Contexte : En 2021, le Canada a étendu l’aide médicale à mourir (AMM) aux personnes dont le décès naturel n’est pas raisonnablement prévisible, ce qu’on appelle l’AMM de type 2. L’objectif de cette étude était de mieux comprendre les meilleures pratiques en matière d’AMM de type 2 du point de vue des personnes atteintes d’une maladie ou d’un handicap qui pourraient les rendre admissibles à l’AMM. Méthodes : Il s’agissait d’une étude qualitative basée sur des entretiens et utilisant les principes (...) de la description interprétative. Sept participants ont été interrogés à trois reprises sur une période de 3 à 6 semaines. Résultats : Les participants ont décrit des trajectoires de maladie longues et complexes qui ont entraîné des souffrances liées à la perte, à la stigmatisation et aux dommages iatrogènes. L’expertise qu’ils ont acquise au fil des années passées à vivre avec leur maladie et les difficultés qu’ils ont rencontrées dans le domaine des soins de santé ont influencé leur point de vue sur les soins d’aide médicale à mourir. Les participants ont souligné l’expertise essentielle dont doivent disposer les évaluateurs de la voie 2 pour fournir des soins compatissants et tenant compte des traumatismes. Les participants ont reconnu la nécessité de disposer de temps pour acquérir une compréhension holistique de l’expérience de chaque demandeur, des souffrances qui en découlent, des tentatives pour soulager ces souffrances et pour se faire une idée du déclin au fil du temps. Les participants étaient troublés par la tension perçue entre l’autonomie et le rôle des déterminants sociaux de la santé dans la détermination de l’admissibilité à l’aide médicale à mourir. Discussion : Dans l’ensemble, les participants ont décrit la nécessité d’une approche partenariale pour l’évaluation de l’aide médicale à mourir dans le cadre de la voie 2. Bien que les participants aient considéré l’autonomie individuelle d’autrui comme plus importante que leurs opinions personnelles, ils ont exprimé de graves préoccupations quant à la possibilité que des systèmes de santé et d’aide sociale inadéquats influencent les demandes d’aide médicale à mourir. (shrink)

Background: In 2021, Canada extended Medical Assistance in Dying (MAID) to persons whose natural death is not reasonably foreseeable, referred to as Track 2 MAID. The purpose of this study was to develop a better understanding of best practices for Track 2 MAID from the perspectives of those living with an illness, disease, or disability that could potentially make them eligible for MAID. Methods: This was a qualitative interview study using the principles of Interpretive Description. Seven participants were interviewed three (...) times over a period of 3-6 weeks. Findings: Participants described prolonged and complex illness trajectories that resulted in suffering from loss, stigma, and iatrogenic harm. The expertise they had developed over years of living with their condition and the challenges they had experienced in healthcare informed their perspectives about MAID care. Participants highlighted essential expertise needed for Track 2 assessors to provide compassionate, trauma-informed care. Participants recognized the need for time to achieve a holistic understanding of each applicant’s experience, consequent suffering, attempts to relieve that suffering, and to develop a picture of decline over time. Participants were troubled by perceived tension between autonomy and the role of the social determinants of health in determinations of eligibility for MAID. Discussion: Overall, participants described the necessity of a partnered approach to Track 2 MAID assessment. Although participants considered the individual autonomy of others as more important than their personal views, they expressed grave concerns about the potential for inadequate health and social care systems to influence requests for MAID. (shrink)

Surveys and routine clinical procedures applied in research protocols are typically considered only minimally risky to participants. The apparent benign nature of "minimal risk" tasks increases the chance that investigators and Institutional Review Boards (IRBs) will overlook the probability that clinical tools will identify signs, symptoms, or definitive test results that are clinically-relevant to subjects' welfare. "Minimal risk" procedures may also pose a particular hazard to participants in clinical research by increasing the therapeutic misconception because the tasks mimic clinical care (...) and are often conducted in clinical settings. Investigators should anticipate which measures could yield clinically-important findings and should describe explicit plans for data monitoring, disclosure, and follow-up. Protocols that include reliable and valid clinical measures should prompt a more detailed risk assessment by the IRB, even when the tasks meet the regulatory criteria for minimal physical, psychological, or emotional risk. (shrink)

Differences in infant caregiving behavior between cultures have long been noted, although the quantified comparison of touch-based caregiving using uniform standardized methodology has been much more limited. The Parent-Infant Caregiving Touch scale was developed for this purpose and programming effects of early parental tactile stimulation on infant hypothalamic-pituitary adrenal -axis functioning, cardiovascular regulation and behavioral outcomes, similar to that reported in animals, have now been demonstrated. In order to inform future studies examining such programming effects in India, we first aimed (...) to describe and examine, using parametric and non-parametric item-response methods, the item-response frequencies and characteristics of responses on the PICTS, and evidence for cross-cultural differential item functioning in the United Kingdom and India. Second, in the context of a cultural favoring of male children in India, we also aimed to test the association between the sex of the infant and infant “stroking” in both cultural settings. The PICTS was administered at 8–12 weeks postpartum to mothers in two-cohort studies: The Wirral Child Health and Development Study, United Kingdom and the Bangalore Child Health and Development Study, India. Mokken scale analysis, parametric item-response analysis, and structural equation modeling for categorical items were used. Items for two dimensions, one for stroking behavior and one for holding behavior, could be identified as meeting many of the criteria required for Mokken scales in the United Kingdom, only the stroking scale met these criteria in the sample from India. Thus, while a comparison between the two cultures was possible for the stroking construct, comparisons for the other non-verbal parenting constructs within PICTS were not. Analyses revealed higher rates of early stroking being reported for the United Kingdom than India, but no sex differences in rates in either country and no differential sex difference by culture. We conclude that PICTS items can be used reliably in both countries to conduct further research on the role of early tactile stimulation in shaping important child development outcomes. (shrink)