Background Profound intellectual multiple disabilities or polyhandicap (PLH) is defined as a combination of profound mental retardation and serious motor deficits resulting in extreme dependence. Support for these patients is multidisciplinary, complex, and time-consuming. Thus, institutional health care workers (HCWs) face specific working conditions: frequent physical tasks, distressed families, and restricted feedback. Objectives We aimed to identify determinants of quality of life (QoL) of HCWs and to study longitudinal evolution. Methods The study used data from the French cohort EVAL-PLH. The participants were institutional HCWs of persons with PLH (age ≥ 3 years at the time of inclusion; age at onset of cerebral lesion <3 years old). Two populations were used: (1) cross sectional study: the sample 1 includes the HCWs assessed at T2 (2020–2021); (2) longitudinal study: the sample 2 includes the HCWs assessed at both T1 (2015–2016) and T2 (2020–2021). The data collected included: sociodemographics, health status, professional variables, and psycho-comportemental aspects. QoL was assessed using WHOQOL-BREF which provides 4 scores. Results In comparison with French norms, the physical and social scores of QoL were significantly lower while the psychological score was significantly higher for (i) the 223 HCWs (participation rate 62%) assessed at T2 and (ii) the 61 HCWs assessed at T1 and T2. The main factors modulating QoL were age, marital status, self-perceived financial difficulties, personal chronic disease, anxiety-mood disorders, nature of coping strategies, and burnout. Conclusion This study confirms the mixed (negative and positive) impact of caring persons with PLH on the institutional HCWs’ QOL. Main determinants of the HCW’s QOL were: older age, single status, perceived financial difficulties, altered health status, burn out and coping strategies. Clinical trial registration number : NCT02400528.
Background Overcrowded housing, as well as inadequate sanitary conditions, contribute to making homeless people particularly vulnerable to the SARS-CoV-2 infection. We aimed to assess the seroprevalence of the SARS-CoV-2 infection among people experiencing homelessness on a large city-wide scale in Marseille, France, taking into account different types of accommodation. Methods A consortium of outreach teams in 48 different locations including streets, slums, squats, emergency or transitional shelters and drop-in centres participated in the inclusion process. All participants consented to have a validated rapid antibody assay for immunoglobulins M (IgM) and G (IgG) and to answer a questionnaire on medical health conditions, comorbidities, and previous COVID-19 symptoms. Information on their housing conditions since the COVID-19 crisis was also collected from the participants. Results From June 01 to August 05, 2020, 1,156 homeless participants were enrolled in the study and tested. The overall seroprevalence of SARS-CoV-2 IgG/IgM antibodies was 5.6% (95%CI 2.3–7.0), ranging from 2.2% in people living on the streets to 8.1% in people living in emergency shelters (P = 0.009). Around one third of the seropositive participants reported COVID-19 symptoms. Compared to the general population in Marseille (3.6%), the homeless population living in the same urban area experienced a significantly increased risk of SARS-CoV-2 infection (|z| = 3.65 > 1.96). Conclusion These findings highlight the need for regular screening among the homeless to prevent clustering in overcrowded or inadequate accommodations. It is also necessary to provide essential resources to keep homeless people healthy, the vast majority of whom have cumulative risk factors for SARS-CoV-2 infection.
Abstract Introduction Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo‐Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. Objective We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the ‘parenting work’) in the French context. Method Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8–35. The resulting data were analyzed using thematic analysis. Results The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities. Conclusion This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know‐how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. Patient or Public Contribution One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript.
