Date Published: February 4, 2019
Publisher: Public Library of Science
Author(s): Marie-Christine Rousseau, Karine Baumstarck, Sherezad Khaldi-Cherif, Catherine Brisse, Agnès Felce, Benjamin Moheng, Anderson Loundou, Thierry Billette de Villemeur, Pascal Auquier, Ali Montazeri.
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.
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.
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.
Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
Polyhandicap (PLH), as a recently defined concept [1–3], it is a dramatic health condition comprising severe and complex disabilities corresponding to a chronic disorder occurring in an immature brain, leading to a combination of a profound intellectual impairment and a serious motor deficit and resulting in an extreme restriction of autonomy and communication. PLH is close to profound intellectual and multiple disabilities (PIMD), but PLH does not systematically refer to a disorder affecting an immature brain . Due to the entanglement of various heavy handicaps and multiple comorbidities , the patients need permanent human and technical assistance throughout their life.
A total of 1273 questionnaires were proposed to referent parents of PLH individuals included in the cohort. During this period, 394 parents (response rate: 31%), corresponding to 295 PLH individuals, returned the questionnaires. For 69 PLH individuals, both parents (138) participated. Among the 879 non-responders, a 10% random sample (n = 87) was called by phone in order to collect a reason of non-participation: difficulty understanding French language (n = 29), being unable to talk about this experience (n = 23), refusal to give any reason (n = 17), personal health difficulties (n = 3), and 15 parents were not reachable. The PLH individuals’ characteristics of the 879 non-participants did not differ from the PLH individuals’ characteristics of the 394 participants in terms of gender, severity, stability, and presence of devices; the participants had younger children in comparison with the non-participants (19.7+/-14.6 vs. 27.0+/-17.4, p<0,05). It has been recognized that caregiving adversely affects the caregiver in terms of their health, emotional status, and quality of life [13–15]. While there is a vast literature assessing caregiving in various chronic/severe diseases (such as cancer [13,14], mental health diseases , various neurologic diseases [16,17], and in people with cerebral palsy [18–20], very few studies have assessed the impact of polyhandicap, which is a dramatic health condition leading to extreme physical and psychological dependency. This study explores, for the first time, the quality of life and factors modulating this QoL from a large sample of parents of PLH individuals. This study showed that the quality of life of parents of polyhandicapped individuals is severely deteriorated. The heaviest QoL determinants were the financial and health issues and the psycho-behavioural aspects. Because many of these determinants might be amenable, these findings should help health care workers and health decision-makers to implement specific and appropriate interventions. Source: http://doi.org/10.1371/journal.pone.0211640