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1.
BMC Public Health ; 23(1): 773, 2023 04 26.
Artículo en Inglés | MEDLINE | ID: mdl-37101170

RESUMEN

BACKGROUND: Children and adolescents have suboptimal physical activity and eating habits during summer breaks. Unlike the school setting, there is little evidence on interventions to promote healthy lifestyle behaviors in Summer Day Camps (SDCs). METHODS: The aim of this scoping review was to examine physical activity, healthy eating, and sedentary behavior interventions in the SDCs. A systematic search on four platforms (EBSCOhost, MEDLINE, EMBASE, and Web of Science) was performed in May 2021 and was updated in June 2022. Studies related to promoting healthy behaviors, physical activity, sedentary behaviors and/or healthy eating among campers aged 6 to 16 in Summer Day Camps were retained. The protocol and writing of the scoping review were done according to the guidelines of the "Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR)". RESULTS: Most interventions had a positive effect on the behavioral determinants or the behaviors themselves (i.e., physical activity, sedentary behaviors, or healthy eating). Involving counsellors and parents, setting camp goals, gardening, and education are all relevant strategies in promoting healthy lifestyle behaviors in SDCs. CONCLUSIONS: Since only one intervention directly targeted sedentary behaviors, it should strongly be considered for inclusion in future studies. In addition, more long-term and experimental studies are needed to establish cause-and-effect relationships between healthy behavior interventions in SDCs and behaviors of children and young adolescents.


Asunto(s)
Ejercicio Físico , Conductas Relacionadas con la Salud , Adolescente , Niño , Humanos , Dieta Saludable , Escolaridad , Conducta Alimentaria
2.
BMC Public Health ; 18(Suppl 2): 1034, 2018 Oct 02.
Artículo en Inglés | MEDLINE | ID: mdl-30285701

RESUMEN

BACKGROUND: Healthy movement behaviours of Canadian children and youth have been found to be suboptimal; this is associated with declines in physical fitness, increases in obesity, and elevated chronic disease risk. Physical literacy is an evolving construct representing foundational domains upon which physically active lifestyles are based. Many sectors and organizations in Canada are embracing physical literacy in their programs, practices, policies, and research; however, the use of inconsistent definitions and conceptualizations of physical literacy had been identified by stakeholders as hindering promotion and advancement efforts. METHODS: With leadership from ParticipACTION, organizations from the physical activity, public health, sport, physical education, and recreation sectors collaborated to create a physical literacy consensus definition and position statement for use by all Canadian organizations and individuals. The process involved an environmental scan, survey of related evidence, stakeholder consultations, and creation of a Steering Committee. From this background work a consensus statement was drafted, shared with stakeholders, revised, and ratified. RESULTS: Canada's Physical Literacy Consensus Statement was launched in June 2015 at the International Physical Literacy Conference in Vancouver, British Columbia. To further promote the Consensus Statement, the Sport for Life Society developed and simultaneously released the "Vancouver Declaration", which contained additional guidance on physical literacy. Both the Consensus Statement and the Declaration endorsed the International Physical Literacy Association's definition of physical literacy, namely "the motivation, confidence, physical competence, knowledge and understanding to value and take responsibility for engagement in physical activities for life". CONCLUSIONS: Sector partners hope that the Consensus Statement, with its standardized definition, brings greater harmony, synergy, and consistency to physical literacy efforts in Canada and internationally. Going forward, the impact of this initiative on the sector, and the more distal goal of increasing habitual physical activity levels, should be assessed.


Asunto(s)
Ejercicio Físico , Alfabetización en Salud , Adolescente , Canadá , Niño , Preescolar , Consenso , Femenino , Guías como Asunto , Humanos , Masculino
3.
Implement Sci ; 18(1): 34, 2023 08 12.
Artículo en Inglés | MEDLINE | ID: mdl-37573323

RESUMEN

BACKGROUND: Collaborative approaches to knowledge translation (KT) are important for advancing community-engaged research. However, there is a need for examples of participatory approaches that have effectively supported public health research, program development, and implementation with First Nations communities. To strengthen KT with communities, we proposed a set of guiding principles for participatory planning and action for local food system change. Principles emerged from a cross-community analysis of Learning Circles: Local Healthy Food to School (LC:LHF2S) a participatory program (2015-2019) for Indigenous food system action. The objective was to identify guiding principles for participatory planning and action from key learnings and successes on scaling-up of the Learning Circles (LC) model vertically in Haida Nation, British Columbia (BC), and horizontally in three distinct community contexts: Gitxsan Nation, Hazelton /Upper Skeena, BC; Ministikwan Lake. The application of these principles is discussed in the context of our ongoing partnership with Williams Treaties First Nations to support community planning to enhance food security and sovereignty. METHODS: A cross-community thematic analysis was conducted and guided by an implementation science framework, Foster-Fishman and Watson's (2012) ABLe Change Framework, to identify key learnings and successes from adapting the LC approach. Information gathered from interviews (n = 55) and meeting reports (n = 37) was thematically analyzed to inform the development of guiding principles. Community sense-making of findings informed applicability in a new community context embarking on food systems work. RESULTS: Emergent guiding principles for participatory food system planning and action are described within four main areas: (1) create safe and ethical spaces for dialog by establishing trust and commitment from the ground up, (2) understand the context for change through community engagement, (3) foster relationships to strengthen and sustain impact, and (4) reflect and embrace program flexibility to integrate learnings. CONCLUSIONS: Emergent principles offer guidance to supporting Indigenous community-led research and mobilization of knowledge into action. Principles are intended to support researchers and health system administrators with taking a collaborative approach that fosters relationships and integration of community leadership, knowledge, and action for food system change. Application of principles with implementation frameworks can strengthen KT in Indigenous contexts by incorporating community protocols and perspectives in support of Indigenous self-determined priorities.


Asunto(s)
Seguridad Alimentaria , Salud Pública , Humanos , Canadá , Colombia Británica , Estudios Longitudinales
4.
Appl Physiol Nutr Metab ; 47(8): 813-825, 2022 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-35443141

RESUMEN

Indigenous communities in Canada are concerned about the health of their youth and the reclamation of traditional food-related skills amongst their people. Food sovereignty has an integral role in food and nutrition security, and the path to Indigenous self-determination. Learning Circles: Local Healthy Food to School (LC:LHF2S) was a community engagement model that aimed to enhance access to local, healthy, and traditional foods for youth. In each of four First Nations communities, a Learning Circle Evaluation Facilitator worked to plan and implement activities, build on community strengths, and promote partnerships. This paper describes how the model was perceived to support food sovereignty. Data included interviews, process reporting, and school surveys, and was analyzed according to pillars effective for the development of food sovereignty in Indigenous communities. Goals set by two communities incorporated food sovereignty principles, and in each community capacity-building work furthered the development of a more autonomous food system. There were many examples of a transition to greater food sovereignty, local food production, and consumption. Indigenous governance was an important theme and was influential in a community's success. The model appears to be an adaptable strategy to support the development of food sovereignty in First Nations communities. Novelty: LC:LHF2S was a community engagement model that aimed to enhance access to local, healthy, and traditional foods for youth. The model is an adaptable strategy to support the development of food sovereignty in First Nations communities. There were many examples of a transition to greater food sovereignty, local food production, and consumption.


Asunto(s)
Alimentos , Estado Nutricional , Adolescente , Canadá , Estado de Salud , Humanos
5.
Pharmacy (Basel) ; 10(1)2022 Feb 04.
Artículo en Inglés | MEDLINE | ID: mdl-35202073

RESUMEN

The number of opioid-related deaths in Canada has steadily increased since 2016 and the COVID-19 pandemic has worsened this trend. Naloxone has been pivotal for reducing opioid-related harms and death, and pharmacists play a crucial role in ensuring the supply of naloxone to Canadians through community pharmacies. However, naloxone dispensing by pharmacists is not optimal; in fact, in Ontario, only 50% of pharmacists offer naloxone, despite national guidelines that pharmacists should offer naloxone to everyone with an opioid prescription. When asked why pharmacists do not proactively offer naloxone, recent research has identified that pharmacists need continuing education to boost confidence and knowledge on how to start conversations with patients. The study involves a delayed start, double-blind randomized controlled trial, for Canadian licensed pharmacists and pharmacy technicians. The goals of the program are to increase Canadian pharmacy professional's knowledge, confidence, and motivation to proactively offer naloxone, as well as to decrease stigma associated with naloxone. The program incorporates behaviour change techniques from the Theoretical Domains Framework and the Theory of Planned Behaviour. The intervention program includes three modules that focus on improving pharmacists' communication skills by teaching them how to proactively offer naloxone, while the control group will complete a reading assignment on the naloxone consensus guidelines. The program will involve a process and outcome evaluation in addition to a contribution analysis. This program is important for breaking down previously identified barriers and knowledge gaps for why pharmacists currently do not proactively offer naloxone. This study will provide important new information about what behaviour change techniques are successful in improving confidence and motivation in the pharmacy profession and in an online environment. Findings from this study can be used to produce a national naloxone education program that can also be implemented into current pharmacy school curriculum.

6.
Artículo en Inglés | MEDLINE | ID: mdl-36497954

RESUMEN

Youth health, long-term food sovereignty and the reclamation of traditional food-related knowledge are areas of concern within Indigenous communities in Canada. Learning Circles: Local Healthy Food to School (LC:LHF2S) built on an exemplar program in four predominantly Indigenous communities. In each, the initiative worked with interested community members to plan, implement and evaluate a range of activities aimed at enhancing access to local, healthy and traditional foods for schools and youth. This case study describes the context, process, outcomes and perceptions of implementation in one of the communities, Hazelton/Upper Skeena, located in northern British Columbia. Data were collected between 2016-2019 and included semi-directed interviews with community members and LCEF (n = 18), process reporting (e.g., LCEF reports, emails, conference calls and tracking data), photographs and video footage, and photovoice. Data were analyzed thematically. Hazelton/Upper Skeena has an active local and traditional food culture. Indigenous governance was supportive, and community members focused on partnership and leadership development, gardens, and food skills work. Findings point to strengths; traditional food, knowledge and practices are valued by youth and were prioritized. LC:LHF2S is a flexible initiative that aims to engage the broader community, and exemplifies some of the best practices recommended for community-based initiatives within Indigenous communities. Results indicate that a LC is a feasible venture in this community; one that can facilitate partnership-building and contribute to increased access to local and traditional food among school-aged youth. Recommendations based on community input may help the uptake of the model in similar communities across Canada, and globally.


Asunto(s)
Alimentos , Promoción de la Salud , Adolescente , Humanos , Niño , Canadá , Promoción de la Salud/métodos , Colombia Británica , Instituciones Académicas , Liderazgo
7.
Curr Dev Nutr ; 6(6): nzac090, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-36628170

RESUMEN

Background: Indigenous communities in Canada are concerned about long-term food sovereignty and the reclamation of traditional food-related skills among their people. Learning Circles: Local Food to School (LF2S) was an innovative community-based project that worked to promote multisectoral partnerships, focused on food. Guided by a facilitator, the Learning Circle (LC) brought together interested community members to plan and implement activities aimed at enhancing access to local, healthy, and traditional foods for school communities. Objectives: The article describes the context, process, and food-related outcomes of the LC in Haida Gwaii (HG), British Columbia, Canada and evaluates perceptions of the transition in local food systems, food literacy, and community capacity associated with the LC. Methods: The sources that were gathered between 2016 and 2018 included annual semidirected interviews with community members and the Learning Circle Coordinator (LCC) (n = 24), process reporting (e.g., reports, conference calls, food sourcing and tracking data) (n = 62 documents), and photographs (n = 75). Data were analyzed thematically. Results: HG has a rich food environment and a vibrant local and traditional food culture. A variety of local food-related activities had been taking place before the launch of the LC in 2013, and by 2016 the initiative was firmly established. Between 2016 and 2019, activities in HG focused on schools (e.g., sourcing local, healthy food and developing traditional skills through schools) and pioneering local food pantries. Participants valued increased access to local and traditional foods and opportunities to build youth knowledge and skills. Noted successes of the LC process included transitioning to Haida leadership and fostering relationships. Conclusions: The inherent flexibility of the LC model means that communities can prioritize activities of interest. The evolution of the LC model in HG is an inspiration for other communities working to enhance food sovereignty.

8.
Appl Physiol Nutr Metab ; 47(11): 1051-1061, 2022 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-35994757

RESUMEN

Integrated knowledge translation (IKT) and community-based participatory research (CBPR) are recognized as effective approaches when Indigenous and non-Indigenous partners work together to focus on a common goal. The "Learning Circles: Local Healthy Food to School" (LC:LHF2S) study supported the development and implementation of Learning Circles (LC) in 4 Canadian Indigenous communities with the goal of improving local, community-based healthy food systems. Critical to the research process were annual gatherings (AG) where diverse stakeholders (researchers, Indigenous community members, and partners) visited each community to share knowledge, experiences, and provide support in the research process. Using a qualitative, descriptive method, this paper explores how the AG supported IKT across partners. Yearly interviews involving 19 total participants (with some participating multiple times across the 4 gatherings) elicited their AG experiences in supporting local LC:LHF2S. Three themes with multiple sub-themes were identified: (a) setting the stage for IKT (importance of in-person gatherings for building relationships across partners, learning from each other), (b) enabling meaningful engagement (aligning research with Indigenous values, addressing tensions and building trust over time, ensuring flexibility, and Indigenous involvement and leadership), and (c) supporting food system action at the local level (building local community engagement and understanding, and integrating support for implementation and scale-up of LC). This paper provides useful and practical examples of the principles of Indigenous-engaged IKT and CBPR in action in healthy, local, and traditional food initiatives. AG are a valuable IKT strategy to contribute to positive, transformative change and ethical research practice within Indigenous communities.


Asunto(s)
Investigadores , Ciencia Traslacional Biomédica , Humanos , Canadá , Investigación Cualitativa , Motivación
10.
Front Psychiatry ; 12: 761968, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34777063

RESUMEN

Despite the initial thrust of research aimed at understanding the impact of the COVID-19 pandemic on youth with physical illness and their parents, knowledge gaps in the literature remain, providing the impetus for additional investigation. This study described changes in psychological distress from prior to during the COVID-19 pandemic for parents and youth with physical illness, compared parent-proxy and youth self-reported perceptions of COVID-19-related psychosocial health, and modeled factors associated with psychological and psychosocial distress. There were 147 parent-youth dyads (2-16 years) from MY LIFE-a longitudinal study of youth with physical illness. The Kessler-6 (K6) measured psychological distress for the time before the COVID-19 lockdown (December 19 to March 20) and during the pandemic (December 20 to March 21) among parents and youth. COVID-19-related psychosocial health was measured using the CRISIS. Parents and youth reported increases in K6 scores (d = 0.62 and 0.38). Parent-proxy reports on the K6 were lower vs. youth self-reports prior to and during the pandemic (d = 0.63 for both). In contrast, parents reported lower proxy CRISIS scores for worries (d = 0.38) and effects of social restrictions (d = 0.52). Pandemic parent K6 scores were associated with age, combined in-person and online schooling for youth, COVID-19-related worries, and effects of social restrictions. For youth, only COVID-19-related worries and effects of social restrictions were associated with K6 scores. Parent worries were associated with youth sex, parental stress, family functioning, online and combination learning, and social restrictions. Parental depression and worries were associated with effects of social restrictions. Youth worries were associated with online and combination learning, and social restrictions. Youth disability, online learning, and worries were associated with effects of social restrictions. Few clinical factors are associated with COVID-19-related psychological and psychosocial distress. Instead, parent/family factors and youth learning environment have prominent roles in predicting outcomes and have implications for the health, education, and social services systems.

11.
Accid Anal Prev ; 127: 186-197, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30897524

RESUMEN

Past research has shown that winter precipitation is an important environmental factor that increases the frequency of motor vehicle collisions that cause personal injury and property damage. Questions remain about the magnitude of winter storm effects on collision occurrence, changes in risk over time, and the role of driver behaviour in conjunction with other factors (e.g., winter maintenance by road authorities) as it affects exposure and sensitivity to hazardous conditions. In response, a matched-pair, retrospective cohort method was used to estimate injury and non-injury collision risks for a mid-sized urban community based on a new definition of winter storm events that, relative to previous studies, captures a greater portion of time during which drivers respond to hazardous weather and road surface conditions. Winter storm definition criteria were applied to weather radar imagery and traditional surface station observations in a unique manner to classify and characterize a set of 196 variable-length storm events in terms of precipitation type and amount, visibility, temperature profile, presence of government-issued warnings, location, and temporal factors. Injury and non-injury collisions increased by 66 and 137 percent, respectively, during winter storms relative to dry weather conditions. Although these increases were higher than findings from similar studies of winter precipitation events conducted over the same timeframe (i.e., 2002-2016), they were found to have declined by a statistically significant amount over the course of the study period and disproportionately to collisions in general. Understanding why this is occurring, and then attributing improvements to specific winter road safety interventions and behavioural adjustments, is a key focus for future research and for informing future risk-mitigating investments.


Asunto(s)
Accidentes de Tránsito/estadística & datos numéricos , Estaciones del Año , Tiempo (Meteorología) , Humanos , Ontario/epidemiología , Estudios Retrospectivos , Medición de Riesgo , Temperatura , Heridas y Lesiones/epidemiología
12.
Health Promot Chronic Dis Prev Can ; 37(11): 386-392, 2017 Nov.
Artículo en Inglés, Francés | MEDLINE | ID: mdl-29119776

RESUMEN

INTRODUCTION: In health promotion and chronic disease prevention, both best and promising practices can provide critical insights into what works for enhancing the healthrelated outcomes of individuals and communities, and how/why these practices work in different situations and contexts. METHODS: The promising practices criteria were developed using the Public Health Agency of Canada's (PHAC's) existing best practices criteria as the foundation. They were modified and pilot tested (three rounds) using published interventions. Theoretical and methodological issues and challenges were resolved via consultation and in-depth discussions with a working group. RESULTS: The team established a set of promising practices criteria, which differentiated from the best practices criteria via six specific measures. CONCLUSION: While a number of complex challenges emerged in the development of these criteria, they were thoroughly discussed, debated and resolved. The Canadian Best Practices Portal's screening criteria allow one to screen for both best and promising practices in the fields of public health, health promotion, chronic disease prevention, and potentially beyond.


INTRODUCTION: Dans le domaine de la promotion de la santé et de la prévention des maladies chroniques, tant les pratiques exemplaires que les pratiques prometteuses peuvent fournir des renseignements cruciaux sur les interventions qui améliorent les résultats sur la santé des individus et des collectivités, notamment leur mode d'action et les raisons de leur efficacité dans différents contextes. MÉTHODOLOGIE: Nous avons établi des critères de définition des pratiques prometteuses sur la base des critères de l'Agence de la santé publique du Canada (ASPC) pour les pratiques exemplaires. Nous avons modifié et mis à l'épreuve (en trois phases) ces critères en nous servant d'interventions décrites dans des publications. Nous avons résolu les questions et les difficultés d'ordre théorique et méthodologique grâce à des consultations et des discussions approfondies avec un groupe de travail. RÉSULTATS: L'équipe a établi un ensemble de critères relatifs aux pratiques prometteuses qui diffèrent sur six plans des critères relatifs aux pratiques exemplaires. CONCLUSION: Bien que plusieurs difficultés complexes se soient présentées pendant l'élaboration des critères, des discussions et des débats exhaustifs nous ont permis de les surmonter. Les critères de sélection du Portail canadien des pratiques exemplaires permettent de repérer les pratiques exemplaires et prometteuses dans les domaines de la santé publique, de la promotion de la santé et de la prévention des maladies chroniques, voire éventuellement dans d'autres domaines.


Asunto(s)
Enfermedad Crónica/prevención & control , Promoción de la Salud/normas , Servicios Preventivos de Salud/normas , Evaluación de Programas y Proyectos de Salud/normas , Benchmarking , Canadá , Promoción de la Salud/métodos , Humanos , Internet , Guías de Práctica Clínica como Asunto/normas , Servicios Preventivos de Salud/métodos
13.
Prev Med Rep ; 6: 53-62, 2017 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-28271021

RESUMEN

Smoking prevalence among LGBTQ + youth and young adults is alarmingly high compared to their non-LGBTQ + peers. The purpose of the scoping review was to assess the current state of smoking prevention and cessation intervention research for LGBTQ + youth and young adults, identify and describe these interventions and their effectiveness, and identify gaps in both practice and research. A search for published literature was conducted in PubMed, Scopus, CINAHL, PsychInfo, and LGBT Life, as well as an in-depth search of the grey literature. All English articles published or written between January 2000 and February 2016 were extracted. The search identified 24 records, of which 21 were included; 11 from peer reviewed sources and 10 from the grey literature. Of these 21, only one study targeted young adults and only one study had smoking prevention as an objective. Records were extracted into evidence tables using a modified PICO framework and a narrative synthesis was conducted. The evidence to date is drawn from methodologically weak studies; however, group cessation counselling demonstrates high quit rates and community-based programs have been implemented, although very little evidence of outcomes exist. Better-controlled research studies are needed and limited evidence exists to guide implementation of interventions for LGBTQ + youth and young adults. This scoping review identified a large research gap in the area of prevention and cessation interventions for LGBTQ youth and young adults. There is a need for effective, community-informed, and engaged interventions specific to LGBTQ + youth and young adults for the prevention and cessation of tobacco.

14.
Clin Transl Sci ; 7(6): 430-40, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24842076

RESUMEN

BACKGROUND: Although research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants' experiences. To address this, we developed and deployed a survey at 15 NIH-supported clinical research centers to assess participant-centered outcomes; we report responses from 4,961 participants. METHODS: Survey questions addressed core aspects of the research participants' experience, including their overall rating, motivation, trust, and informed consent. We describe participant characteristics, responses to individual questions, and correlations among responses. RESULTS: Respondents broadly represented the research population in sex, race, and ethnicity. Seventy-three percent awarded top ratings to their overall research experience and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect, listened to, and having access to the research team (R(2) = 0.80-0.96). White participants trusted researchers more (88%) than did nonwhite participants collectively (80%; p < 0.0001). Many participants felt fully prepared by the informed consent process (67%) and wanted to receive research results (72%). CONCLUSIONS: Our survey demonstrates that a majority of participants at NIH-supported clinical research centers rate their research experience very positively and that participant-centered outcome measures identify actionable items for improvement of participant's experiences, research protections, and the conduct of clinical investigation.


Asunto(s)
Investigación Biomédica , National Institutes of Health (U.S.) , Evaluación del Resultado de la Atención al Paciente , Investigadores , Demografía , Femenino , Humanos , Consentimiento Informado , Masculino , Motivación , Análisis de Regresión , Encuestas y Cuestionarios , Estados Unidos
15.
Health Educ Behav ; 40(1 Suppl): 43S-50S, 2013 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-24084399

RESUMEN

The Heart and Stroke Foundation's Spark Together for Healthy Kids™ (Spark) is a multiyear initiative in Ontario, Canada, that takes a population approach to obesity prevention. It focuses on creating healthy environments by improving access to healthy foods and physical activity, with an emphasis on strengthening the advocacy capacity of organizations and citizens. Consistent with the complexity of the intervention, the evaluation of Spark applied systems concepts and methods to test the utility of network analysis as a method for evaluation, and to inform collaborations of organizations involved in programs and advocacy. Relationships among organizations from different sectors and jurisdictional levels with a focus on school community environments were of particular interest. Interorganizational network analysis was used to understand these relationships, including the role of the Heart and Stroke Foundation. Findings revealed a niche brokering role for the Heart and Stroke Foundation and other provincial and national organizations, and the importance of these brokers for engaging local and regional organizations. Findings also reinforced the importance of a mixed methods approach to network analysis, and the potential value of the analysis for scientific and practical purposes.


Asunto(s)
Redes Comunitarias/organización & administración , Programas Gente Sana/organización & administración , Cardiopatías/prevención & control , Relaciones Interinstitucionales , Obesidad/prevención & control , Accidente Cerebrovascular/prevención & control , Niño , Conducta Cooperativa , Planificación Ambiental , Abastecimiento de Alimentos , Programas Gente Sana/métodos , Cardiopatías/etiología , Humanos , Actividad Motora , Obesidad/complicaciones , Ontario , Accidente Cerebrovascular/etiología , Encuestas y Cuestionarios , Análisis de Sistemas
16.
Clin Transl Sci ; 5(6): 452-60, 2012 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-23253666

RESUMEN

INTRODUCTION: Clinical research participants' perceptions regarding their experiences during research protocols provide outcome-based insights into the effectiveness of efforts to protect rights and safety, and opportunities to enhance participants' clinical research experiences. Use of validated surveys measuring patient-centered outcomes is standard in hospitals, yet no instruments exist to assess outcomes of clinical research processes. METHODS: We derived survey questions from data obtained from focus groups comprised of research participants and professionals. We assessed the survey for face/content validity, and privacy/confidentiality protections and fielded it to research participants at 15 centers. We conducted analyses of response rates, sample characteristics, and psychometrics, including survey and item completion and analysis, internal consistency, item internal consistency, criterion-related validity, and item usefulness. Responses were tested for fit into existing patient-centered dimensions of care and new clinical research dimensions using Cronbach's alpha coefficient. RESULTS: Surveys were mailed to 18,890 individuals; 4,961 were returned (29%). Survey completion was 89% overall; completion rates exceeded 90% for 88 of 93 evaluable items. Questions fit into three dimensions of patient-centered care and two novel clinical research dimensions (Cronbach's alpha for dimensions: 0.69-0.85). CONCLUSIONS: The validated survey offers a new method for assessing and improving outcomes of clinical research processes.


Asunto(s)
Investigación Biomédica , Recolección de Datos , Percepción , Adolescente , Adulto , Anciano , Demografía , Femenino , Humanos , Masculino , Persona de Mediana Edad , Grupos Raciales , Reproducibilidad de los Resultados , Estados Unidos , Adulto Joven
17.
Clin Transl Sci ; 4(6): 403-13, 2011 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-22212221

RESUMEN

INTRODUCTION: Participants' perceptions of their research experiences provide valuable measures of ethical treatment, yet no validated instruments exist to measure these experiences. We conducted focus groups of research participants and professionals as the initial step in developing a validated instrument. METHODS: Research participants enrolled in 12 focus groups, consisting of: (1) individuals with disorders undergoing interventions; (2) in natural history studies; or (3) healthy volunteers. Research professionals participated in six separate groups of: (1) institutional review board members, ethicists, and Research Subject Advocates; (2) research nurses/coordinators; or (3) investigators. Focus groups used standard methodologies. RESULTS: Eighty-five participants and 29 professionals enrolled at eight academic centers. Altruism and personal relevance of the research were commonly identified motivators; financial compensation was less commonly mentioned. Participants were satisfied with informed consent processes but disappointed if not provided test results, or study outcomes. Positive relationships with research teams were valued highly. Research professionals were concerned about risks, undue influence, and informed consent. CONCLUSIONS: Participants join studies for varied, complex reasons, notably altruism and personal relevance. They value staff relationships, health gains, new knowledge, and compensation, and expect professionalism and good organization. On the basis of these insights, we propose specific actions to enhance participant recruitment, retention, and satisfaction.


Asunto(s)
Investigación Biomédica/métodos , Participación del Paciente , Adulto , Anciano , Anciano de 80 o más Años , Comités de Ética en Investigación , Femenino , Grupos Focales , Humanos , Consentimiento Informado , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Selección de Paciente , Percepción , Proyectos de Investigación
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