BackgroundConsenting for retrospective medical records-based research (MR) and leftover tissue-based research (TR) continues to be controversial. Our objective was to survey Saudis attending outpatient clinics at a tertiary care hospital on their personal preference and perceptions of norm and current practice in relation to consenting for MR and TR.MethodsWe surveyed 528 Saudis attending clinics at a tertiary care hospital in Saudi Arabia to explore their preferences and perceptions of norm and current practice. The respondents selected one of 7 options from (...) each of 6 questionnaires.ResultsRespondents' mean (SD) age was 33 (11) years, 42% were males, 56% were patients, 84% had ≥ secondary school education, and 10% had previously volunteered for research. Respectively, 40% and 49% perceived that the norm is to conduct MR and TR without consent and 38% and 37% with general or proposal-specific consent; the rest objected to such research. There was significant difference in the distribution of choices according to health status (patients vs. companions) for MR (adjusted Kruskal-Wallis test P = 0.03) but not to age group, gender, education level, or previous participation in research (unadjusted P = 0.02 - 0.59). The distributions of perceptions of current practice and norm were similar (unadjusted Marginal Homogeneity test P = 0.44 for MR and P = 0.89 for TR), whereas the distributions of preferences and perceptions of norm were different (adjusted P = 0.09 for MR and P = 0.02 for TR). The distributions of perceptions of norm, preferences, and perceptions of current practice for MR were significantly different from those of TR (adjusted P < 0.009 for all).ConclusionsWe conclude that: 1) there is a considerable diversity among Saudi views regarding consenting for retrospective research which may be related to health status, 2) the distribution of perceptions of norm was similar to the distribution of perceptions of current practice but different from that of preferences, and 3) MR and TR are perceived differently in regard to consenting. (shrink)
Background The consistency of codes governing disclosure of terminal illness to patients and families in Islamic countries has not been studied until now. Objectives To review available codes on disclosure of terminal illness in Islamic countries. Data source and extraction Data were extracted through searches on Google and PubMed. Codes related to disclosure of terminal illness to patients or families were abstracted, and then classified independently by the three authors. Data synthesis Codes for 14 Islamic countries were located. Five codes (...) were silent regarding informing the patient, seven allowed concealment, one mandated disclosure and one prohibited disclosure. Five codes were silent regarding informing the family, four allowed disclosure and five mandated/recommended disclosure. The Islamic Organization for Medical Sciences code was silent on both issues. Conclusion Codes regarding disclosure of terminal illness to patients and families differed markedly among Islamic countries. They were silent in one-third of the codes, and tended to favour a paternalistic/utilitarian, family-centred approach over an autonomous, patient-centred approach. (shrink)
Background: Medical chaperones (MC) are underutilised. The influence of Islamic culture on the use of MC is not known. Aim: To examine physicians’ use and perception of MC in Islamic culture. Setting: A major tertiary care hospital in Saudi Arabia. Methods: 315 self-administered questionnaires were distributed to attendees of grand rounds of 13 departments. Results: 186 (59%) questionnaires were completed. 64.5% of the respondents were 30–49 years old, 75.8% were men and 31.2% were in training; 79% had a clinic load (...) of under 50 patients per week and 47.8% had postgraduate training (PGT) in an Islamic country. MC were reported to be infrequently (⩽25% of the time) used by 44.1% (69.2% female vs 39% male physicians, p = 0.001; 58.6% in training vs 36.8% attending, p = 0.007; 52.1% PGT in Islamic vs 35.6% in western countries, p = 0.027), offered by 52.7% (78.9% female vs 46.8% male physicians, p<0.001) and requested by 79% of patients. MC were reported to be commonly (>75% of the time) used, offered by physicians and requested by patients by 38.2%, 29% and 7.5% of respondents, respectively. The most frequently cited reasons for not using MC were privacy/confidentiality (36.6%) and understaffing (30.5%). Equal numbers of respondents perceived MC use as a protection for physicians or patients (67.7% and 65.6%, respectively). Conclusions: MC are underutilised even in Islamic culture, especially among female physicians. Training in western countries is favourably associated with MC use. Underutilisation appears to be related to privacy/confidentiality, understaffing and failure of patients to request a MC. (shrink)
Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes.
The current doctrine of informed consent for clinical care has been developed in cultures characterized by low-context communication and monitoring-style coping. There are scarce empirical data on patients' norm perception of information disclosure in other cultures.
Background Posthumous organ procurement is hindered by the consenting process. Several consenting systems have been proposed. There is limited information on public relative attitudes towards various consenting systems, especially in Middle Eastern/Islamic countries. Methods We surveyed 698 Saudi Adults attending outpatient clinics at a tertiary care hospital. Preference and perception of norm regarding consenting options for posthumous organ donation were explored. Participants ranked (1, most agreeable) the following, randomly-presented, options from 1 to 11: no-organ-donation, presumed consent, informed consent by donor-only, (...) informed consent by donor-or-surrogate, and mandatory choice; the last three options ± medical or financial incentive. Results Mean(SD) age was 32(9) year, 27% were males, 50% were patients’ companions, 60% had ≥ college education, and 20% and 32%, respectively, knew an organ donor or recipient. Mandated choice was among the top three choices for preference of 54% of respondents, with an overall median[25%,75%] ranking score of 3[2,6], and was preferred over donor-or-surrogate informed consent (4[2,7], p vs. 11[6,11], respectively, p = 0.002). Compared to females, males more perceived donor-or-surrogate informed consent as the norm (3[1,6] vs. 5[3,7], p vs. 8[4,9], p vs. 5[2,7], p Conclusions We conclude that: 1) most respondents were in favor of posthumous organ donation, 2) mandated choice system was the most preferred and presumed consent system was the least preferred, 3) there was no difference between preference and perception of norm in consenting systems ranking, and 4) financial (especially in females) and medical (especially in males) incentives reduced preference. (shrink)
Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence in (...) surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (shrink)
Disclosure of near miss medical error (ME) and who should disclose ME to patients continue to be controversial. Further, available recommendations on disclosure of ME have emerged largely in Western culture; their suitability to Islamic/Arabic culture is not known.
Among the various appropriations and discussions of M.M. Bakhtin’s work, his ‘philosophy of the everday’ has received increasing recognition in Western scholarship that has complemented his reputation as a literary theorist, aesthetician, and linguist. For example, some critics have suggested that Bakhtin’s work on literature springs from his understanding of the novel as a ‘transcendental metaphor’ for life. Others have attempted to adapt Bakhtin’s work on literature and its emancipatory practical orientation to critical social theory. Such interpretive endeavors might be (...) valid in their respective contexts. However, they in effect obscure the fact that Bakhtin starts his intellectual career as a phenomenologist intent on giving a non-aesthetic explanation of the world, i.e., as human beings experience it through cognition and practical action prior to the mediation of art. In one of his earliest pieces, Toward a Philosophy of the Act, Bakhtin sets out to advance the foundations of a prima philosophia, a philosophical ontology that would explain human existence through categories of being rather than through those of representation. No matter how much of Bakhtin’s early work draws on the legacy of other thinkers, such an intention, unequivocally expressed, testifies to his investment in the philosophy of the real, the practical, and the everyday. In Bakhtin’s early essays, the human being—the figure around which his whole philosophy of the 1920’s revolves—is explicitly portrayed as a living, breathing individual and is carefully distinguished from a literary ‘hero’. (shrink)
Among the various appropriations and discussions of M.M. Bakhtin’s work, his ‘philosophy of the everday’ has received increasing recognition in Western scholarship that has complemented his reputation as a literary theorist, aesthetician, and linguist. For example, some critics have suggested that Bakhtin’s work on literature springs from his understanding of the novel as a ‘transcendental metaphor’ for life. Others have attempted to adapt Bakhtin’s work on literature and its emancipatory practical orientation to critical social theory. Such interpretive endeavors might be (...) valid in their respective contexts. However, they in effect obscure the fact that Bakhtin starts his intellectual career as a phenomenologist intent on giving a non-aesthetic explanation of the world, i.e., as human beings experience it through cognition and practical action prior to the mediation of art. In one of his earliest pieces, Toward a Philosophy of the Act, Bakhtin sets out to advance the foundations of a prima philosophia, a philosophical ontology that would explain human existence through categories of being rather than through those of representation. No matter how much of Bakhtin’s early work draws on the legacy of other thinkers, such an intention, unequivocally expressed, testifies to his investment in the philosophy of the real, the practical, and the everyday. In Bakhtin’s early essays, the human being—the figure around which his whole philosophy of the 1920’s revolves—is explicitly portrayed as a living, breathing individual and is carefully distinguished from a literary ‘hero’. (shrink)
Cet ouvrage collectif réunit neuf contributions d'ethnologues et de linguistes relatives aux femmes comme objets de discours, à la langue et aux pratiques langagières censées caractériser les femmes ou le féminin, dans plusieurs aires culturelles d'Europe (Portugal, Chypre, Roumanie, mais aussi Finlande, Estonie, Laponie). Elles sont de qualité très inégale : celles qui portent sur « l'image de la femme » telle qu'on peut la saisir à partir de corpus de littérature orale (en particulie..
