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1.
Res Involv Engagem ; 10(1): 45, 2024 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-38720386

RESUMEN

BACKGROUND: This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures. MAIN BODY: The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them. CONCLUSION: This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.


Together with a graduate student, co-supervisors, and 15 young people from across Canada who have experience with mental health challenges, this paper looks at how research involving young adults as patient research partners can be better. We feel that the types of research that are supposed to include us are often not clear enough and make it hard to join, especially those with unique life situations and health issues. So, in this paper, we suggest a few new ways of doing things where everyone is treated equally. We call it Primus Inter PARES: First Among Equals. This means young people are just as important as anyone else in research.We want to change the old ways that do not consider our unique experiences as young people with mental health issues. We came up with new ideas like 'Equitable Dialogue' and 'Trust Architecture' to ensure everyone understands the research and feels that they can trust the process. We also suggest ways to make sure different voices are heard and that everyone has a fair chance to contribute.We do not just offer a one-size-fits-all solution; instead, we share many ways to improve research to help young adults who want to be part of research and for the researchers who want to work with us. Our paper is about making research fair and including everyone's point of view. We hope this will make the research better for everyone, especially for young adults.

2.
Indian J Psychol Med ; 46(2): 131-138, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38725731

RESUMEN

Background: There is increasing evidence of the need for treatment engagement between Persons with Severe Mental Illnesses (PwSMIs) and Mental Health Professionals (MHPs). This therapeutic process involves collaborative work between patients and MHPs, which improves the condition. Community nurses are uniquely positioned to facilitate this process as they act as the focal point of interaction between patients and the health system. Methods: This qualitative study explored the community nurses' experiences in treatment engagement with PwSMI through eight group interviews of 35 community nurses from District Mental Health Programs (DMHPs) across Karnataka (South India) from February 2020 to March 2020. The audio recordings of the interviews were transcribed and coded to arrive at themes and subthemes. Results: The major themes identified were factors influencing treatment engagement, strategies to tackle treatment nonengagement, and challenges in dealing with nonengagement. The reasons for nonengagement were lack of insight and lack of knowledge of sociocultural, logistic, and treatment-related factors. The DMHP teams contacted patients through phone calls, home visits, and liaisons with health workers and intervened with them through education and depot injections. The major challenges were difficulty conducting home visits, distances, the unavailability of medications, and the need for adequate infrastructure and human resources. Conclusion: Community nurses address a few factors of nonengagement, such as insight, sociocultural factors, and treatment-related factors. Addressing the systemic challenges and adequate training of nurses in intervening in the dropped-out PwSMIs would help to reduce the treatment gap.

3.
Res Involv Engagem ; 10(1): 46, 2024 May 10.
Artículo en Inglés | MEDLINE | ID: mdl-38730485

RESUMEN

Although including public contributors as members of research teams is becoming common, there are few reflections on how they have been incorporated, and almost none of these reflections are co-produced with public contributors. This commentary, written by both academics and a public contributor, reflects on Patient and Public Involvement (PPI) activities when undertaking a framework analysis of PPI sections of annual reports from the National Institute for Health and care Research (NIHR) funded research centres. The UK Standards for Public Involvement (inclusive opportunities, working together, support and learning, communications, impact and governance) were used to structure our reflections. Key topics of reflection were: how difficult it is, in practice, to incorporate PPI into all aspects of the research cycle, especially when completing a commissioned research project on a short time-frame, and the complexities of incorporating PPI into qualitative analysis. Although useful when reflecting upon our own PPI practices, ways in which the UK Standards for Public Involvement could be improved were suggested. We hope that the co-produced recommendations can be used by other teams engaging with public contributors.


Although including public contributors as members of research teams is becoming common, there are few reflections on how they have been incorporated, and almost none of these reflections are co-produced with public contributors. This commentary, written by both academics and a public contributor, reflects on Patient and Public Involvement (PPI) activities when undertaking an evaluation of PPI sections of annual reports from the National Institute for Health and care Research (NIHR) funded research centres. The UK Standards for Public Involvement (inclusive opportunities, working together, support and learning, communications, impact and governance) were used to structure our reflections. Key topics of reflection were: how difficult it is, in practice, to incorporate PPI into all aspects of the research cycle, especially when completing a commissioned research project within a short time-frame, and the complexities of incorporating PPI into qualitative analysis. Although useful when reflecting upon our own PPI practices, ways in which the UK Standards for Public Involvement could be improved were suggested. We hope that the co-produced recommendations can be used by other teams engaging with public contributors.

4.
JMIR Aging ; 7: e49608, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38715315

RESUMEN

Background: Over the last decade, many organizations dedicated to serving the needs and interests of older adults have turned to social media platforms, such as Twitter, subsequently rebranded X, to improve the visibility of age-related issues. However, notwithstanding their growing digital presence and participation, minimal attention has been paid to the use of social media among these advocacy groups. To achieve policy change, advocacy organizations must first be able to engage and mobilize audiences. Objective: Our study aims to elucidate how different tweet features affect the time it takes for posts uploaded by age advocacy organizations to reach peak engagement. Methods: We collated 204,905 tweets from 53 age advocacy organizations posted over a 12-year period. The engagement score of each tweet was calculated by combining well-established metrics, namely likes, retweets, quote tweets, and replies. We ran Cox models with tweet features as predictors and time-to-peak engagement as the outcome. "Peak engagement" (event) refers to engagement scores above the 75th percentile, and "time" refers to months taken to reach peak engagement per tweet. Results: Approximately 1 in 2 tweets (n=103,068, 50.3%) had either no hashtags or just 1 hashtag. Around two-thirds (n=131,220, 64%) of the tweets included a URL. Visual information was highly underused, with most tweets not including GIFs (n=204,202, 99.7%), videos (n=199,800, 97.5%), or photos (n=143,844, 70.2%). Roughly half (n=101,470, 49.5%) of the tweets contained mentions and 9.3% (n=19,009) of tweets were replies. Only 4.5% (n=9285) of tweets were quote tweets. Most tweets were uploaded in the afternoon (n=86,004, 42%) and on a weekday (n=180,499, 88.1%). As hypothesized, features associated with peak engagement were the inclusion of visual elements like photos, which increased peak engagement by 3 times (P<.001), and the use of 3 or more hashtags (P<.001). Quote tweets increased engagement by 3 times (P<.001), as compared to regular tweets, controlling for account-level covariates. Tweets from organizations with a higher tweet volume were 40% less likely to reach peak engagement (P<.001). Conclusions: Social media as a networked platform has the potential to reach users on a global scale and at an exponential speed. Having uncovered the features that are more likely to reach peak engagement on Twitter, our study serves as an invaluable resource for age advocacy organizations in their movement to create a more age-inclusive world.


Asunto(s)
Medios de Comunicación Sociales , Medios de Comunicación Sociales/estadística & datos numéricos , Humanos , Anciano , Defensa del Consumidor
5.
BMC Med Ethics ; 25(1): 54, 2024 May 14.
Artículo en Inglés | MEDLINE | ID: mdl-38745276

RESUMEN

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.


Asunto(s)
Vacunas contra el SIDA , Investigación Participativa Basada en la Comunidad , Infecciones por VIH , Negociación , Investigación Cualitativa , Humanos , Vacunas contra el SIDA/administración & dosificación , Infecciones por VIH/prevención & control , Tanzanía , Ensayos Clínicos como Asunto , Grupos Focales , Masculino , Femenino , Toma de Decisiones , Investigadores , Participación de los Interesados , Países en Desarrollo , Adulto
6.
J Hum Nutr Diet ; 2024 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-38713734

RESUMEN

BACKGROUND: Dementia is a global public health challenge. Evidence suggests that individuals from South Asian communities are an at-risk group for dementia, partly as a result of early and cumulative exposure to known dementia risk factors, such as obesity and type 2 diabetes. There needs to be more culturally appropriate community engagement to increase awareness of dementia and identify better strategies to encourage participation in dementia-related research. METHODS: We aimed to better understand the barriers and facilitators towards engaging with, and participating in, diet and dementia related research among British South Asians. This was achieved using a public and patient involvement (PPI) approach. A community-based, engagement event involving information sharing from experts and roundtable discussions with South Asian communities (n = 26 contributors) was held in June 2023 in Newcastle-upon-Tyne, UK. Collaboration from preidentified PPI representatives (n = 3) informed the content and structure of PPI activities, as well as recruitment. Data were synthesised using template analysis, a form of codebook thematic analysis. This involved deductively analysing data using relevant a priori themes, which were expanded upon, or modified, via inductive analysis. RESULTS: The findings highlighted the importance of trust, representation and appreciation of cultural barriers as facilitators to engagement in diet and dementia risk reduction research. Consideration of language barriers, time constraints, social influences and how to embed community outreach activities were reported as driving factors to maximise participation. CONCLUSIONS: This PPI work will inform the design and co-creation of a culturally adapted dietary intervention for brain health in accordance with the Medical Research Council and National Institute for Health and Care Research guidance for developing complex interventions.

7.
J Occup Health ; 2024 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-38713918

RESUMEN

OBJECTIVES: Perceived Organizational Support (POS) represents the extent to which employees believe their organization values their contributions and well-being. While higher POS is associated with increased work engagement and learning motivation, the intricacies of this relationship, especially the mediation by Occupational Future Time Perspective (OFTP), are not well understood. METHODS: We conducted an online survey of 2,046 working individuals aged 20-69 to assess the relationships between POS and two outcome variables, Learning Goal Orientation (LGO), and work engagement with multiple regression analyses for all ages and in the younger age group (under 45). Then, the mediating effects of Focus on Opportunity (FOO) - a primary component of OFTP- on these relationships were examined. RESULTS: Of 2046 participants, 887 were younger than 45 years old. Younger participants, predominantly more educated and inclined towards professional jobs, exhibited higher LGO but lower work engagement compared to their older counterparts. POS showed positive correlations with LGO, and FOO significantly mediated the relationship, especially in the young group. Furthermore, a positive relationship between POS and work engagement was noted, with FOO as a partial mediator. CONCLUSIONS: POS correlates positively with both LGO and work engagement across various age demographics, with FOO critically mediating this relationship. To enhance employee engagement and learning motivation, organizations should emphasize bolstering both POS and FOO.

8.
J Clin Epidemiol ; : 111385, 2024 May 09.
Artículo en Inglés | MEDLINE | ID: mdl-38734271
9.
J Youth Stud ; 27(4): 558-587, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38706784

RESUMEN

Researchers have examined civic engagement as a health promotion tool among older adults and adolescents, yet less is known about its mental health implications for young adults. This systematic review identified 53 articles on civic engagement and well-being in young adults. Five key themes emerged: (1) varying associations between type of civic engagement and well-being, (2) duration and frequency of civic behaviors, (3) directionality in the civic-to-well-being pathway, (4) mediation and moderation factors affecting the civic-to-well-being pathway, and (5) civic engagement as a tool for coping with adversity or systemic oppression. Civic engagement demonstrates a heterogeneous relationship to well-being; future research should focus on the explanatory pathways for positive, negative, and null correlations particularly among historically marginalized young adults.

10.
Soc Sci Med ; 350: 116923, 2024 Apr 28.
Artículo en Inglés | MEDLINE | ID: mdl-38705076

RESUMEN

This study examines how conversations between patients and clinicians about the causes of their health conditions relate to patient engagement in care. Leveraging cultural health capital (CHC) theory, we find that patient-physician discussions of health attributions are one mechanism to build patient understanding and activate engagement. We present a qualitative interpretive analysis of data collected in three phases with adult home health care patients: phone interviews (n = 28), field observations (n = 61), and semi-structured field interviews (n = 38). We find that engaging in discussions of causal health attributions with clinicians enables patients to overcome uncertainty, envision preventive actions, and engage in setting future goals. Such discussions must be supported by acknowledgement of the co-responsibility of individual factors and structural factors such as social determinants of health. These discussions are not easy to navigate but they can potentially help patients transition from a mindset of treating the disease (pathogenic approach) to an awareness of their available capabilities to improve health (salutogenic approach). This study contributes to research on attribution theory and cultural health capital theory by demonstrating how discussing causes for poor health can enable patients resolve doubts and accrue instrumental and symbolic resources that facilitate healing.

11.
Res Involv Engagem ; 10(1): 42, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38693591

RESUMEN

BACKGROUND: Participatory research approaches systematically integrate the perspectives of individuals, organizations, or communities that have a direct interest in a study's processes and outcomes (i.e., stakeholders) in research design and implementation. This supports interventions that are developed "by, not for" end-users, thereby increasing acceptability, uptake, and adherence. However, participatory approaches are relatively under-utilized in intervention development and behavioral change intervention research, in part, due to inadequate reporting of methodology. Therefore, to improve transparency in planning and reporting, we (a) describe how we engaged patients and community organizations (i.e., patient and community partners) in grant development for a self-compassion and physical activity behaviour change intervention for women with cardiovascular risk factors and (b) present a protocol for engaging patient and community partners in the optimization and implementation of the intervention moving forward. METHODS: Our participatory research approach was guided by the Strategy for Patient-Oriented Research patient engagement framework and our prior stakeholder engagement work. Four patients and three community partners were engaged at the level of Involve, meaning their perspectives informed directions, processes, and decisions at major project milestones. Specifically, patient and community partners engaged in three separate meetings during grant development wherein they: (a) established a Terms of Reference to guide engagement activities and expectations; (b) shaped the grant through guided conversations about research priorities, outcomes, and intervention delivery components that could be targeted for optimization and (c) co-developed a protocol that specifies how relationships will be initiated with future patient partners, proposes engagement activities across the research cycle, and includes plans for formal evaluation of engagement processes. CONCLUSIONS: Participatory research approaches provide valuable insights into the development of behavioural interventions, especially when stakeholders can partner early and have a meaningful impact. By detailing our engagement activities to date, we hope to model an approach to engaging stakeholders in behavioral intervention development and demonstrate the impacts of doing so.


BACKGROUND: Participatory research engages individuals, organizations, or communities affected by a study's outcomes ("stakeholders"), in its design and conduct. Participatory research approaches are not commonly used in intervention development and behavioral intervention research, in part due to a lack of studies describing ways to engage stakeholders in this work. Therefore, our study aimed to (a) describe how we engaged patients and community organizations ("patient and community partners") in developing a grant application for a behaviour intervention for women with cardiovascular risk factors and (b) present a protocol for engaging patient and community partners in the future intervention. METHODS: Our approach was guided by the Strategy for Patient-Oriented Research patient engagement framework and our prior engagement work. Four patient and three community partners were engaged at the level of Involve, meaning their perspectives informed directions, processes, and decisions at project milestones. Across three sets of meetings, patient and community partners: (a) established a Terms of Reference to guide engagement activities and expectations; (b) shaped the grant through guided conversations about research priorities, outcomes, and intervention design; and (c) co-developed a protocol that described how relationships will be initiated with future patient partners, potential engagement activities across the research cycle, and evaluation plans. CONCLUSIONS: Participatory research approaches provide valuable insights into the development of behavioural interventions, especially when stakeholders can partner early and have a meaningful impact. By detailing our engagement activities, we hope to model an approach to engaging stakeholders in behavioral intervention development and demonstrate the impacts of doing so.

12.
BMC Palliat Care ; 23(1): 117, 2024 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-38711035

RESUMEN

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


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Participación de la Comunidad/métodos , Participación de la Comunidad/psicología
13.
Health Res Policy Syst ; 22(1): 56, 2024 May 06.
Artículo en Inglés | MEDLINE | ID: mdl-38711067

RESUMEN

BACKGROUND: Health is increasingly affected by multiple types of crises. Community engagement is recognised as being a critical element in successful crisis response, and a number of conceptual frameworks and global guideline documents have been produced. However, little is known about the usefulness of such documents and whether they contain sufficient information to guide effective community engagement in crisis response. We undertake a scoping review to examine the usefulness of conceptual literature and official guidelines on community engagement in crisis response using a realist-informed analysis [exploring contexts, mechanisms, and outcomes(CMOs)]. Specifically, we assess the extent to which sufficient detail is provided on specific health crisis contexts, the range of mechanisms (actions) that are developed and employed to engage communities in crisis response and the outcomes achieved. We also consider the extent of analysis of interactions between the mechanisms and contexts which can explain whether successful outcomes are achieved or not. SCOPE AND FINDINGS: We retained 30 documents from a total of 10,780 initially identified. Our analysis found that available evidence on context, mechanism and outcomes on community engagement in crisis response, or some of their elements, was promising, but few documents provided details on all three and even fewer were able to show evidence of the interactions between these categories, thus leaving gaps in understanding how to successfully engage communities in crisis response to secure impactful outcomes. There is evidence that involving community members in all the steps of response increases community resilience and helps to build trust. Consistent communication with the communities in time of crisis is the key for effective responses and helps to improve health indicators by avoiding preventable deaths. CONCLUSIONS: Our analysis confirms the complexity of successful community engagement and the need for strategies that help to deal with this complexity to achieve good health outcomes. Further primary research is needed to answer questions of how and why specific mechanisms, in particular contexts, can lead to positive outcomes, including what works and what does not work and how to measure these processes.


Asunto(s)
Participación de la Comunidad , Política de Salud , Humanos
15.
Int J Nurs Stud Adv ; 6: 100180, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38746798

RESUMEN

Background: Enhancing the quality of therapeutic engagement between nurse and service user is related to positive impact on care, safety, and recovery outcomes. Achieving improved therapeutic engagement remains challenging in the acute mental health inpatient setting, characterised by complex social processes and contextual features that constrain behaviour change. The Therapeutic Engagement Questionnaire is an evidence-based tool co-produced with service users and nurses to improve therapeutic engagement. Objectives: The objectives of this quality improvement project were to identify the organisational and nursing behaviour changes associated with the Therapeutic Engagement Questionnaire and to understand the active behaviour change ingredients of the improvement tool and how they exert their influence. Design: A qualitative multi-site case study design in which data were collected from study site field notes and document review. Setting: Four acute mental health inpatient case study sites in England. Methods: Data referencing Therapeutic Engagement Questionnaire-linked behaviour change in project meeting field notes and documents from each study site were analysed using an inductive and deductive approach with thematic analysis. The Capability Opportunity Motivation-Behaviour model was employed as a theoretical framework. Findings: The therapeutic engagement tool had the capacity to prompt behaviour change across all three components of the behaviour change model: Capability - through nurses sharing good therapeutic engagement practice and use of statements in the questionnaire to build nurses' knowledge and skills; Opportunity - through organisational barriers being addressed and ward-level practice and culture changes; Motivation - through nurses' awareness of their influence on service user recovery, nurses' alertness to their therapeutic work, and connections between the therapeutic engagement tool and nursing core values. However, the tool did not accord with the values of some nurses, reported to be unmotivated by the recognition it gave their profession for contribution to service user recovery. In sites evidencing more prominent behaviour change, senior leader and ward-level agents of change played a valuable facilitative role. Conclusion: The therapeutic engagement tool had the potential to prompt behaviour changes at organisation and ward level and to the ways individual nurses therapeutically engage with service users, helping strengthen therapeutic engagement practice. Leadership at senior organisational and ward level was important to address contextual barriers to change. The project resulted in a conceptual framework to explain and understand the behaviour change techniques and functions linked to the therapeutic engagement tool. Longevity of the behaviour changes and their impact on service user quality of care requires future evaluation. Tweetable abstract: A therapeutic engagement tool can prompt organisational and nursing behaviour change in acute mental health inpatient settings.

16.
Support Care Cancer ; 32(6): 352, 2024 May 15.
Artículo en Inglés | MEDLINE | ID: mdl-38748294

RESUMEN

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.


Asunto(s)
Neoplasias , Investigación Cualitativa , Humanos , Femenino , Masculino , Persona de Mediana Edad , Anciano , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Adulto , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/psicología , Relaciones Médico-Paciente , Entrevistas como Asunto , Comunicación , Antineoplásicos/efectos adversos , Anciano de 80 o más Años , Automanejo/métodos , Participación del Paciente/métodos , Participación del Paciente/psicología
17.
J Particip Med ; 16: e47500, 2024 May 15.
Artículo en Inglés | MEDLINE | ID: mdl-38748458

RESUMEN

BACKGROUND: A growing interest in engaging communities in the development of health care services and communities has not automatically led to progress or consensus as to how to engage communities successfully, despite the evidence base showing how to leverage enablers and alleviate barriers. OBJECTIVE: To bridge the gap between the evidence base and which community engagement (CE) approaches have actually been applied in practice over time, this study aims to investigate how CE approaches have changed over the past 4 years in 6 different regions in the Netherlands and citizens' and professionals' experiences underlying these changes. METHODS: For the last stage of a multiple case study following the development of CE approaches in 6 different regions in the Netherlands, a realist qualitative case study was conducted. To investigate how CE approaches had changed over the past 4 years, data from the entire 4 years of the study were used, including documents, interview transcripts, and observations. To examine citizens' and professionals' experiences underlying these changes, new interviews were conducted. The latest interview results were discussed with a panel to ensure the results had face validity. RESULTS: The regions had implemented different types of CE approaches over the past 4 years and were adapting these approaches over time. Many of the (remaining) approaches may be operating on a smaller scale. The study identified the following overarching themes along which CE had been adapted: fewer region-wide approaches and more community-focused approaches, more focus on building relationships with (already engaged) citizens and community-led initiatives, and more focus on practical and tangible health promotion and social cohesion activities and less focus on complex "abstract" programs. The study identified a further 4 overarching themes highlighting citizens' and professionals' experiences underlying these changes in the CE approaches: a lack of engagement environment, need for facilitative leadership from organizations, need for a clear and shared vision underscoring the importance of CE, and misalignment between citizens' and professionals' perspectives and motivations for CE. All participants had experienced the engagement environment as insufficient. To support CE, professionals experienced the need to develop and receive more facilitative leadership and to develop approaches better equipped to involve citizens in the decision-making process. Citizens experienced the need to better align citizens' and professionals' motivations and aims for CE approaches and to receive longer-term financial support for their community-led initiatives. CONCLUSIONS: This study suggests that CE has not yet been embedded within organizational cultures. This has arguably meant that the (remaining) CE approaches are operating on a smaller scale. To enable the further development of CE approaches, an investment in the engagement environment and a shared vision is required. Only then could CE within the regions move beyond the more seemingly smaller-scale CE approaches.

18.
Artículo en Inglés | MEDLINE | ID: mdl-38742600

RESUMEN

OBJECTIVES: This study investigates the effects of social isolation and loneliness on cognitive function, distinguishing between the effects of transitioning into and out of these states. METHODS: This study analyzed data from 6,663 adults aged 65 or older collected over the course of 7 waves (12 years) of the Korean Longitudinal Study of Ageing from 2006 to 2018. A novel asymmetric fixed effects model was utilized to separately estimate the effects of transitions into and out of social isolation or loneliness. RESULTS: The association of transitions into social isolation due to a lack of informal social contact or loneliness with cognitive function (b = -1.387, p < 0.001 and b = -0.601, p < 0.001, respectively) was stronger than the association of transitions out of these states (b = 0.345, p < 0.05. and b = 0.353, p < 0.001, respectively). The magnitude of the negative and positive coefficients was statistically different (F statistic = 45.29, p < 0.001 and F statistic = 5.12, p < 0.05, respectively). In contrast, no such asymmetric effects were observed for social isolation due to a lack of formal activity (F statistic = 0.06, p = 0.800). DISCUSSION: The detrimental effects of transitioning into social isolation due to a lack of informal social contact (but not formal activity) or loneliness on cognitive function outweighs the beneficial effects of transitioning out of these states. Preventing the onset of social disconnection should be prioritized as an intervention to improve the cognitive function of older adults.

19.
Sci Rep ; 14(1): 11046, 2024 May 14.
Artículo en Inglés | MEDLINE | ID: mdl-38745060

RESUMEN

Buildings are energy- and resource-hungry: their construction and use account for around 39% of global carbon dioxide emissions; they consume around 40% of all the energy produced; they are responsible for over 35% of the EU's total waste generation; and account for about 50% of all extracted (fossil) materials. Therefore, they present a significant challenge to meeting national and international Net Zero targets of reducing greenhouse emissions and fossil resource use. The CircularB Project, is at the heart of this issue, which will underpin synergies of multi-scale circular perspectives (from materials, to components, to assets and built environments), digital transformation solutions, data-driven and complexity science, stakeholder behavioral science, and interdisciplinary capabilities towards achievable, affordable and marketable circular solutions for both new and existing buildings, for sustainable urban design, and for circular built environments across Europe. This paper contributes to the project by deriving new insights into the stakeholders' influences, inter-relationships, and obstacles in the implementation of circular economy concepts on existing building stocks in Europe, which represent over 90% of whole building assets. In order to identify and derive the insights, our study is rigorously based on (i) a robust critical literature review of key documentations such as articles, standards, policy reports, strategic roadmaps and white papers; and (ii) interviews with relevant stakeholders and decision makers. Uniquely, our work spans across all scales of CE implementation from materials, to products and components, to existing building stocks, and to living built environments. The findings point out the current challenges and obstacles required to be tackled. Inadequacies of financial incentives and governmental enforcement (via policy, legislation, or directive) are commonly found to be the most critical obstacles found throughout Europe. Circular economy is the global challenge and not just a single country can resolve the climate issue without the cooperation of other countries. The insights thus highlight the essential need for harmonized actions and tactical/pragmatic policies promoted and regulated by the European Commission, national and local governments who can dominate the influence, promote inter-relationship, and overcome the barriers towards circular economy much more effectively.

20.
CJEM ; 26(5): 349-358, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38704790

RESUMEN

PURPOSE: We utilized quality improvement (QI) approaches to increase emergency department (ED) provider engagement with research participant enrollment during the opioid crisis and coronavirus disease (COVID-19) pandemic. The context of this work is the Evaluating Microdosing in the Emergency Department (EMED) study, a randomized trial offering buprenorphine/naloxone to ED patients through randomization to standard or microdosing induction. Engaging providers is crucial for participant recruitment to our study. Anticipating challenges sustaining long-term engagement after a 63% decline in provider referrals four months into enrollments, we applied Plan-Do-Study-Act (PDSA) cycles to develop and implement an engagement strategy to increase and sustain provider engagement by 50% from baseline within 9 months. METHODS: Our engagement strategy was centered on Coffee Carts rounds: 5-min study-related educational presentations for providers on shift; and a secondary initiative, a Suboxone Champions program, to engage interested providers as study-related peer educators. We used provider referrals to our team as a proxy for study engagement and report the percent change in mean weekly referrals across two PDSA cycles relative to our established referral baseline. RESULTS: A QI approach afforded real-time review of interventions based on research and provider priorities, increasing engagement via mean weekly provider referrals by 14.5% and 49% across two PDSA cycles relative to baseline, respectively. CONCLUSIONS: Our Coffee Carts and Suboxone Champions program are efficient, low-barrier, educational initiatives to convey study-related information to providers. This work supported our efforts to maximally engage providers, minimize burden, and provide life-saving buprenorphine/naloxone to patients at risk of fatal overdose.


RéSUMé: BUT: Nous avons utilisé des approches d'amélioration de la qualité (AQ) pour accroître l'engagement des fournisseurs des services d'urgence (SU) avec l'inscription des participants à la recherche pendant la crise des opioïdes et la pandémie de maladie à coronavirus (COVID-19). Le contexte de ce travail est l'étude Evaluating Microdosing in the Emergency Department (EMED), un essai randomisé offrant de la buprénorphine/naloxone aux patients aux urgences par randomisation à l'induction standard ou au microdosage. L'engagement des fournisseurs est crucial pour le recrutement des participants à notre étude. En anticipant les difficultés à maintenir un engagement à long terme après une baisse de 63 % des recommandations de fournisseurs quatre mois après les inscriptions, nous avons appliqué le Plan-Do-Study-Act (PDSA) cycles d'élaboration et de mise en œuvre d'une stratégie d'engagement visant à accroître et à maintenir l'engagement des fournisseurs de 50 % par rapport au niveau de référence dans les neuf mois. MéTHODES: Notre stratégie de mobilisation était axée sur les tournées de Coffee Carts : des présentations éducatives de cinq minutes sur l'étude pour les fournisseurs sur le quart de travail; et une initiative secondaire, un programme Suboxone Champions, pour mobiliser les fournisseurs intéressés en tant que pairs éducateurs liés à l'étude. Nous avons utilisé les recommandations des fournisseurs à notre équipe comme indicateur de la participation à l'étude et nous avons signalé le pourcentage de changement dans les recommandations hebdomadaires moyennes pour deux cycles PDSA par rapport à notre base de référence établie. RéSULTATS: Une approche d'AQ a permis d'examiner en temps réel les interventions en fonction des priorités de la recherche et des fournisseurs, ce qui a augmenté l'engagement par l'intermédiaire des recommandations hebdomadaires moyennes des fournisseurs de 14,5 % et de 49 % au cours de deux cycles de PDSA par rapport au niveau de référence, respectivement. CONCLUSION: Notre programme Coffee Carts and Suboxone Champions est une initiative éducative efficace et peu contraignante qui permet de transmettre aux fournisseurs des renseignements sur les études. Ce travail a appuyé nos efforts visant à mobiliser au maximum les fournisseurs, à réduire au minimum le fardeau et à fournir de la buprénorphine/naloxone vitale aux patients à risque de surdose mortelle.


Asunto(s)
COVID-19 , Servicio de Urgencia en Hospital , Sobredosis de Opiáceos , Mejoramiento de la Calidad , Humanos , COVID-19/epidemiología , Sobredosis de Opiáceos/epidemiología , Naloxona/uso terapéutico , Naloxona/administración & dosificación , Selección de Paciente , Antagonistas de Narcóticos/uso terapéutico , Antagonistas de Narcóticos/administración & dosificación , Salud Pública , Pandemias , SARS-CoV-2 , Masculino , Femenino , Buprenorfina/uso terapéutico
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