Dataset Information

Making a Difference: Planning for Engaged Participation in Environmental Research.

ABSTRACT: Despite the rapid and accelerating rate of global environmental changes, too often research that has the potential to inform more sustainable futures remains disconnected from the context in which it could be used. Though transdisciplinary approaches (TDA) are known to overcome this disconnect, institutional barriers frequently prevent their deployment. Here we use insights from a qualitative comparative analysis of five case studies to develop a process for helping researchers and funders conceptualize and implement socially engaged research within existing institutional structures. The process we propose is meant to help researchers achieve societal as well as scientific outcomes relatively early in a project, as an end in itself or en route to greater engagement later. If projects that have a strong foundation of dialog and shared power wish to use TDA within current institutional and academic structures, we suggest that they focus on three process-based factors to increase their chances for success: (1) the maturity of relationships within a collaboration, (2) the level of context knowledge present within the collaborative team, and (3) the intensity of the engagement efforts within the project.

SUBMITTER: Ferguson DB

PROVIDER: S-EPMC8789721 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature

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Making a Difference: Planning for Engaged Participation in Environmental Research.

Ferguson Daniel B DB Meadow Alison M AM Huntington Henry P HP

Environmental management 20220109 2

Despite the rapid and accelerating rate of global environmental changes, too often research that has the potential to inform more sustainable futures remains disconnected from the context in which it could be used. Though transdisciplinary approaches (TDA) are known to overcome this disconnect, institutional barriers frequently prevent their deployment. Here we use insights from a qualitative comparative analysis of five case studies to develop a process for helping researchers and funders conce ...[more]

PMID: 34999911

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Project description:BackgroundAnticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that 'proxy' decisions about research are based on their wishes and preferences.MethodsA cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis.ResultsA total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person's general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals' preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken.ConclusionsThere were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders.

Project description:BackgroundThere is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (≥50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes.Methodology/principal findings503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones.Conclusions/significanceMost people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.

Project description:IntroductionThe participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.MethodsWe used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.ResultsThe GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.ConclusionsThe key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.

Dataset Information

Making a Difference: Planning for Engaged Participation in Environmental Research.

Publications

Making a Difference: Planning for Engaged Participation in Environmental Research.

Similar Datasets

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