Development of Policy Recommendations to Support a National Autism Strategy: Case of a Virtual and Inclusive Stakeholder Engagement Process.
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SUBMITTER: Tomas V
PROVIDER: S-EPMC10125094 | biostudies-literature | 2022 Sep
REPOSITORIES: biostudies-literature
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Development of Policy Recommendations to Support a National Autism Strategy: Case of a Virtual and Inclusive Stakeholder Engagement Process.
Tomas Vanessa V Finlay Brittany B Gentles Stephen J SJ Campbell Madison M Gill-Badesha Daljit D Abel Carolyn C Zwicker Jennifer D JD Lai Jonathan J
International journal of health policy and management 20220921
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Project description:The health and education departments of government share a responsibility for promoting the health of children through policies in the school setting. These policies can be enhanced through the involvement of such stakeholders as school personnel, students, parents or caregivers, health professionals, the non-profit sector and industry. Although there is little evidence-based literature on the roles of stakeholders in school policy development and implementation, stakeholder involvement appears to be critical throughout the policy process. This article discusses stakeholder involvement in the development and implementation of school policies that promote and support healthy eating and physical activity. Canadian examples illustrate stakeholder engagement in this context.Electronic Supplementary MaterialSupplementary material is available for this article at 10.1007/BF03405621 and is accessible for authorized users.
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Project description:BackgroundAlthough paternal involvement in the perinatal period is associated with benefits for maternal-child health and reduced obesity risk, fathers are seldom included in perinatal or obesity prevention efforts. Engaging community leaders and fathers as stakeholders in intervention development is a critical step in designing a father-inclusive intervention that is efficacious and responsive to their needs.MethodsWe conducted a structured engagement study, including community stakeholder engagement and qualitative interviews with new fathers, to inform the development of a prospective randomized controlled trial that includes mothers and fathers as equal partners in infant obesity prevention. We interpreted stakeholder feedback through the Consolidated Framework for Implementation Research (CFIR) framework.ResultsBetween September 2019 and April 2020, we held a Community Engagement meeting, formed a Community Advisory Board, and conducted 16 qualitative interviews with new fathers. Stakeholder engagement revealed insights across CFIR domains including intervention characteristics (relative advantage, complexity, design quality & packaging), outer setting factors (cosmopolitanism and culture), individual characteristics (including self-efficacy, state of change, identification with the organization) and process (engagement and adaptation). Stakeholders discussed the diverse challenges and rewards of fatherhood, as well as the intrinsic paternal motivation to be a loving, supportive father and partner. Both community leaders and fathers emphasized the importance of tailoring program delivery and content to meet specific parental needs, including a focus on the social-emotional needs of new parents.ConclusionsA structured process of multidimensional stakeholder engagement was successful in improving the design of a father-inclusive perinatal obesity prevention interventions. Father engagement was instrumental in both reinforcing community ties and increasing our understanding of fathers' needs, resulting in improvements to program values, delivery strategies, personnel, and content. This study provides a practical approach for investigators looking to involve key stakeholders in the pre-implementation phase of intervention development.Trial registrationClinicalTrials.gov, NCT04477577 . Registered 20 July 2020.
| S-EPMC9145160 | biostudies-literature
Project description:This paper examines some of the science communication challenges involved when designing and conducting public deliberation processes on issues of national importance. We take as our illustrative case study a recent research project investigating public values and attitudes toward future energy system change for the United Kingdom. National-level issues such as this are often particularly difficult to engage the public with because of their inherent complexity, derived from multiple interconnected elements and policy frames, extended scales of analysis, and different manifestations of uncertainty. With reference to the energy system project, we discuss ways of meeting a series of science communication challenges arising when engaging the public with national topics, including the need to articulate systems thinking and problem scale, to provide balanced information and policy framings in ways that open up spaces for reflection and deliberation, and the need for varied methods of facilitation and data synthesis that permit access to participants' broader values. Although resource intensive, national-level deliberation is possible and can produce useful insights both for participants and for science policy.
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Project description:Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.
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Project description:There is a need for clear strategies and procedures to operationalize stakeholder engagement in research studies. Clear guidelines that promote shared leadership among study investigators and research stakeholders are important for inclusive and sustainable partnerships. Such guidelines may take the form of a governance charter and can be a means for encouraging the participation and inclusion of stakeholders who may have little to no experience with research or are otherwise underrepresented in research. This perspective article presents the Stakeholder-Centric Engagement Charter (SCEC), one effort to operationalize a stakeholder engagement approach between researchers and an advisory committee as guided by the Patient-Centered Outcomes Research Institute's (PCORI) Research Engagement Principles (i.e., reciprocal relationships, partnerships, co-learning, transparency-honesty-trust). Building on the SCEC can help future investigators develop a study-specific, dynamic, governance document outlining advisory committee and research team preferences in areas such as role expectations, study governance, and decision-making procedures.
| S-EPMC8994015 | biostudies-literature
Project description:Psychiatric disorders are the number one cause of disability in adolescents worldwide. Yet, in low- and middle-income countries (LMIC), where 90% of adolescents reside, mental health services are extremely limited, and the majority do not have access to treatment. Integration of mental health services within primary care of LMICs has been proposed as an efficient and sustainable way to close the adolescent mental health treatment gap. However, there is limited research on how to effectively implement integrated mental health care in LMIC. In the present study, we employed Implementation Mapping to develop a multilevel strategy for integrating adolescent depression services within primary care clinics of Maputo, Mozambique. Both in-person and virtual approaches for Implementation Mapping activities were used to support an international implementation planning partnership and promote the engagement of multilevel stakeholders. We identified determinants to implementation of mental health services for adolescents in LMIC across all levels of the Consolidated Framework for Implementation Research, of which of 25% were unique to adolescent-specific services. Through a series of stakeholder workshops focused on implementation strategy selection, prioritization, and specification, we then developed an implementation plan comprising 33 unique strategies that target determinants at the intervention, patient, provider, policy, and community levels. The implementation plan developed in this study will be evaluated for delivering adolescent depression services in Mozambican primary care and may serve as a model for other low-resource settings.
| S-EPMC9178075 | biostudies-literature
Project description:IntroductionGiven increasing efforts to regulate e-cigarettes, it is important to understand factors associated with support for tobacco regulatory policies. We investigate such factors found in social media and hypothesize that greater online engagement with tobacco content would be associated with less support for e-cigarette regulatory policies.MethodsWe constructed social networks of Twitter users who tweet about tobacco and categorized them using a combination of social network and Twitter metrics. Twitter users were identified as representing leaders, followers or general users in online discussions of tobacco products, and invited to complete an online survey. Participants responded to questions about their engagement with tobacco-related content online, degree of support for e-cigarette regulations, exposure to tobacco marketing, e-cigarette use and other demographic information. We examined links between their reported engagement with tobacco-related content and support for e-cigarette regulatory policies using structural equation modelling.ResultsThe analytic sample consisted of 470 participants. The conceptualized structural equation model had a good fit (χ2 (32) = 24.85, p = 0.09, CFI = 0.99, RMSEA = 0.03). Findings support our hypothesis: engagement with online tobacco content was negatively associated with support for e-cigarette policies, while controlling for e-cigarette use, tobacco marketing exposure, social media use frequency and demographic factors.ConclusionsFindings suggest that our hypothesis was supported. Twitter users engaging with tobacco-related content and harboring negative attitudes toward e-cigarette regulatory policies could be an important audience segment to reach with tailored e-cigarette policy education messages.
| S-EPMC6542731 | biostudies-literature
Project description:Translational approaches to science have the potential to produce research that better meets the needs of community stakeholders and advances scientific understanding. Researchers involved in translational research make committed efforts to increased engagement and communication with stakeholders throughout the research process, from planning through implementation and evaluation. Referred to as solutions-driven research within the U.S. Environmental Protection Agency (EPA) Office of Research Development, this approach is being piloted on Cape Cod (Barnstable County), Massachusetts. EPA researchers are working in close coordination with community partners on the Cape to better understand and address challenges with managing nonpoint source nitrogen. The pilot also aims to assess the usefulness of solutions-driven research approaches for application in future EPA research efforts. Using semi-structured interviews with researchers and other stakeholders, we examined researchers' and stakeholders' perspectives on the impacts of intentional and intensive stakeholder engagement on research efforts to improve coastal water quality. This study provides a reflexive assessment of the perceived benefits and drawbacks for researchers and other stakeholders when there is an institutional expectation of an increased focus on engagement. We found that engagement has been truly intertwined with research in the pilot, participants perceived an improvement in research usefulness through developing valuable collaborative relationships, and that these relationships required significant time commitments to maintain. We also identified a need for an efficient infrastructure for developing and distributing communication materials for continued engagement with diverse stakeholders throughout the research process. The paper provides transferable practices for researchers seeking to use a solutions-driven research approach based on lessons learned thus far in how to support researchers and research planning in simultaneously prioritizing effective engagement and sound collaborative environmental science research to address a localized environmental challenge. This is an innovative approach in that interviews occurred as the implementation phase of the project began, with the goal of implementing the lessons learned outlined here in the ongoing project.Supplementary informationThe online version contains supplementary material available at 10.1007/s42532-022-00119-5.
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Project description:ObjectivePreventing childhood obesity requires innovative, evidence-based policy approaches. This study examines the use of research evidence by obesity policy stakeholders in Minnesota and develops pilot tools for communicating timely evidence to policymakers.Design, setting, and participantsFrom November 2012 to January 2013, semistructured interviews were conducted with 51 Minnesota stakeholders in childhood obesity prevention. Interviewees included 16 state legislators and staff; 16 personnel from the Minnesota Department of Education, Minnesota Department of Health, and Minnesota Department of Transportation; and 19 advocates for and against childhood obesity prevention legislation (response rate = 71%).Main outcome measuresParticipants were asked their views on 3 themes: (1) Whether and how they used research evidence in their current decision-making processes; (2) barriers to using research evidence for policymaking; and (3) suggestions for improving the evidence translation process. All interviews were audio-recorded and transcribed. A team approach to qualitative analysis was used to summarize themes, compare findings across interviewees' professional roles, and highlight unexpected findings, areas of tension, or illuminating quotes.ResultsStakeholders used research evidence to support policy decisions, educate the public, and overcome value-based arguments. Common challenges included the amount and complexity of research produced and limited relationships between researchers and decision makers. Responding to interviewee recommendations, we developed and assessed 2 pilot tools: a directory of research experts and a series of research webinars on topics related to childhood obesity. Stakeholders found these materials relevant and high-quality but expressed uncertainty about using them in making policy decisions.ConclusionsStakeholders believe that research evidence should inform the design of programs and policies for childhood obesity prevention; however, many lack the time and resources to consult research consistently. Future efforts to facilitate evidence-informed policymaking should emphasize approaches to designing and presenting research that better meets the needs of policy and programmatic decision makers.
| S-EPMC5821602 | biostudies-literature
Project description:Most clinical trials exclude pregnant women in order to avoid the possibility of adverse embryonic and/or fetal effects. Currently, there are no evidence-based guidelines regarding appropriate methods for identifying early pregnancy among research subjects. This lack of guidance results in wide variation in pregnancy testing plans, leading to the potential for inadequate protection against embryonic or fetal exposure in some cases and unnecessary burdens on research participants in others, as well as inefficiencies caused by disagreements among sponsors, investigators, and regulators. To address this issue, the Clinical Trials Transformation Initiative convened content experts and stakeholders to develop recommendations for pregnancy testing in clinical research based on currently available evidence. Recommendations included: 1) the study protocol should clearly state the rationale for pregnancy testing and the plan for handling positive and indeterminate tests; 2) protocols should include an assessment of the pregnancy testing plan advantages (reduced risk of embryo/fetal exposure) versus the burdens (participant burden, study team workload, costs); 3) protocols should assess the participant burdens regarding the likelihood of false negative and false positive results; 4) participant administered home pregnancy testing should be avoided in clinical trials; and 5) the consent process should describe the extent of knowledge about the study intervention's potential risk to the embryo/fetus and the limitations and consequences of pregnancy testing. CTTI has also developed an online tool to help implement these recommendations.
| S-EPMC6135366 | biostudies-literature