Applying the dissemination and implementation sciences to allergy and immunology: A Work Group Report from the AAAAI Quality, Adherence, and Outcomes Committee.

Translating evidence-based practice (EBP) into real-world clinical settings often takes a considerable amount of time and resources. In allergy and immunology, the dissemination and implementation (D&I) sciences facilitate the study of how variations in knowledge, resources, patient populations, and staffing models lead to differences in the clinical care of asthma, allergic disease, and primary immunodeficiency. Despite the need for validated approaches to study how to best apply EBP in the real world, the D&I sciences are underutilized. To address this gap, an American Academy of Allergy, Asthma & Immunology (AAAAI) work group was convened to provide an overview for the role of the D&I sciences in clinical care and future research within the field. For the D&I sciences to be leveraged effectively, teams should be multidisciplinary and inclusive of community and clinical partners, and multimethods approaches to data collection and analyses should be used. Used appropriately, the D&I sciences provide important tools to promote EBP and health equity as well as optimization of clinical practice in allergy and immunology.

Critical Feminist Epidemiology in Action: Reflections from a Multidisciplinary Partnership Between Mujeres Unidas y Activas and Academic Researchers.

Critical feminist research addresses social inequities, encourages equitable partnerships between researchers and participants, and acknowledges that research can be inherently political. Building upon critical feminist research practices, community-based participatory research, and social and structural epidemiology, we propose the approach of critical feminist epidemiology. A critical feminist epidemiology approach can study community and population health inequities with an eye towards identifying interventions that reduce inequities, through research processes that center the lived experiences of people from minoritized genders. We describe how our interdisciplinary, community-led team used a critical feminist epidemiology approach for an applied public health research project. Mujeres Unidas y Activas, a community organizing non-profit led by and for Latina and Indigenous immigrant women, partnered with academic researchers to conduct community-led research around how their approach to building community power affected the health and wellbeing of organization members and their families. Critical feminist epidemiology is a promising approach for conducting research that is grounded in and relevant to the lives of women and gender expansive people. Building upon social epidemiology and community-based participatory research, critical feminist epidemiology can be a useful research approach to generate novel evidence to inform action towards health equity for communities and populations.

Using Participatory Implementation Science to Advance Health Equity.

Participatory approaches to implementation science (IS) offer an inclusive, collaborative, and iterative perspective on implementing and sustaining evidence-based interventions (EBIs) to advance health equity. This review provides guidance on the principles and practice of participatory IS, which enables academic researchers, community members, implementers, and other actors to collaboratively integrate practice-, community-, and research-based evidence into public health and health care services. With a foundational focus on supporting academics in coproducing knowledge and action, participatory IS seeks to improve health, reduce inequity, and create transformational change. The three main sections of this review provide (a) a rationale for participatory approaches to research in implementation science, (b) a framework for integrating participatory approaches in research utilizing IS theory and methods, and (c) critical considerations for optimizing the practice and impact of participatory IS. Ultimately, participatory approaches can move IS activities beyond efforts to make EBIs work within harmful systems toward transformative solutions that reshape these systems to center equity.

Living Flat: Stories from Women of Color After Mastectomy.

BACKGROUND: There remain persistent racial and ethnic disparities in the receipt of post-mastectomy breast reconstruction for breast cancer. Yet, patient-reported outcomes and advocacy efforts around living flat overwhelmingly have focused on white women. We sought to characterize the lived experiences among women of color living flat after mastectomy for breast cancer. PATIENTS AND METHODS: Our community-partnered study included a sociodemographic and health questionnaire followed by semistructured interviews. Using an interview guide designed in an interdisciplinary manner, we explored themes related to culture and community after mastectomy. Women ≥ 18 years old who underwent mastectomy without reconstruction for breast cancer were included. Interviews were performed by formally trained community-based research fellows and conducted virtually over video conferencing, recorded, and transcribed. Data were analyzed on NVivo using an integrated (inductive and deductive) team-based approach. RESULTS: The final cohort included 20 women, 60% identified as Black, 20% as Asian, 10% as multiracial, 5% as Latina, and 5% as white. Key concepts included: (a) cancer stigma, (b) privacy around breasts, (c) finding support through shared experiences, (d) sacrifice of breast for life/health, (e) spirituality, (f) patients' familial roles and relationship to breast, and (g) societal expectations. Women described the intersection of cancer stigma and privacy around breasts influencing knowledge of family history and support during cancer treatment. CONCLUSION: Among women of color, breast cancer stigma and spirituality are key contributors to quality of life after mastectomy without breast reconstruction, domains not routinely included in contemporary patient-reported outcome measures. Representation of diverse experiences is critical to achieving equity.

Anxiety in Turner syndrome: Engaging community to address barriers and facilitators to diagnosis and care.

Turner syndrome (TS), caused by complete or partial loss of the second sex chromosome, is associated with complex medical manifestations. The TS community identifies anxiety as a major contributor to reduced quality of life. The study aimed to improve understanding of anxiety symptomatology, diagnosis, and care in individuals with TS. A mixed methods design integrated community engagement, including community leaders as co-investigators and a community advisory board, an online survey (N = 135), and in-depth interviews (N = 10). The majority of respondents reported that anxiety symptoms occur two or more days per week, with self-advocates reporting more frequent symptoms than caregivers (p = 0.03). Self-advocates reported feeling anxious more often at school/work; both rater groups reported anxiety-related behaviors were most likely to be expressed at home. Insomnia was the most common symptom of anxiety endorsed across age and rater groups (>70%). Anxiety symptoms and triggers changed with age and often were undiagnosed or untreated during childhood. Therapy and medication were reported as helpful by most respondents who had tried these strategies. Qualitative themes included: 'Triggers for anxiety are related to TS', 'Anxiety impacts the whole family', and 'Opportunities for early identification and intervention'.

Implementation Science for HIV Prevention and Treatment in Indigenous Communities: a Systematic Review and Commentary.

PURPOSE OF REVIEW: We systematically reviewed implementation research conducted in Indigenous communities in the Americas and the Pacific that focused on improving delivery of HIV preventive or treatment services. We highlight strengths and opportunities in the literature and outline principles for Indigenous-led, HIV-related implementation science. RECENT FINDINGS: We identified 31 studies, revealing a consistent emphasis on cultural tailoring of services to Indigenous communities. Common barriers to implementation included stigma, geographic limitations, confidentiality concerns, language barriers, and mistrust. Community involvement in intervention development and delivery emerged as a key facilitator, and nearly half of the studies used community-based participatory research methods. While behavioral HIV prevention, especially among Indigenous youth, was a major focus, there was limited research on biomedical HIV prevention and treatment. No randomized implementation trials were identified. The findings underscore the importance of community engagement, the need for interventions developed within Indigenous communities rather than merely adapted, and the value of addressing the social determinants of implementation success. Aligned to these principles, an indigenized implementation science could enhance the acceptability and reach of critical HIV preventive and treatment services in Indigenous communities while also honoring their knowledge, wisdom, and strength.

Bridging frontiers: The role of a Global Breast Research Working Group.

Breast cancer remains a significant cause of death for women globally, despite advancements in detection and treatment, low- and middle-income countries face unique obstacles. Role of Research Working Group (RWG) can expedite research progress by fostering collaboration between scientists, clinicians, and stakeholders. Benefits of a Global RWG include pooling resources and expertise to develop new research ideas, addressing disparities, and building local research capacity, with the potential to improve breast cancer research and outcomes.

"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities.

PURPOSE: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS: We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS: Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS: Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

Fifty Years of Connection: Characterizing the Social Network of a Primary Care Research Organization.

PURPOSE: This study marks the 50th anniversary of NAPCRG (formerly the North American Primary Care Research Group) by examining social connections among members. METHODS: This descriptive social network analysis was conducted via the Program to Analyze, Record, and Track Networks to Enhance Relationships (PARTNER) survey tool. RESULTS: Responses from 906 participants resulted in 1,721 individuals with 5,196 partner relationships. Most relationships (60%) were characterized as having an integrated level of collaboration. Many relationships led to a research paper (58%) or a grant (34%). CONCLUSIONS: This social network analysis of NAPCRG members' relationships described over 5,000 relationships, many producing publications, grants, and perceived advancements in primary care.

A qualitative study of childhood cancer families' post-treatment needs and the impact of a community-based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

BACKGROUND: Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference. PROCEDURE: We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners. RESULTS: Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication. CONCLUSIONS: Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.

Successes and challenges of partnership working to tackle health inequalities using collaborative approaches to community-based research: mixed methods analysis of focus group evidence.

BACKGROUND: The concept of collaborative approaches involves community residents in joint decision-making processes to maintain or enhance their material and social conditions. During COVID-19, public services saw the benefits of actively collaborating with communities and involving residents in decision-making processes. As communities have resources and assets, they are well-placed to contribute to developing local health and wellbeing initiatives. An interdisciplinary and nationally funded three-phase research programme, "Mobilising community assets to tackle health inequalities", was established with the objective of utilising local, cultural, and natural assets to support health and wellbeing. The current study aimed to synthesise evidence collected by research teams awarded funding in phase one of the programme, comprising academic and non-academic, health and social care, voluntary and community partners. METHODS: Ten online focus groups were conducted with research teams from across the UK exploring the successes and challenges of partnership working to tackle health inequalities using collaborative approaches to community-based research. Eight focus group questions were split between partnership working and health inequalities. RESULTS: Thematic and content analysis produced 185 subthemes from which 12 themes were identified. Major themes representing an above average number of coded responses were research evidence; funding; relationships with partners; health inequalities and deprivation; community involvement; and health service and integrated care systems. Minor themes were link workers and social prescribing; training and support; place-based factors; longevity of programmes; setting up and scaling up programmes; and mental health. CONCLUSIONS: Successes included employing practice-based and arts-based methods, being part of a research project for those not normally involved in research, sharing funding democratically, building on established relationships, and the vital role that local assets play in involving communities. Challenges involved a lack of sustainable financial support, the short-term nature of funding, inconsistencies in reaching the poorest people, obtaining the right sort of research evidence, making sufficient research progress, building relationships with already over-burdened health care staff, and redressing the balance of power in favour of communities. Despite the challenges, participants were mainly optimistic that collective approaches and meaningful co-production would create opportunities for future research partnerships with communities.

Using community-based participatory research methods to build the foundation for an equitable integrated health data system within a Canadian urban context.

Health inequalities amplified by the COVID-19 pandemic have disproportionately affected racialized and equity-deserving communities across Canada. In the Municipality of Peel, existing data, while limited, illustrates that individuals from racialized and equity-deserving communities continue to suffer, receive delayed care, and die prematurely. In response to these troubling statistics, grassroots community advocacy has called on health systems leaders in Peel to work with community and non-profit organizations to address the critical data and infrastructure gaps that hinder addressing the social determinants of health in the region. To support these advocacy efforts, we used a community-based participatory research approach to understand how we might build a data collection ecosystem across sectors, alongside community residents and service providers, to accurately capture the data about the social determinants of health. This approach involved developing a community engagement council, defining the problem with the community, mapping what data is actively collected and what is excluded, and understanding experiences of sociodemographic data collection from community members and service providers. Guided by community voices, our study focused on sociodemographic data collection in the primary care context and identified which service providers use and collect these data, how data are used in their work, the facilitators and barriers to data use and collection. Additionally, we gained insight into how sociodemographic data collection could be respectful, safe, and properly governed from the perspectives of community members. From this study, we identify a set of eight recommendations for sociodemographic data collection and highlight limitations. This foundational community-based work will inform future research in establishing data governance in partnership with diverse and equity-deserving communities.

Urban Care for Unpaid Caregivers: Community Voices in the Care Block Program, in Bogotá, Colombia.

The Care Block of Bogotá, Colombia, is an urban program that offers services for low-income unpaid caregivers. This study aimed to (i) characterize unpaid caregivers' subjective well-being, mental health symptoms, physical activity levels, and use of public spaces linked to the Care Block; (ii) identify caregivers' perceived built and social environment facilitators and barriers to accessing the Care Block facility; and (iii) document the community-led advocacy process to improve the Care Block program. The quantitative component included a subjective well-being and mental health symptoms survey, and the System for Observing Play and Recreation in Communities (SOPARC) instrument. The qualitative component included the Our Voice citizen science method augmented with portable virtual reality equipment to engage participants in advocacy for changes. Participants (median age of 53 years) dedicated a median of 13.8 h a day to unpaid caregiving, had an average subjective well-being score of 7.0, and 19.1% and 23.8% reported having depression and generalized anxiety symptoms respectively. Caregivers reported that the program fosters their perception of purpose, enjoyment, resilience, and cognitive and emotional awareness. SOPARC evaluation showed that most women engaged in moderate to vigorous physical activity. The caregivers highlighted education, physical activity services, and integration of facilities as facilitators to accessing the Care Block program. Poor quality and lack of sidewalks and roads, limited personal safety, and the risk of pedestrian-vehicle collisions were identified as barriers. Virtual Reality sparked compelling dialogue between participants and stakeholders, allowing stakeholders to reflect on an urban program facilitating unpaid care work.

Improving mental health in black men through a 24-week community-based lifestyle change intervention: the black impact program.

BACKGROUND: Poor mental health is a leading cause of morbidity and mortality among Black men in the United States. Efforts to improve mental health among Black men have been hampered by a lack of access and utilization of mental health services. Physical activity and social networks have been shown to improve mental health. Thus, we examined the effect of a community team-based physical activity, health education and social needs intervention among Black men on mental health over 24 weeks. METHODS: Black adult males (n = 74) from a large Midwestern city participated in Black Impact, a 24-week community-based lifestyle change program adapted from the Diabetes Prevention Program and American Heart Association's (AHA) Check, Change, Control Blood Pressure Self-Management Program, which incorporates AHA's Life's Simple 7 (LS7) framework. Measures of mental health including the Center for Epidemiological Studies Depression Scale (CES-D), Patient Health Questionnaire 2-question depression screener (PHQ-2), and Perceived Stress Scale-10 (PSS-10) were completed at baseline, 12 and 24 weeks. The change in mental health scores from baseline to 12 and 24 weeks were evaluated using linear mixed-effects models adjusting for age, education, and income. The change in cardiovascular health scores, defined as objective metrics of LS7 (LS5 [blood pressure, total cholesterol, fasting glucose, body mass index and smoking]), by baseline mental health were evaluated using linear mixed-effects models with an interaction term (time*baseline mental health variable) and a random intercept for each participant. RESULTS: Among 71 Black men (mean age 51, 85% employed) at 24 weeks, CES-D scores decreased from 10.54 to 7.90 (-2.64, 95%CI:-4.74, -0.55), PHQ-2 decreased from 1.04 to 0.63 (-0.41, 95%CI: -0.75, -0.07), and PSS-10 decreased from 14.62 to 12.91 (-1.71, 95%CI: -3.53, 0.12). A 1-unit higher CES-D at baseline was associated with less improvement in LS5 scores by -0.04 (95%CI: -0.076, -0.005) and - 0.032 (95%CI:-0.067, 0.003) units at week 12 and 24, respectively, with similar findings for PSS. CONCLUSIONS: The Black Impact community-based lifestyle program has the potential to reduce depressive symptoms and stress in Black men. There is a dire need for larger, randomized studies to test the impact of Black Impact on mental health in Black men to advance health equity. TRIAL REGISTRATION: Retrospectively Registered, ClinicalTrials.gov Identifier: NCT04787978.

Mental health priorities and cultural-responsiveness of the Mental Health First Aid (MHFA) training for Asian immigrant populations in Greater Boston, Massachusetts.

BACKGROUND: Asians and Asian Americans have the lowest rate of mental health service utilization (25%) in the US compared to other racial/ethnic groups (39 - 52%), despite high rates of depression, anxiety, and suicidal ideation. The lack of culturally-responsive mental health trainings hinders access to mental health services for these populations. We assessed the mental health priorities of Asian communities in Greater Boston and evaluated cultural responsiveness of the Mental Health First Aid (MHFA), a first-responder training teaching participants skills to recognize signs of mental health and substance use challenges, and how to appropriately respond. METHODS: This is community-based participatory research with the Boston Chinatown Neighborhood Center (BCNC), Asian Women For Health (AWFH), and the Addressing Disparities in Asian Populations through Translational Research (ADAPT) Coalition. We conducted focus groups with community-based organization staff and community members to assess mental health priorities of Asian populations in Boston, MA. We then evaluated the utility and cultural-responsiveness of the English-language MHFA for Asian populations through pre- and post-training questionnaires and focus groups with community participants. Paired t-tests were used to evaluate questionnaire responses. Thematic analysis was used to analyze interviews. RESULTS: In total, ten staff and eight community members participated in focus groups, and 24 community members completed the MHFA and pre- and post-training questionnaires. Common mental health challenges in the Asian communities reported by participants were loneliness, high stigma around mental illnesses, academic pressure, and acculturation stress. Compared to pre-training, MHFA participants demonstrated lower personal mental health stigma (p < 0.001) and higher mental health literacy (p = 0.04) post-training. Participants also noted the lack of data statistics and case studies relevant to Asian populations in the training, and desired the training be offered in languages spoken by Asian ethnic subgroups (e.g., Chinese, Vietnamese). CONCLUSION: Cultural-responsiveness of the MHFA for Asian populations could be improved with the inclusion of data and case studies that capture common mental health challenges in the Asian communities and with translation of the MHFA to non-English languages predominant in Asian communities. Increasing the cultural relevance and language accessibility of the MHFA could facilitate wider adoption of these trainings across communities and help to reduce mental health stigma and gaps in literacy and service utilization.

Evaluation of the integration of palliative care in a fragile setting amongst host and refugee communities: Using consecutive rapid participatory appraisals.

BACKGROUND: Palliative care is seldom integrated in healthcare in fragile, conflict affected and vulnerable settings with significant refugee populations. AIM: This study aimed to evaluate the integration of palliative care into a fragile, conflict affected and vulnerable community in Northern Uganda. DESIGN: Consecutive Rapid Participatory Appraisals were conducted to evaluate the integration of palliative care in Adjumani District. The first established a baseline and the second, 4 years later, evaluated progress. Data collection included documentary review, key informant interviews and direct observation. SETTING/PARTICIPANTS: A rural district in Uganda with equal numbers of refugees and host populations living side-by-side. 104 key informants were interviewed, and practice observed in 11 health facilities. RESULTS: At baseline, palliative care was not routinely integrated in the health system. Barriers included health system challenges, cultural beliefs, understanding and trust, mental health issues, gaps in palliative care provision, the role of the community and beliefs about illness impacted care with the village health teams being a trusted part of the health system. Following integration activities including training, mentorship and community sensitisation, the repeat rapid appraisal after 4 years showed a significant increase in palliative care delivery. New themes identified included increased provision of palliative care, the impact of training and community engagement and ownership of palliative care. CONCLUSION: Community engagement and participation, training interventions and referral pathways enabled the integration of palliative care. Rapid Participatory Appraisal provides a useful framework to evaluate activities aimed at integration of palliative care in a community.

Tuakana-teina peer education programme to help Maori elders enhance wellbeing and social connectedness.

BACKGROUND: There are significant inequities between Maori (Indigenous people) and non-Maori in ageing outcomes. This study used a strengths-based approach based on the key cultural concept of mana motuhake (autonomy and self-actualisation) to develop a tuakana-teina (literally older sibling-younger sibling) peer education programme to assist kaumatua (elders) in addressing health and social needs. The purpose of this study was to test the impact on those receiving the programme. Three aims identify the impact on outcomes, resources received and the cost effectiveness of the programme. METHODS: Five Kaupapa Maori (research and services guided by Maori worldviews) iwi (tribe) and community providers implemented the project using a partnership approach. Tuakana (peer educators) had up to six conversations each with up to six teina (peer learners) and shared information related to social and health services. A pre- and post-test, clustered staggered design was the research design. Participants completed a baseline and post-programme assessment of health and mana motuhake measures consistent with Maori worldviews. Open-ended questions on the assessments, five focus groups, and four individual interviews were used for qualitative evaluation. FINDINGS: A total of 113 kaumatua were recruited, and 86 completed the programme. The analysis revealed improvements in health-related quality of life, needing more help with daily tasks, life satisfaction, paying bills and housing problems. Qualitative results supported impacts of the programme on mana motuhake and hauora (holistic health) through providing intangible and tangible resources. Cost-effectiveness analysis showed that the intervention is cost effective, with a cost per QALY of less than the conventional threshold of three times GDP per capita. CONCLUSIONS: A culturally-resonant, strengths-based programme developed through a participatory approach can significantly improve health and social outcomes in a cost-effective way. TRIAL REGISTRY: Clinical trial registry: Trial registration: (ACTRN12620000316909). Prospectively registered 06/03/2020, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379302&isClinicalTrial=False .

Involvement of children and young people in the conduct of health research: A rapid umbrella review.

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

Participatory research with carers: A systematic review and narrative synthesis.

INTRODUCTION: As patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. FINDINGS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. CONCLUSION: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. PATIENT AND PUBLIC INVOLVEMENT: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.

Community Preferences for Allied Health Services in Residential Aged Care.

INTRODUCTION: Exploring health consumer preferences in care is an essential foundational, and ongoing activity, when designing and delivering models of care. We undertook a study to explore: (i) what allied health (AH) services are most important to health consumers and (ii) how health consumers expect to access these services in residential aged care (RAC) to determine consumer priorities in future AH models of care in RAC. METHODS: A mixed method study was conducted with aged care residents and community members (friends or family of residents/people who believe they may use RAC services). The study comprised two focus-group activities where participants were asked to (1) rank the AH services most important to them and then (2) categorise how they would prefer to access each AH service. Focus group members used card sort methods (Q-methodology) to aid prioritisation, categorisation and discussion. Card sorting data were analysed using inverted factor analysis and descriptive statistics. Qualitative focus group data were deductively coded using a coding structure created by the research team informed by quantitative results. RESULTS: Data were collected from 16 participants who formed five focus groups in a community forum. The analysis revealed three factors, that represented shared meaning amongst groups of participants (viewpoints) regarding prioritisation of AH services: 'Prioritising urgent needs', 'Prioritising long-term healthy habits and lifestyle', and 'Prioritising social well-being'. Data from the card sort activity, which related to 'how health consumers expect to access AH services', were also categorised into three categories: 'It is always provided', 'A professional will assess my need' and 'I or my family will ask for this service if I need it'. Participants wanted most AH services to be provided regularly, with some such as 'Exercise and rehabilitation' and 'Meaningful activity' to be provided up to one hour every day. CONCLUSION: Consumers value a range of AH services and have an expectation that these will be provided in RAC on a regular basis. To ensure consumers make informed preferences regarding the future of services in RAC, health systems need to trial innovative AH models of care and embed consumer evaluation.