TY - JOUR
T1 - Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates
T2 - comparison between mothers and fathers
AU - on behalf of ELENA study group
AU - Vernhet, Christelle
AU - Michelon, Cécile
AU - Dellapiazza, Florine
AU - Rattaz, Cécile
AU - Geoffray, Marie Maude
AU - Roeyers, Herbert
AU - Picot, Marie Christine
AU - Baghdadli, Amaria
AU - Baghdadli, Amaria
AU - Chabaux, Catherine
AU - Chatel, Clarisse
AU - Cohen, David
AU - Damville, Emmanuel
AU - Gicquel, Ludovic
AU - Jardri, Renaud
AU - Maffre, Thierry
AU - Novo, Alexandre
AU - Roxane, Roxane
AU - Oreve, Marie Joëlle
AU - Périsse, Didier
AU - Poinso, François
AU - Pottelette, Julien
AU - Robel, Laurence
AU - Rolland, Catherine
AU - Schoenberger, Marie
AU - Sonié, Sandrine
AU - Speranza, Mario
AU - Vespérini, Stéphanie
N1 - Funding Information:
This research received support from the French Health Ministry (DGOS) PHRCN 2013; Grant number 1: 13-0232 and Caisse Nationale de Solidarité pour l’Autonomie (CNSA) Grant number 2: 030319. The CHU of Montpellier (AOI) provided additional support. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Funding Information:
We thank all of the families who participated in the study. Special thanks go to participating centers and our talented staff (Myriam Soussana, Julie Loubersac, Ela Miniarikova, Flore Couty, Laetitia Ferrando, Marianne Peries, Mathilde Berard and Lee Audras-Torrent). We express gratitude to the CNSA and DGOS, for funding to conduct this research. Elena Study Group: Pr Amaria Baghdadli, Dr Catherine Chabaux, Dr Clarisse Chatel, Pr David Cohen, Dr Emmanuel Damville, Dr Marie-Maude Geoffray, Pr Ludovic Gicquel, Pr Renaud Jardri, Dr Thierry Maffre, Dr Alexandre Novo, Dr Roxane Odoyer, Dr Marie-Joëlle Oreve, Dr Didier Périsse, Pr François Poinso, Dr Julien Pottelette, Dr Laurence Robel, Pr Catherine Rolland, Dr Marie Schoenberger, Dr Sandrine Sonié, Pr Mario Speranza, and Dr Stéphanie Vespérini.
Publisher Copyright:
© 2021, The Author(s), under exclusive licence to Springer Nature Switzerland AG.
PY - 2022/5
Y1 - 2022/5
N2 - Purpose: To compare mothers and fathers perceptions of the impact of autism spectrum disorder on their Quality of Life (QoL), we used the Parental-Developmental Disorders-Quality of Life scale (Par-DD-QoL). Method: The perception of QoL of mothers and fathers was compared for 130 pairs of parents of children with ASD and the associated variables were investigated. Results: Mothers perceived a significantly greater impact of ASD on their QoL than fathers. Parents perceived a higher impact of ASD on global QoL when their child’s adaptive skills were low and when the level of aberrant behaviors was high. More precisely, the perception of QoL by the mothers was negatively associated with their child’s internalized disorders, whereas the perception of QoL by the fathers was negatively associated with their child’s externalized disorders. Neither the mothers’ nor the fathers’ perception of the impact on QoL was associated with their children’s age or the severity of their autistic symptoms. Some parental factors, such as being members of a family association, having benefited from training in ASD and having experienced a disruption in professional activity were associated with a greater impact on their QoL. Conclusion: Our finding that the perceived impact of ASD on QoL differed between mothers and fathers argues for individualized psychosocial support. Moreover, the strong correlation between the child’s clinical characteristics and the perception by parents of a higher impact of ASD on QoL should be seen as red flag concerning the needs of the parents in terms of social and educational support. Trial registration number: NCT02625116 (October 2015).
AB - Purpose: To compare mothers and fathers perceptions of the impact of autism spectrum disorder on their Quality of Life (QoL), we used the Parental-Developmental Disorders-Quality of Life scale (Par-DD-QoL). Method: The perception of QoL of mothers and fathers was compared for 130 pairs of parents of children with ASD and the associated variables were investigated. Results: Mothers perceived a significantly greater impact of ASD on their QoL than fathers. Parents perceived a higher impact of ASD on global QoL when their child’s adaptive skills were low and when the level of aberrant behaviors was high. More precisely, the perception of QoL by the mothers was negatively associated with their child’s internalized disorders, whereas the perception of QoL by the fathers was negatively associated with their child’s externalized disorders. Neither the mothers’ nor the fathers’ perception of the impact on QoL was associated with their children’s age or the severity of their autistic symptoms. Some parental factors, such as being members of a family association, having benefited from training in ASD and having experienced a disruption in professional activity were associated with a greater impact on their QoL. Conclusion: Our finding that the perceived impact of ASD on QoL differed between mothers and fathers argues for individualized psychosocial support. Moreover, the strong correlation between the child’s clinical characteristics and the perception by parents of a higher impact of ASD on QoL should be seen as red flag concerning the needs of the parents in terms of social and educational support. Trial registration number: NCT02625116 (October 2015).
KW - Autism spectrum disorders
KW - Children
KW - Fathers
KW - Mothers
KW - Parents
KW - Perception of the impact on quality of life
UR - http://www.scopus.com/inward/record.url?scp=85128710639&partnerID=8YFLogxK
U2 - 10.1007/s11136-021-03045-3
DO - 10.1007/s11136-021-03045-3
M3 - Article
C2 - 34822048
AN - SCOPUS:85128710639
SN - 0962-9343
VL - 31
SP - 1499
EP - 1508
JO - Quality of Life Research
JF - Quality of Life Research
IS - 5
ER -