'Building bridges': reflections and recommendations for co-producing health research.

BACKGROUND: Co-produced research is when all stakeholders, including experts by experience and researchers, work together to conceptualise, design, deliver and disseminate research to enhance understanding and knowledge. This type of participatory inquiry is being increasingly used across health research; however, it continues to be a complex area to navigate given existing institutional structures. MAIN BODY: We collaborated across three independent co-produced research studies to share insights, reflections, and knowledge of our work in the fields of HIV, mental health, and disability research. We co-designed and delivered a three-hour online workshop at a conference to share these reflections using the metaphor of 'building bridges' to describe our co-production journey. We generated key principles of co-production from our different experiences working in each individual research project as well as together across the three projects. Our principles are to: (1) be kind, have fun and learn from each other; (2) share power (as much as you can with people); (3) connect with people you know and don't know; (4) remain connected; and (5) use clear and simple language. CONCLUSION: We recommend that co-produced research needs additional funding, resource, and flexibility to remain impactful and ethical. Co-produced research teams need to be mindful of traditional power structures and ensure that the process is transparent, fair, and ethical. Addressing equality, diversity, and inclusion of traditionally underrepresented groups in research is essential as are the skills, expertise, and experiences of all members of the co-production team.

Co-produced research occurs when a range of people, including researchers and people with lived experience of a topic work together on all stages of a piece of research, from design to publication, to improve understanding of a topic. This methodology has become increasingly popular in the field of health research, however ­ it can be difficult to undertake because of how health institutions are structured. As a team, we examined three co-produced studies (focusing on HIV, mental health, and disability research) to share our insights and reflections. We then shared these reflections through a co-designed online workshop at a conference. We used the metaphor of 'building bridges' to describe our teamwork. From our experiences on these studies, we came up with five key suggestions for co-production in research: (1) be kind, have fun and learn from each other; (2) share power as much as possible with everyone; (3) connect with people you know and those you don't; (4) stay connected; (5) use clear and simple language. To achieve ethical and impactful co-produced research, we suggest that it needs more funding, resources, and flexibility. Teams who are conducting co-produced research must be fair and clear about how they do so, and ensure that everyone, especially groups who are often unheard, get a chance to be part of research so that everyone's skills and experiences are equally considered.

Effectiveness of Social Inclusion Interventions for Anxiety and Depression among Adolescents: A Systematic Review.

BACKGROUND: Adolescents who are socially excluded are at increased risk of mental health problems such as depression and anxiety. Promoting social inclusion could be an effective strategy for preventing and treating adolescent depression and anxiety. METHODS: We conducted a systematic review of intervention studies which aimed to prevent or treat adolescent depression and/or anxiety by promoting social inclusion. Throughout the review we engaged a youth advisory group of 13 young people (aged 21-24) from Uganda, Turkey, Syria, South Africa, and Egypt. RESULTS: We identified 12 studies relevant to our review. The interventions tested use a range of different strategies to increase social inclusion and reduce depression and anxiety, including social skills training, psychoeducation, teaching life skills training, and cash transfers. Pooled standardised mean differences (SMDs) based on random-effects models showed medium-to-large benefits of interventions on improving depression and anxiety symptoms (n = 8; SMD = -0.62; 95% CI, -1.23 to -0.01, p < 0.05). CONCLUSION: Although there are not many studies, those which have been done show promising results that strongly suggest that social inclusion could be an important component of programmes to promote adolescent mental health.

Community Support for Persons with Disabilities in Low- and Middle-Income Countries: A Scoping Review.

Over the life course, persons with disabilities require a range of supports to be integrated into their communities, to participate in activities that are meaningful and necessary, and to have access, on an equal basis to persons without disabilities, to community living. We conducted a scoping review of the peer-reviewed and grey literature on community support for persons with disabilities in low- and middle-income countries (LMICs). The main findings of this review concern the following: there are gaps in access to community support for persons with disabilities in LMICs; there are barriers to the provision of such support; formal and informal strategies and interventions for the provision of community support exist across the life cycle and different life domains, but evidence concerning their effectiveness and coverage is limited; and the role of community-based rehabilitation and Organisations of Persons with Disabilities in the assessment of needs for, and the development and provision of, community support, needs to be more clearly articulated. Research needs a more robust theory of change models with a focus on evaluating different aspects of complex interventions to allow for effective community support practices to be identified.

In the physical to digital transition with friends - a story of performing inclusive research together no matter what life throws at you.

BACKGROUND: As part of 'The Hub' project at Wellcome Collection, a team of eight co-researchers with learning disabilities alongside academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts-based methods, co-researchers remotely co-analysed the survey results amid Covid-19 lockdown challenges. Here, we explore our unexpected 'transition' journey from the physical 'Hub' to the digital space. METHODS: We organised 20 sessions at 'The Hub' and used audio/video/photo recordings to 'capture' key moments. With the lockdown, we ensured that every co-researcher had access to and support for digital technologies. Throughout 2020, we organized 28 Zoom meetings involving all co-researchers. In June, Lilly and Sue conducted Zoom interviews with the co-research team to reflect on our 'transition' journey. In this creative video-form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process. FINDINGS: We identify that trust and the social bonds established at 'The Hub' are the key components of our transition to the digital environment. There is the tension between longing for in-person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to 'change the world' and the strive for social justice. Having time and opportunity to improve, and co-researchers' steady growth in confidence, are equally important. CONCLUSIONS: The determination for maintaining friendships among co-researchers and the motivation to 'change the world' overcome Covid-19 related challenges in continuing co-research. SUMMARY: [Table: see text].

Supporting Remote Survey Data Analysis by Co-researchers with Learning Disabilities through Inclusive and Creative Practices and Data Science Approaches.

Through a process of robust co-design, we created a bespoke accessible survey platform to explore the role of co-researchers with learning disabilities (LDs) in research design and analysis. A team of co-researchers used this system to create an online survey to challenge public understanding of LDs [3]. Here, we describe and evaluate the process of remotely co-analyzing the survey data across 30 meetings in a research team consisting of academics and non-academics with diverse abilities amid new COVID-19 lockdown challenges. Based on survey data with >1,500 responses, we first co-analyzed demographics using graphs and art & design approaches. Next, co-researchers co-analyzed the output of machine learning-based structural topic modelling (STM) applied to open-ended text responses. We derived an efficient five-steps STM co-analysis process for creative, inclusive, and critical engagement of data by co-researchers. Co-researchers observed that by trying to understand and impact public opinion, their own perspectives also changed.

Psychosocial interventions for improving engagement in care and health and behavioural outcomes for adolescents and young people living with HIV: a systematic review and meta-analysis.

INTRODUCTION: Adolescents and young people comprise a growing proportion of new HIV infections globally, yet current approaches do not effectively engage this group, and adolescent HIV-related outcomes are the poorest among all age groups. Providing psychosocial interventions incorporating psychological, social, and/or behavioural approaches offer a potential pathway to improve engagement in care and health and behavioural outcomes among adolescents and young people living with HIV (AYPLHIV). METHODS: A systematic search of all peer-reviewed papers published between January 2000 and July 2020 was conducted through four electronic databases (Cochrane Library, PsycINFO, PubMed and Scopus). We included randomized controlled trials evaluating psychosocial interventions aimed at improving engagement in care and health and behavioural outcomes of AYPLHIV aged 10 to 24 years. RESULTS AND DISCUSSION: Thirty relevant studies were identified. Studies took place in the United States (n = 18, 60%), sub-Saharan Africa (Nigeria, South Africa, Uganda, Zambia, Zimbabwe) and Southeast Asia (Thailand). Outcomes of interest included adherence to antiretroviral therapy (ART), ART knowledge, viral load data, sexual risk behaviours, sexual risk knowledge, retention in care and linkage to care. Overall, psychosocial interventions for AYPLHIV showed important, small-to-moderate effects on adherence to ART (SMD = 0.3907, 95% CI: 0.1059 to 0.6754, 21 studies, n = 2647) and viral load (SMD = -0.2607, 95% CI -04518 to -0.0696, 12 studies, n = 1566). The psychosocial interventions reviewed did not demonstrate significant impacts on retention in care (n = 8), sexual risk behaviours and knowledge (n = 13), viral suppression (n = 4), undetectable viral load (n = 5) or linkage to care (n = 1) among AYPLHIV. No studies measured transition to adult services. Effective interventions employed various approaches, including digital and lay health worker delivery, which hold promise for scaling interventions in the context of COVID-19. CONCLUSIONS: This review highlights the potential of psychosocial interventions in improving health outcomes in AYPLHIV. However, more research needs to be conducted on interventions that can effectively reduce sexual risk behaviours of AYPLHIV, as well as those that can strengthen engagement in care. Further investment is needed to ensure that these interventions are cost-effective, sustainable and resilient in the face of resource constraints and global challenges such as the COVID-19 pandemic.

Universal school-based mental health programmes in low- and middle-income countries: A systematic review and narrative synthesis.

Depression and anxiety pose a significant burden during adolescence, which may have consequences for adulthood and future generations. The mental health needs of children and adolescents in low- and middle-income countries are not adequately addressed due to a lack of availability and access to services, and limited intervention research in these contexts. Universal school-based interventions provide a unique and potentially scalable opportunity to prevent and address mental health concerns amongst children and adolescents in low- and middle-income countries. This systematic review aimed to identify and provide a narrative synthesis of universal school-based programmes delivered to children (aged 6-18 years) in low- and middle-income countries reporting on anxiety and/or depression outcomes. We searched Academic Search Premier, ERIC, PsycINFO, PubMed, Scopus, Web of Science, and ProQuest Dissertations using a pre-specified search strategy. Of the 12,478 articles identified, 12 studies met our inclusion criteria and were included in this review. The included studies report on a variety of interventions differing in approach, format and content. Given the small number of studies and concerns with study quality, we are unable to conclude that universal school-based interventions may reduce symptoms of anxiety and depression in children in low- and middle-income countries.

Preventing mental health conditions in adolescents living with HIV: an urgent need for evidence.

INTRODUCTION: As adolescents transition from childhood to adulthood, they experience major physical, social and psychological changes, and are at heightened risk for developing mental health conditions and engaging in health-related risk behaviours. For adolescents living with HIV (ALHIV), these risks may be even more pronounced. Research shows that this population may face additional mental health challenges related to the biological impact of the disease and its treatment, the psychosocial burdens of living with HIV and HIV-related social and environmental stressors. DISCUSSION: Psychosocial interventions delivered to adolescents can promote positive mental health, prevent mental health problems and strengthen young people's capacity to navigate challenges and protect themselves from risk. It is likely that these interventions can also benefit at-risk populations, such as ALHIV, yet there is little research on this. There is an urgent need for more research evaluating the effects of interventions designed to improve the mental health of ALHIV. We highlight four priorities moving forward. These include: generating more evidence about preventive mental health interventions for ALHIV; including mental health outcomes in research on psychosocial interventions for ALHIV; conducting intervention research that is sensitive to differences among ALHIV populations and involving adolescents in intervention design and testing. CONCLUSIONS: More robust research on promotive and preventive mental health interventions is needed for ALHIV. Programmes should be informed by adolescent priorities and preferences and responsive to the specific needs of these groups.

Psychosocial interventions targeting mental health in pregnant adolescents and adolescent parents: a systematic review.

BACKGROUND: Pregnancy and parenthood are known to be high-risk times for mental health. However, less is known about the mental health of pregnant adolescents or adolescent parents. Despite the substantial literature on the risks associated with adolescent pregnancy, there is limited evidence on best practices for preventing poor mental health in this vulnerable group. This systematic review therefore aimed to identify whether psychosocial interventions can effectively promote positive mental health and prevent mental health conditions in pregnant and parenting adolescents. METHODS: We used the standardized systematic review methodology based on the process outlined in the World Health Organization's Handbook for Guidelines Development. This review focused on randomized controlled trials of preventive psychosocial interventions to promote the mental health of pregnant and parenting adolescents, as compared to treatment as usual. We searched PubMed/Medline, PsycINFO, ERIC, EMBASE and ASSIA databases, as well as reference lists of relevant articles, grey literature, and consultation with experts in the field. GRADE was used to assess the quality of evidence. RESULTS: We included 17 eligible studies (n = 3245 participants). Interventions had small to moderate, beneficial effects on positive mental health (SMD = 0.35, very low quality evidence), and moderate beneficial effects on school attendance (SMD = 0.64, high quality evidence). There was limited evidence for the effectiveness of psychosocial interventions on mental health disorders including depression and anxiety, substance use, risky sexual and reproductive health behaviors, adherence to antenatal and postnatal care, and parenting skills. There were no available data for outcomes on self-harm and suicide; aggressive, disruptive, and oppositional behaviors; or exposure to intimate partner violence. Only two studies included adolescent fathers. No studies were based in low- or middle-income countries. CONCLUSION: Despite the encouraging findings in terms of effects on positive mental health and school attendance outcomes, there is a critical evidence gap related to the effectiveness of psychosocial interventions for improving mental health, preventing disorders, self-harm, and other risk behaviors among pregnant and parenting adolescents. There is an urgent need to adapt and design new psychosocial interventions that can be pilot-tested and scaled with pregnant adolescents and adolescent parents and their extended networks, particularly in low-income settings.

Women's stories of living with breast cancer: A systematic review and meta-synthesis of qualitative evidence.

RATIONALE: Globally, breast cancer is by far the most frequently occurring cancer amongst women. Whilst the physical consequences of the disease and associated treatments are well documented, a comprehensive picture of how breast cancer is experienced at all stages of disease progression is lacking. OBJECTIVE: This systematic review aimed to synthesize qualitative studies documenting women's breast cancer narratives into an empirically based explanatory framework. METHODS: Two investigators independently searched Academic Search Premiere, CINAHL, Health Source: Nursing/Academic Edition, MEDLINE, PsycARTICLES, PubMed, Science Direct, SCOPUS, Web of Science and three international dissertation repositories using a pre-specified search strategy to identify qualitative studies on women's breast cancer narratives across all geographic and income-level settings. Of the 7840 studies that were screened for eligibility, included in the review were 180 studies, which were assessed using the Critical Appraisal Skills Programme. Using a 'meta-study' approach, an explanatory model of the breast cancer experience was formulated. Finally, we assessed the confidence in the review findings using the 'Confidence in the Evidence from Reviews of Qualitative Research' (CERQual) guidelines. RESULTS: Eight core themes were identified: the burden of breast cancer, existential ordeal, illness appraisal, sources of support, being in the healthcare system, the self in relation to others, changes in self-image, and survivor identity. Together, these form the proposed Trajectory of Breast Cancer (TBC) framework. CONCLUSION: The Trajectory of Breast Cancer explanatory framework offers a theoretically defensible synthesis of women's experiences of breast cancer. This framework provides an empirical basis for future reviewers conducting qualitative and narrative breast cancer research.