A novel approach to studying co-evolution of understanding and research: Family bereavement and the potential for organ donation as a case study.
Ontology highlight
ABSTRACT:
SUBMITTER: Dicks SG
PROVIDER: S-EPMC5788101 | biostudies-literature | 2018 Jan-Jun
REPOSITORIES: biostudies-literature
Publications
A novel approach to studying co-evolution of understanding and research: Family bereavement and the potential for organ donation as a case study.
Dicks Sean G SG Ranse Kristen K Northam Holly H van Haren Frank Mp FM Boer Douglas P DP
Health psychology open 20180124 1
A novel approach to data extraction and synthesis was used to explore the connections between research priorities, understanding and practice improvement associated with family bereavement in the context of the potential for organ donation. Conducting the review as a qualitative longitudinal study highlighted changes over time, and extraction of citation-related data facilitated an analysis of the interaction in this field. It was found that lack of 'communication' between researchers contribute ...[more]
Similar Datasets
Project description:BackgroundCo-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation.ObjectiveTo address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges.DesignTwo-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies.Setting and participantsNHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team.ResultsCo-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area.Discussion and conclusionAlthough expensive and time consuming, co-production was effective and added value to research processes and study outcomes.
| S-EPMC6737840 | biostudies-literature
Project description:Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.
| S-EPMC6980458 | biostudies-literature
Project description:The donation of organs and tissues from neonates (birth to 28 days) for transplantation has been a relatively infrequent occurrence. Less common has been the use of neonatal organs and tissues for research. Specific ethical and legal questions beg for rational and transparent guidelines with which to evaluate referrals of potential donors. Donation of organs and tissues from a neonate can play a key role in the care and support provided to families by health care professionals around the time of a neonate's death. We report on the recovery of neonatal organs and tissues for research. A working group made up of bioethicists, neonatologists, lawyers, obstetric practioners as well as organ procurement and tissue banking professionals evaluated legal, ethical and medical issues. Neonatal donor family members were also consulted. Our primary goals were (a) to ensure that referrals were made in compliance with all applicable federal and state laws, regulations and institutional protocols, and (b) to follow acceptable ethical standards. Algorithms and policies designed to assist in the evaluation of potential neonatal donors were developed. Neonatal donation is proving increasingly valuable for research into areas including diabetes, pulmonary, gastrointestinal, genitourinary and neurological development, rheumatoid arthritis, autism, childhood psychiatric and neurologic disorders, treatment of MRSA infection and pediatric emergency resuscitation. The development of policies and procedures will assist medical professionals who wish to offer the option of donation to family members anticipating the death of a neonate.
| S-EPMC7223177 | biostudies-literature
Project description:BACKGROUND:Because organ transplantation relies on public support for donation, an analysis of public discourse around organ donation is essential. We investigated the portrayal of family veto - when a family overrides the deceased person's prior legally executed wishes to donate - in Canadian news media. METHODS:Using the Canadian Newsstream database, we identified articles published in English-language newspapers addressing family veto between 2000 and 2016. Guided by the theoretical perspectives of framing of media effects, we conducted a systematic content analysis of the articles to examine how the Canadian media framed family veto. An initial in-depth analysis of the data set in which themes and patterns were captured and recorded identified coding categories, including primary framing of family veto, prevalence, reasons, ethical or legal concerns and overall tone of the article. Two coders analyzed the data set to ensure intercoder reliability. RESULTS:A total of 133 relevant articles were identified. Family veto was framed predominantly as something that should not be allowed (81 articles [60.9%]) and as a reality that is little understood outside the transplantation community (45 [33.8%]). One-quarter of the articles (32 [24.1%]) highlighted ethical principles of autonomy and justice associated with family veto. Family veto was represented as a stumbling block in the present organ donation system, with most publications (107 [80.4%]) calling for change. There were differing interpretations of organ donation legislation, with 82 articles (61.6%) erroneously stating or suggesting that existing legislation permits family veto. INTERPRETATION:Family veto in organ donation was portrayed predominantly negatively. Many publications reflected a misunderstanding of the law concerning this issue. Although the framing of family veto highlighted important ethical and legal concerns as well as practice and policy considerations, research is needed to enhance the understanding of family veto in organ donation.
| S-EPMC5741414 | biostudies-literature
Project description:INTRODUCTION:It is unclear how much information should be provided to families of potential organ donors about the benefits of organ donation. Whilst this information is material to the donation decision, it may also be perceived as coercive. METHODS:Randomised, double blind, controlled trial in which community members watched one of two videos of a simulated organ donation conversation that differed only in the amount of information provided about the benefits of donation. Participants then completed a questionnaire about the adequacy of the information provided and the degree to which they felt the doctor was trying to convince the family member to say yes to donation. RESULTS:There was a wide variability in what participants considered was the "right" amount of information about organ donation. Those who watched the conversation that included information about the benefits of donation were more likely to feel that the information provided to the family was sufficient. They were more likely to report that the doctor was trying to convince the family member to say yes to donation, yet were no more likely to feel uncomfortable or to feel that the doctor was uncaring or cared more about transplant recipients than he did for the patient and their family. CONCLUSIONS:This study suggests that community members are comfortable with health care staff providing information to family members that may be influential in supporting them to give consent for donation.
| S-EPMC4913899 | biostudies-literature
Project description:An interdisciplinary research perspective is developed concerning the question of how we understand others' emotions and how reliable our judgment about others' emotion can be. After an outline of the theoretical background of emotions, we briefly discuss the importance of prior experiences and context information for the recognition of emotions. To clarify this role, we describe a study design, utilizing emotional expressions and context information while controlling for prior experiences and the actual emotional situation to systematically approach these questions.
| S-EPMC6135884 | biostudies-other
Project description:Background: An emerging strategy to increase deceased organ donation is to use dedicated donation physicians to champion organ donation. We sought to conduct a systematic review of the effectiveness of donation physicians in improving organ donation outcomes. Objective: A systematic review was conducted following Cochrane principles. MEDLINE, Embase, and CINHAL databases were searched from inception to March 26, 2020. Methods: Quantitative studies examining the effects of donation physicians on all deceased organ donation outcomes were considered for inclusion. Review articles, editorials and opinion articles, and case studies were excluded. Study selection was completed independently by 2 team members; all discrepancies were resolved by consensus. Two team members independently extracted data from studies. Results: A total of 1017 studies were screened, and 12 met inclusion criteria. Included studies were published between 1994 and 2019. Half used an interrupted time series design (n = 6; 50%), 3 (25%) were cohort studies, and 3 (25%) used a before-and-after study design. Outcomes (reported in greater than 50% of included articles) included consent/refusal rate (n = 8; 67%), number of potential donors (n = 7; 58%), and number of actual donors (n = 7; 58%). Across studies and design types, there was an increase in potential organ donors ranging from 8% to 143% (Mdn = 33%), an increase in actual organ donors from 15% to 113% (Mdn = 27%), an increase in donor consent rate from −3% to 258% (Mdn = 12%), and an increase in deceased donor transplants from 13% to 24% (Mdn = 19%) following the introduction of donation physicians. Conclusions: Donation physicians have the potential to significantly improve deceased organ donation. Further implementation and evaluation of donation physician programs is warranted. However, implementation should be undertaken with a clear plan for a methodologically rigorous evaluation of outcomes.
| S-EPMC9218440 | biostudies-literature
Project description:Gene blocks are genes co-located on the chromosome. In many cases, gene blocks are conserved between bacterial species, sometimes as operons, when genes are co-transcribed. The conservation is rarely absolute: gene loss, gain, duplication, block splitting and block fusion are frequently observed. An open question in bacterial molecular evolution is that of the formation and breakup of gene blocks, for which several models have been proposed. These models, however, are not generally applicable to all types of gene blocks, and consequently cannot be used to broadly compare and study gene block evolution. To address this problem, we introduce an event-based method for tracking gene block evolution in bacteria.We show here that the evolution of gene blocks in proteobacteria can be described by a small set of events. Those include the insertion of genes into, or the splitting of genes out of a gene block, gene loss, and gene duplication. We show how the event-based method of gene block evolution allows us to determine the evolutionary rateand may be used to trace the ancestral states of their formation. We conclude that the event-based method can be used to help us understand the formation of these important bacterial genomic structures.The software is available under GPLv3 license on http://github.com/reamdc1/gene_block_evolution.git. Supplementary online material: http://iddo-friedberg.net/operon-evolution
| S-EPMC4481853 | biostudies-other
Project description:BackgroundRequirements for organ donation after cardiac or imminent death have been introduced to address the transplantable organs shortage in the United States. Organ procurement organizations (OPOs) increasingly use the Internet for organ donation consent.MethodsAn analysis of OPO Web sites available to the public for enrollment and consent for organ donation. The Web sites and consent forms were examined for the minimal information recommended by the United States Department of Health and Human Services for informed consent. Content scores were calculated as percentages of data elements in four information categories: donor knowledge, donor consent reinforcement, donation promotion, and informed consent.ResultsThere were 60 Web sites for organ donation enrollment serving the 52 states. The median percent (10 percentile-90 percentile) content scores of the Web sites for donor knowledge, donor consent reinforcement, and donation promotion were 33% (20-47), 79% (57-86), and 75% (50-100), respectively. The informed consent score was 0% (0-33). The content scores for donor knowledge and informed consent were significantly lower than donor consent reinforcement and donation promotion for all Web sites (P < .05). The content scores for the four categories were similar among the 11 regions of the United Network for Organ Sharing.ConclusionThe Web sites and consent forms for public enrollment in organ donation do not fulfill the necessary requirements for informed consent. The Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of organ donation process. Independent regulatory oversight is essential to ensure that Internet enrollment for organ donation complies with legal and ethical standards for informed consent.
| S-EPMC1764895 | biostudies-literature
Project description:ImportanceOrgan transplant is a life-saving procedure for patients with end-stage organ failure. In the US, organ procurement organizations (OPOs) are responsible for the evaluation and procurement of organs from donors who have died; however, there is controversy regarding what measures should be used to evaluate their performance.ObjectiveTo evaluate OPO performance metrics using combined mortality and donation data and quantify the associations of population demographics with donation metrics.Design, setting, and participantsThis national cohort study includes data from the US organ transplantation system from January 2008 through December 2017. All individuals who died within the US, as reported by the National Death index, were included.ExposuresDeath, organ donation, and donation eligibility.Main outcomes and measuresEvaluation of the variation in donation metrics and the use of ineligible donors by OPO and demographic subgroup.ResultsThis study included 17 501 742 deaths and 75 769 deceased organ donors (45 040 men [59.4%]; 51 908 White individuals [68.5%]). Of these donors, 15 857 (20.9%) were not eligible, as defined by the OPOs. The median donation metrics by OPO were 0.004 (range, 0.002-0.012) donors per death, 0.89 (range, 0.68-1.30) donors per eligible death, and 0.72 (range, 0.57-0.86) eligible donors per eligible death. The OPOs in the upper quartile of the overall eligible donors per eligible death metric were in the upper quartile of annual rankings on 90 of 140 occasions (64.3%). There was little overlap in top-performing OPOs between metrics; an OPO in the upper quartile for 1 metric was also in the upper quartile for the other metrics on 37 of 570 occasions (6.5% of the time). The median donor eligibility rate, defined as the number of eligible donors per donor, was 0.79 (range, 0.61-0.95) across OPOs. Age (eg, 65 to 84 years, coefficient, -0.55 [SE, 0.03]; P < .001; vs those aged 18 to 34 years), sex (male individuals, -0.09 [SE, 0.02]; P < .001; vs female individuals), race (eg, Black individuals, 0.35 [SE, 0.02]; P < .001; vs White individuals), cause of death (eg, central nervous system tumor, 0.48 [SE, 0.08]; P < .001; vs anoxia), year (eg, 2016-2017: -0.10 [SE, 0.03]; P < .001; vs 2008-2009), and OPO were associated with the use of ineligible donors; OPO was a significant factor associated with performance in all metrics (χ256, 500.5; P < .001; coefficient range across individual OPOs, -0.15 [SE, 0.09] to 0.75 [SE, 0.09]), even after accounting for population differences. Female and non-White individuals were significantly less likely to be used as ineligible donors.Conclusions and relevanceWe demonstrate significant variability in OPO performance rankings, depending on which donation metric is used. There were significant differences in OPO performance, even after accounting for differences in potential donor populations. Our data suggest significant variation in use of ineligible donors among OPOs, a source for increased donors. The performance of OPOs should be evaluated using a range of donation metrics.
| S-EPMC7711570 | biostudies-literature