Changing attitudes towards female genital mutilation. From conflicts of loyalty to reconciliation with self and the community: The role of emotion regulation.

The practice of female genital mutilation (FGM) is a social norm embedded in the patriarchal system and is resistant to change due to its roots in the tradition of the practising communities. Despite this difficulty in change, some women succeed in changing their attitudes towards the practice. In trying to understand what makes these women change their attitudes, we identified in a previous study, the critical life events at which change occurs (turning point). These turning points were described with emotions and conflicting feelings based on which we hypothesised that emotion regulation and the resolution of conflicts of loyalty might be possible mechanisms that explain the change of attitudes by the women. In this article, we sought to investigate how the mechanisms interact and how they were at play to explain the change. We, therefore, triangulated our previous data, fifteen women interviewed twice, with the published life stories and public testimonies of 10 women with FGM, and interviews of six experts chosen for their complementary fields of expertise to discuss the emerging concepts and theory, generated by our study. The data were analysed using framework analysis and an element of the grounded theory approach (constant comparison). As a result of our theorisation process, we propose a model of change in five stages (Emotion suppression, The awakening, The clash, Re-appropriation of self, and Reconciliation). This describes the process of a woman's journey from compliance with FGM and community norms to non-compliance. Our study reveals how the women whose stories were analysed, moved from being full members of their community at the cost of suppressing their emotions and denying their selves, to becoming their whole selves while symbolically remaining members of their communities through the forgiveness of their mothers.

Semen Cryopreservation in Adolescents and Young Adults with Hematologic Diseases: from Bed to Benchside.

Purpose: Infertility in adolescents and young adult (AYA) survivors of malignant disease remains a major long-term adverse effect, but semen collection for fertility preservation in fertility centers is not always feasible and makes AYAs uncomfortable. We evaluated the feasibility of collecting sperm samples on the ward versus in fertility centers. Methods: Consecutive hospitalized AYA-aged male patients in the Hematology AYA unit (Saint-Louis Hospital, France) between August 2010 and June 2016 with hematological disease and indication of semen collection (n = 95) were included in this retrospective study. Semen quality was analyzed according to World Health Organization guidelines and was compared according to semen collection place: on the ward (n = 46) or in fertility center (n = 49). Results: The median age was median age 19.1 years (range: 13.7-33.3; interquartile range: 17.1-22.8) and 85 patients successfully collected semen. Sperm collection failure was ∼11% and was comparable between the two modalities as were main sperm quality characteristics (semen volume, sperm concentration, total sperm count, progressive motility and vitality, sperm morphology, and multiple anomalies index). Oligospermia was significantly higher in the samples obtained in fertility center (47.7%) than on the ward (26.8%), p = 0.047. Average frozen straws were comparable, 12.2 ± 6.4 on the ward versus 11.9 ± 6.3 in fertility center. Conclusion: Semen collection on the ward is feasible and would be particularly interesting for AYA male patients without altering semen quality characteristics.

COVID-19 Health Crisis and Chronic Illness: Protocol for a Qualitative Study.

BACKGROUND: The acute nature of the COVID-19 pandemic has put a strain on health resources that are usually dedicated to chronic illnesses. Resulting changes in care practices and networks have had major repercussions on the experience of people with chronic disorders. OBJECTIVE: This paper presents the protocol of the Parcours, Associations, Réseau, Chronicité, Organisation, Usagers, Retour d'expérience, Soins (PARCOURS)-COVID study. The aim of this study is to evaluate the effects of reorganization of the health system on the usual care network of patients with chronic illness, which fosters and qualifies the quality and continuum of care provided. The first objective of this study is to document these patients' experiences through transformations and adaptations of their network, both in the practical dimension (ie, daily life and care) and subjective dimension (ie, psychosocial experience of illness and relationship to the health system). The second objective of the study is to understand and acknowledge these reorganizations during the COVID-19 lockdown and postlockdown periods. The third objective is to produce better adapted recommendations for patients with chronic illness and value their experience for the management of future health crisis. METHODS: The PARCOURS-COVID study is a qualitative and participatory research involving patient organizations as research partners and members of these organizations as part of the research team. Three group of chronic diseases have been selected regarding the specificities of the care network they mobilize: (1) cystic fibrosis and kidney disease, (2) hemophilia, and (3) mental health disorders. Four consecutive phases will be conducted, including (1) preparatory interviews with medical or associative actors of each pathology field; (2) in-depth individual interviews with patients of each pathology, analyzed using the qualitative method of thematic analysis; (3) results of both these phases will then be triangulated through interviews with members of each patient's care ecosystem; and finally, (4) focus groups will be organized to discuss the results with research participants (ie, representatives of chronic disease associations; patients; and actors of the medical, psychosocial, and family care network) in a research-action framework. RESULTS: The protocol study has undergone a peer review by the French National Research Agency's scientific committee and has been approved by the research ethical committee of the University of Paris (registration number: IRB 00012020-59, June 28, 2020). The project received funding from August 2020 through April 2021. Expected results will be disseminated in 2021 and 2022. CONCLUSIONS: Our findings will better inform the stakes of the current health crisis on the management of patients with chronic illness and, more broadly, any future crisis for a population deemed to be at risk. They will also improve health democracy by supporting better transferability of knowledge between the scientific and citizen communities. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/28728.

Sexuality- and Fertility-Related Issues in Women after Allogeneic Hematopoietic Stem Cell Transplantation.

Sexual dysfunction and fertility related issues appear as major post-allogeneic hematopoietic stem cell transplantation (HSCT) late effects in young women, with a heavy impact on quality of life. The objective of the present study was to evaluate the impact of disease and treatments on sexual quality of life, ovarian function, and family planning initiatives in the context of allogeneic HSCT. Between January 2014 and January 2016, adult female patients who underwent HSCT before age 35 and had been followed for more than 2 years in our center were offered participation in the study through a self-reported survey and/or ovarian function assessment if age <40 at inclusion. A total of 63 patients were included, with a median age of 23.4 years at transplantation and 30.9 years at inclusion. Twenty-nine patients (46%) underwent HSCT for acute leukemia and 16 (25%) underwent HSCT for aplastic anemia (AA). The conditioning regimen was myeloablative conditioning (MAC) in 37 patients (59%) and reduced-intensity conditioning (RIC) in 26 (41%). Fifty-eight patients completed the survey, and 34 were evaluated for ovarian function. Symptoms of hypoestrogenism were reported by 86% of the patients and changes in sexual life were reported by 76%, due mainly to low sex drive, negative impact of infertility problems, physical sequelae, and loss of self-confidence. Premature ovarian failure (POF) occurred in 74% of patients and was significantly associated with conditioning regimen (MAC versus RIC; P = .001) and baseline disease (bone marrow failure versus acute leukemia versus others; P < .001). However, one-half of the patients developed a POF despite the use of a RIC regimen. For 27 patients (47%), disease and treatments modified their desire for pregnancy, due mainly to fear of relapse and of disease transmission to offspring. Thirteen pregnancies were reported (21%), of which 8 were spontaneous and 5 were obtained through assisted reproductive technologies, mainly oocyte donation. With a median post-transplantation follow-up of 12.2 years, the 10-year cumulative incidence of first pregnancy was 16.6% (95% CI, 8.8-30.0). Among 20 patients (32%) who engaged in a family planning initiative, 13 (65%) succeeded in having children: 11 got pregnant and 2 adopted. Sixteen patients benefited from fertility preservation techniques consisting of ovarian tissue cryopreservation, and a single autologous ovarian tissue transplantation had been performed at the time of this report. This study shows a strong impact of disease and treatments on sexual quality of life, ovarian function, and family planning initiatives in the context of HSCT. It demonstrates the need to improve clinicians' awareness of sexual health- and fertility-related issues after HSCT. The difficulty of predicting ovarian function and fertility issues after RIC supports wide indications of pretransplantation fertility preservation. Evaluation of the use of cryopreserved ovarian tissues is warranted.

[Ethical and social consequences of biomarkers that predict impending death in humans]. / Conséquences éthiques et sociales de biomarqueurs prédictifs de la mort chez l'homme - La vieillesse et la mort, problématiques comportementales et sociétales.

Fundamental research on ageing has taken an interesting turn in recent years with the rapid development of biomarkers predicting mortality in model organisms, particularly Drosophila, as well as in humans through improvements in approaches to the identification of circulating molecules in mass. These developments lead to a shift in our ability to predict the occurrence of death from the historically population level to the individual level. We question here the ethical, medical and social implications of this change of scale.

TITLE: Conséquences éthiques et sociales de biomarqueurs prédictifs de la mort chez l'homme - La vieillesse et la mort, problématiques comportementales et sociétales. ABSTRACT: La recherche fondamentale sur le vieillissement a pris un tour intéressant ces dernières années avec un développement rapide des biomarqueurs prédictifs de mortalité chez les organismes modèles, notamment la drosophile, ainsi que chez l'être humain à travers les améliorations des approches d'identification en masse de molécules circulantes. Ces développements conduisent à un déplacement de notre capacité de prédiction de survenue de la mort, du niveau historiquement populationnel au niveau individuel. Nous interrogeons ici les implications éthiques, médicales et sociales de ce changement d'échelle.

Ethical and social implications of approaching death prediction in humans - when the biology of ageing meets existential issues.

BACKGROUND: The discovery of biomarkers of ageing has led to the development of predictors of impending natural death and has paved the way for personalised estimation of the risk of death in the general population. This study intends to identify the ethical resources available to approach the idea of a long-lasting dying process and consider the perspective of death prediction. The reflection on human mortality is necessary but not sufficient to face this issue. Knowledge about death anticipation in clinical contexts allows for a better understanding of it. Still, the very notion of prediction and its implications must be clarified. This study outlines in a prospective way issues that call for further investigation in the various fields concerned: ethical, psychological, medical and social. METHODS: The study is based on an interdisciplinary approach, a combination of philosophy, clinical psychology, medicine, demography, biology and actuarial science. RESULTS: The present study proposes an understanding of death prediction based on its distinction with the relationship to human mortality and death anticipation, and on the analogy with the implications of genetic testing performed in pre-symptomatic stages of a disease. It leads to the identification of a multi-layered issue, including the individual and personal relationship to death prediction, the potential medical uses of biomarkers of ageing, the social and economic implications of the latter, especially in regard to the way longevity risk is perceived. CONCLUSIONS: The present study work strives to propose a first sketch of what the implications of death prediction as such could be - from an individual, medical and social point of view. Both with anti-ageing medicine and the transhumanist quest for immortality, research on biomarkers of ageing brings back to the forefront crucial ethical matters: should we, as human beings, keep ignoring certain things, primarily the moment of our death, be it an estimation of it? If such knowledge was available, who should be informed about it and how such information should be given? Is it a knowledge that could be socially shared?

Adolescents and young adults with cancer: How multidisciplinary health care teams adapt their practices to better meet their specific needs.

OBJECTIVE: Dedicated adolescent and young adult (AYA) cancer units have emerged from the early 1990s to address multiple challenges faced by AYA patients with cancer. Specific needs of AYA patients have been considered in an increasing number of studies. However, few describe how the health care professionals (HCPs) perceive their patients' needs and how they actually adjust their day-to-day practices to meet such needs. The purpose of this study is to identify and describe the practical methods of care and teamwork implemented by HCPs in response to what they perceive as essential to support psychosocial development of AYA patients. METHODS: Qualitative research was conducted between 2012 and 2014 with 31 HCPs from a recently created haematology AYA unit in France. The transcripts of open-ended interviews were subject to inductive analysis using constant comparison as recommended by the grounded theory methods. RESULTS: Our results show how HCPs adapt their practices and care relationships to support three major developmental milestones related to identity construction in AYAs: self-determination and individuation from parents, gender and sexual identity, and social life and connectedness to peers and adults (other than parents). Our results also show how HCPs adapt their practices and organisational methods to enhance the flexibility required to address their young patients, thus setting consistent and high standards for the whole team. Such adaptation is made possible through collaborative work and collective processes that facilitate self-reflection. CONCLUSIONS: Our findings shed light on some meaningful young patient-friendly practices of care and advocate for AYA-dedicated units.

[Psychosocial and developmental outcomes of TYAs with cancer: Are there any specific characteristics for the young adults?] / Aspects psychosociaux et développementaux des AJA atteints de cancer : existe-t-il des spécificités propres aux jeunes adultes ?

During the last few years, specific support devices and even dedicated units for teenagers and young adults (TYAs - patients grouped in the 15-25 years age group) appeared in oncology. If the existing literature review allows identifying many written work related to the experience of cancer during adolescence, resources about "young adults" are not only far less abundant, but rarely give the definition of what is a "young adult". Based on this observation, it appears necessary, at this stage of our practice, to question the definition and psychosocial outcomes of those psychiatrists and psychologists also call "young adults". Are they so different compared to teenagers? Do they have their own specificities? Based on the analysis of the general literature, we will seek to define the highlights of this moment of life and to identify their specific psychosocial and developmental outcomes. Thus, we will be able to study more accurately the experience of young adults facing cancer and the associated psychological side effects. Based on this analysis, we will present the issues which seemed to be specific in the psychological support of young adults and their relatives.