Barriers and drivers of public engagement in palliative care, Scoping review.

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.

Adolescent, caregiver and community experiences with a gender transformative, social emotional learning intervention.

BACKGROUND: Inequitable gender norms, beliefs and behaviors, are shaped by learning experiences during key developmental stages in an individual's life course, and can have negative impacts on health and well-being outcomes. Very early adolescence represents one stage when formative learning experiences about gender inequity can have the potential to support or hinder more equitable gender norms, beliefs and behaviors. The aim of this qualitative study was to evaluate the effect of a gender transformative, social emotional learning intervention for very young adolescents (VYAs) that included experiential learning with peers, parents/caregivers and community members. METHODS: This study examined the effects of an intervention designed to provide social emotional learning opportunities for adolescents ages 10-11 in Dar es Salaam, Tanzania. The qualitative sample included 279 participants. Qualitative methods included 102 in-depth interviews with VYAs, 22 focus groups with 117 VYAs, 60 in-depth interviews with parents/caregivers and 54 participant observations. A grounded theory approach was used to identify emergent themes. RESULTS: Participants reported growth in targeted areas of social emotional mindsets and skills, including a shift in gender norms, beliefs and behaviors. VYAs reported that experiential learning in mixed gender teams provided opportunities to actively practice and reflect on gender norms, beliefs and behaviors. VYAs also reported active practice of social emotional mindsets and skills with peers, parents/caregivers and the community. Parents/caregivers reported changes in VYAs' social emotional mindsets and skills within the home, with the community and with siblings and peers. Both adolescents and parent/caregivers reported positive change towards more equitable gender norms, beliefs and behaviors through participation in experiential learning activities and reflective discussions. CONCLUSIONS: These findings suggest that an intervention providing social and emotional experiential learning opportunities during the developmental window of very young adolescence can be effective in transforming gender norms, beliefs and behaviors. Involvement of peers, parents/caregivers and community members was effective at supporting learning social emotional mindsets and skills in VYAs. Findings encourage local and global adolescent programming to include gender transformative content paired with social emotional experiential learning with peers, family and the community and can stimulate positive change in gender norms, beliefs and behaviors to promote gender equity.

What do you mean by engagement? - evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations - scoping review.

BACKGROUND: Indigenous populations have remained strong and resilient in maintaining their unique culture and values, despite centuries of colonial oppression. Unfortunately, a consequential result of facing years of adversity has led Indigenous populations to experience a disproportionate level of poorer health outcomes compared to non-Indigenous populations. Specifically, the rate of Indigenous chronic disease prevalence has significantly increased in the last decade. Many of the unique issues Indigenous populations experience are deeply rooted in their colonial history and the intergenerational traumas that has subsequently impacted their physical, mental, emotional and spiritual well-being. With this, to better improve Indigenous health outcomes, understanding the local context of their challenges is key. Studies have begun to use modes of community engagement to initiate Indigenous partnerships and design chronic disease-based interventions. However, with the lack of a methodological guideline regarding the appropriate level of community engagement to be used, there is concern that many interventions will continue to fall short in meeting community needs. OBJECTIVE: The objective of this study was to investigate the how various community engagement strategies have been used to design and/or implement interventions for Indigenous populations with chronic disease. METHODS: A scoping review guided by the methods outlined by Arksey and O'Malley was conducted. A comprehensive search was completed by two reviewers in five electronic databases using keywords related to community engagement, Indigenous health and chronic disease. Studies were reviewed using a descriptive-analytical narrative method and data was categorized into thematic groups reflective of the main findings. RESULTS: We identified 23 articles that met the criteria for this scoping review. The majority of the studies included the use a participatory research model and the procurement of study approval. However, despite the claimed use of participatory research methods, only 6 studies had involved community members to identify the area of priority and only five had utilized Indigenous interview styles to promote meaningful feedback. Adapting for the local cultural context and the inclusion of community outreach were identified as the key themes from this review. CONCLUSION: Many studies have begun to adopt community engagement strategies to better meet the needs of Indigenous Peoples. With the lack of a clear guideline to approach Indigenous-based participatory research, we recommend that researchers focus on 1) building partnerships, 2) obtaining study approval and 3) adapting interventions to the local context.

Understanding how communities respond to COVID-19: experiences from the Orthodox Jewish communities of Antwerp city.

BACKGROUND: The importance of community involvement in the response against disease outbreaks has been well established. However, we lack insights into local communities' experiences in coping with the current COVID-19 pandemic. This study explored both the impact of, and response to, COVID-19 within the Orthodox Jewish communities of Antwerp (Belgium) during the first lockdown period (March 2020 - May 2020). METHODS: We conducted an explorative qualitative study using a participatory approach. First, we performed a community mapping to identify relevant stakeholders. Through the active involvement of a community advisory board and based on qualitative interviews with key-informants and community members, we elicited lived experiences, attitudes, and perceptions towards COVID-19. Interviews were conducted both face-to-face and using online web conferencing technology. Data were analyzed inductively according to the principles of thematic analysis. RESULTS: Government-issued outbreak control measures presented context-specific challenges to the Orthodox Jewish communities in Antwerp. They related mainly to the remote organization of religious life, and practicing physical distancing in socially and culturally strongly connected communities. Existing community resources were rapidly mobilized to adapt to the outbreak and to self-organize response initiatives within communities. The active involvement of community and religious leaders in risk communication proved to be of great importance to facilitate the coverage and uptake of pandemic control measures while protecting essential community values and traditions. Creating bottom-up and community-adapted communication strategies, including addressing language barriers and involving Rabbis in the dissemination of prevention messages, fostered a feeling of trust in government's response measures. However, unmet information and prevention needs were also identified, such as the need for inclusive communication by public authorities and the need to mitigate the negative effects of stigmatization. CONCLUSION: The experiences of Orthodox Jewish communities in Antwerp demonstrate a valuable example of a feasible community-centered approach to health emergencies. Increasing the engagement of communities in local decision-making and governance structures remains a key strategy to respond to unmet information and prevention needs.

Fear of Falling, Community Participation, and Quality of Life Among Community-Dwelling People Who Use Wheelchairs Full Time.

OBJECTIVES: To examine the differences in community participation and quality of life (QOL) among individuals who use wheelchairs full time with and without fear of falling (FOF). DESIGN: Cross-sectional study design. SETTING: University research laboratory. PARTICIPANTS: Individuals (N=85) who use a manual or power wheelchair full time who are living with various health conditions and have a history of at least 1 fall in the past 12 months (age, 45.4±15.8y; disability duration, 21.5±13.6y) were included. Forty-six (54%) were manual wheelchair users. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: To quantify FOF, participants responded (yes/no) to the question: "Are you worried or concerned that you might fall?" Community participation and QOL were indexed by the Community Participation Indicator (CPI) and the World Health Organization Quality of Life-Brief version (WHOQOL-BREF), respectively. A multivariate analysis of variance (MANOVA) was performed to examine the differences in CPI and WHOQOL-BREF scores among wheelchair users who reported FOF and no FOF. RESULTS: A total of 54 participants (63.5%) reported that they were worried or concerned about falling. The MANOVA revealed significant differences in overall CPI (F2,82=4.714; P=.012; Wilks' λ=0.897) and WHOQOL-BREF (F4,63=3.32; P=.016; Wilks' λ=.826) scores. Participants who reported FOF demonstrated significantly lower CPI and WHOQOL-BREF scores compared with those who did not report FOF. CONCLUSIONS: FOF and associated activity curtailment are prevalent and may be a factor influencing full time wheelchair users' community participation and QOL. Prospective research is needed to better understand how FOF influences community participation and QOL among individuals who use wheelchairs full time. Findings would support the development of interventions, specifically for individuals who use wheelchairs full time, to reduce FOF and improve community participation and QOL.

Outside the norm: Mental health, school adjustment and community engagement in non-binary youth.

Aims: The aim of this study was to explore the role of self-reported non-binary gender identity in mental health problems, school adjustment, and wish to exert influence on municipal issues in a community sample of adolescents. Methods: In a cross-sectional design, data were collected through an anonymous survey in Uppsala County, Sweden, among 8385 students (response rate 58.2%) in grades 7, 9, and 11, aged 13-17 years. The Strengths and Difficulties Questionnaire (SDQ) self-report was used to assess mental health problems. Gender identity was measured with one item and youth were categorized into those who identified as male or female (i.e. binary youth), and those who did or could not identify with either gender (i.e. non-binary youth). Logistic regressions and qualitative content analysis were used to analyse data. Results: Youth with non-binary gender identity (n = 137; 1.6%) had higher odds of having mental problems according to the SDQ total score (OR=3.05; 1.77-5.25). The association between non-binary gender identity and mental health problems remained significant after adjusting for confounders. Additionally, compared to their binary peers, the non-binary youth reported more truancy (36.5% vs 49.6%), more often failed a subject (21.5% vs 36.5%), and were more interested in exerting influence on municipal issues such as sociopolitical development, education, municipal services, and drug and alcohol policies (25.3% vs 38.0%). Conclusions: Youth with non-binary gender identity constitute a vulnerable population regarding mental health problems and school adjustment. The willingness to exert influence on municipal issues suggests a possible pathway to engagement.

How to make your research jump off the page: Co-creation to broaden public engagement in medical research.

Nina Finley and co-authors discuss public involvement in planning and reporting medical research.

Program of Active Consumer Engagement in Self-Management in Epilepsy: Replication and extension of a self-management randomized controlled trial.

OBJECTIVE: The Program of Active Consumer Engagement in Self-Management in Epilepsy (PACES) is an evidenced-based self-management intervention for adults with epilepsy. Prior randomized controlled trial (RCT) data show that PACES reduces depression and improves self-management, self-efficacy, and quality of life for 6 months postprogram. The objective of this study was to replicate a PACES RCT with key extensions: more diverse patient pool from community-based epilepsy centers; option for telephone-based participation; and longer follow-up (12 months with booster support for intervention group), to examine duration of impact and inform dissemination and implementation. METHODS: Participants were adults with chronic epilepsy (n = 101) without serious mental illness or substantive intellectual impairment, recruited from three epilepsy centers. Participants were randomly assigned to intervention or waitlist control groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, administered at baseline, postintervention (8 weeks), and 6 and 12 months postintervention. Intervention was an 8-week group of five to eight adults co-led by a psychologist and trained peer with epilepsy that met once per week by teleconference or in person at a hospital for 60-75 minutes. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, as well as community integration and epilepsy-related communication. Treatment group provided program evaluation. RESULTS: PACES participants (n = 49) improved relative to controls (n = 52) on the ESES (P < .022) and overall distress composite (P = .008). At 6 months, PACES participants remained improved on the ESES (P = .008) and composite (P = .001), and were improved on the ESMS (P = .005). At 12 months, PACES participants remained improved on the ESMS (P = .006) and were improved on an overall distress composite of combined measures (P = .018). Attrition was low (<6% in each group), and all program satisfaction ratings exceeded 4.0/5.0. SIGNIFICANCE: A consumer-generated epilepsy self-management program with broad psychosocial and medical emphasis can be effectively delivered by telephone or in person and facilitates long-term epilepsy self-management, adjustment, and coping up to 1 year after treatment.

Motivations and expectations driving community participation in entomological research projects: Target Malaria as a case study in Bana, Western Burkina Faso.

BACKGROUND: Most field entomology research projects require active participation by local community members. Since 2012, Target Malaria, a not-for-profit research consortium, has been working with residents in the village of Bana, in Western Burkina Faso, in various studies involving mosquito collections, releases and recaptures. The long-term goal of this work is to develop innovative solutions to combat malaria in Africa with the help of mosquito modification technologies. Since the start of the project, Bana residents have played an important role in research activities, yet the motivations and expectations that drive their participation remain under-investigated. This study examines the factors that motivate some members of the local community to contribute to the implementation of Target Malaria's activities, and, more broadly, explores the reasons that animate citizen participation in entomological research work in malaria-endemic regions. METHODS: A qualitative approach was used to survey the factors motivating members of the local community to assist in the implementation of Target Malaria's entomological research activities in Bana. Eighty-five individual in-depth and semi-structured interviews were conducted, followed by three focus groups, one with youths who had participated in mosquito collections, and two with adult men and women from the village. All data collected were fully transcribed, processed, and subjected to thematic content analysis. RESULTS: Data showed that the willingness of local community members to participate in entomological research activities was informed by a wide range of motivational factors. Although interviewees expressed their motivations under different semantic registers, the data showed a degree of consistency around five categories of motivation: (a) enhance domestic protection from mosquitoes and malaria, (b) contribute to a future world free of the disease, (c) acquire knowledge and skills, (d) earn financial compensation, and (e) gain social prestige for the village. CONCLUSION: These varying motivations reflect a set of differing personal and collective perceptions about the participation process, combining short and long-term, individual and collective motivations. Beyond the specific circumstances of this case, the study highlights the complex reasons that drive collective participation in entomological research and vector control activities. Detailed knowledge of community expectations should underpin any effort to mobilize local participation in field research activities.

Community factors affecting participation in larval source management for malaria control in Chikwawa District, Southern Malawi.

BACKGROUND: To further reduce malaria, larval source management (LSM) is proposed as a complementary strategy to the existing strategies. LSM has potential to control insecticide resistant, outdoor biting and outdoor resting vectors. Concerns about costs and operational feasibility of implementation of LSM at large scale are among the reasons the strategy is not utilized in many African countries. Involving communities in LSM could increase intervention coverage, reduce costs of implementation and improve sustainability of operations. Community acceptance and participation in community-led LSM depends on a number of factors. These factors were explored under the Majete Malaria Project in Chikwawa district, southern Malawi. METHODS: Separate focus group discussions (FGDs) were conducted with members from the general community (n = 3); health animators (HAs) (n = 3); and LSM committee members (n = 3). In-depth interviews (IDIs) were conducted with community members. Framework analysis was employed to determine the factors contributing to community acceptance and participation in the locally-driven intervention. RESULTS: Nine FGDs and 24 IDIs were held, involving 87 members of the community. Widespread knowledge of malaria as a health problem, its mode of transmission, mosquito larval habitats and mosquito control was recorded. High awareness of an association between creation of larval habitats and malaria transmission was reported. Perception of LSM as a tool for malaria control was high. The use of a microbial larvicide as a form of LSM was perceived as both safe and effective. However, actual participation in LSM by the different interviewee groups varied. Labour-intensiveness and time requirements of the LSM activities, lack of financial incentives, and concern about health risks when wading in water bodies contributed to lower participation. CONCLUSION: Community involvement in LSM increased local awareness of malaria as a health problem, its risk factors and control strategies. However, community participation varied among the respondent groups, with labour and time demands of the activities, and lack of incentives, contributing to reduced participation. Innovative tools that can reduce the labour and time demands could improve community participation in the activities. Further studies are required to investigate the forms and modes of delivery of incentives in operational community-driven LSM interventions.

A qualitative analysis of vaccine decision makers' conceptualization and fostering of 'community engagement' in India.

BACKGROUND: Globally, and in India, research has highlighted the importance of community engagement in achieving national vaccination goals and in promoting health equity. However, community engagement is not well-defined and remains an underutilized approach. There is also paucity of literature on community engagement's effectiveness in achieving vaccination outcomes. To address that gap, this study interviewed Indian vaccination decision makers to derive a shared understanding of the evolving conceptualization of community engagement, and how it has been fostered during India's Decade of Vaccines (2010-2020). METHODS: Semi-structured interviews were conducted with 25 purposefully sampled national-level vaccine decision makers in India, including policymakers, immunization program heads, and vaccine technical committee leads. Participants were identified by their 'elite' status among decisionmakers in the Indian vaccination space. Schutz' Social Phenomenological Theory guided development of an a priori framework derived from the Social Ecological Model. The framework helped organize participants' conceptualizations of communities, community engagement, and related themes. Inter-rater reliability was computed for a subsample of coded interviews, and findings were validated in a one-day member check-in meeting with study participants and teams. RESULTS: The interviews successfully elucidated participants' understanding of key terminology ("community") and approaches to community engagement propagated by the vaccine decision makers. Participants conceptualized 'communities' as vaccine-eligible children, their parents, frontline healthcare workers, and vaccination influencers. Engagement with those communities was understood to mean vaccine outreach, capacity-building of healthcare workers, and information dissemination. However, participants indicated that there were neither explicit policy guidelines defining community engagement nor pertinent evaluation metrics, despite awareness that community engagement is complex and under-researched. Examples of different approaches to community engagement ranged from vaccine imposition to empowered community vaccination decision-making. Finally, participants proposed an operational definition of community engagement and discussed concerns related to implementing it. CONCLUSIONS: Although decision makers had different perceptions about what constitutes a community, and how community engagement should optimally function, the combined group articulated its importance to ensure vaccination equity and reiterated the need for concerted political will to build trust with communities. At the same time, work remains to be done both in terms of research on community engagement as well as development of appropriate implementation and outcome metrics.

Opportunities for gender transformative approaches in a community-based drowning reduction program in Bangladesh.

BACKGROUND: Community-based programs in rural low-and middle-income country settings are well-placed to conduct gender transformative activities that aid program sustainability and catalyse wider social change, such as reducing gender inequities that in turn improve health outcomes. The Anchal program is a drowning prevention intervention for children aged 1-5 years old in rural Bangladesh. It provides community crèche-based supervision delivered by local trained paid-female volunteers. We aimed to identify the influence of the Anchal program on gender norms and behaviours in the community context, and the effects these had on program delivery and men and women's outcomes. METHODS: Qualitative in-depth interviews, focus group discussions and observations were conducted with program beneficiaries and providers. Gender outcomes were analysed using FHI 360's Gender Integration Framework. RESULTS: The Anchal program was found to be a gender accommodating program as it catered for communities' gender-based roles and constraints but did not actively seek to change underlying beliefs, perceptions and norms that led to these. The program in some cases enhanced the independence and status of female community staff. This changed perceptions of communities towards acceptable levels of physical mobility and community involvement for women. Conversely, gender affected program delivery by reducing the ability of female supervisory staff to engage with male community leaders. The double burden of wage and household labour carried by local female staff also limited performance and progression. Gender-based constraints on staff performance, attrition and community engagement affected efficiency of program delivery and sustainability. CONCLUSIONS: The Anchal program both adapted to and shaped community gender norms and roles. The program has well-established relationships in the community and can be leveraged to implement gender transformative activities to improve gender-based equity. Health programs can broaden their impacts and target social determinants of health like gender equity to increase program sustainability and promote equitable health outcomes.

Perceptions and experiences of frontline health managers and providers on accountability in a South African health district.

OBJECTIVE: Public primary health care and district health systems play important roles in expanding healthcare access and promoting equity. This study explored and described accountability for this mandate as perceived and experienced by frontline health managers and providers involved in delivering maternal, newborn and child health (MNCH) services in a rural South African health district. METHODS: This was a qualitative study involving in-depth interviews with a purposive sample of 58 frontline public sector health managers and providers in the district office and two sub-districts, examining the meanings of accountability and related lived experiences. A thematic analysis approach grounded in descriptive phenomenology was used to identify the main themes and organise the findings. RESULTS: Accountability was described by respondents as both an organisational mechanism of answerability and responsibility and an intrinsic professional virtue. Accountability relationships were understood to be multidirectional - upwards and downwards in hierarchies, outwards to patients and communities, and inwards to the 'self'. The practice of accountability was seen as constrained by organisational environments where impunity and unfair punishment existed alongside each other, where political connections limited the ability to sanction and by climates of fear and blame. Accountability was seen as enabled by open management styles, teamwork, good relationships between primary health care, hospital services and communities, investment in knowledge and skills development and responsive support systems. The interplay of these constraints and enablers varied across the facilities and sub-districts studied. CONCLUSIONS: Providers and managers have well-established ideas about, and a language of, accountability. The lived reality of accountability by frontline managers and providers varies and is shaped by micro-configurations of enablers and constraints in local accountability ecosystems. A 'just culture', teamwork and collaboration between primary health care and hospitals and community participation were seen as promoting accountability, enabling collective responsibility, a culture of learning rather than blame, and ultimately, access to and quality of care.

Characterizing Citizens' Preferences for Engagement in Patient Care and Research in Adult and Pediatric Intensive Care Units.

RATIONALE: Engagement promotes and supports the active participation of patients and families in health care and research to strengthen their influence on decision-making. We sought to characterize how citizens wish to be engaged in care and research in the intensive care unit (ICU). METHODS: Interviewers administered questionnaires to visitors in 3 adult ICUs and 1 pediatric ICU. RESULTS: We surveyed 202 (adult [n = 130] and pediatric [n = 72]) visitors. Adults and pediatric visitors prioritized 3 patient care topics (family involvement in rounds, improving communication between family members and health-care providers, and information transmission between health-care practitioners during patient transfers) and 2 research topics (evaluating prevention and recovery from critical illness). Preferred engagement activities included sharing personal experiences, identifying important topics and outcomes, and finding ways to make changes that respected their needs. Both respondent groups preferred to participate by completing electronic surveys or comment cards and answering questions on a website. Few respondents (<5%) wanted to participate in committees that met regularly. Although adult and pediatric respondents identified common facilitators and barriers to participation, they ranked them differently. Although both groups perceived engagement to be highly important, adult respondents were significantly less confident that their participation would impact care (7.6 ± 2.2 vs 8.3 ± 1.8; P = .01) and research (7.3 ± 2.4 vs 8.2 ± 2.0; P = .01) and were significantly less willing to participate in care (5.6 ± 2.9 vs 6.7 ± 3.0; P = .007) and research (4.7 ± 3.0 vs ± 5.8 ± 3.0; P = .02). CONCLUSIONS: Adult and pediatric visitors expressed comparable engagement preferences, identified similar facilitators and barriers, and rated engagement highly. Adult visitors were significantly less confident that their participation would be impactful and were significantly less willing to engage in care and research.

Consumer understanding of the scope of FDA's prescription drug regulatory oversight: A nationally representative survey.

PURPOSE: Misperceptions of how the US Food and Drug Administration (FDA) regulates prescription drugs may affect how consumers assess the safety and efficacy of prescription drugs. The study objective was to survey the public on their knowledge of FDA oversight regarding prescription drug approval and advertising. METHODS: In 2017, we conducted a nationally representative mail-push-to-web survey with 1,744 US adults. RESULTS: Although most respondents (86%) knew that FDA approves prescription drugs, we found misperceptions about what that approval means. In addition, few respondents understood FDA oversight of prescription drug advertising, with approximately half of respondents reporting that they did not know whether FDA approved these ads or components of the ads, and several mis-reporting that FDA approves these ads (31%) or components of the ads (22%-41%). CONCLUSIONS: Enhanced collaboration and communication with the public by key stakeholders in this space could increase public understanding of the roles and responsibilities of FDA.

Using a citizens' jury approach to determine a good nutrition resource for pregnant women.

OBJECTIVE: The development of user-friendly nutrition resources for pregnant women seldom involves end-users. This qualitative study used a citizens' jury approach to determine if our modification of a longstanding, frequently used dietitian-informed diet and diabetes booklet was deemed to be a good healthy eating resource for pregnant women. DESIGN: Midwives recruited thirteen first-time pregnant women not requiring specialist obstetric care or specialist dietetic advice for any reason. Participants were sent a copy of the modified healthy eating in pregnancy booklet prior to 'jury day'. Five women were unable to attend the citizens' jury citing reasons such as early labour. At the jury, five experts presented evidence. Participants adjourned, with an independent facilitator, to 'deliberate' as to whether the resource was suitable or not. The verdict was presented, and subsequent discussion was audio-recorded, transcribed and inductively content analysed. SETTING: Southland, New Zealand. PARTICIPANTS: Pregnant women aged 19-35 years (n 8), of whom half had a household income <$NZ30 000. RESULTS: The verdict was 'Yes'; the resource was good. Three themes were derived: communication of health information, resource content and harm reduction in pregnancy. Based on these data, ways to enhance the quality and usability of the booklet were evident. CONCLUSIONS: Citizens' juries can be used to obtain an independent assessment by end-users of health resources. Our modified diet and diabetes booklet was considered suitable for providing healthy eating advice to pregnant women. Inclusion of end-users' perspectives is critical for end-user relevant content, comprehension and resource credibility.

A multilevel mixed effects analysis of informal carers health in Australia: the role of community participation, social support and trust at small area level.

BACKGROUND: Informal carers suffer from worse health outcomes than non-carers due to their caregiving role. Yet, in a society carers health is as important as that of their care recipients. This study investigated the self-assessed mental and general health outcomes of informal carers in Australia. It evaluated the influence of carers' personal social capital- a logically linked sequence of their social behaviour such as community participation, social support and trust in others- on their health outcomes. The study estimated the magnitude of small area level variation at Statistical Area Level 1 (SA1) along with individual level variation in carers' health outcomes. METHODS: The study used a multilevel mixed effects cross-sectional design using data from the Household Income and Labour Dynamics of Australia survey, wave 14. It included Australians aged 15 years and older that were surveyed in the year 2014. The sample consisted of 12,767 individuals and 5004 SA1s. The outcome measures included- mental health, general health and physical functioning, domains of the Short Form 36 Questionnaire, a widely used multi-dimensional measure of health-related quality of life. RESULTS: Informal carers suffered from poor mental (Beta = - 0.587, p = 0.003) and general health (Beta = - 0.670, p = 0.001) outcomes compared to non-carers in Australia. These health outcomes exhibited significant variation acrossSA1s in Australia, with 12-13% variation in general and mental health. However, within small local areas, differences at the individual level, accounted for most of the variation in outcomes. Moreover, levels of community participation, personal social connection and trust, as perceived by individuals in the communities, had a positive influence on both mental and general health of carers and non-carers, and were more beneficial for carers compared to non-carers. CONCLUSION: It seems that the positive influence of social capital for carers helps them in coping with the negative impact of their caregiving duty on health outcomes. Findings suggested that some targeted community support programs for carers to build on their personal social cohesion and trust in their community could help in improving their poor health profiles. Moreover, improved informal carers' health may help the health system in better managing their resources.

Cross-sectional and longitudinal associations between receptive arts engagement and loneliness among older adults.

PURPOSE: Loneliness in older adulthood is a societal and public health challenge warranting identification of sustainable and community-based protective factors. This study investigated whether frequency of receptive arts engagement is associated with lower odds of loneliness in older adults. METHODS: We used data of respondents from waves 2 (2004-2005) and 7 (2014-2015) of the English Longitudinal Study of Ageing (ELSA) and examined cross-sectional (n = 6222) and longitudinal (n = 3127) associations between frequency of receptive arts engagement (including visits to the cinema, museums/galleries/exhibitions, theatre/concerts/opera) and odds of loneliness (cut-off ≥ 6 on three-item short form of the Revised UCLA Loneliness Scale). We fitted logistic regression models adjusted for a range of sociodemographic, economic, health and social, community and civic engagement factors. RESULTS: Cross-sectionally, we found dose-response negative associations between engagement with all receptive arts activities and odds of loneliness. Prospectively, in the fully-adjusted models we found most robust evidence for the negative association between engagement with museums/galleries/exhibitions and odds of loneliness (OR = 0.68, 95% CI 0.48-0.95) for those who engaged every few months or more often compared with those who never engaged. We found weaker evidence for lower odds of loneliness for more frequent engagement with theatre/concerts/opera. CONCLUSIONS: Frequent engagement with certain receptive arts activities and venues, particularly museums, galleries and exhibitions, may be a protective factor against loneliness in older adults. Future research is needed to identify the mechanisms through which this process may occur, leading to better understanding of how arts activities and venues can reduce loneliness among older adults.

Redefining community based on place attachment in a connected world.

The concept of community is often used in environmental policy to foster environmental stewardship and public participation, crucial prerequisites of effective management. However, prevailing conceptualizations of community based on residential location or resource use are limited with respect to their utility as surrogates for communities of shared environment-related interests, and because of the localist perspective they entail. Thus, addressing contemporary sustainability challenges, which tend to involve transnational social and environmental interactions, urgently requires additional approaches to conceptualizing community that are compatible with current globalization. We propose a framing for redefining community based on place attachment (i.e., the bonds people form with places) in the context of Australia's Great Barrier Reef, a World Heritage Area threatened by drivers requiring management and political action at scales beyond the local. Using data on place attachment from 5,403 respondents residing locally, nationally, and internationally, we identified four communities that each shared a type of attachment to the reef and that spanned conventional location and use communities. We suggest that as human-environment interactions change with increasing mobility (both corporeal and that mediated by communication and information technology), new types of people-place relations that transcend geographic and social boundaries and do not require ongoing direct experience to form are emerging. We propose that adopting a place attachment framing to community provides a means to capture the neglected nonmaterial bonds people form with the environment, and could be leveraged to foster transnational environmental stewardship, critical to advancing global sustainability in our increasingly connected world.

Understanding the challenges faced in community-based outreach programs aimed at men who have sex with men in urban Indonesia.

Background Community-based outreach programs play an important role in the provision of HIV testing, treatment and health care for men who have sex with men (MSM) in Indonesia. However, qualitative studies of community-based HIV programs have mostly focused on clients rather than on outreach workers (OW). The experiences of MSM peer OW provide insights into how to extend and improve community involvement in HIV programs in Indonesia. METHODS: This is a qualitative study based on focus group discussions, which brought together MSM OW (n = 14) and healthcare workers (n = 12). This approach facilitated documentation of the challenges associated with community-based outreach programs in Indonesia through a participatory focus group discussion between OW and healthcare workers. RESULTS: Findings are reported in relation to challenges experienced in the context of community outreach, and solutions to the challenges faced by OW. It was found that awareness of a shared commitment to delivering HIV programs can facilitate good relationships between OW and healthcare workers. CONCLUSION: Future efforts should consider the role of OW within broader relationships, especially with healthcare workers, when developing community-based responses to HIV testing and treatment. Documenting the role of OW can help contribute to an understanding of ways to adapt HIV programs to reduce barriers to access both for those identified as MSM and others who are ambiguously placed in relation to the programmatic use of such categories.