Psychological and ethical issues raised by genomic in paediatric care pathway, a qualitative analysis with parents and childhood cancer patients.

In paediatric oncology, genomics raises new ethical, legal and psychological issues, as somatic and constitutional situations intersect throughout the care pathway. The discovery of potential predisposition in this context is sometimes carried out outside the usual framework. This article focuses on the views of children, adolescents, and young adults (AYA) with cancer and their parents about their experience with genomic testing. Forty-eight semi-structured interviews were performed with children or AYAs with cancer and one of their parents, before and/or after receiving the genetic test results. The interviews were fully transcribed, coded and thematically analysed using an inductive method. This analysis revealed several themes that are key issues: perceived understanding and consenting, apprehension about the test outcomes (expectations and fears), perception and attitude towards incidental findings. The main expectation was an aetiological explanation. Children and AYAs also emphasised the altruistic meaning of genetic testing, while parents seemed to expect a therapeutic and preventive approach for their child and the rest of the family. Parents were more concerned about a family risk, while patients were more afraid of cancer relapse or transmission to their descendants. Both groups suggested possible feelings of guilt concerning family transmission and imaginary representations of what genomics may allow. Incidental findings were not understood by patients, while some parents perceived the related issues and hesitated between wanting or not to know. A multidisciplinary approach would be an interesting way to help parents and children and AYAs to better grasp the complexity of genetic and/or genomic testing.

Qualitative analysis of the organisational response of a university hospital during the first wave of the COVID-19 crisis.

BACKGROUND: The COVID-19 pandemic has required urgent organisational and managerial adaptation, with hospital medical and administrative leaders under considerable pressure. METHODS: At a single French university hospital, we performed a sociological analysis of management adaptation by medical and administrative leaders during the first wave of the COVID-19 crisis. Two sociologists performed interviews with representative members of staff from all the structures involved in managing the crisis to analyse adaptation and the solutions found during this period. RESULTS: The answers collected during interviews were classified into three main topics describing the organisational adaptations of the hospital staff during the COVID-19 crisis: (1) exceptional mobilisation and collaboration; (2) crisis management based primarily on the principle of subsidiarity; and (3) survival of the administrative structure with interventions to support caregivers. CONCLUSION: This study, focusing on a single hospital, identified a number of factors associated with successful mobilisation in the very specific conditions of this viral pandemic.

Barriers to Effective Postmenopausal Osteoporosis Treatment: A Qualitative Study of Patients' and Practitioners' Views.

BACKGROUND: Only a minority of patients at high risk for osteoporotic fracture receive treatment. OBJECTIVE: Study patients' and physicians' views regarding postmenopausal osteoporosis (PMO) to identify impediments to good care. METHODS: A qualitative study involving 18 physicians and 37 women (age 57-87) with PMO. RESULTS: All women interviewed considered PMO to be somewhat normal wear-and-tear associated with old age. The women identified a large number of "causes" for osteoporosis but finally viewed it as chance. They all described its progression as slow. Three representations of PMO severity were identified: some women tended to interpreted it as benign (21), others tended to dramatize it (11), and the rest were uncertain (5). These representations did not appear linked to age or fracture. Even the women who associated fracture and PMO were uncertain of the link between them. Fractures were considered to be random events, independent of osteoporosis. Women received general life-style recommendations from their physicians positively, but did not connect them specifically to osteoporosis. Indeed, these recommendations, along with the fear of side effects, the absence of tangible results of treatments, the view of PMO as a natural process, and the representations of PMO severity are factors that may deter treatments and impact compliance. As for the physicians, they identified eight risk factors, recognizing menopause as central to PMO and recognized the link between risk of fracture and PMO. However, some considered the impact of fractures to be limited in time, and viewed PMO as a "benign" disease. Seeing the progression of PMO as slow and inevitable reduced their urgency to diagnose and treat it as compared to other diseases. Some physicians acknowledged limited mastery of the existing therapeutic arsenal and unsuccessful handling of patient compliance. CONCLUSION: Women's and physicians' perspectives on PMO converged to trivialize postmenopausal osteoporosis and thus disqualify it as a legitimate disease. A better understanding of women's and physicians' views, practices, and concerns related to PMO can improve osteoporosis management.