Views on deceased organ donation in the Netherlands: A q-methodology study.
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ABSTRACT:
SUBMITTER: Truijens D
PROVIDER: S-EPMC6534345 | biostudies-literature | 2019
REPOSITORIES: biostudies-literature
Publications
Views on deceased organ donation in the Netherlands: A q-methodology study.
Truijens Daphne D van Exel Job J
PloS one 20190524 5
In many countries, such as the US, Germany, France, and the Netherlands, governments are dealing with a great shortage of organ donors. Even though people generally show positive attitudes towards organ donation, they often do not actually register as organ donors themselves. This study's objective was to explore prevailing viewpoints among the Dutch population on deceased organ donation and the relation between aspects of the viewpoints potentially influencing the decision to register as an org ...[more]
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Project description:BackgroundThe deceased organ donation programme is new in the United Arab Emirates (UAE), and to improve acceptability, a broad understanding of public perspectives is thought to be helpful. Therefore, this study aims to explore the extent to which context plays a role in the willingness to register for the deceased organ donation programme in Dubai, UAE.MethodsThis study used a qualitative methodology and was gauged by the tenets of a social ecological model and lay knowledge. Audio-recorded semi-structured interviews were conducted with 17 participants. The data were subsequently analysed thematically.ResultsFour themes emerged from the dataset: fear and body integrity, family, relational ties and the identification of the recipient, religious conviction, and knowledge and personal experiences. The participants feared the whole process, were not aware of the religious outlook, and their knowledge regarding the programme was scarce. In addition, family-related factors, such as parental authority and hierarchy in the family, were also major influencers.ConclusionUsing the social ecological model and lay knowledge helped to unravel the contextual factors that affected the willingness of participants to register for the deceased organ donation programme in Dubai, UAE, thereby enabling the development of a holistic understanding of deceased organ donation. The responses mainly stemmed from participants' social contexts; hence, awareness campaigns should be tailored to inform people about the technical aspects and address their contextual concerns.
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Project description:For various reasons, people of Chinese (China, Hong Kong or Taiwan) and South Asian (Indian subcontinent) ancestry (the two largest ethnic minority groups in Ontario, Canada) may be less likely to register for deceased organ donation than the general public, and their families may be less likely to consent for deceased organ donation at the time of death.We conducted two population-based studies: (1) a cross-sectional study of deceased organ donor registration as of May 2013, and (2) a cohort study of the steps in proceeding with deceased organ donation for patients who died in hospital from October 2008 to December 2012.A total of 49 938 of 559 714 Chinese individuals (8.9%) and 47 774 of 374 291 South Asians (12.8%) were registered for deceased organ donation, proportions lower than the general public (2 676 260 of 10 548 249 (25.4%). Among the 168 703 Ontarians who died in a hospital, the families of 33 of 81 Chinese (40.1%; 95% CI: 30.7%-51.6%) and 39 of 72 South Asian individuals (54.2%; 95% CI: 42.7-65.2%) consented for deceased organ donation, proportions lower than the general public (68.3%; 95% CI: 66.4%-70.0%).In Ontario, Canada Chinese and South Asian individuals are less likely to register and their families are less likely to consent to deceased organ donation compared to the remaining general public. There is an opportunity to build support for organ and tissue donation in these two large ethnic communities in Canada.
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Project description:IntroductionIn 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 analysisSDMs 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 disseminationThis 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 numberNCT03850847.
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