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Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol.

ABSTRACT: INTRODUCTION:In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of life-sustaining therapies, end-of-life care and deceased organ donation. METHODS AND ANALYSIS:SDMs of 60 patients admitted to intensive care units will be enrolled for this study. Ten hospitals across five provinces in Canada in a prospective multicentre qualitative cohort study. We will conduct semistructured telephone interviews in English or French with SDMs between 6 and 8 weeks after the patient's death. Our sampling frame will stratify SDMs into three groups: SDMs who were not approached for organ donation; SDMs who were approached and consented to donate and SDMs who were approached but did not consent to donate. We will use two complementary theoretical frameworks-the Common-Sense Self-Regulation Model and the Theoretical Domains Framework- to inform our interview guide. Interview data will be analysed using deductive directed content analysis and inductive thematic analysis. ETHICS AND DISSEMINATION:This study has been approved by the Centre Hospitalier de l'Université de Montréal Research Ethics Board. The findings from this study will help identify key factors affecting substitute decision-making in deceased organ donation, reasons for non-consent and barriers to achieve congruency between SDM and patient wishes. Ultimately, these data will contribute to the development and evaluation of tools and training for healthcare providers to support SDMs in making decisions about organ donation. TRIAL REGISTRATION NUMBER:NCT03850847.

SUBMITTER: Crawshaw J

PROVIDER: S-EPMC7008441 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol.

Crawshaw Jacob J Presseau Justin J van Allen Zack Z Pinheiro Carvalho Livia L Jordison Kim K English Shane S Fergusson Dean A DA Lauzier Francois F Turgeon Alexis F AF Sarti Aimee J AJ Martin Claudio C D'Aragon Frédérick F Li Alvin Ho-Ting AH Knoll Greg G Ball Ian I Brehaut Jamie J Burns Karen E A KEA Fortin Marie-Chantal MC Weiss Matthew M Meade Maureen M Marsolais Pierre P Shemie Sam S Zaabat Sanabelle S Dhanani Sonny S Kitto Simon C SC Chassé Michaël M

BMJ open 20191223 12

<h4>Introduction</h4>In Canada, deceased organ donation provides over 80% of transplanted organs. At the time of death, families, friends or others assume responsibility as substitute decision-makers (SDMs) to consent to organ donation. Despite their central role in this process, little is known about what barriers, enablers and beliefs influence decision-making among SDMs. This study aims to explore the experiences and perspectives of SDMs involved in making decisions around the withdrawal of l ...[more]

PMID: 31874899

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Project description:INTRODUCTION:Prospective informed consent is required for most research involving human participants; however, this is impracticable under some circumstances. The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) outlines the requirements for research involving human participants in Canada. The need for an exception to consent (deferred consent) is recognised and endorsed in the TCPS for research in individual medical emergencies; however, little is known about substitute decision-maker (SDM) experiences. A paediatric resuscitation trial (SQUEEZE) (NCT01973907) using an exception to consent process began enrolling at McMaster Children's Hospital in January 2014. This qualitative research study aims to generate new knowledge on SDM experiences with the exception to consent process as implemented in a randomised controlled trial. METHODS AND ANALYSIS:The SDMs of children enrolled into the SQUEEZE pilot trial will be the sampling frame from which ethics study participants will be derived. DESIGN:Qualitative research study involving individual interviews and grounded theory methodology. PARTICIPANTS:SDMs for children enrolled into the SQUEEZE pilot trial. SAMPLE SIZE:Up to 25 SDMs. Qualitative methodology: SDMs will be invited to participate in the qualitative ethics study. Interviews with consenting SDMs will be conducted in person or by telephone, taped and professionally transcribed. Participants will be encouraged to elaborate on their experience of being asked to consent after the fact and how this process occurred. ANALYSIS:Data gathering and analysis will be undertaken simultaneously. The investigators will collaborate in developing the coding scheme, and data will be coded using NVivo. Emerging themes will be identified. ETHICS AND DISSEMINATION:This research represents a rare opportunity to interview parents/guardians of critically ill children enrolled into a resuscitation trial without their knowledge or prior consent. Findings will inform implementation of the exception to consent process in the planned definitive SQUEEZE trial and support development of evidence-based ethics guidelines.

Project description:BackgroundThe organ donation in China has developed rapidly since fully launched donations after citizens death in 2015. This study was conducted to evaluate how the Chinese general public views changed on deceased organ donation, and to improve the donation process.MethodsA total of 110 eligible studies, including 103, 410 individuals, were selected to analyze through searching PubMed, CBMdisc, CQVIP, CNKI, and Wanfang Data from Jan 1, 1990 to May 31, 2019. The pooled proportions (and 95% CIs) of cognition, attitudes and willingness related to organ donation were calculated using the Freeman-Tukey double arcsine transformation.ResultsThe pooled proportions of knowing about organ donation and willing to donate increased from 84.6% (73.0-93.4) and 32.4% (23.9-41.6) before 2015, to 86.4% (74.5-95.1) and 39.9% (32.8-47.2) after 2015, respectively. The willingness to posthumous organ donation for cornea, heart, kidney, and liver had a significant improvement. Especially, the proportion of willingness to donate cornea increased to 56.0% (43.3-68.3) after 2015, from 39.2% (31.2-47.4) before 2015. However, although 69.7% (62.7-76.4) of participants approved the deceased organ donation, only 35.6% (29.7-41.8) and 43.9% (37.2-50.8) were willing to donate their own and relatives organs postmortem, respectively. The leading reasons for refraining from donating organs postmortem were distrusting the medical professionals (49.8%, 35.2-64.4) and traditional Chinese values (40.6%, 32.4-49.0). Popularizing knowledge about organ donation (61.5%, 45.7-76.1), humanitarian aid (57.1%, 48.8-65.3), and priority of using donated organs for relatives (53.1%, 30.8-74.7) were the applauded strategies to improve the willingness to posthumous organ donation.ConclusionsThe willingness toward posthumous organ donation has a significant improvement among Chinese general public since 2015, however, several important measures still need to be taken to promote the favorable attitudes and willingness toward organ donation.

Project description:BackgroundThis study aimed to investigate differences in knowledge, and attitudes toward deceased organ and tissue donation of emergency physicians. Additionally, we analyzed factors affecting the attitudes toward deceased organ and tissue donation.MethodsWe conducted a survey of specialists and residents registered with the Korean Society of Emergency Medicine in December 2020. The respondents' sex, age, position, personal registration for organ donation, experience of soliciting organ donation, participation in related education, knowledge, and attitude about brain death organ donation, and attitude toward stopping life-sustaining treatments were investigated. According to the characteristics of the respondents (specialists or residents, experience and education on organ and tissue donation), their knowledge and attitude toward deceased organ donation were compared. Stepwise hierarchical multiple regression analysis was used to investigate the factors affecting the attitudes toward deceased organ and tissue donation.ResultsOf the total 428 respondents, there were 292 emergency medicine specialists and 136 medical residents. Specialists and those who registered or wished to donate organs had higher knowledge and attitude scores regarding deceased organ and tissue donation. Those who had experience recommending organ and tissue donation more than 6 times had higher knowledge scores on deceased organ and tissue donation and higher overall scores in attitude. Those who received education from the Korean Organ Donation Agency had higher knowledge scores. Specialists, and those who wished to donate or had registered as organ donors and had a higher life-sustaining treatment attitude score and knowledge about deceased organ and tissue donation, had more positive attitudes toward deceased organ and tissue donation.ConclusionFor more potential deceased organ and tissue donors to be referred for donation, there should be continuous education for emergency physicians on brain-dead organ and tissue donation-related knowledge and procedures. In addition, institutional or systematic improvements that can lead to organ donation when deciding on the withdrawal of life-sustaining treatment should be considered.

Dataset Information

Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol.

Publications

Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol.

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