Autism spectrum disorder (ASD) has a significant impact on the quality of life (QoL) of families. This study aimed to examine, for parents of children with ASD, the dyadic effect of each parent’s ...coping strategy on the perception of the impact of ASD on their QoL. In total, 164 couples completed self-report questionnaires, including the Par-DD-QoL, to evaluate the parental perception of QoL. Results from the actor-partner interdependence model showed that, in addition to the effect of the mothers’ and fathers’ emotion-focused coping on their own perception of QoL, the mothers’ emotion-focused coping plays a key role in the fathers’ perception of QoL. These findings suggest that both parents of children with ASD would benefit from couple-focused interventions.
IntroductionThere is global concern about the increasing prevalence of autism spectrum disorders (ASDs), which are early-onset and long-lasting disorders. Although ASDs are considered to comprise a ...unique syndrome, their clinical presentation and outcome vary widely. Large-scale and long-term cohort studies of well-phenotyped samples are needed to better understand the course of ASDs and their determinants. The primary objective of the multicEntric Longitudinal study of childrEN with ASD (ELENA) study is to understand the natural history of ASD in children and identify the risk and prognostic factors that affect their health and development.Methods and analysisThis is a multicentric, longitudinal, prospective, observational cohort in which 1000 children with ASD diagnosed between 2 and 16 years of age will be recruited by 2020 and followed over 6 years. The baseline follow-up starts with the clinical examination to establish the ASD diagnosis. A battery of clinical tools consisting of the Autism Diagnostic Observation Schedule, the revised version of the Autism Diagnostic Interview, measures of intellectual functioning, as well as large-scale behavioural and developmental measurements will allow us to study the heterogeneity of the clinical presentation of ASD subtypes. Subsequent follow-up at 18 months and at 3, 4.5 and 6 years after the baseline examination will allow us to explore the developmental trajectories and variables associated with the severity of ASD. In addition to the children’s clinical and developmental examinations, parents are invited to complete self-reported questionnaires concerning perinatal and early postnatal history, congenital anomalies, genetic factors, lifestyle factors, medical and psychiatric comorbidities, and the socioeconomic environment. As of 1 November 2018, a total of 766 participants have been included.Ethics and disseminationEthical approval was obtained through the Marseille Mediterranean Ethics Committee (ID RCB: 2014-A01423-44), France. We aim to disseminate the findings through national and international conferences, international peer-reviewed journals, and social media.Trial registration number NCT02625116; Pre-results.
The purpose of the present article was to assess the available literature concerning pain and autism. First, authors summarized the published articles on pain reactivity in people with autism. ...Second, the hypotheses envisaged to explain the presence of expressive particularities in people with autism spectrum disorders were reviewed; these included endogenous opioid excess theory, sensorial abnormalities and sociocommunicative deficit. Finally, the present review dealt with the tools available to assess and manage pain in people with autism. In conclusion, the authors revealed the need for more research to obtain more consensual data and provided some recommendations in this domain that were underexploited by the scientific community. From a clinical point of view, more knowledge about pain in people with autism should enable the development of specific assessment tools and, consequently, better pain management in daily care.
L’objectif de cette étude est d’évaluer les bénéfices de la participation à un groupe d’accompagnement parental sur le plan de la qualité de vie et du stress, chez des parents dont les enfants ont ...reçu récemment un diagnostic de TSA.
Le programme comporte cinq séances d’une journée. Treize familles (18 parents au total) d’enfants âgés de moins de six ans y participent. Une évaluation avant et après le programme est effectuée à l’aide d’une échelle de qualité de vie (Par-DD-QoL) et de stress parental (PSI).
Il est noté une diminution significative du score de stress parental à la fin du programme. Le score émotionnel de l’échelle de qualité de vie tend également à diminuer, alors que le score de vie quotidienne reste stable. La diminution du stress parental apparaît plus marquée chez les parents qui ont deux enfants que chez ceux n’ayant qu’un seul enfant.
Ces résultats suggèrent l’intérêt des programmes visant à accompagner les parents dans les suites immédiates de l’annonce du diagnostic de TSA et leur possible impact sur le stress parental.
Autism spectrum disorders (ASD) have a major impact on families’ quality of life, and parents report a lack of information and support after the diagnosis. The goal of the present study is to assess the benefits of a program aiming to support parents whose child was recently diagnosed as autistic and to give them a better understanding of the disorder. The evolution of the Quality of Life and parental stress scores before and after the psychoeducational program is studied.
The program contains five monthly sessions of one day each. The sessions are conducted by two professionals from the Autism Resource Center of Languedoc-Roussillon in France. Thirteen families (18 parents) participated in the program. Their children were under six years of age and had received an ASD diagnosis in the passed year. Quality of Life and parental stress are assessed before and after their participation to the group, through the Parental–Developmental Disorder–Quality of Life scale (Par-DD-QoL) and the Parental Stress Index (PSI). The potential role of familial variables (parents’ age and sex, number of siblings) is also studied.
There is a significant decrease in the parental stress score at the end of the program. The emotional score of the Quality of Life scale also tends to decrease, whereas the daily living score remains stable. The decrease of parental stress seems related to the number of siblings in the family, with a more important decrease in parents who have two children at the beginning of the program, as compared to parents who had only one child.
These results emphasize the importance of accompanying parents after an ASD diagnosis, and suggest that such psychoeducational programs might help reducing the stress felt by parents at this time of their life.
Autism and pain - a literature review Dubois, Amandine; Rattaz, Cécile; Pry, René ...
Pain research & management,
2010 Jul-Aug, Letnik:
15, Številka:
4
Journal Article
Recenzirano
Odprti dostop
The purpose of the present article was to assess the available literature concerning pain and autism. First, authors summarized the published articles on pain reactivity in people with autism. ...Second, the hypotheses envisaged to explain the presence of expressive particularities in people with autism spectrum disorders were reviewed; these included endogenous opioid excess theory, sensorial abnormalities and sociocommunicative deficit. Finally, the present review dealt with the tools available to assess and manage pain in people with autism. In conclusion, the authors revealed the need for more research to obtain more consensual data and provided some recommendations in this domain that were under exploited by the scientific community. From a clinical point of view, more knowledge about pain in people with autism should enable the development of specific assessment tools and, consequently, better pain management in daily care.
The purpose of this study was to observe olfactory detection and discrimination in preterm and full‐term newborns. Infants were familiarized for 10 trials with either vanillin or anethole. On each ...trial, a cotton swab perfumed with one of the odors was slowly moved in front of the baby's nose for 10 sec. For half of the preterm and full‐term infants, a new odor was presented after the last familiarization trial (experimental groups). For the other half, the same odor as during familiarization was presented (control groups). Facial and head movements for both populations and heart rates for preterm infants were recorded before, during, and after odor presentation. Preterm infants reacted to the scents by increasing facial actions and heart rate but not head movements. Full‐term infants increased facial and head movements. Neither population showed a clear behavioral habituation pattern, but full‐term newborns had a significantly reduced facial reactivity on the last familiarization trial compared to preterm infants. Preterm newborns did, however, show cardiac habituation on the last familiarization trial. Preterm and full‐term infants presented with a new odor after familiarization increased responding compared to infants presented with the same odor, indicating their ability to discriminate between 2 odors. Infants' reactivity and discrimination to odors indicate preterm and full‐term newborns' ability to be attuned to their olfactory environment.
The purpose of the present article was to assess the available literature concerning pain and autism. First, authors summarized the published articles on pain reactivity in people with autism. ...Second, the hypotheses envisaged to explain the presence of expressive particularities in people with autism spectrum disorders were reviewed; these included endogenous opioid excess theory, sensorial abnormalities and sociocommunicative deficit. Finally, the present review dealt with the tools available to assess and manage pain in people with autism. In conclusion, the authors revealed the need for more research to obtain more consensual data and provided some recommendations in this domain that were under exploited by the scientific community. From a clinical point of view, more knowledge about pain in people with autism should enable the development of specific assessment tools and, consequently, better pain management in daily care.
Autism and pain - a literature review Dubois, Amandine; Rattaz, Cécile; Pry, René ...
Pain research & management,
07/2010, Letnik:
15, Številka:
4
Journal Article
PDF
