Rousseau MC, Baumstarck K, Khaldi-Cherif S, Brisse C, Felce A, Moheng B, Loundou A, Billette de Villemeur T, Auquier P, French Polyhandicap Group.
PloS one 2019, 14(2):e0211640. doi: 10.1371/journal.pone.0211640. eCollection 2019.
Abstract
Background: Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents’ QoL.
Method: We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.
Results: The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents’ QoL were financial issues, health status, and coping strategies. The PLH individuals’ health status was not associated with parents’ QoL.
Conclusions: Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.