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1.
Artigo em Inglês | MEDLINE | ID: mdl-38959292

RESUMO

Youth participatory action research (YPAR) is an approach widely utilized in various social science disciplines (e.g., community psychology, social work, public health), which requires researchers to share power with youth co-researchers and to collaborate across identities to work equitably. Understanding what approaches and practices support YPAR adult facilitators' ability to share power is a vital area of knowledge that can support greater freedom in how researchers approach YPAR. Mindfulness offers a powerful set of tools for adult researchers to track their reactions and equitably collaborate with youth co-researchers. Drawing on insights from our youth participatory research, the present study employed a collaborative autoethnography to integrate our unique experiences as YPAR facilitators. We reflected on a core research question: How does mindfulness inform and support our YPAR work? Two major themes emerged that relate to power-sharing in YPAR: (1) Mindfulness supports our ability to overcome barriers to being present in facilitating YPAR groups; (2) Facilitator presence fosters deeper connection with youth co-researchers and stronger collaboration. Mindfulness can provide researchers a holistic, strengths-based approach in youth collaboration, and may also provide skillful tools for researchers to counter the pressures of White supremacy culture in academia.

2.
Front Public Health ; 12: 1391084, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38962765

RESUMO

Introduction: Under the backdrop of pervasive health inequalities, public health professionals, researchers and non-academic partners in the United Kingdom are mobilising to understand how and in what ways community assets can address health disparities at scale in complex systems. While there is recognition that cultural, natural and community resources can improve health outcomes, these are unequally dispersed with lack of integration in communities and health and social care systems. Researching Evidence-based Alternatives in Living, Imaginative, Traumatised, Integrated, Embodied Systems (REALITIES) is a participatory action research Scottish consortium of 57 with established community asset hubs in five localities with strong relationships uniting conflicting ways of seeing the world. Our collective of lived and felt experience community members, community-embedded researchers, academics and non-academics draws upon a variety of practices, methods, datasets and philosophies to expand existing approaches to tackling health inequalities. Methods: We present conceptual and theoretical underpinnings for our co-produced systems-level model and empirical findings from testing REALITIES across three disadvantaged localities (November 2022, ongoing). After explaining the context that led to the development of the new scalable REALITIES model for integrated public systems to interface with 'assets', we detail philosophical pillars and guiding principles for our model and how we applied these mechanisms to explain how integrated partnership working can lead to improved health outcomes across multiple public systems. Results: We present a meta-analysis from co-producing and testing the model, showing how measuring change in complex public systems involves critical investigation of People, Process, Place, Price, Power and Purpose. Our critique reflects on power imbalances and inequities in Research-practice-Policy (RPP) partnerships and suggestions for how to nurture healthy ecosystems: overcoming barriers and enabling participation; reflecting on challenges of scaling up, testability and complexity of RPP partnerships; moving from siloed learning to transdisciplinary collaboration in practice; ensuring knowledge exchange has direct impact on communities and frontline practitioners; embedding relational ethics and safeguarding into daily practice. Discussion: We propose the REALITIES model to unite alternative, sometimes conflicting, ways of thinking about public systems and community assets by continuously reflecting on entanglements between different assumptions about knowledge, reality, evidence, and unnecessary binaries between creative methodologies and scientific method.


Assuntos
Disparidades nos Níveis de Saúde , Humanos , Escócia , Prática Clínica Baseada em Evidências , Pesquisa sobre Serviços de Saúde , Disparidades em Assistência à Saúde , Reino Unido
3.
Clin Pediatr (Phila) ; : 99228241260167, 2024 Jun 10.
Artigo em Inglês | MEDLINE | ID: mdl-38853718

RESUMO

Parents of infants requiring neonatal intensive care unit (NICU) hospitalization often experience increased rates of distress, trauma, and perinatal mood disorders. Untreated parental mental health conditions have short- and long-term effects for infants and families. While some NICUs provide varying degrees of mental health supports for NICU families, these services are not universally or systematically integrated in US NICUs. Multiple factors contribute to this gap in care, including mental health stigma, funding constraints, and lack of staff training and capacity. In an effort to address this gap, we used a participatory action research approach, guided by a Patient and Stakeholder Engagement model, to partner with graduate NICU parents and patient-facing NICU staff to identify parental mental health needs and ideas to address them. Through efforts to mitigate power differentials and engage parents as research and program development partners, our work shaped NICU practices, programming, and subsequent research.

4.
J Clin Med ; 13(11)2024 May 25.
Artigo em Inglês | MEDLINE | ID: mdl-38892817

RESUMO

Background: Chronic bothersome tinnitus is a prevalent tinnitus subtype placing a high burden on affected individuals, economies, and healthcare systems. Patient and professional perspectives seem to be partly misaligned on how to improve tinnitus research and treatments in the future. This qualitative interview study was aimed at exploring, comparing, and stipulating the perspectives of different tinnitus stakeholder groups on ways of redirecting research and treatments to reduce patients' suffering while accounting for challenges within these practices. Methods: This study used the participatory action research approach to facilitate the stakeholder involvement. Semi-structured online interviews including five participants (two tinnitus patients, two tinnitus researchers and medical specialists, one general practitioner) were conducted. Inductive grounded theory and the constant comparative method were used for data analysis. Results: Four categories for suggested research adaptations ((I) ethical patient involvement; (II) prioritising cure versus coping research; (III) funding; (IV) ethical publication) and six categories for suggested treatment adaptations ((I) ethical professional support; (II) patient involvement; (III) interdisciplinarity; (IV) professional tinnitus education; (V) clinical treatment guidelines; (VI) psychological treatment) were identified. Participants held partly similar priorities such as increasing pathophysiological and cure research. Differences between participants included, for instance, patients aiming for increasing patient involvement in tinnitus research and treatments compared to professionals arguing that the excessive focus on patients' conditions might reduce the patients' chances of habituating to their symptoms. Conclusions: Four action redirections for improving tinnitus research and treatment practices were defined: (I) facilitating communication between and within stakeholder groups, (II) increasing the reflective use of patient involvement, (III) increasing interdisciplinarity, and (IV) reducing barriers to receiving psychological treatment.

5.
Front Public Health ; 12: 1272663, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38887247

RESUMO

Purpose: Childhood overweight is considered a complex problem influenced by a range of factors, including energy balance-related behaviours (EBRBs) and interacting drivers of these behaviours. There is growing support that applying a systems approach is required to tackle complex problems resulting in actions that attempt to change the system's dynamics. Additionally, a participatory approach is advocated to include the lived experience of the population of interest both in the understanding of the system as well as the development, implementation and evaluation of relevant actions. We therefore combined Intervention Mapping, Participatory Action Research (PAR) and system dynamics in the development, implementation and evaluation of actions contributing to healthy EBRBs together with adolescents. Methods: Four PAR groups comprising of 6-8 adolescent co-researchers (10-14 years) and 1-2 adult facilitators met weekly during 3-4 years. The structured Intervention Mapping protocol guided the process of the systematic development, implementation and evaluation of actions. System dynamics tools were included for the creation of Causal Loop Diagrams and development of systemic actions. Results: Our approach comprised six steps that were executed by the PAR groups: (1) build Causal Loop Diagrams for each EBRB through peer research and identify overarching mechanisms, (2) determine leverage points using the Intervention Level Framework, (3) develop action ideas, (4) develop detailed actions including an implementation plan, (5) implement and, (6) evaluate the actions. PAR ensured that the actions fitted the lived experience of the adolescents, whilst system dynamics promoted actions at different levels of the system. The Intervention Mapping protocol ensured that the actions were theory-based. The main challenge involved integrating system dynamics within our practise in cooperation with adolescent co-researchers. Conclusion: We experienced that combining Intervention Mapping, PAR and system dynamics worked well in developing, implementing and evaluating actions that target different levels of the system that drive adolescents' EBRBs. This study serves as an example to other studies aimed at developing, implementing and evaluating actions using a participatory and systems approach.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Promoção da Saúde , Humanos , Adolescente , Promoção da Saúde/métodos , Criança , Feminino , Masculino , Análise de Sistemas , Pesquisa sobre Serviços de Saúde , Obesidade Infantil/prevenção & controle , Características de Residência
6.
Artigo em Inglês | MEDLINE | ID: mdl-38907740

RESUMO

Research demonstrates that young people value mental health support that is tailored to their needs and preferences, rather than a "one size fits all" offer, which is often not equitably accessible (National Children's Bureau, 2021). Understanding young people's lived experiences across different sociocultural contexts is important. The aim of this research was to conduct an international qualitative study on the views of young people with lived experience and professionals, on proposed aspects of personalised support for anxiety and/or depression. Participatory action focus groups were conducted with N = 120 young people with lived experience of anxiety and/or depression (14-24 years) and with N = 63 professionals in Brazil, India, Kenya, Pakistan, Portugal, South Africa, Turkey, and the United Kingdom. Data were analysed using the rigorous and accelerated data reduction (RADaR) technique. Overall, although some country-specific differences were found in terms of what aspects of support young people found to be most important, individual preferences were considered stronger, furthering the view that support should be personalised to the needs of the individual young person. Young people experiencing anxiety and/or depression should be able to choose for themselves which aspects of support they would prefer in their own care and support plans, with families and mental health professionals providing guidance where appropriate, rather than removing the young person from the decision-making process altogether. It should also be ensured that the aspects of personalised support can be understood by young people and professionals from different contexts, including marginalised and minoritised groups and communities.

7.
Int Breastfeed J ; 19(1): 39, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38822371

RESUMO

BACKGROUND: Despite the known benefits of exclusive breastfeeding, global rates remain below recommended targets, with Ireland having one of the lowest rates in the world. This study explores the efficacy of Participatory Action Research (PAR) and Work-Based Learning Groups (WBLGs) to enhance breastfeeding practices within Irish healthcare settings from the perspective of WBLG participants and facilitators. METHODS: Employing a PAR approach, interdisciplinary healthcare professionals across maternity, primary, and community care settings (n = 94) participated in monthly WBLGs facilitated by three research and practice experts. These sessions, conducted over nine months (November 2021 - July 2022), focused on critical reflective and experiential learning to identify and understand existing breastfeeding culture and practices. Data were collected through participant feedback, facilitator notes, and reflective exercises, with analysis centered on participant engagement and the effectiveness of WBLGs. This approach facilitated a comprehensive understanding of breastfeeding support challenges and opportunities, leading to the development of actionable themes and strategies for practice improvement. RESULTS: Data analysis from WBLG participants led to the identification of five key themes: Empowerment, Ethos, Journey, Vision, and Personal Experience. These themes shaped the participants' meta-narrative, emphasising a journey of knowledge-building and empowerment for breastfeeding women and supporting staff, underlining the importance of teamwork and multidisciplinary approaches. The project team's evaluation highlighted four additional themes: Building Momentum, Balancing, Space Matters, and Being Present. These themes reflect the dynamics of the PAR process, highlighting the significance of creating a conducive environment for discussion, ensuring diverse engagement, and maintaining energy and focus to foster meaningful practice changes in breastfeeding support. CONCLUSION: This study highlights the potential of WBLGs and PAR to enhance the understanding and approach of healthcare professionals towards breastfeeding support. By fostering reflective and collaborative learning environments, the study has contributed to a deeper understanding of the challenges in breastfeeding support and identified key areas for improvement. The methodologies and themes identified hold promise to inform future practice and policy development in maternal and child health.


Assuntos
Aleitamento Materno , Humanos , Aleitamento Materno/psicologia , Feminino , Irlanda , Pesquisa sobre Serviços de Saúde , Adulto , Pessoal de Saúde/psicologia , Pessoal de Saúde/educação , Promoção da Saúde , Pesquisa Participativa Baseada na Comunidade , Recém-Nascido
8.
J Hum Nutr Diet ; 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38894634

RESUMO

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.

9.
JMIR Res Protoc ; 13: e57146, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38874998

RESUMO

BACKGROUND: The mental health of military personnel has garnered increased attention over the last few decades; however, the impacts of perpetuating, observing, or failing to prevent acts that transgress deeply held moral standards, referred to as moral injuries, are less understood, particularly in relation to encounters with children during deployment. This paper describes a multiphased research protocol that centers around the lived experiences of Canadian Armed Forces (CAF) Veterans to understand how encounters with children during military deployments impact the well-being and mental health of military personnel. OBJECTIVE: This study has four objectives: (1) highlight the lived experiences of CAF Veterans who encountered children during military deployments; (2) improve understanding of the nature of experiences that military personnel faced that related to observing or engaging with children during military service; (3) improve understanding of the mental health impacts of encountering children during military service; and (4) use participatory action research (PAR) to develop recommendations for improving preparation, training, and support for military personnel deployed to contexts where encounters with children are likely. METHODS: The research project has 2 main phases where phase 1 includes qualitative interviews with CAF Veterans who encountered children during military deployments and phase 2 uses PAR to actively engage Canadian Veterans with lived experiences of encountering children during military deployments, as well as health professionals and researchers to identify recommendations to better address the mental health effects of these encounters. RESULTS: As of January 26, 2024, a total of 55 participants and research partners have participated in the 2 phases of the research project. A total of 16 CAF Veterans participated in phase 1 (qualitative interviews), and 39 CAF Veterans, health professionals, and researchers participated in phase 2 (PAR). The results for phase 1 have been finalized and are accepted for publication. Data collection and analysis are ongoing for phase 2. CONCLUSIONS: Prioritizing and valuing the experiences of CAF Veterans has deepened our understanding of the intricate nature and impacts of potentially morally injurious events involving children during military deployments. Together with health professionals and researchers, the PAR approach empowers CAF Veterans to articulate important recommendations for developing and improving training and mental health support. This support is crucial not only during the deployment cycle but also throughout the military career, helping lessen the effects of moral injury among military personnel. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57146.


Assuntos
Militares , Pesquisa Qualitativa , Veteranos , Humanos , Canadá , Veteranos/psicologia , Militares/psicologia , Criança , Feminino , Masculino , Conflitos Armados/psicologia , Adulto
10.
Health Expect ; 27(3): e14124, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38924637

RESUMO

BACKGROUND: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD. OBJECTIVE: The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology. METHOD: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. RESULTS: Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. CONCLUSION: Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care. PATIENT OR PUBLIC CONTRIBUTION: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.


Assuntos
Adaptação Psicológica , Doença de Parkinson , Fotografação , Qualidade de Vida , Humanos , Doença de Parkinson/psicologia , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Apoio Social , Atividades Cotidianas , Autoimagem , Idoso de 80 Anos ou mais , Pesquisa Qualitativa
11.
Front Public Health ; 12: 1355944, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38939557

RESUMO

Background: During the COVID-19 pandemic, public health teams tried several approaches to circulate accurate health information and engage with community members to understand what they need from public health services. Two such approaches were community champions and community participatory action research (CPAR). This study evaluates two champion programmes and a CPAR programme in terms of what worked, for whom, and in what contexts, including the funding and resourcing associated with implementation. Methods: Between June 2022 and June 2023, a realist evaluation of three distinct case studies (COVID-19 champions, Vaccine Champions, and CPAR programmes) in the city of Southampton in England was conducted in three stages: development of initial programme theories and collection of additional contextual information, including funding and resources associated with delivering each programme; initial programme theory testing; synthesis of final programme theories. Data was collected primarily through semi-structured interviews (n = 29) across programme and training leads, voluntary services, community organisations, volunteers, and local community members, and one focus group with local community members (n = 8). Results: The City Council used £642 k from two funding awards to deliver the programmes: COVID-19 Champions £41 k; Vaccine Champions £485 k; and CPAR programmes £115 k. Twenty-eight initial programme theories were generated, which were "tested" to support, refine, or refute context-mechanism-outcome relationships, resulting finally in a set of 22 programme theories across the three programmes. Six demi-regularities were generated, each featuring in multiple programme theories, and providing data on how and why these programmes can work, and in which contexts: (1) building trust through community connections; (2) fostering relationships and collaboration; (3) provision of training and resources; (4) local community knowledge and expertise; (5) community representation and leadership; (6) appropriate communication and information sharing. Conclusion: This study provides new knowledge and understanding of the factors affecting the implementation of community champion and CPAR approaches during public health emergencies. These findings suggest that representation and involvement of community members, establishing and building on trust, adequate training and resources, and clear communication from trusted community members and organisations are catalysts for meaningful engagement with communities.Evaluation registration: Research Registry identifier: researchregistry8094.


Assuntos
COVID-19 , Pesquisa Participativa Baseada na Comunidade , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Inglaterra , Pandemias/prevenção & controle , SARS-CoV-2 , Avaliação de Programas e Projetos de Saúde , Saúde Pública , Grupos Focais
12.
Health Place ; 89: 103294, 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38941653

RESUMO

Traditional planning processes have perpetuated the exclusion of historically marginalized communities, imposing vulnerability to climate (health) crises. We investigate how ownership of change fosters equitable climate resilience and community well-being through participatory action research. Our study highlights the detrimental effects of climate gentrification on community advocacy for climate security and health, negatively impacting well-being. We identify three key processes of ownership of change: ownership of social identity, development and decision-making processes, and knowledge. These approaches emphasize community-led solutions to counter climate health challenges and underscore the interdependence of social and environmental factors in mental health outcomes in climate-stressed communities.

13.
Trials ; 25(1): 304, 2024 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-38711048

RESUMO

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.


Assuntos
Idoso Fragilizado , Serviços de Assistência Domiciliar , Vida Independente , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Idoso , Multimorbidade , Fragilidade/diagnóstico , Fragilidade/terapia , Fatores de Tempo , Pesquisa Participativa Baseada na Comunidade , Resultado do Tratamento , Intervenção em Crise/métodos , Qualidade de Vida
14.
Nurse Educ Today ; 139: 106248, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38781821

RESUMO

AIM: A participatory action research project was used to change the design and delivery of continuing professional education in a large Irish academic teaching hospital. BACKGROUND: Participation in continuing professional education, designed as a short course, is often a method to maintain competence for many nurses. Structured short education courses are often used to orientate and upskill new staff to specialist clinical areas. Traditionally many courses relied on face-to-face delivery over a period of weeks which is challenging for one clinical area to release staff to attend theoretical days in person. DESIGN: A six-stage participatory action research cycle over a 3-year period in a large Irish academic teaching hospital. METHODS: Multiple methods were used in the cyclical process of participatory action research. Constructive alignment theory and instructional design principles were used to redesign the educational framework. Data collection included audits of courses, questionnaires and focus groups with key participants. RESULTS: Analysis of the focus group themes included 1) underestimated time 2) the process of change 3) teaching and learning styles and 4) acceptance and integration. 20 learners completed the evaluation and reported a positive synergy between e-learning and clinical workshops. E-learning was reported as time-consuming. 75 % of learners reported they were motivated to learn. 90 % of the learners reported they gained new knowledge and skills, 84 % reported the clinical area benefited from the education and 80 % identified a direct improvement in their clinical skills in the specialist area. CONCLUSIONS: Participatory action research supports organisational change in continuing professional education. Constructive alignment theory supports the value of outcomes-based learning. In this context it resulted in successfully blending theory and clinical skills for nurses working in specialist areas. The redesigned continuing professional education framework was positively evaluated across nurses in the organisation.


Assuntos
Educação Continuada em Enfermagem , Grupos Focais , Humanos , Educação Continuada em Enfermagem/métodos , Irlanda , Pesquisa sobre Serviços de Saúde , Hospitais de Ensino , Pesquisa em Educação em Enfermagem , Competência Clínica/normas , Competência Clínica/estatística & dados numéricos , Inquéritos e Questionários
15.
Autism ; : 13623613241253014, 2024 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-38757637

RESUMO

LAY ABSTRACT: In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.

16.
Soc Sci Med ; 350: 116921, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38723586

RESUMO

Poor mental health among U.S. adolescents has reach epidemic proportions, with those from the Middle East and North African region exhibiting increased risk for distress and suicide ideation. This mixed-methods study analyzes quantitative data from first- and second-generation Arab adolescents (n = 171) and qualitative data from a participatory study conducted with 11 adolescents of the same population to understand the role of cultural resources in coping. Drawing on the Intersectional Theory of Cultural Repertoires in Health, we show that: 1) cultural resources underlie meaning-making throughout coping; 2) coping strategies are inseparable from the influence of peer and familial relationships, as dictated through the social norms and other cultural resources; 3) collectively held repertoires of coping can promote belonging, affirm identity, and protect against discrimination; and 4) the outcomes of coping strategies, and the culturally informed meaning individuals make of these outcomes, influence their future coping behaviors.


Assuntos
Adaptação Psicológica , Árabes , Estigma Social , Humanos , Adolescente , Feminino , Masculino , Árabes/psicologia , Árabes/estatística & dados numéricos , Pesquisa Qualitativa , Fotografação
17.
J Adv Nurs ; 2024 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-38808499

RESUMO

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.

18.
Appetite ; 199: 107397, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-38735307

RESUMO

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.


Assuntos
Aleitamento Materno , Fotografação , Humanos , Aleitamento Materno/psicologia , Feminino , Reino Unido , Adulto , Apoio Social , Lactente , Meio Ambiente , Grupo Associado , Recém-Nascido , Masculino
19.
Implement Sci Commun ; 5(1): 35, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38581011

RESUMO

BACKGROUND: This case study details the experience of the Proyecto Precancer in applying the Integrative Systems Praxis for Implementation Research (INSPIRE) methodology to guide the co-development, planning, implementation, adoption, and sustainment of new technologies and screening practices in a cervical cancer screening and management (CCSM) program in the Peruvian Amazon. We briefly describe the theoretical grounding of the INSPIRE framework, the phases of the INSPIRE process, the activities within each phase, and the RE-AIM outcomes used to evaluate program outcomes. METHODS: Proyecto Precancer iteratively engaged over 90 stakeholders in the Micro Red Iquitos Sur (MRIS) health network in the Amazonian region of Loreto, Perú, through the INSPIRE phases. INSPIRE is an integrative research methodology grounded in systems thinking, participatory action research, and implementation science frameworks such as the Consolidated Framework for Implementation Research. An interrupted time-series design with a mixed-methods RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) evaluation framework was used to examine the adoption of human papillomavirus (HPV) testing (including self-sampling), with direct treatment after visual inspection with portable thermal ablation, at the primary level. RESULTS: This approach, blending participatory action research, implementation science, and systems-thinking, led to rapid adoption and successful implementation of the new cervical cancer screening and management program within 6 months, using an HPV-based screen-and-treat strategy across 17 health facilities in one of the largest public health networks of the Peruvian Amazon. Monitoring and evaluation data revealed that, within 6 months, the MRIS had surpassed their monthly screening goals, tripling their original screening rate, with approximately 70% of HPV-positive women reaching a completion of care endpoint, compared with around 30% prior to the new CCSM strategy. CONCLUSIONS: Proyecto Precancer facilitated the adoption and sustainment of HPV testing with subsequent treatment of HPV-positive women (after visual inspection) using portable thermal ablation at the primary level. This was accompanied by the de-implementation of existing visual inspection-based screening strategies and colposcopy for routine precancer triage at the hospital level. This case study highlights how implementation science approaches were used to guide the sustained adoption of a new screen-and-treat strategy in the Peruvian Amazon, while facilitating de-implementation of older screening practices.

20.
Public Health Nurs ; 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38573238

RESUMO

OBJECTIVE: This article highlights key lessons learned while conducting a nurse-led community-based HIV prevention trial with youth experiencing homelessness (YEH), focusing on sexually transmitted infections testing and treatment, intervention sessions, community partnerships, and participant recruitment and retention. DESIGN: The insights and experiences shared aim to inform future research and the design of interventions targeting populations at high risk, particularly when facing unanticipated challenges. By addressing these areas, the article contributes to the decision-making for the design and delivery of effective strategies to improve the health outcomes among marginalized populations. RESULTS: The findings underscore the importance of flexibility and active participant engagement, cultivating strong relationships with community partners, utilizing technology and social media, and fostering a diverse research team that represents the heterogeneity of youth experiencing homelessness across race/ethnicity, gender identity, sexual orientation, and lived experiences. CONCLUSIONS: These recommendations aim to enhance participant access, engagement, and retention, while promoting rigorous research and meaningful study outcomes for YEH.

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