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Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada.

ABSTRACT: BACKGROUND:In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). METHODS:Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. RESULTS:Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9-10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants' reasoning about whether LDTs would change their own clinical practice (3-10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. CONCLUSION:The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research.

SUBMITTER: Rahimzadeh V

PROVIDER: S-EPMC8672505 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundEffective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis.ObjectiveWe solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations.MethodsEight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations - a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT.ResultsExplaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.ConclusionsDeliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

Project description:Purpose:Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication. Methods:Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey. Results:Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families. Conclusion:The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.

Project description:BackgroundSelecting effective implementation strategies to support guideline-concordant dental care is a complex process. We are drawing on data collected during the DISGO study to reflect on barriers we encountered in implementing a deliberative engagement process for discussing implementation strategies relevant to the evidence-based guideline targeted in this intervention. The goal is to identify factors that may influence the success of deliberative engagement as a technique to involve healthcare staff in identifying priorities for implementation strategies.MethodsWe drew on online chat transcripts from the deliberative engagement forums collected during the DISGO study. The chat transcripts were automatically generated for each discussion and captured the written exchanges between participants and moderators in all participating dental clinics. Chat transcripts were analyzed following a content analysis approach.ResultsOur findings revealed barriers to the successful implementation of deliberative engagement in the context of the DISGO study. Participants were not familiar with the materials that had been prepared for the forum and lacked familiarity with the topic of deliberation. Participants also did not share divergent viewpoints and reinforced existing ideas rather than introducing new ideas.ConclusionsIn order to ensure that obstacles that were encountered in this study are not repeated, it is important to carefully consider how staff can effectively be prepared for the deliberations. Participants must be familiar with the content of the guideline, and most questions about the content and evidence should be answered before the deliberative engagement sessions. If perspectives among staff on a guideline are homogenous, briefing materials should introduce perspectives that complement existing views among staff. It is also necessary to create an environment in which staff are comfortable introducing opinions that may not be held by the majority of colleagues.Trial registrationThis project is registered at ClinicalTrials.gov with ID NCT04682730. The trial was first registered on 12/18/2020. https://clinicaltrials.gov/ct2/show/NCT04682730 .

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Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada.

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