Tande nou gwonde! (Hear us roar!)- Youth perspectives of maternal near-misses: Protocol for a photovoice study of young childbearing people's perspectives of maternal near-misses in northwest Haiti.

INTRODUCTION: Globally, a shift is occurring to recognize the importance of young peoples' health and well-being, their unique health challenges, and the potential they hold as key drivers of change in their communities. In Haiti, one of the four leading causes of death for those 20-24 years old is pregnancy, childbirth, and the weeks after birth or at the end of a pregnancy. Important gaps remain in existing knowledge about youth perspectives of maternal health and well-being within their communities. Youth with lived experiences of maternal near-misses are well-positioned to contribute to the understanding of maternal health in their communities and their potential role in bringing about change. OBJECTIVES: To explore and understand youth perspectives of maternal near-miss experiences that occurred in a local healthcare facility or at home in rural Haiti. METHODS: We will conduct a qualitative, community-based participatory research study regarding maternal near-miss experiences to understand current challenges and identify solutions to improve community maternal health, specifically focused on youth maternal health. We will use Photovoice to seek an understanding of the lived experiences of youth maternal near-miss survivors. Participants will be from La Pointe, a Haitian community served by their local healthcare facility. We will undertake purposeful sampling to recruit approximately 20 female youth, aged 15-24 years. Data will be generated through photos, individual interviews and small group discussions (grouped by setting of near-miss experience). Data generation and analysis are expected to occur over a three-month period. ETHICS AND DISSEMINATION: Ethics approval will be sought from Centre Médical Béraca in La Pointe, Haiti, and from the Hamilton Integrated Research Ethics Board in Hamilton ON, Canada. We will involve community stakeholders, especially youth, in developing dissemination and knowledge mobilisation strategies. Our findings will be disseminated as an open access publication, be presented publicly, at conferences, and defended as part of a doctoral thesis.

Politicizing Children's Play: A Community Photovoice Process to Transform a School Playground.

IMPORTANCE:  Contextual elements at school playgrounds compromise the right to play. An occupation-based social transformation project to foster occupational justice in play at a school playground was conducted. OBJECTIVE:  To better understand barriers to and facilitators of children's participation in occupations at the school playground to co-create actions that enable play.  Design: A participatory methodology-Photovoice-was used. The research consisted of four phases: involving the community in the research design, community-led data generation and analysis, discussion of findings to increase the community's awareness, and a community agenda for changing the playground. SETTING: Public primary school playground in northwest Spain. PARTICIPANTS: All children (n = 450, ages 3-12 yr), families (n = 12), and teachers (n = 15) participated. A thematic analysis of visual, textual, and oral material was conducted, including member checking.  Results: The study revealed several barriers to play, including the short recess duration, poor floor (surface) conditions, jail-like atmosphere, and violence. However, participants identified an ad hoc lending games system and playground murals advocating for children's rights as facilitators. These findings have direct implications for improving the play environment. CONCLUSIONS AND RELEVANCE:  Conflicting priorities between children's and adults' desires and needs for the playground were unveiled, displaying the relevance of invisible contexts (i.e., social or institutional contexts) in shaping play opportunities. A critical occupational stance combined with a participatory and playful methodology generated space to unveil these conflicting priorities, reconcile agendas, raise awareness, and propose collective actions to transform the playground. Plain-Language Summary: Playing is fundamental to children's development and inclusion. This study focused on making school playgrounds better places for kids to play. Researchers found that things such as short playtimes, bad playground conditions, and violence made it tough for kids to enjoy playing, but they also discovered some good things, such as a system for borrowing games and colorful murals promoting children' rights. These findings show that changing the playground's physical and social environment can make a big difference for kids. By listening to kids and working together, adults and children can create playgrounds where all kids can play meaningfully and safely. Occupational therapists can promote such processes.

PReventing and Approaching Crises for frail community-dwelling patients Through Innovative Care (PRACTIC): protocol for an effectiveness cluster randomised controlled trial.

BACKGROUND: Demographic changes, with an increasing number and proportion of older people with multimorbidity and frailty, will put more pressure on home care services in municipalities. Frail multimorbid people receiving home care services are at high risk of developing crises, defined as critical challenges and symptoms, which demand immediate and new actions. The crises often result in adverse events, coercive measures, and acute institutionalisation. There is a lack of evidence-based interventions to prevent and resolve crises in community settings. METHODS: This is a participatory action research design (PAR) in a 6-month cluster randomised controlled trial (RCT). The trial will be conducted in 30 municipalities, including 150 frail community-dwelling participants receiving home care services judged by the services to be at risk of developing crisis. Each municipality (cluster) will be randomised to receive either the locally adapted TIME intervention (the intervention group) or care as usual (the control group). The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) is a manual-based, multicomponent programme that includes a rigorous assessment of the crisis, one or more interdisciplinary case conferences, and the testing and evaluation of customised treatment measures. PAR in combination with an RCT will enhance adaptations of the intervention to the local context and needs. The primary outcome is as follows: difference in change between the intervention and control groups in individual goal achievement to resolve or reduce the challenges of the crises between baseline and 3 months using the PRACTIC Goal Setting Interview (PGSI). Among the secondary outcomes are the difference in change in the PGSI scale at 6 months and in neuropsychiatric symptoms (NPSs), quality of life, distress perceived by professional carers and next of kin, and institutionalisation at 3 and 6 months. DISCUSSION: Through customised interventions that involve patients, the next of kin, the social context, and health care services, crises may be prevented and resolved. The PReventing and Approaching Crises for frail community-dwelling patients Through Innovative Care (PRACTIC) study will enhance innovation for health professionals, management, and users in the development of new knowledge and a new adapted approach towards crises. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05651659. Registered 15.12.22.

Co-designing Entrustable Professional Activities in General Practitioner's training: a participatory research study.

BACKGROUND: In medical education, Entrustable Professional Activities (EPAs) have been gaining momentum for the last decade. Such novel educational interventions necessitate accommodating competing needs, those of curriculum designers, and those of users in practice, in order to be successfully implemented. METHODS: We employed a participatory research design, engaging diverse stakeholders in designing an EPA framework. This iterative approach allowed for continuous refinement, shaping a comprehensive blueprint comprising 60 EPAs. Our approach involved two iterative cycles. In the first cycle, we utilized a modified-Delphi methodology with clinical competence committee (CCC) members, asking them whether each EPA should be included. In the second cycle, we used semi-structured interviews with General Practitioner (GP) trainers and trainees to explore their perceptions about the framework and refine it accordingly. RESULTS: During the first cycle, 14 CCC members agreed that all the 60 EPAs should be included in the framework. Regarding the formulation of each EPAs, 20 comments were given and 16 adaptations were made to enhance clarity. In the second cycle, the semi-structured interviews with trainers and trainees echoed the same findings, emphasizing the need of the EPA framework for improving workplace-based assessment, and its relevance to real-world clinical scenarios. However, trainees and trainers expressed concerns regarding implementation challenges, such as the large number of EPAs to be assessed, and perception of EPAs as potentially high-stakes. CONCLUSION: Accommodating competing stakeholders' needs during the design process can significantly enhance the EPA implementation. Recognizing users as experts in their own experiences empowers them, enabling a priori identification of implementation barriers and potential pitfalls. By embracing a collaborative approach, wherein diverse stakeholders contribute their unique viewpoints, we can only create effective educational interventions to complex assessment challenges.

Men's mental health - Conceptualization, effects, and coping.

Men are predisposed to suffer with unaddressed depression and anxiety. This study sought to empower men, in three urban, racially/ethnically diverse, underserved, and impoverished neighborhoods, for mental health self-care by capturing their perceptions of depression and anxiety. Using community-based participatory research, in the context of long-term partnerships between a department of nursing and these neighborhoods, the researchers recruited 50 men aged 23-83 years. Data were collected via six homogeneous, zoom-based focus groups composed of Black, Hispanic, and White men, respectively. The men identified themes pertaining to the conceptualization and devastating effects of depression and anxiety as well as coping strategies employed to mitigate the symptoms.

Examining menstrual health experiences in Philadelphia, PA: A qualitative investigation.

BACKGROUND: While menstruation is a physiologic process, it remains highly stigmatized. Despite the sheer number of menstruators, menstruation is a highly individualized experience, with wide variation in duration, symptoms, and management. This wide variability lends itself to large disparities in access to menstruation management products and subsequently the lived experience of menstruators. OBJECTIVES: The research team sought to understand lived menstrual experiences, symptoms, management tactics, and commonly used and desired resources among 20 cisgendered women aged 18-45 years in Philadelphia. DESIGN: This project was a qualitative research study. METHODS: We used a collaborative, community-based participatory research approach with No More Secrets, a Philadelphia-based grassroots sexuality awareness and menstrual health hub. Semi-structured telephone interviews were used to gain insight into general menstruation-related experiences, communication, worries, and concerns, with subsequent thematic analysis via Key Words in Context approach. RESULTS: Four themes emerged following analysis: cycle characteristics, menstruation management, coping resources, and future resources. Participants largely spoke about their menses as a negative experience, asked for more comprehensive, verified sources of information and needed greater access to menstrual management supplies. CONCLUSION: Menstruation is a highly individualized experience with a large variety in knowledge, menstrual product use, and individual needs. Despite the individuality of menstruation, our community-based research shows that there is a dire need for interventions that promotes knowledge and access to menstrual care.

Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework.

BACKGROUND: A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case. METHODS: The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software. RESULTS: The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research. CONCLUSION: In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.

"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.

Healthcare Service Utilization and Perceived Gaps: The Experience of French-Speaking 2S/LGBTQI+ People in Manitoba.

Ethnolinguistically diverse 2S/LGBTQI+ (two-spirit, lesbian, gay, bisexual, transgender, queer and intersex) populations have unique healthcare needs and experience health inequities compared to their cisgender or heterosexual peers. This community-based participatory study sought to describe the profile and healthcare needs and experiences of official language minority French-speaking 2S/LGBTQI+ adults in Manitoba. Participants (N = 80) reported that gender and sexual identity were often concealed from service providers; many respondents faced discrimination based on their ethnolinguistic and sexual identities. Service gaps are identified pertaining to mental and sexual health; locating 2S/LGBTQI+-friendly, patient-centred care in French is difficult. Policy and practice should address systemic inequity and discrimination experienced by this equity-seeking population.

Effectiveness of a community-based participatory health promotion intervention to address knowledge, attitudes and practices related to intimate partner violence: a quasi-experimental study.

BACKGROUND: Intimate partner violence is the most common form of violence experienced by women. It has detrimental consequences. A range of determinants cause intimate partner violence and to reduce it, effective interventions are required to address the determinants. Health promotion interventions have been recommended as effective to enable people to control over the determinants and to improve health. Hence, a community based participatory health promotion intervention was developed and tested in a selected study setting. The objective was to evaluate the effectiveness of a health promotion intervention in terms of addressing knowledge, attitudes and practices related to intimate partner violence. METHODS: A quasi-experimental study was conducted by recruiting ninety women aged 15 to 49 years separately from two health administrative areas identified as the intervention area and the control area from the Kandy district of Sri Lanka. A pretested interviewer-administered questionnaire was used in both pre- and post-assessments. Selected groups of women from the intervention area were facilitated with a health promotion intervention to improve knowledge, attitudes and practices related to intimate partner violence. To evaluate the effectiveness of the intervention descriptive summaries and bivariate analysis were used. RESULTS: The response rate was 90.9% (N = 90) during the pre-assessment and 87.9% (n = 87) and 82.8% (n = 82) from the intervention and control areas, respectively, during the post-assessment. Statistically significant improvement was reported in the total mean score comprising knowledge, attitudes, practices and identification of determinants from 59.6 to 80.8 in the intervention area [Pre-assessment: Mean = 59.6 (standard deviation-SD) = 17.5; Post-assessment: Mean = 80.8, SD = 19.0; p < 0.001) compared to the improvement in the control area from 62.2 to 63.0 (Pre-assessment: Mean = 62.2, SD = 17.3; Post-assessment: Mean = 63.0, SD = 18.9; p = 0.654). CONCLUSIONS: The intervention was effective to improve knowledge, attitudes and practices related to intimate partner violence. Hence, the present approach can be used in similar contexts to address the knowledge, attitudes and certain practices related to intimate partner violence.

Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury.

Background Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents' and clinicians' perspectives regarding HOPE's usability, acceptability, and future implementation. Methods Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis. Results Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE's family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI. Conclusions HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study's findings demonstrate HOPE's usability and acceptability from end-users' perspectives and will guide implementation.

Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers.

Integrating the voices of service users and providers in the design and delivery of health services increases the acceptability, relevance, and effectiveness of services. Such efforts are particularly important for youth opioid use treatments and services, which have failed to consider the unique needs of youth and families. Applying community-based participatory research (CBPR) and co-design can facilitate this process by contextualizing service user experiences at individual and community levels and supporting the collaborative design of innovative solutions for improving care. However, few studies demonstrate how to effectively integrate these methods and engage underserved populations in co-design. As such, this manuscript describes how our team wove CBPR and co-design methods to develop solutions for improving youth opioid use treatments and services in Canada. As per CBPR methods, national, provincial, and community partnerships were established to inform and support the project's activities. These partnerships were integral for recruiting service users (i.e., youth and caregivers) and service providers to co-design prototypes and support local testing and implementation. Co-design methods enabled understanding of the needs and experiences of youth, caregivers, and service providers, resulting in meaningful community-specific innovations. We used several engagement methods during the co-design process, including regular working group meetings, small group discussions, individual interviews and consultations, and feedback grids. Challenges involved the time commitment and resources needed for co-design, which were exacerbated by the COVID-19 pandemic and limited our ability to engage a diverse sample of youth and caregivers in the process. Strengths of the study included youth and caregiver involvement in the co-design process, which centered around their lived experiences; the therapeutic aspect of the process for participants; and the development of innovations that were accepted by design partners.

Awareness and Knowledge of HIV-Associated Neurocognitive Disorder Among Middle-Aged and Older People Living With HIV/AIDS in Southern Nevada: Implications for HIV/AIDS Community-Based Education Programs.

Although a significant amount of biomedical research has been conducted to study HIV-associated neurocognitive disorder (HAND), there has been scant research done to assess the awareness and knowledge of this public health concern among middle-aged and older people living with HIV/AIDS (PLWH). Our qualitative community-based participatory research study sought to address this research gap by examining the awareness and knowledge of HAND among relevant stakeholders in southern Nevada, USA. We conducted 15 semistructured interviews with middle-aged and older PLWH to examine their awareness and knowledge of HAND and access to pertinent resources. After our thematic analysis of our interviews, we identified two overarching themes: (1) limited awareness and knowledge of HAND among PLWH, and (2) southern Nevada social determinants of health. Our findings underscore the importance of raising awareness and knowledge of HAND among PLWH through community-based education programs, and improving access to resources related to social determinants of health.