The tightly coupled social-ecological nature of fisheries calls for science and management to work in tandem across knowledge systems to address the complex issues impacting fisheries productivity and associated benefit flows. However, the pragmatics of how to accomplish this in an equitable manner are rarely discussed. In this paper we provide a real-world example of how to effectively and meaningfully weave ecological and social sciences with diverse knowledge and ways of knowing in order to revive an ancient Indigenous aquaculture practice to address climate-related resource management and community health concerns. Specifically, we present the detailed steps of our transdisciplinary clam garden site selection process: 1) create Technical Advisory Group, 2) develop initial exclusion map, 3) collect ecological data and conduct multi-criteria decision analysis, 4) collect socio-cultural data, and 5) select a site. Our methodical, stepwise framework included collaborative management through community participation and decision-making, and utilization of multiple perspectives. This resulted in a transparent, inclusive process that garnered community support and increased the likelihood for successful implementation. Our work is specific to the Swinomish Indian Tribal Community; however, the process can be adapted to address the place-based needs and values of other coastal communities.

BackgroundEngaging people with lived experience of dementia (i.e., people living with dementia, family/friend care partners) in all phases of research contributes to more relevant and meaningful research findings. Mobilizing knowledge to diverse audiences is critical to getting scientific findings into the hands of knowledge users, including people with lived experience of dementia. To ensure the goals of patient engagement and knowledge mobilization (KM) were achieved, two cross‐cutting programs within the Canadian Consortium on Neurodegeneration in Aging (CCNA) were established: a KM program to support KM activities and a lived experience program, Engagement of People with Lived Experience of Dementia (EPLED). The EPLED Advisory Group consists of people with lived experience of dementia, to support the engagement of people with lived experience in research.MethodIn addition to their respective core activities, the KM and EPLED programs united to work collaboratively to achieve shared goals of increasing the involvement of people with lived experience throughout the CCNA network, including in KM. Together, the programs undertook activities to raise the profile of people with lived experience of dementia, involving EPLED in KM activities as well as planning and decision making. Over time, this led to a culture shift within CCNA where researchers increasingly sought out and involved the perspectives of people with lived experience in research and KM activities.ResultPeople with lived experience of dementia are now key collaborators at all stages of scientific research within CCNA, including in planning and executing KM activities. Evaluation data indicate these activities are valued by researcher, trainee and public audiences.ConclusionThe integration of people with lived experience of dementia within CCNA's research and KM projects has been a resounding success. EPLED and KM will continue to collaborate on integrating people with lived experience in CCNA's research activities, and support researchers in developing KM activities and skills.

To explore key stakeholders' vision for a One Health integrated companion animal health surveillance system in Ontario through a series of individual semistructured interviews with members of an expert advisory group. We conducted 9 semistructured interviews with members of the expert advisory group. Interviews were conducted online via Zoom and lasted between 20 and 60 minutes. Interviews were analyzed thematically with the use of a hybrid inductive/deductive approach to coding. 8 interconnected themes were identified, describing key considerations for the future design of a companion animal health surveillance system. These themes included reluctance to participate in data sharing, complexities of extracting and processing data, securing funding, consolidated vision, value, targeted outputs, potential of misrepresentation of data, and strong governance. Factors relating to the design of an integrated companion animal health surveillance system are highly interlinked and often driven by value. The results of this study will be used to inform development of a companion animal health surveillance system that incorporates One Health principles through the integration of data relating environmental and public health.

BackgroundYouth at clinical high risk (CHR) for psychosis often experience emotional dysregulation, psychiatric symptoms, substance use, suicidality, and functional impairment. Dialectical behaviour therapy (DBT) is an evidence-based intervention that improves emotion regulation, clinical outcomes, and functioning across psychiatric populations. Digital adaptations (d-DBT) may enhance accessibility and engagement for CHR youth, but acceptability and potential benefits in this group are unknown.ObjectiveTo adapt d-DBT for CHR youth and evaluate the acceptability of delivering it to this population, as well as the feasibility of a larger-scale clinical trial.MethodsThis mixed-methods clinical trial has two phases. In Phase 1, d-DBT will be adapted for CHR youth in collaboration with a lived-experience youth advisory group. In Phase 2, an assessor-masked randomized controlled trial will compare d-DBT (n = 30) with treatment as usual (n = 30). The intervention consists of eight weekly modules, with primary outcomes assessing acceptability, usability, and trial feasibility. Secondary outcomes include changes in emotional dysregulation, psychiatric symptoms, substance use, suicidality, and functioning.ConclusionsWe anticipate that d-DBT will be acceptable to CHR youth and that conducting a larger trial will be feasible. Preliminary findings may demonstrate improvements in emotion regulation, psychiatric symptoms, suicidality, and functioning. Results will guide further refinement of the intervention and inform the design of a confirmatory clinical trial.Trial registrationClinicalTrials.gov #NCT06928935

Endometriosis is a chronic condition affecting 1 in 7 women, girls, and gender-diverse individuals in Australia. It significantly impacts daily life, causing pain, psychological distress and productivity loss. Multidisciplinary team (MDT) care is fundamental for managing chronic pain in endometriosis. Nevertheless, limited studies have explored perspectives on MDT care in the Australian context, and there remains a lack of consensus on what a MDT care model should include and how improved continuity of care can be achieved. This study aims to evaluate patient and health professional perspectives on MDT care models for endometriosis and pelvic pain, and to inform decisions about establishing future MDT clinics in Australia. A mixed-methods study was co-designed involving an advisory group of 14 members. Surveys capturing quantitative and qualitative data were disseminated to patients/carers and healthcare professionals. Thematic analysis was performed on qualitative data, and consensus statements were developed and refined through focus groups. Participants included 29 healthcare professionals and 24 patients/carers. Recommendations were voiced under six key themes: preferences for clinic environments, staff interactions, holistic support, financial accessibility and resource needs. Patients valued empathetic, experienced clinicians and preferred both options for face-to-face and telehealth interactions. Financial strain was a significant concern, highlighting the need for affordable care. Both groups stressed the importance of up-to-date, evidence-based information and personalised care plans. This study underscores the need for person-centred, holistic and accessible MDT clinics for endometriosis in Australia. The consensus statements provide a blueprint for developing such clinics. Implementing these recommendations can enhance endometriosis care quality, improving patient experiences and outcomes. This provides the first steps to better understanding the wants and needs of both patients, carers and HCP in setting up future services as well as modifying existing services.

Although COVID-19 cases and mortality are declining, vaccination remains essential for the World Health Organization (WHO) as it shifts from managing a global emergency to implementing long-term disease control strategies. Sub-Saharan Africa requires particular attention due to low vaccination coverage and the risk of variants. Chad ranks among the countries with the lowest vaccination rates globally. Healthcare workers’ (HCWs) vaccine hesitancy may influence patient uptake, making it essential to understand their intentions and underlying reasons to inform context-specific public health strategies. A cross-sectional survey, adapted from the WHO Strategic Advisory Group of Experts (SAGE) vaccine hesitancy tool, was conducted among 632 HCWs in N’Djamena, Chad, between April 30 and May 14, 2021, before the national COVID-19 vaccination rollout. Approximately 60% of HCWs expressed willingness to be vaccinated. Positive attitudes were associated with older age, presence of chronic conditions, and greater fear of the disease. Vaccine refusal was linked to beliefs that vaccines are dangerous, prior rejection of all vaccines, or perception of COVID-19 vaccines as a strategy to benefit Western pharmaceutical companies. These findings can support the adaptation of global vaccination initiatives to local contexts in Sub-Saharan Africa by addressing HCWs’ concerns to improve vaccine uptake.

BackgroundMany children with hereditary proximal spinal muscular atrophy (SMA) develop joint contractures. With the introduction of disease-modifying treatments (DMTs) for SMA, the improved functional prognosis may change the focus of (preventive) contracture management.ObjectiveThis study aimed to describe current approaches to contracture management among Dutch pediatric rehabilitation physicians caring for children with SMA receiving DMT, and to explore the underlying considerations and clinical reasoning that inform their decisions on contracture management in the evolving therapeutic landscape.MethodsAll registered pediatric rehabilitation physicians (n = 151) received a survey, addressing two main topics: (1) indication and purpose of contracture management, and (2) alignment of clinical decision-making with current guidelines. To this end, three standardized case scenarios were presented. Respondents were asked to indicate whether their current choices, were consistent with the guideline recommendations. To obtain a deeper understanding of the considerations and clinical reasoning regarding contracture management in the era of DMTs, we held an advisory group meeting. We audio-recorded the discussions and analyzed the content thematically.ResultsThe response rate was 56%; 41 of these respondents were not involved in SMA care. 38 of the 44 surveys, completed by participants involved in SMA care, were suitable for analysis. All respondents (strongly) agreed about ‘optimal sitting posture’ being an important treatment goal, 95% agreed on ‘pain prevention’ and 87% on ‘maintaining function’. Physicians recommended daily use of hand splints less frequently in children who started DMT before onset of symptoms (35%) than in children who started DMT at an advanced disease stage (54%). Thematic analysis revealed three themes shaping clinical reasoning: (1) functional prognosis as key element in decision-making; (2) clinical uncertainty regarding contracture intervention; and (3) incorporation of contextual factors.ConclusionDutch pediatric rehabilitation physicians describe challenges in clinical decision-making regarding contracture management in a changing landscape for SMA. The use of key principles could facilitate the process, including: (1) assessing the child’s functional prognosis; (2) engaging in open discussions with parents about uncertainties arising from limited clinical experience and the evolving understanding of disease trajectories in the early post-DMT era; and (3) applying the ICF framework to incorporate contextual factors into clinical decision-making regarding contracture management.

Co-production is important due to its effectiveness in creating relevant and meaningful outputs for use in social and healthcare practice, however, frontline staff such as homecare workers (also known as aides, personal assistants or domiciliary care workers providing paid care within the home) are a key group within the social care workforce who are under-represented in this approach. Here, we report our coproduction process engaging with this workforce to develop training resources for workers providing end-of-life homecare. To co-produce training resources with homecare workers and their managers to support and educate workers delivering end-of-life homecare using evidence from our larger qualitative interview study. We conducted a series of 12 co-production workshops with UK-based homecare workers and managers (partners) to design training resources and recommendations for homecare providers informed by research findings. We adopted the five key principles of co-production: Sharing of power; Including all perspectives and skills; Respecting and valuing knowledge; Reciprocity; and Building and maintaining relationships. A co-production advisory group of homecare workers as well as the workshop partners gave valuable oversight throughout the workshop series. 77 partners (31 homecare workers, 46 managers) participated in 12 workshops (one face-to-face; 11 online). Our approach enabled power-sharing, inclusivity, respect, collaboration and reciprocity, relationship-building, and identification of effective flexible approaches to co-production. Specific forms of training resources were co-created. Training recommendations (content, delivery formats, access during working hours, etc.) were also developed together. Challenges were non-attendance and lack of engagement by some partners during sessions. These workshops are the first, to our knowledge, to successfully co-produce end-of-life care training resources with homecare workers and managers, a poorly represented workforce in co-production. Challenges included inconsistent attendance and poor engagement by a minority of partners. The five key principles of co-production enabled true engagement with the process, thereby enriching the final outputs.

ABSTRACTBackgroundDrug development practices for rare diseases promote a promissory notion that the drug pipeline will succeed (with the next new drug/drug trial) and an imaginary of widening patient engagement (often desired but yet to be enacted). Contemporary industry practices of patient engagement are shaped by this promissory, and engagement often includes limited patient perspectives, typically relying on patients from established Patient Organisations or identified by Contract Research Organisations.ObjectiveWe sought to explore whether more deliberative methods might enable wider, more diverse patient engagement for orphan drug trials.DesignCitizen's Jury co‐designed with patient advisors.Setting and ParticipantsResults of an earlier ethnography of a biotech company's patient engagement practices, along with findings from clinical trials for patients with idiopathic pulmonary fibrosis, clinical practice and patient testimony, were presented to the Citizens' Jury made up of patients and carers.ResultsJurors discussed and offered a ‘verdict’ on trial materials and processes that would optimise the engagement of more diverse patients for drug trials for rare diseases, suggesting that more could be done at an organisational level to ensure that potential trial participants were able to ‘engage’. They asserted that the industry could do more to understand the unmet needs and wishes of a wider group of patients and should seek input from more diverse groups.DiscussionThe Citizens' Jury called for practices to enable wider engagement—for both drug trials and drug trial design—and more transparency about the risks associated with engagement, for individual patients and currently marginalised groups.ConclusionsCurrent drug development practices reify expert patient perspectives and often ignore the views of the wider group of patients who may participate in trials and/or use new medicines developed. More deliberative methods of engagement have the potential to democratise drug development and ensure that new medicines and trials meet the needs of a broader patient demographic.Patient or Public ContributionA patient advisory group (PAG) comprising six people with IPF gave input into all aspects of the research design and conduct, including co‐design of the Citizens' Jury. Two patients from international patient organisations served as a steering group (SG). Members of both groups provided their interpretations of the study findings and gave insight into their experiences in clinical design and participation.

To evaluate quality use of medicines (QUM) in patients admitted to the Psychiatric Alcohol and Non-Prescription Drug Assessment (PANDA) Unit through analysis of polypharmacy risk, prescribing safety indicators and national QUM indicators. Retrospective review of electronic medical records for 787 patients (1245 episodes) admitted to PANDA Unit, St Vincent's Hospital Sydney, November 2020-December 2021. We assessed polypharmacy risk using NSW Therapeutic Advisory Group's Inappropriate Polypharmacy Risk Assessment Tool, evaluated nine prescribing safety indicators (PSIs) and assessed four national quality use of medicines indicators (NQUMIs) in a randomly selected subset of 103 patients. Mean age was 40.2years; 67.2% were male. Alcohol-related diagnoses comprised 32.1% of presentations. Medium-risk (43.5%) and high-risk (37.2%) polypharmacy were prevalent, largely reflecting protocol-driven prescribing for acute presentations. Co-prescription of QT-prolonging drugs with antipsychotics affected 17.2% of patients, with 64.7% associated with rapid sedation protocols; only one case of potential QT prolongation was documented. Major gaps were identified in medication reconciliation (40.8% had documented medication history) and discharge documentation (13.1% of discharge summaries contained complete medication information). Patients experiencing homelessness demonstrated poorer outcomes across all QUM indicators, with no discharge summaries meeting quality standards. While PANDA demonstrated appropriate protocol-driven prescribing for acute psychiatric presentations, substantial gaps in medication reconciliation and discharge communication highlight challenges in care transitions for priority populations. Standard polypharmacy and prescribing safety indicators may require adaptation for acute psychiatric settings to distinguish appropriate acute prescribing from potentially inappropriate practices.

The North East is one of the most disadvantaged areas of England with end-of-life care needs shaped by high levels of disability, physical and mental ill health. This programme of work aimed to set the foundation for the development of a palliative and end-of-life care research community, equipped to meet local and national challenges. Develop a self-sustaining research culture in North East palliative and end-of-life care. Build research collaborations around older age, frailty, multiple long-term conditions and inequalities and submit at least one research proposal. Convene a diverse patient and public advisory group. To establish cross-institutional collaborations, we worked with patient and public partners and key stakeholders from local National Health Service trusts, hospices, social care, our National Institute for Health and Care Research infrastructure (Applied Research Collaboration North East and North Cumbria, Policy Research Unit Older People and Frailty, National Institute for Health and Care Research Innovation Observatory, Comprehensive Research Network, and Research Design Service). A series of events were hosted to foster a research culture, including establishing a monthly seminar programme, research sandpits, bespoke research training and dissemination events. A diverse community of patient and public involvement partners was established to support and shape the developing research. Multiple project and two fellowship applications were supported by the partnership. A qualitative study identified issues pertinent to local access to data that could support research. This work has been a catalyst for palliative and end-of-life care research and practice collaborations to develop. Funding success and ongoing research and training events should provide a platform for sustained research development in this area. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135278.

Adverse sexual health, dating and relationship violence, and sexual harassment are significant public health concerns, especially among young people. Sexually transmitted infection rates are at a 10-year high, and dating and relationship violence affects nearly half of young people. Further education provides a population-wide setting for delivering dating and relationship violence and sexual health interventions, but only a few interventions have been shown to be effective in further education. To optimise intervention materials and identify refinements for the Sexual Health and Healthy Relationships for further education (SaFE) intervention, an intervention to improve sexual health and reduce dating and relationship violence and sexual harassment among young people attending further education. Optimised materials were used in a pilot cluster randomised controlled trial of SaFE. SaFE had three components: (1) onsite access to sexual health and relationship services in further education settings provided by sexual health nurses for 2 hours, 2 days per week; (2) publicity about onsite services and (3) further education staff training on how to promote sexual health and recognise and respond to dating and relationship violence and sexual harassment. This paper reports on the optimisation of the SaFE intervention materials. A multistage iterative process was used to optimise further education staff training and publicity materials. This involved a series of consultation and focus group feedback sessions. In Stage 1, feedback was collected from the SaFE Trial Management Group. Stage 2 involved: (1) two focus groups; one with four further education staff and one with three further education students at one further education institution and (2) stakeholder consultation with seven experts. Stage 3 saw consultation with the Trial Steering Committee who had independent oversight of the study. The operational feasibility of the training was evaluated in Stage 4 through a trial run with further education safeguarding and well-being teams. Stage 5 comprised a final review of intervention material by the Trial Management Group. Stage 6 gained online feedback from a young people's advisory group. The study was conducted in England and Wales. In Stage 1, Trial Management Group reviewers recommended improving clarity and factual accuracy, reducing the length of slide decks and adding content on sending explicit images. Stage 2 feedback from further education staff and students focused on training content addressing comprehensiveness, structure and visual design and training delivery addressing preferred training formats and opportunities for scenario-based learning. The Trial Steering Committee in Stage 3 advised on managing participant disclosures and reordering content. Stage 4's trial run with further education staff identified redundancy in content, the incorporation of task-based exercises and varied learning approaches. Stage 5's Trial Management Group review led to the integration of multimedia elements and case studies. Stage 6 feedback from young people improved clarity and accessibility in publicity materials. Low participation and self-selection in focus groups may limit the generalisability of the findings. The move to online engagement during COVID-19 may have hindered the depth of interaction. Recruiting from a single institution could introduce sampling bias. Fully optimised staff training and publicity materials were produced that were considered acceptable and consistent with the theory of change as agreed by the research team, Trial Steering Committee, stakeholder advisory group and further education students staff and young people. After the optimisation phase, the SaFE intervention was delivered in a pilot cluster randomised controlled trial with high fidelity to six further education settings in England and Wales. Future work could explore strategies to evaluate the effectiveness as well as improve scalability and sustainability of interventions like SaFE. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number 17/149/12.

BackgroundThe economic impact of dementia on individuals, families, communities, systems, and societies has not been fully assessed for integration into estimates of dementia costs. Through a joint effort of the University of Southern California and the Alzheimer's Association, a Family and Persons Living with Dementia (FPLWD) Panel and a Public Health and Care Expert (PHCE) Panel were established to identify direct, indirect, and intangible dementia costs. Insights from the panels support comprehensive estimates of dementia costs produced by the United States Costs of Dementia Model (USCDM).MethodsPanel members were recruited through the Alzheimer's Association chapters, engagement and advisory groups, and national network to ensure panels included diverse lived experiences of individuals living with dementia, caregivers, care partners, the public health community, and professionals involved in dementia care and support. In quarterly online meetings of approximately 2 hours, panel members ‐ 10 FPLWD and 11 PHCE ‐ discuss costs associated with dementia diagnosis, treatment, and care guided by prompt questions. Meetings are recorded, and transcripts are thematically analyzed.ResultsParticipants of both the FPLWD and PHCE panels have engaged actively in the discussions and brought complementary perspectives about the economic impact of dementia in the US. Initial findings indicate consistency between panels on the most pressing direct costs associated with dementia, such as medical expenses, home modifications, and transportation. In both panels, members also identified indirect costs associated with work‐related changes, families' income loss, and those related to the impact on caregivers’ health and well‐being. From their different perspectives, each panel shared information about potential hidden costs that affect individuals, families, and systems, such as those related to identity and social impact, financial management, and family medical leave absence.ConclusionsIndividuals with lived experience and public health and care experts bring invaluable perspectives to a comprehensive understanding of the various ways dementia affects individuals, families, communities, organizations, systems, and society. While several of these findings align with existing knowledge about the costs associated with dementia, many insights shed light on novel aspects to measure when quantifying the economic impact of dementia within the country.

AimsThis study sought to understand the subjective individual and collective benefits of alcohol use for transgender and gender diverse (TGD) people in the UK.MethodsA cross-sectional survey, co-produced with a TGD community advisory group, was open for responses from 1 February until 31 March 2022. Respondents were UK-based TGD adults who reported current or historical alcohol use. Those included in this sub-sample (n = 295) provided a valid response to one of two open-ended questions (OQ) concerning the subjective benefits of alcohol to TGD individuals (OQ1) and the perceived role of alcohol in UK TGD communities (OQ2). Data from these questions were collated (n = 455 responses) and coded using thematic analysis.ResultsAn overarching theme was identified, ‘belonging’, under which two themes were developed to answer each question. For individuals, alcohol enhanced intimacy and relieved pain, and was described to have a role in bringing the TGD community together and facilitating gender exploration and affirmation.ConclusionTGD people experience a range of benefits from using alcohol, attributable to its anxiolytic and analgesic properties. Many respondents felt alcohol had a specific role in their communities, associated with the relative safety of alcohol-serving venues for TGD people.

Faltering weight in infants with cleft lip and palate.

BackgroundVaccination is particularly important for people living with dementia (PLWD). Even so, vaccine uptake remains suboptimal, and messaging may not be optimally tailored. Awareness of PLWD as an important population for immunization may also be limited in public health settings, including in the work of National Immunization Technical Advisory Groups (NITAGs).This study investigates: 1) Geriatrics representation in NITAG membership, 2) Whether dementia is considered a high‐risk condition in NITAG guidance, and 3) Whether national dementia advocacy organizations (e.g. Alzheimer Associations/Societies) specifically recommend vaccination as part of messaging on living well with dementia.MethodA jurisdictional scan was conducted among NITAGs and national dementia advocacy organizations in the following countries: Canada, USA, United Kingdom, Australia, Germany, France, Switzerland, and for the World Health Organization. Lists of each NITAG's voting members were reviewed, including institutional affiliations/biographies. Published recommendations were reviewed for five adult vaccines (COVID‐19, influenza, pneumococcal, RSV and Herpes Zoster) to determine whether dementia or related conditions appeared on lists of people for whom vaccination is particularly recommended. Websites for dementia advocacy organizations in each country were searched for information relating to vaccines, and any specific recommendation on the importance of vaccination for PLWD.ResultFour of the eight NITAGs (Canada, USA, France, Germany) included a geriatrician voting member. All jurisdictions had variations on age‐based recommendations for adult vaccines (e.g. recommending everyone over a certain age should be vaccinated). Some included specific mention of dementia as a high‐risk condition (eg UK, Germany, and France for COVID, Canada for RSV), and several included chronic neurological conditions (sometimes with Central Nervous System or neurodegenerative as descriptors). All but one of the dementia advocacy organizations made some mention of COVID vaccines. Only the USA and UK organizations mentioned any non‐COVID vaccine. None discussed vaccination as a specific recommendation for living well with dementia.ConclusionAlthough geriatrics representation is increasingly part of NITAGs, and PLWD are sometimes included among high‐risk groups specifically recommended to receive vaccination, translation into public health and advocacy organization messaging remains suboptimal. This represents a missed opportunity and area for improvement given the benefits of vaccination for PLWD.

Prioritization of future new vaccines introduction: The experience of the Ethiopian National Immunization Technical Advisory Group.

BackgroundPublic contribution in research during the intervention development phase can help inform the design of relevant, acceptable, and effective interventions. However, the experiences and impact of public contribution activities are seldom reported, particularly in the intervention development phase. We integrated public contribution activities throughout a series of studies to inform the development and adaptation of a psychological intervention for people with dementia and depression. Aims were to: (1) explore the experience, process, and perceived impact of involving informal caregivers as public contributors; (2) explore how to involve people with dementia and male caregivers in future public contribution activities.MethodA Public Advisory Group (PAG) consisting of wives and daughters (n = 4) of people with dementia was established to help: (1) make sense and interpret findings from the studies to inform the development and adaptation of the psychological intervention; and (2) co‐design the intervention. Public contribution activities were recorded using impact logs (n = 9). Based on impact logs, recommendations were extracted and percentages of those implemented were calculated. Upon completion of the intervention development phase, semi‐structured interviews were held with public contributors (n = 4) and researchers (n = 3) to explore their experiences and perceived impact of public contribution activities. Interviews were analyzed using manifest content analysis.ResultPublic contributors made 158 recommendations across nine PAG meetings. In total, 76% of recommendations were implemented by the research team. Analysis of interviews generated three main categories: Perceived impacts; Interactions and processes; and Future challenges and opportunities. Interviews suggested that public contribution activities had a positive impact on the research e.g., by enhancing intervention acceptability and relevancy, and on researchers and public contributors themselves e.g., by gaining new knowledge and skills. Public contributors provided valuable suggestions to facilitate the involvement of people with dementia and male caregivers in future public contribution activities.ConclusionWe hope findings: (1) contribute to strengthening the evidence base on the impact of public contribution; and (2) offer insights in how to work effectively in partnership with public contributors. Future work should explore how to meaningfully involve people with dementia and male caregivers as public contributors.

BackgroundSeeing well matters to people living with dementia, so they can participate in activities they enjoy and maintain independence. People with dementia should be able to access person‐centred eyecare, wherever they reside. However, people with dementia are more likely to experience preventable vision loss than people without dementia, as they may miss out on regular eye tests or timely treatment for eye problems affecting vision. This risk is compounded by residing in long‐term care. To break down barriers to accessing dementia‐friendly eyecare in long‐term care facilities, this research aims to create a dementia eyecare pathway for integration into dementia care models in long‐term care.MethodsTo create the pathway and an implementation plan, we will undertake research activities informed by an established implementation framework (Consolidated Framework for Implementation Research):• Observational case study in a long‐term care facility, including observation of visits by domiciliary optometrists, and micro‐interviews with care staff, residents with and without dementia, visiting families and healthcare professionals.• Behavioural systems mapping of case study data, to identify key actors and relationships, verified through stakeholder engagement activities.• Audit of 25 care plans to identify how information about resident eyecare needs is documented.• Documentary analysis of policies relating to meeting of eyecare needs in the facility, and wider policies in Australian dementia care.• Literature review of existing domiciliary eyecare models/interventions across the worldFindings will be reviewed by an expert reference group uniting hospital, community and long‐term care perspectives on eyecare, and a project advisory group comprising people living with dementia and past/present carers. The draft pathway will be revised through two consultation rounds with the public, long‐term care sector leaders, eyecare professionals and medical specialists (e.g. geriatricians, general practitioners).ResultsFrom these activities, final outputs will be:1) An implementation‐ready dementia‐friendly eyecare pathway.2) An accompanying implementation plan, developed using the implementation framework.ConclusionAdopting a co‐design approach, together with a recognised implementation framework, allows barriers to pathway adoption/sustainment to be identified and addressed during pathway design. If everyone with dementia receives regular eye tests and eyecare, they can see well, to live well.

Supportive self-management in postural orthostatic tachycardia syndrome (POTS): A systematic review.