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BACKGROUND: Adverse childhood experiences (ACEs), in combination with adverse community environments, can result in traumatic stress reactions, increasing a person's risk for chronic physical and mental health conditions. Family resilience refers to the ability of families to withstand and rebound from adversity; it involves coping with disruptions as well as positive growth in the face of sudden or challenging life events, trauma, or adversities. This study aimed to identify factors contributing to family and community resilience from the perspective of families who self-identified as having a history of adversity and being resilient during the COVID-19 pandemic. METHODS: This study used Photovoice, a visual participatory research method which asks participants to take photographs to illustrate their responses to a research question. Participants consisted of a maximum variation sample of families who demonstrated family level resilience in the context of the pair of ACEs during the COVID-19 pandemic. Family members were asked to collect approximately five images or videos that illustrated the facilitators and barriers to well-being for their family in their community. Semi-structured in-depth interviews were conducted using the SHOWeD framework to allow participants to share and elucidate the meaning of their photos. Using thematic analysis, two researchers then independently completed line-by-line coding of interview transcripts before collaborating to develop consensus regarding key themes and interpretations. RESULTS: Nine families were enrolled in the study. We identified five main themes that enhanced family resilience: (1) social support networks; (2) factors fostering children's development; (3) access and connection to nature; (4) having a space of one's own; and (5) access to social services and community resources. CONCLUSIONS: In the context of additional stresses related to the COVID-19 pandemic, resilient behaviours and strategies for families were identified. The creation or development of networks of intra- and inter-community bonds; the promotion of accessible parenting, housing, and other social services; and the conservation and expansion of natural environments may support resilience and health.
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COVID-19 , Resiliência Psicológica , Criança , Humanos , Saúde da Família , Pandemias , Poder Familiar/psicologiaRESUMO
Living in neighborhoods with elevated rates of violent crime, such as in many poor Black American communities, is a risk factor for a range of physical and mental health challenges. However, the individual different factors that influence health outcomes in these stressful environments remain poorly understood. This study examined relations between exposure to violence, gun-carrying attitudes, and blood pressure in a community sample of street-identified Black American boys/men and girls/women. Survey data and blood pressure were collected from 329 participants (ages 16-54; 57.1% male) recruited from two small urban neighborhoods with high rates of violence using street participatory action research methodology. Results revealed that systolic blood pressure was elevated in the sample as was exposure to severe forms of direct and vicarious violence (e.g., shootings, assault). Attitudes about carrying guns moderated associations between the degree of violence exposure endorsed by participants and both systolic and diastolic blood pressure. Specifically, the positive association between exposure to violence and both systolic and diastolic blood pressure at low levels of pro-gun-carrying attitudes was no longer apparent at high levels of pro-gun attitudes. Furthermore, pro-gun attitudes appeared to moderate the association between exposure to violence and systolic pressure for older participants but not younger participants. Results suggest that positive attitudes about carrying guns (presumably indicative of pro-gun-carrying behavior) weakened the link between violence exposure and blood pressure. These novel findings suggest that carrying a gun may protect against the harmful effects of chronic stress from violence exposure on physical health outcomes (i.e., hypertension) among street-identified Black Americans.
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Exposição à Violência , Armas de Fogo , Humanos , Masculino , Feminino , Pressão Sanguínea , Violência , Fatores de RiscoRESUMO
BACKGROUND: Depression is a highly prevalent and often recurrent condition; however, treatment is not always accessible or effective in addressing abnormalities in emotional processing. Given the high prevalence of depression worldwide, identifying and mapping out effective and sustainable interventions is crucial. Emotion dysregulation in depression is not readily amenable to improvement due to the complex, time-dynamic nature of emotion; however, systematic planning frameworks for programs addressing behavioral changes can provide guidelines for the development of a rational intervention that tackles these difficulties. This study proposes an empirical and theoretical art-based emotion regulation (ER) intervention using an integrated approach that combines intervention mapping (IM) with participatory action research (PAR). METHODS: We used the IM protocol to identify strategies and develop an intervention for patients with major depressive disorder (MDD). As applied in this study, IM comprises six steps: (a) determining the need for new treatments and determinants of risk; (b) identifying changeable determinants and assigning specific intervention targets; (c) selecting strategies to improve ER across relevant theories and research disciplines; (d) creating a treatment program and refining it based on consultations with an advisory group; (e) developing the implementation plan and conducting a PAR study to pilot-test it; and (f) planning evaluation strategies and conducting a PAR study for feedback on the initial testing. RESULTS: Following the steps of IM, we developed two frameworks for an art-based ER intervention: an individual and an integrative framework. The programs include four theory- and evidence-based ER strategies aimed mainly at decreasing depressive symptoms and improving ER in patients with MDD. We also developed a plan for evaluating the proposed intervention. Based on our preliminary PAR studies, the intervention was feasible and acceptable for adoption and implementation in primary care settings. CONCLUSION: The application of IM incorporated with PAR has resulted in an intervention for improving ER in depression. While changing behavior is perceived as a challenging and elaborate task, this method can be useful in offering a clear structure for developing rational interventions. Further refinement is necessary through rigorous research.
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Transtorno Depressivo Maior , Regulação Emocional , Humanos , Transtorno Depressivo Maior/terapia , Transtorno Depressivo Maior/psicologia , Pesquisa sobre Serviços de Saúde , Pesquisa Participativa Baseada na ComunidadeRESUMO
OBJECTIVES: Cultural food security is crucial for cultural health and, for people from refugee backgrounds, supports the settlement journey. Cultural communities are vital in facilitating access to cultural foods; however, it is not understood how refugee-background communities sustain cultural food security in the Australian context. This study aimed to explore key roles in refugee-background communities to understand why they were important and how they facilitate cultural food security. DESIGN: Interviews were conducted by community researchers, and data analysis was undertaken using best-practice framework for collaborative data analysis. SETTING: Greater Brisbane, Australia. PARTICIPANTS: Six interviews were conducted between August and December 2022 with people from a refugee-background community, lived in Greater Brisbane and who fulfilled a key food role in the community that facilitated access to cultural foods. RESULTS: Fostering improved cultural food security supported settlement by creating connections across geographical locations and cultures and generated a sense of belonging that supported the settlement journey. Communities utilised communication methods that prioritised the knowledge, wisdom and experience of community members. It also provided community members with influence over their foodways. Community leaders had an ethos that reflected collectivist values, where community needs were important for their own health and well-being. CONCLUSIONS: Communities are inherently structured and communicate in a way that allows collective agency over foodways. This agency promotes cultural food security and is suggestive of increased food sovereignty. Researchers and public health workers should work with communities and recognise community strengths. Food security interventions should target cultural food security and autonomy.
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Refugiados , Humanos , Austrália , Pesquisa Qualitativa , Alimentos , Segurança AlimentarRESUMO
Before colonization, Aboriginal and Torres Strait Islander communities had nurturing, holistic, and communitarian approaches that promoted extended and healthy lives for their children. Colonization, marked by policies of genocide and assimilation, has resulted in an alarming overrepresentation of Aboriginal and Torres Strait Islander children under the care of child protection agencies, resulting in compromised health outcomes and reduced life expectancies. We are conducting a study designed to enhance positive developmental outcomes for Aboriginal and Torres Strait Islander children by articulating and enabling the rights of mothers and children to breastfeed in the context of a child protection intervention and child removal. To understand and address this problem, it is critical to implement culturally safe, de-colonized, emancipatory research that is guided by and benefits Aboriginal and Torres Strait Islander communities. This article presents an emancipatory framework that we are applying to our study using an Aboriginal participatory action research approach, that serves as a guide for non-Indigenous researchers seeking to conduct research with Indigenous communities. We emphasize the importance of incorporating an Aboriginal participatory action research framework, using community consultation and codesign; culturally secure data collection methods, and paying attention to Indigenous data sovereignty. Developing trusting respectful relationships is conducive to knowledge acquisition, exchange, and use, when research approaches deeply rooted in community involvement are applied. A call to action by the critical midwifery studies collective, urges non-Indigenous researchers to become accountable allies that demonstrates respect for community leadership while actively striving to ensure research does not perpetuate further harm, and produces effective change. This article provides an overview of ways to conduct ethical emancipatory research with Indigenous participants, that is, of benefit to midwifery practitioners and is applicable to many areas of research, policy, and practice.
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BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic and related restrictions globally impacted mental health, particularly for those with pre-existing severe mental illness (SMI). This qualitative study examined how adults with SMI perceived the effects of the COVID-19 pandemic and related restrictions in the Netherlands, focusing on their personal recovery, well-being and daily life, including an exploration of factors influencing these effects. METHODS: Semi-structured interviews were conducted, audio-recorded and transcribed verbatim. Reflexive thematic analysis was applied. Purposive sampling was used to ensure diversity of individuals with SMI (i.e., age, gender, diagnosis, cultural background and mental healthcare institution). RESULTS: Twenty participants (median age: 45 years [SD: 12, 8]; 11 females) were interviewed between May and July 2023. Findings revealed a wide range of experiences: while some individuals reported a negative impact on their existing psychiatric symptoms, others described adaptability, resilience and even positive effects of COVID-19 restrictions on their mental health and well-being. Factors influencing the heterogeneic perceptions of the COVID-19 pandemic and related restrictions include the availability of trusted social relationships and enduring interactions with health professionals. CONCLUSION: Personalised support, both socially and professionally, is crucial for addressing fears, building resilience, reducing isolation and encouraging positive coping strategies for individuals with SMI during external crises. In this project, a participatory research approach that integrated the lived experience perspective helped uncover the unique perceptions of people with SMI with regard to the pandemic and related restrictions. PATIENT OR PUBLIC CONTRIBUTION: The study used a participatory action research approach, with experts-by-experience involved in every stage of the project as part of the research team. This included engagement with the funding application process, recruitment strategies for interviews, developing the interview guide, piloting the interview, interpreting findings, and knowledge dissemination activities.
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COVID-19 , Transtornos Mentais , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Pandemias , COVID-19/epidemiologia , Saúde Mental , Projetos de Pesquisa , Pesquisa QualitativaRESUMO
OBJECTIVE: Culturally safe service provision is essential to improving social and emotional wellbeing among Aboriginal and Torres Strait Islander communities, and to eliminating health inequities. Cultural safety is about ensuring that all people have a safe and healing journey through services, regardless of their cultural background. In this project, we aim to (1) understand how Aboriginal and Torres Strait Islander peoples conceptualise cultural safety, and (2) co-design a qualitative interview for the next phase of this project, where we plan to learn about experiences of cultural safety within mental health services. METHODS: We conducted six focus groups (in one metro and two regional areas, Western Australia). Following an Aboriginal Participatory Action Research methodology, we yarned with Aboriginal and Torres Strait Islander mental health service users, carers, community members, mental health professionals and Cultural Healers about cultural safety. RESULTS: Participants described a culturally safe service as one where Aboriginal cultural knowledges, life experiences, issues and protocols are understood and acknowledged, and reported that mainstream mental health services are not currently culturally safe. Participants emphasised the importance of building trust, rapport, reciprocity and following appropriate relational processes when designing a qualitative interview for the next phase. CONCLUSIONS: A lack of cultural safety in mental health services is likely to contribute to the disparity in outcomes between Aboriginal and Torres Strait Islander peoples and non-Indigenous Australians. Embedding cultural safety into research design allows for authentic community engagement and facilitates knowledge sharing around ways to improve cultural safety in mental health services.
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Serviços de Saúde do Indígena , Serviços de Saúde Mental , Adulto , Feminino , Humanos , Masculino , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Pesquisa Participativa Baseada na Comunidade , Competência Cultural , Assistência à Saúde Culturalmente Competente/etnologia , Grupos Focais , Pesquisa sobre Serviços de Saúde , Serviços de Saúde do Indígena/organização & administração , Pesquisa Qualitativa , Austrália OcidentalRESUMO
The United Kingdom (UK) has some of the lowest breastfeeding rates in the world, and Stoke-on-Trent has some of the lowest breastfeeding rates and highest infant mortality rates in the UK. Vicarious experience of formula feeding, formula feeding culture, and a lack of physical environments to support breastfeeding are known barriers to uptake and maintenance. Improving physical environments and increasing the visibility of breastfeeding in public would help to challenge these barriers. This research employs a participatory approach to understand the facilitators and barriers to breastfeeding in public. Nine breastfeeding peer supporters were recruited as co-researcher for a photovoice study. Co-researchers collated images of features in environments which they felt either supported or acted as a barrier to public breastfeeding. An analysis workshop was held to review the data collected and produce collaboratively agreed findings. Various environmental features were highlighted as facilitators to breastfeeding including family rooms, welcoming signage, supportive staff members, and displays of information about breastfeeding. In addition, poorly designed family rooms, lack of inclusivity within breastfeeding spaces, breastfeeding spaces within toilets and a lack of information were barriers to public breastfeeding. This research illustrates that while some environments are well designed to support breastfeeding many others are not. Environments often lack basic provision and/or make token gestures towards breastfeeding support, such as welcome signage, without providing the infrastructure needed to support breastfeeding. More education about breastfeeding friendly spaces and resources for putting this information into practice are needed for environment owners, managers, and policy makers.
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Aleitamento Materno , Fotografação , Humanos , Aleitamento Materno/psicologia , Feminino , Reino Unido , Adulto , Apoio Social , Lactente , Meio Ambiente , Grupo Associado , Recém-Nascido , MasculinoRESUMO
BACKGROUND: Limited health literacy in (expectant) parents is associated with adverse health outcomes. Maternity care providers often experience difficulties assessing (expectant) parents' level of health literacy. The aim was to develop, evaluate, and iteratively adapt a conversational tool that supports maternity care providers in estimating (expectant) parents' health literacy. METHODS: In this participatory action research study, we developed a conversational tool for estimating the health literacy of (expectant) parents based on the Conversational Health Literacy Assessment Tool for general care, which in turn was based on the Health Literacy Questionnaire. We used a thorough iterative process including different maternity care providers, (expectant) parents, and a panel of experts. This expert panel comprised representatives from knowledge institutions, professional associations, and care providers with whom midwives and maternity care assistants work closely. Testing, evaluation and adjustment took place in consecutive rounds and was conducted in the Netherlands between 2019 and 2022. RESULTS: The conversational tool 'CHAT-maternity-care' covers four key domains: (1) supportive relationship with care providers; (2) supportive relationship within parents' personal network; (3) health information access and comprehension; (4) current health behaviour and health promotion. Each domain contains multiple example questions and example observations. Participants contributed to make the example questions and example observations accessible and usable for daily practice. The CHAT-maternity-care supports maternity care providers in estimating (expectant) parents' health literacy during routine conversations with them, increased maternity care providers' awareness of health literacy and helped them to identify where attention is necessary regarding (expectant) parents' health literacy. CONCLUSIONS: The CHAT-maternity-care is a promising conversational tool to estimate (expectant) parents' health literacy. It covers the relevant constructs of health literacy from both the Conversational Health Literacy Assessment Tool and Health Literacy Questionnaire, applied to maternity care. A preliminary evaluation of the use revealed positive feedback. Further testing and evaluation of the CHAT-maternity-care is required with a larger and more diverse population, including more (expectant) parents, to determine the effectiveness, perceived barriers, and perceived facilitators for implementation.
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Letramento em Saúde , Serviços de Saúde Materna , Obstetrícia , Gravidez , Feminino , Humanos , Comunicação , Pesquisa sobre Serviços de SaúdeRESUMO
BACKGROUND: Healthcare workers (HCWs) are commonly not prepared to properly communicate with D/deaf and hard of hearing (HoH) patients. The resulting communication challenges reinforce the existing barriers to accessing and benefiting from quality of care in these populations. In response, this study aimed to develop and evaluate a capacity-building intervention for HCWs to raise their awareness of D/deaf and HoH individuals' experiences in healthcare and improve their capacity to communicate with these populations. METHODS: This study featured a participatory action research design using qualitative and quantitative methods. The intervention was developed and tested through 4 iterative phases. Reactions (i.e., satisfaction and perception of the intervention content, quality, appropriateness and usefulness) were assessed quantitatively and qualitatively after the intervention, whereas perceived knowledge and self-efficacy in communicating with D/deaf and HoH patients and organizational payoffs (use frequency of basic rules and tools improving communication) were quantitatively assessed before, after and 6-month post-intervention. RESULTS: Main qualitative and quantitative findings showed that the final version of the intervention reached high levels of satisfaction among participants. Next, perceived knowledge and self-efficacy scores obtained after receiving the intervention and 6 months later were significantly higher than those yielded in the initial assessment, although both scores significantly decreased at 6 months (compared to the scores obtained just after the intervention). Finally, findings showed no significant changes in organizational payoffs after receiving the intervention. Echoing these results, main qualitative findings documented that after receiving the intervention, participants felt more confident yet not more equipped to communicate with D/deaf and HoH patients. CONCLUSIONS: Findings suggest that the capacity-building intervention is a promising means to sustainably increase HCWs' perceived knowledge and self-efficacy on how communicating with D/deaf and HoH patients, although complementary approaches and follow-up intervention reminders may be necessary to enable practice changes in the working environment.
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Perda Auditiva , Humanos , Comunicação , Pessoal de Saúde , Pesquisa sobre Serviços de Saúde , AudiçãoRESUMO
OBJECTIVES: Despite cervical cancer (CC) being a preventable disease, its incidence remains high in marginalized communities due to inequalities that restrict access to health services. This article investigates the experiences, perceptions, and attitudes regarding the screening of indigenous women in a region of the Colombian Amazon during a cervical cancer prevention initiative facilitated by community participation. DESIGN: Qualitative study based on interviews conducted with women and indigenous leaders from Paujil reserve. They participated in research focused on cervical cancer prevention, which employed a methodology of collaboration between academia and communities aimed at enhancing women's health and reducing inequalities in access to healthcare services. The analysis utilized a deductive and inductive approach. RESULTS: Five main themes were addressed: 'Barriers within health services'; 'Individual and cultural constraints'; 'Motivations and facilitators'; 'Positive experiences within the research framework'; and 'Suggestions for encouraging women's participation.' Challenges related to appointment scheduling and result delivery were frequently cited as obstacles to access. Misinformation, feelings of shame, fear, and distrust towards health services played significant roles in the reluctance to undergo screening. Factors such as support from family and community networks, respectful treatment, ease of scheduling appointments, the presence of female healthcare professionals, and involvement of leaders fluent in indigenous languages were identified as positive facilitators of screening acceptance. CONCLUSION: Understanding the factors that influence access to screening is crucial for reducing inequalities in service delivery for indigenous women. The involvement of trained leaders who can identify these factors and motivate women can have a positive impact on the acceptance and guidance of cervical cancer prevention programs.
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In Belgium, migrants from Sub-Saharan Africa (SSA) accounted for 45% of new heterosexual HIV infections in 2021, while only 1.5% of PrEP starters were of SSA descent. We explored the acceptance of PrEP and barriers towards PrEP uptake and use among SSA migrant and diaspora communities in Belgium using a participatory action research approach. Trained community researchers (CRs), involved in all phases of the study, co-designed and moderated group discussions (GDs) while simultaneously providing information on HIV and PrEP during workshops. Extensive summaries and field notes were analysed using reflexive thematic analysis. CRs were involved in data analysis, interpretation and reporting. We conducted seven GDs with 51 participants. We identified five major themes: (1) Participants had limited PrEP knowledge, which created feelings of surprise and annoyance about not being informed. This was partly explained by (2) the taboo and stigma that surrounds sexuality and HIV, which could shape PrEP acceptance. (3) Participants shared feelings of otherness due to experiences of racism and discrimination, also in relationship to HIV prevention. (4) PrEP was considered a high-threshold prevention tool, because of its perceived side-effects and its specialized service delivery. (5) Despite nuanced opinions about PrEP, all participants agreed that PrEP promotion should be mainstreamed, so everyone can make an informed decision. In conclusion, PrEP seemed acceptable among our participants. Our qualitative study provides insights into the intersecting barriers to accessing HIV services, showing that SSA diaspora communities are 'hardly reached' rather than 'hard to reach' by PrEP promotion messages.
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Síndrome da Imunodeficiência Adquirida , Fármacos Anti-HIV , Infecções por HIV , Humanos , Infecções por HIV/prevenção & controle , Infecções por HIV/tratamento farmacológico , Bélgica , Heterossexualidade , Pesquisa sobre Serviços de Saúde , Fármacos Anti-HIV/uso terapêuticoRESUMO
BACKGROUND: Gestational diabetes mellitus (GDM) is a common and costly condition of pregnancy. The Healthy Gut Diet for Preventing Gestational Diabetes study is a novel randomised controlled trial that aims to prevent GDM through a diet that modulates the gut microbiota for pregnant women with GDM risk factors. Despite increasing interest in co-designing interventions with consumers (lived experience experts), co-design methods and outcomes are often poorly reported. The present study aims to report on the co-design process used to develop The Healthy Gut Diet intervention. METHODS: Co-design occurred across three online workshops with consumer participants (women with a lived experience of GDM, n = 11), researchers (n = 6) and workshop co-facilitators (including a consumer co-facilitator, n = 2). The workshops explored women's preferences for the mode and length of education sessions, as well as the types of information and supportive resources women wanted to receive, and undertook a "behaviour diagnosis" to understand barriers and enablers to the target behaviours (eating for gut health). The final intervention is reported according to the Template for Intervention Description and Replication. RESULTS: A co-designed dietary intervention (The Healthy Gut Diet), delivered via telehealth, with a suite of educational and supportive resources that integrates published behaviour change techniques, was developed. Generally, the co-design process was reported as a positive experience based on participant feedback and evidenced by no participant dropouts over the 3-month study period. CONCLUSIONS: Co-design is recognised as a process that creates a partnership between lived experience experts and researchers who can engage and empower research recipients and improve health behaviours.
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BACKGROUND: Evidence suggests that modulating the gut microbiota during pregnancy may help prevent gestational diabetes mellitus (GDM). The Healthy Gut Diet study is a complex behaviour change intervention co-designed with women who have a lived experience of GDM. The aim of the study was to describe the development of the behaviour change dietary intervention, the Healthy Gut Diet. METHODS: This study followed the process for designing behaviour change interventions using the Behaviour Change Wheel. Six researchers and 12 women with lived experience participated in online workshops to co-design the Healthy Gut Diet intervention. This included "diagnosing" the barriers and enablers to two target behaviours: eating more plant foods and eating less ultra processed/saturated fat containing foods. Content analysis of the workshop transcripts and activities was undertaken, underpinned by the Capability, Opportunity, Motivation and Behaviour (COM-B) model and the Theoretical Domains Framework (TDF). RESULTS: Barriers and enablers to the target behaviours were described across all six COM-B components and 10 TDF domains. The intervention functions for the Healthy Gut Diet were education, enablement, environmental restructuring, persuasion and incentivisation. Forty behaviour change techniques were integrated into five modes of delivery for the Healthy Gut Diet intervention. The feasibility, acceptability and effectiveness of the Healthy Gut Diet is being tested within a randomised controlled trial. CONCLUSIONS: Using the Behaviour Change Wheel process in partnership with consumers resulted in a clearly described complex intervention targeting barriers and enablers of dietary behaviour change to improve the gut microbiota diversity in pregnant women.
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BACKGROUND: Mutual learning and shared decision-making are key elements of Participatory Action Research (PAR), highlighting the important role of the facilitator to support this. This study aims to illustrate how a facilitator can contribute to successful PAR sessions based on the reflection of three PAR projects. METHODS: Participatory sessions took place with adolescents for 3-4 school years. After each session (n = 252 sessions across three projects), facilitators filled in a reflection form that assessed the group process and their facilitating role. Facilitators independently coded a selection of 135 reflection forms partly deductive and partly inductive based on core PAR principles derived from a pragmatic literature search. RESULTS: A well-prepared session - for example, including active and creative participatory methods and a clearly stated goal - contributed to efficiency and the necessary flexibility. Making agreements, making sure everyone is heard and taking 'fun-time' appeared important for creating and maintaining a safe, functional and positive atmosphere. Finally, facilitators needed to encourage co-researchers to take the lead and adapt to the group dynamics, to ensure ownership and shared decision-making. CONCLUSION: In-depth qualitative analyses of a standardized reflection form used in three different PAR projects resulted in various lessons to support facilitators in collaborating with co-researchers in PAR projects.
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Pesquisa Participativa Baseada na Comunidade , Comportamento Cooperativo , Humanos , Adolescente , Pesquisa Qualitativa , Pesquisadores , Pesquisa sobre Serviços de Saúde , Tomada de Decisão Compartilhada , Processos Grupais , Tomada de Decisões , Aprendizagem , Instituições AcadêmicasRESUMO
Rarely are youth voices incorporated into program and policy development. Youth participatory action research (YPAR) is an opportunity for adolescents to develop research skills by completing projects relevant to their lives and allows participation and decision-making at systems and organizational levels. Attention to YPAR implementation detail, especially a curricular focus, is lacking in the literature. Specifically absent is an all-encompassing YPAR framework, a gap the current study addresses. The current study includes a review of existing YPAR curricula to develop the Youth Researcher Empowerment Framework, including research components, social emotional competencies, and assumptions necessary for completing a YPAR project that centers youth voice and shared power. The study includes a quantitative assessment of the YPAR curricula and qualitative reviews by adult practitioners. In addition, focus group data from youth and teacher audiences across multiple settings confirmed and clarified terms and concepts related to the framework. The study provides empirical evidence to support a revised framework for YPAR curricular implementation. Implications are discussed in terms of aspects of the research process needed for YPAR projects, attention to specific youth developmental skills as outcomes, and underlying principles needed to create a welcoming, contextual space allowing for empowerment, youth voice, and choice.
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INTRODUCTION: Hospital-acquired pressure injuries (HAPIs) are a global high-stakes patient safety issue. Key stakeholder perspectives regarding their role and experiences with pressure injuries is critical as part of the solution to minimizing HAPI occurrence and attain sustainability. DESIGN: A qualitative, descriptive approach provided multiple perspectives of key stakeholders to support the complexity of HAPI care. The qualitative data are a part of a mixed method convergent research study examining pressure injury prevention and management practices. METHODS: Nursing system theory, mixed method convergent design, and participatory action research methodologies were chosen to address both the gap analysis development and results, achieve collaborative comprehensiveness, and enable key stakeholder involvement throughout this HAPI prevention and management initiative. Participants were recruited and enrolled from a large Level I trauma hospital and the key stakeholders. Demographic information were collected prior to the individual interview. Focused interviews were conducted virtually using zoom technology. Qualitative data were analyzed using NVivo software and thematic analysis was confirmed across the co-investigators for congruence and applicability to the research questions. RESULTS: Qualitative interviews with 26 key stakeholders provided data to support and integrate a link with gap analysis results on the complex health issue of HAPIs. Specific barrier and recommendation themes identified interventions that could be prioritized. The 52 barrier and 52 recommendation themes/sub-theme(s) respectively were organized by Donabedian (structure, process, and outcome) with structure elements the majority. The top three structure barrier themes involved equipment and standards for use, staff prevention education, and specialized health professionals. The top three structure recommendation themes involved specialized health professionals, equipment and standards for use, and an educational plan for those at risk or with HAPIs. CONCLUSION: The article provides findings from the qualitative portion of a mixed method study related to HAPIs. The qualitative findings associated with the gap analysis quantitative results, achieved the goal of the participatory action research key stakeholders' input into HAPI care and can be replicated internationally. CLINICAL RELEVANCE: The benefit of key stakeholder's involvement in solving a clinical problem is sustainability. A quantitative approach and integrating qualitative stakeholders' perspectives provide an in-depth solution that will advance nursing capacity toward health care delivery and HAPI nursing science and policy development on a global level.
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Úlcera por Pressão , Humanos , Úlcera por Pressão/prevenção & controle , Úlcera por Pressão/epidemiologia , Formulação de Políticas , Cuidados Paliativos , Pesquisa sobre Serviços de Saúde , Hospitais , Pesquisa QualitativaRESUMO
OBJECTIVES: We use an art-based approach to engage and involve members of African, African Caribbean and Muslim communities' in exploring barriers to accessing and using mental health services in the co creation and co-production of mental health communication material. STUDY DESIGN: A creative practice approach underpinned by the principles of participatory action research was used. METHODS: Seven community-based interactive workshops were held between February and June 2022 at three community centres in Nottingham, UK Attendees were invited to take part in open discussions around the conceptualisations of mental health, well-being and emotional health and to draw or describe their experiences of accessing mental health services. RESULTS: Attendance was higher than anticipated, with 72 individuals from African, African Caribbean and Pakistan communities taking part in the workshops. What emerged was the low level of understanding of the services available in addressing mental health. In addition, it was felt that health professionals in the National Health Service (NHS) do not sufficiently acknowledge or consider the ethnic, social, cultural and economic factors influencing the mental health and emotional well-being of minoritised communities. Attendees critiqued and provided feedback on service providers' posters and leaflets. They commented on the lack of key information provided, the inclusion of what was viewed as irrelevant content and the use of unfamiliar terminology. Some attendees created mock-ups of what they believed a good poster should look like. CONCLUSION: A creative practice approach that follows the principles of participatory action research can play an important role in engaging members of minoritised communities in the co-production and co-design of services. This approach highlighted the need to establish trust and shared ownership among marginalized communities affected by inequities of mental health service provision.
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Serviços de Saúde Mental , Medicina Estatal , Humanos , Saúde Mental , Pesquisa sobre Serviços de Saúde , Reino UnidoRESUMO
AIM: To explore experiences of nursing home staff in implementing self-designed interventions to foster trusting relationships with family in practice. DESIGN: This qualitative study used a Participatory Action Research approach. METHODS: Data collection included focus groups (n = 15), interviews (n = 28) and observations (n = 5). A holistic narrative approach was used for data analysis, resulting in co-constructed narratives representing experiences of nursing home staff in implementing four different interventions in five Dutch dementia special care units in nursing homes. The data collection period began in August 2021 and ended in April 2022. RESULTS: Nursing home staff implemented self-designed interventions to foster trusting relationships with family, including initiating informal conversations, sharing residents' 'happy' moments, discussing mutual expectations, and being more aware of families' emotional burdens. Identified facilitators emphasise the importance of reciprocity, familiarity, transparency, realistic goal setting and empathy. Identified barriers are related to moral uncertainty in balancing competing demands, conflicting social norms, prioritising hands-on care tasks over family contact and lack of courage to act. CONCLUSION: Nursing home staff conclude that their interventions contribute positively to building and maintaining a trusting relationship with families. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Sharing the narratives of nursing home staff with peers would support them in implementing interventions to foster trust. Regular Moral Case Deliberations can be used to address moral uncertainty. Collective dialogue among nursing home staff can be useful in establishing new social norms that prioritise family involvement. Conversation skills training can empower nursing home staff. IMPACT: Trust between nursing home staff and families can be improved by implementing the conducted interventions. REPORTING METHOD: This report adheres to the standards for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
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OBJECTIVE: This study aims to better understand how new future-oriented nursing roles are enacted in a general hospital. DESIGN: A learning history, that is, a participatory action-oriented research design to explore and foster organizational learning. METHODS: Data collection consisted of a (historical) document analysis, the shadowing of differentiated nursing practices (36 h), 22 open interviews, 4 oral history interviews, 2 focus groups and a podcast series (7 h) created with participants. RESULTS: The data gathered revealed three important themes regarding enacting new nursing roles: (1) stretching the nature of nursing work, (2) using earlier experiences and (3) collectively tackling taboos. CONCLUSIONS: Differentiated nursing practices and enacting new nursing roles have long and complex histories. Attempts to differentiate are often met with resistance from within the nursing profession. This study shows how the new role of nurse coordinator was negotiated in nursing teams. With a bottom-up approach focused on collective responsibilities. By acknowledging and reflecting on the past, spaces were enacted in which the role of nurse coordinator became one role, among others, in the delivery of patient care. IMPACT: This study provides an innovative perspective on differentiated nursing practices by focusing on the past, the present and the future. We found that local, situated conditions can be taken as starting points when new nursing roles are enacted. In addition, shifting focus from individual nursing roles to nursing team development, emphasizing collective responsibilities, softens strong (historically) grown emotions and creates spaces in which new roles become negotiable. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.