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

BMC Palliative Care

Justin Gagnon¹  Gillian Bartlett²  Conrad Fernandez³  Cristina Longo⁴  Vasiliki Rahimzadeh⁵ 

[1] Department of Family Medicine, McGill University, Montréal, QC, Canada;Department of Family Medicine, McGill University, Montréal, QC, Canada;Department of Family and Community Medicine, University of Missouri School of Medicine, Columbia, MO, USA;Departments of Pediatrics and Bioethics Head, Division of Pediatric Hematology/Oncology Dalhousie University and IWK Health Centre, Halifax, NS, Canada;Faculty of Pharmacy, Université de Montréal, Montréal, QC, Canada;Stanford Center for Biomedical Ethics, 300 Pasteur Drive, 94305, Stanford, CA, USA;

关键词: deliberative democracy;    quality assessment;    stakeholder consultation;    pediatric oncology;    palliative care;   

DOI  :  10.1186/s12904-021-00884-2

来源: Springer

【 摘 要 】

BackgroundIn 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).MethodsUsing 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.ResultsDeliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9–10 out of 10) and the opportunities toreceive 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.ConclusionThe quality assessment we performeddemonstrateshigh informational value and perceived fairness of two deliberative stakeholder consultations involvingpediatric 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.

【 授权许可】

CC BY