM AUTHOR]

Background: Coverage of prevention of mother-to-child transmission of HIV (PMTCT) services has expanded rapidly but approaches to ensure service delivery is patient-centered have not always kept pace. To better understand how the inclusion of women living with HIV in a collective, quality improvement process could address persistent gaps, we adapted a social accountability approach, CARE's Community Score Card© (CSC), to the PMTCT context. The CSC process generates perception-based score cards and facilitates regular quality improvement dialogues between service users and service providers.Methods: Fifteen indicators were generated by PMTCT service users and providers as part of the CSC process. These indicators were scored by each population during three sequential cycles of the CSC process which culminates in a sharing of scores in a collective meeting followed by action planning. We aggregated these scores across facilities and analyzed the differences in first and last scorings to understand perceived improvements over the course of the project (z-test comparing the significance of two proportions; one-tailed p-value ≤ .05). Data were collected over 12 months from September 2017 to August 2018.Results: Fourteen of the fifteen indicators improved over the course of this project, with eight showing statistically significant improvement. Out of the indicators that showed statistically significant improvement, the majority fell within the control of local communities, local health facilities, or service providers (7 out of 8) and were related to patient or user experience and support from families and community members (6 out of 8). From first to last cycle, scores from service users' and service providers' perspectives converged. At the first scoring cycle, four indicators exhibited statistically significant differences (p-value ≤ .05) between service users and service providers. At the final cycle there were no statistically significant differences between the scores of these two groups.Conclusions: By creating an opportunity for mothers living with HIV, health service providers, communities, and local government officials to jointly identify issues and implement solutions, the CSC contributed to improvements in the perceived quality of PMTCT services. The success of this model highlights the feasibility and importance of involving people living with HIV in quality improvement and assurance efforts.Trial Registration: Trial registration: ClincalTrials.gov NCT04372667 retrospectively registered on May 1st 2020. [ABSTRACT FROM AUTHOR]

Background: Trial oversight is important for trial governance and conduct. Patients and/or lay members of the public are increasingly included in trial oversight committees, influenced by international patient and public involvement (PPI) initiatives to improve the quality and relevance of research. However, there is a lack of guidance on how to undertake PPI in trial oversight and tokenistic PPI remains an issue. This paper explores how PPI functions in existing trial oversight committees and provides recommendations to optimise PPI in future trials. This was part of a larger study investigating the role and function of oversight committees in trials facing challenges.Methods: Using an ethnographic study design, we observed oversight meetings of eight UK trials and conducted semi-structured interviews with members of their trial steering committees (TSCs) and trial management groups (TMGs) including public contributors, trial sponsors and funders. Thematic analysis of data was undertaken, with findings integrated to provide a multi-perspective account of how PPI functions in trial oversight.Results: Eight TSC and six TMG meetings from eight trials were observed, and 66 semi-structured interviews conducted with 52 purposively sampled oversight group members, including three public contributors. PPI was reported as beneficial in trial oversight, with public members contributing a patient voice and fulfilling a patient advocacy role. However, public contributors were not always active at oversight meetings and were sometimes felt to have a tokenistic role, with trialists reporting a lack of understanding of how to undertake PPI in trial oversight. To optimise PPI in trial oversight, the following areas were highlighted: the importance of planning effective strategies to recruit public contributors; considering the level of oversight and stage(s) of trial to include PPI; support for public contributors by the trial team between and during oversight meetings.Conclusions: We present evidence-based recommendations to inform future PPI in trial oversight. Consideration should be given at trial design stage on how to recruit and involve public contributors within trial oversight, as well as support and mentorship for both public contributors and trialists (in how to undertake PPI effectively). Findings from this study further strengthen the evidence base on facilitating meaningful PPI within clinical trials. [ABSTRACT FROM AUTHOR]

This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity' - an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research. [ABSTRACT FROM AUTHOR]

Background: In light of the high prevalence of overweight and obesity among adults and the subsequent stigmatization and health consequences, there is a need to develop effective interventions to support lifestyle change. The literature supports the key role of healthcare professionals (HPs) in facilitating self-management through lifestyle interventions for those with chronic conditions. However, there is a lack of knowledge about how HPs practice self-management support (SMS) and user involvement for persons afflicted by overweight or obesity in lifestyle interventions in primary care Healthy Life Centres (HLC). The aim of this study was to explore how HPs provide SMS and what user involvement implies for HPs in HLCs.Methods: An interpretative exploratory design, using qualitative thematic analysis of data from two focus group interviews with ten HPs from eight different HLCs, was conducted.Results: The analysis resulted in one overall theme; A partnership based on ethical awareness, non-judgemental attitude, dialogue and shared responsibility, comprising four interrelated themes: 1) Supporting self-efficacy, self-worth and dignity through an attitude of respect, acknowledgement and generosity, 2) Promoting self-belief and self-perceived health, 3) Collaborating and sharing responsibility, and 4) Being flexible, adjusting and sharing time.Conclusion: HPs in HLCs see service users as equal partners in a collaboration based on shared responsibility, acknowledgement and generosity. In order to help, their practice involves a heightened level of ethical awareness, including a non-judgemental attitude and dialogue. HPs in HLCs have something to teach us about ethical acting and helping persons who are struggling with overweight or obesity to change their lifestyle and regain dignity. They seem to see the service users' existential needs and have learned the art of meeting the other in her/his most vulnerable situation i.e., seeking help for a "wrong lifestyle". It may be time to highlight the need for SMS and user involvement to focus on shared responsibility in partnership rather than personal responsibility. More research is required to explore the conditions for such practice. [ABSTRACT FROM AUTHOR]

Background: Most mental health problems occur in adolescence. There is increasing recognition of user participation and shared decision-making in adolescents' mental healthcare. However, research in this field of clinical practice is still sparse. The objective of this study was to explore healthcare professionals' perspectives on user participation, and opportunities for shared decision-making in Child and Adolescent Mental Health Service (CAMHS) inpatient units. Methods: Healthcare professionals at CAMHS inpatient units participated in three focus group interviews. Fifteen participants with experience with user participation and shared decision-making were recruited from five hospitals in Norway. Results: Five themes emerged: (1) involvement before admission; (2) sufficient time to feel safe; (3) individualized therapy; (4) access to meetings where decisions are made; and (5) changing professionals' attitudes and practices. Conclusion: User participation and shared decision-making require changes in workplace culture, and routines that allow for individualized mental health services that are adapted to adolescents' needs. This calls for a flexible approach that challenges clinical pathways and short-stay hospital policies. The results of this study may inform further work on strengthening user participation and the implementation of shared decision-making. Trial registration Norwegian Regional Committees for Medical and Health Research Ethics, reference number 2017/1195 [ABSTRACT FROM AUTHOR]

Background: While Patient and Public Involvement (PPI) is encouraged throughout the research process, engagement is typically limited to intervention design and post-analysis stages. There are few approaches to participatory data analyses within complex health interventions.Methods: Using qualitative data from a feasibility randomised controlled trial (RCT), this proof-of-concept study tests the value of a new approach to participatory data analysis called Participatory Theme Elicitation (PTE). Forty excerpts were given to eight members of a youth advisory PPI panel to sort into piles based on their perception of related thematic content. Using algorithms to detect communities in networks, excerpts were then assigned to a thematic cluster that combined the panel members' perspectives. Network analysis techniques were also used to identify key excerpts in each grouping that were then further explored qualitatively.Results: While PTE analysis was, for the most part, consistent with the researcher-led analysis, young people also identified new emerging thematic content.Conclusions: PTE appears promising for encouraging user led identification of themes arising from qualitative data collected during complex interventions. Further work is required to validate and extend this method.Trial Registration: ClinicalTrials.gov, ID: NCT02455986 . Retrospectively Registered on 21 May 2015. [ABSTRACT FROM AUTHOR]

Background: Women and their relatives can play an important role in early detection and help seeking for acute perinatal events. Recent UK reports indicate that patient-professional partnership in 'working for safety' can be difficult to achieve in practice, sometimes with catastrophic consequences. This research explored the experiences of women and relatives who had experienced early warning signs about their condition and sought help in escalating care.Methods: Secondary analysis of case study data which included qualitative interviews with 22 women purposively sampled on account of experiencing a step up in care and 4 of their relatives from two NHS Trusts in England during 2010. Analysis focused on the type of safety work participants engaged in, and the opportunities and challenges reported by women and family members when negotiating safety at home and in hospital.Results: Women and relatives took on a dual responsibility for self-diagnosis, self-care and seeking triage, whilst trying to avoid overburdening stretched services. Being informed, however, did not necessarily enable engagement from staff and services. The women's narratives highlighted the work that they engaged in to build a case for clinical attention, the negotiations that took place with health care professionals and the strategies women and partners drew on (such as objective signs and symptoms, use of verbal insistence and repetition) to secure clinical help. For some women, the events left them with a lasting feeling that their concerns had been disregarded. Some described a sense of betrayal and loss of trust in an institution they believed had failed to care for them.Conclusion: The notion of 'safety partnerships' which suggests a sense of equality and reciprocity was not borne out by our data, especially with regards to the experiences of teenage women. To enable women and families to secure a rapid response in clinical emergencies, strategies need to move beyond the provision of patient information about warning signs. Effective partnerships for safety may be supported by system level change such as improved triage, continuity of care, self-referral pathways and staff training to address asymmetries of power that persist within the health system. [ABSTRACT FROM AUTHOR]

Background: Information and communication sources in the healthcare sector are replaced with new eHealth technologies. This has led to problems arising from the lack of awareness of the importance of end-user involvement in eHealth development and of the difficulties caused by using traditional summative evaluation methods. The Constructive eHealth evaluation method (CeHEM) provides a solution to these problems by offering an evaluation framework for supporting and facilitating end-user involvement during all phases of eHealth development. The aim of this paper is to support this process by sharing experiences of the eHealth evaluation method used in the introduction of electronic health records (EHR) in the North Denmark Region of Denmark. It is the first time the fully developed method and the experiences on using the CeHEM in all five phases of a full lifecycle framework is presented.Methods: A case study evaluation of the EHR development process in the North Denmark Region was conducted from 2004 to 2010. The population consisted of clinicians, IT professionals, administrators, and vendors. The study involved 4 hospitals in the region. Data were collected using questionnaires, observations, interviews, and insight gathered from relevant documents.Results: The evaluation showed a need for a) Early involvement of clinicians, b) The best possible representation of clinicians, and c) Workload reduction for those involved. The consequences of not providing this were a lack of ownership of decisions and negative attitudes towards the clinical benefits related to these decisions. Further, the result disclosed that by following the above recommendations, and by providing feedback to the 4 actor groups, the physicians' involvement was improved. As a result they took ownership of decisions and gained a positive attitude to the clinical benefits.Conclusions: The CeHEM has proven successful in formative evaluation of EHR development and can point at important issues that need to be taken care of by management. The method provides a framework that takes care of feedback and learning during eHealth development. It can thus support successful eHealth development in a broader context while building on a well-known success factor: end-user involvement in eHealth development. [ABSTRACT FROM AUTHOR]

Background: User involvement is increasingly important in developing relevant health care services. The aim of this study was to contribute to a deeper understanding of user involvement and patients' experiential knowledge as recognized and incorporated into clinical practice by rehabilitation professionals. Methods: A qualitative design using a grounded theory approach was applied. Data were collected by observations of the interprofessional meetings at two rehabilitation units treating patients with traumatic brain injury and multiple trauma and by individual semi-structured interviews with rehabilitation professionals. Results: The professionals recognized and incorporated user involvement into clinical practice as formal or authentic. Formal user involvement was sometimes considered pro forma. Incorporating patient' experiential knowledge was considered a part of authentic user involvement. Possible gaps between the patients' experiential knowledge and professional expertise were recognized. Challenges included dealing with 'artifacts', sources of information external to the patients' own experiences, and addressing the patients' possibly reduced insight due to trauma. Conclusion: Patients' experiential knowledge was recognized as an essential component of the professionals' knowledge base. The professionals considered user involvement and patients' experiential knowledge as part of their clinical practice. Implementation of user involvement and contribution of patients' experiential knowledge could be improved by understanding the issues raised in practice, such as possible negative consequences of user involvement in form of burdening or disempowering the patients. A better understanding of the characteristics and measures of user involvement is necessary in order to be able to offer its full benefits for both the patients and the professionals. [ABSTRACT FROM AUTHOR]

Background: The involvement of service users in health care provision in general, and specifically in substance use disorder treatment, is of growing importance. This paper explores the views of patients in a therapeutic community for alcohol dependence about clinical assessment, including general aspects about the evaluation process, and the specific characteristics of four measures: two individualised and two standardised.Methods: A focus group was conducted and data were analysed using a framework synthesis approach.Results: Service users welcomed the experience of clinical assessment, particularly when conducted by therapists. The duration of the evaluation process was seen as satisfactory and most of its contents were regarded as relevant for their population. Regarding the evaluation measures, patients diverged in their preferences for delivery formats (self-report vs. interview). Service users enjoyed the freedom given by individualised measures to discuss topics of their own choosing. However, they felt that part of the standardised questions were difficult to answer, inadequate (e.g. quantification of health status in 0-20 points) and sensitive (e.g. suicide-related issues), particularly for pre-treatment assessments.Conclusions: Patients perceived clinical assessment as helpful for their therapeutic journey, including the opportunity to reflect about their problems, either related or unrelated to alcohol use. Our study suggests that patients prefer to have evaluation protocols administered by therapists, and that measures should ideally be flexible in their formats to accommodate for patient preferences and needs during the evaluation. [ABSTRACT FROM AUTHOR]

Background: Several community mental health centres and mental hospitals in Norway now allow users with a diagnosis of severe mental illness to self-refer for admission. This give a group of service users who are well-known to service providers the opportunity to refer themselves for short inpatient stays without contacting their doctor, a duty doctor or emergency department. Evidence on self-referral admissions is lacking. Aim: To explore service users' experiences of having the opportunity to refer themselves for a short inpatient stay. Methods: Forty-two qualitative semi-structured interviews were undertaken between 2010 and 2014 in a group of 28 service users with serious mental illness and with or without substance abuse problems. All respondents had a contract which allowed them to self-refer for inpatient treatment. Systematic text condensation was applied in the analyses. Results: Self-referral inpatient admission is more than just a bed. It was perceived as a new, unconventional health service, which differed substantially from earlier experiences of inpatient care and was characterised by different values and treatment principles. The differences were related to the content, quality and organisation of treatment. Having the option to decide about admission for oneself and having access to services focusing on individual needs seem to enhance service users' confidence, both in the services they use and in their own ability to cope with everyday life. Conclusions: Self-referral inpatient admission is a concrete example of how a user involvement policy can be implemented in mental health services. It is important to emphasise that the self-referral admission process described here is an offer in development and that we are awaiting findings from a larger RCT study. More evidence is needed to determine what aspects of the service are helpful to service users, the long-term effects, appropriateness and cost-effectiveness, and how the service can be integrated into the mental health system. [ABSTRACT FROM AUTHOR]

Background: Policy initiatives and an increasing amount of the literature within higher education both call for students to become more involved in creating their own learning. However, there is a lack of studies in undergraduate nursing education that actively involve students in developing such learning material with descriptions of the students' roles in these interactive processes. Method: Explorative qualitative study, using data from focus group interviews, field notes and student notes. The data has been subjected to qualitative content analysis. Results: Active student involvement through an iterative process identified five different learning needs that are especially important to the students: clarification of learning expectations, help to recognize the bigger picture, stimulation of interaction, creation of structure, and receiving context- specific content. Conclusion: The iterative process involvement of students during the development of new technological learning material will enhance the identification of important learning needs for students. The use of student and teacher knowledge through an adapted co-design process is the most optimal level of that involvement. [ABSTRACT FROM AUTHOR]

Background: Understanding quality improvement from a patient perspective is important for delivering patient-centred care. Yet the ways patients define quality improvement remains unexplored with patients often excluded from improvement work. We examine how patients construct ideas of 'quality improvement' when collaborating with healthcare professionals in improvement work, and how they use these understandings when attempting to improve the quality of their local services. Methods: We used in-depth interviews with 23 'patient participants' (patients involved in quality improvement work) and observations in several sites in London as part of a four-year ethnographic study of patient and public involvement (PPI) activities run by Collaborations for Leadership in Applied Health Research and Care for Northwest London. We took an iterative, thematic and discursive analytical approach. Results: When patient participants tried to influence quality improvement or discussed different dimensions of quality improvement their accounts and actions frequently started with talk about improvement as dependent on collective action (e.g. multidisciplinary healthcare professionals and the public), but usually quickly shifted away from that towards a neoliberal discourse emphasising the role of individual patients. Neoliberal ideals about individual responsibility were taken up in their accounts moving them away from the idea of state and healthcare providers being held accountable for upholding patients' rights to quality care, and towards the idea of citizens needing to work on self-improvement. Participants portrayed themselves as governed by self-discipline and personal effort in their PPI work, and in doing so provided examples of how neoliberal appeals for self-regulation and self-determination also permeated their own identity positions. Conclusions: When including patient voices in measuring and defining 'quality', governments and public health practitioners should be aware of how neoliberal rationalities at the heart of policy and services may discourage consumers from claiming rights to quality care by contributing to public unwillingness to challenge the status quo in service provision. If the democratic potential of patient and public involvement initiatives is to be realised, it will be crucial to help citizens to engage critically with how neoliberal rationalities can undermine their abilities to demand quality care. [ABSTRACT FROM AUTHOR]

Background: There is a lack of evidence for the effective management of dental caries in children's primary teeth. The trial entitled 'Filling Children's Teeth: Indicated Or Not?' (FiCTION) was designed to examine the clinical and cost effectiveness, in primary dental care, of three different approaches to the management of caries in primary teeth. However, before the FiCTION main trial commenced, a pilot trial was designed. Service provider (dentists and other members of the team including dental nurses and practice managers) and participant (child participants and their parents) involvement was incorporated into the pilot trial. The aim of this study is to describe service providers' and users' perspectives on the pilot trial to identify improvements to the conduct and design of the FiCTION main trial. Methods: Qualitative interviews (individual and group) were held with dentists, dental team members, children and parents involved in the FiCTION pilot trial. Individual interviews were held with four dentists and a group interview was held with 17 dental team members. Face-to-face interviews were held with four parents and children (four- to eight-years old) representing the three arms of the trial and five telephone interviews were conducted with parents. All interviews were transcribed verbatim. Framework analysis was used. Results: Overall, service providers, children and parents found the pilot trial to be well conducted and an interesting experience. Service providers highlighted the challenges of adhering to research protocols, especially managing the documentation and undertaking new clinical techniques. They indicated that the time and financial commitments were greater than they had anticipated. Particular difficulties were found recruiting suitable patients within the timeframe. For parents recruitment was apparently more related to trusting their dentist than the content of information packs. While some of the older children understood what a study was, others did not understand or were not aware they were enrolled. Conclusions: The findings provided valuable recommendations to improve the method of recruitment of dental practices and patients, the timing and content of the training, the type of support dentists would value and ways to further engage children and parents in the FiCTION main trial. [ABSTRACT FROM AUTHOR]

Background: Governments and other payers are yet to determine optimal processes by which to review the safety, effectiveness, and cost-effectiveness of technologies and procedures that are in active use within health systems, and rescind funding (partially or fully) from those that display poor profiles against these parameters. To further progress a disinvestment agenda, a model is required to support payers in implementing disinvestment in a transparent manner that may withstand challenge from vested interests and concerned citizens. Combining approaches from health technology assessment and deliberative democratic theory, this project seeks to determine if and how wide stakeholder engagement can contribute to improved decision-making processes, wherein the views of both vested and non-vested stakeholders are seen to contribute to informing policy implementation within a disinvestment context. Methods/design: Systematic reviews pertaining to illustrative case studies were developed and formed the evidence base for discussion. Review findings were presented at a series of deliberative, evidence-informed stakeholder engagements, including partisan (clinicians and consumers) and non-partisan (representative community members) stakeholders. Participants were actively facilitated towards identifying shared and dissenting perspectives regarding public funding policy for each of the case studies and developing their own funding models in response to the evidence presented. Policy advisors will subsequently be invited to evaluate disinvestment options based on the scientific and colloquial evidence presented to them, and to explore the value of this information to their decision-making processes with reference to disinvestment. Discussion: Analysis of the varied outputs of the deliberative engagements will contribute to the methodological development around how to best integrate scientific and colloquial evidence for consideration by policy advisors. It may contribute to the legitimization of broad and transparent stakeholder engagement in this context. It is anticipated that decision making will benefit from the knowledge delivered through informed deliberation with engaged stakeholders, and this will be explored through interviews with key decision makers. [ABSTRACT FROM AUTHOR]