The impact of having a child with an Autism Spectrum Disorder (ASD) in Greek families, their needs and quality of life (Qol)

Doctoral Dissertation uoadl:2837716 523 Read counter

Τομέας Κοινωνικής Ιατρικής - Ψυχιατρικής και Νευρολογίας
Library of the School of Health Sciences
Deposit date:
Ntre Vasiliki
Dissertation committee:
Γεράσιμος Κολαΐτης, Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ, Επιβλέπων
Αικατερίνη Παπανικολάου, Αναπληρώτρια Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Δημήτριος Αναγνωστόπουλος, Καθηγητής Ιατρική Σχολή, ΕΚΠΑ
Στυλιανός Χριστογιώργος, Αναπληρωτής Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ
Ελένη Λαζαράτου, Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Αρτέμιος Πεχλιβανίδης, Αναπληρωτής Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ
Ιωάννα Γιαννοπούλου, Επίκουρη Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Original Title:
Επιβάρυνση, ανάγκες και ποιότητα ζωής (ΠΖ), οικογενειών με παιδί με Διαταραχή Φάσματος Αυτισμού (ΔΦΑ)
Translated title:
The impact of having a child with an Autism Spectrum Disorder (ASD) in Greek families, their needs and quality of life (Qol)
Background: The impact of having a child with an Autism Spectrum Disorder (ASD) includes disturbed family and social relationships, inability of family members to deal with pleasant activities, increased needs for support that are not met and increased psychiatric problems of the caregivers. The pervasive deficits of children with ASD
have a critical effect in daily life and Qol of life in parents.
Objectives: The purpose of this study was to investigate the burden and the needs of families with a child with ASD on mother’s everyday life and possible correlations between mother’s Quality of Life (QoL) and depressive symptomatology and child’s QoL. Parental coping strategies were examined in relation to maternal health and quality of life.
Methods: The present study included 143 mothers (aged 30-67years old) (mean age: 42.7±7 SD), Participants completed a demographic questionnaire and a semi-structured interview: 1. Α Family Needs questionnaire, was developed for the purposes’ of the current study; a part of this questionaire consists of items, from the Family Needs Survey, (Bailey & Simeonsson 1988). 2. Health Questionnaire, Child Quality of Life: Kidscreen – 52 parent version, 3."The World Health Organization Quality of Life Assessment - Bref self-administered instrument» WHO - QoL- Bref, 4. Strategies for dealing with stressful family situations. The Family Crisis Oriented Personal Evaluation Scales (“F- COPES”). 5. The Center for Epidemiological Studies - Depression Scale, (CES- D). 6. Parental anxiety of parents due to their parental role, Parental Stress Index (PSI),
Results: The 32.2% of the participants were university graduates. In 58.9% of cases there were 2 children in the family while 25.0% had only one child. The 42.0% of the participants had experienced a financial stalemate in the last 12 months more than half of mothers reported that are in good health (65.1%), while 54.5% admitted that they do have some health problems. 65.3% of mothers need more information about how children or adolescents grow up and 61.6% about the services that their child will need in the future. 38.0% of mothers need a lot of help to find a suitable school for their child and 35.0% to find more time for themselves and to talk with child teachers or therapists. Also, 34.2% of mothers need a financial help to find entertainment activities. 30.6% of mothers' families need help to foster cooperation between parents - schools - local communities.
Depression scores ranged from 0 -53 with an average of 18.3 (SD =11.0). There was a statistically significant negative association of the QoL and Depression Scale (CES-D) scale: "Overall Health and Health Assessment" [Pearson r = -0.47, p <0.001], "Physical health" [Pearson r = -0.48, p <0.001], "Psychological Health" [Pearson r = -0.73 p <0.001], "Social Relations" [Pearson r = -0.67, p <0.001] and "Environment" [Pearson r = -0.54, p <0.001].
There was a statistically significant negative correlation between the QoL (WHO-QoL Bref) and the F-COPES scale. In particular, the dimension "Social Relations" was found to positively relate to dimensions: "Reframing" [Pearson r = 0.24, p = 0.007] "Search for social support" [Pearson r = 0.23, p = 0.010]. The dimension "Physical health" was found to be positively related to the dimension: “Reframing”[Pearson r = 0.19, p = 0.033]. There was a statistically significant positive correlation between the "Passive Appraisal" dimension and the Depression Scale (CES-D) [Pearson r = 0.19, p = 0.038].
As children get older mother’s QoL score becomes lower and health status worsens; QoL score is lower when a health problem is present in mothers.
Conclusions: Having a child with ASD has a substantial impact on maternal wellbeing, and finances, and family life in general. Parents appear with a variety of needs for personalized information, which are not adequately covered by health professionals. Mothers of children with ASD present frequent physical and mental health problems and it seems that the presence of a child with ASD has a substantial impact on coping strategies. “Rreframing” and “passive appraisal” correlate with physical and mental health dimensions respectively. Mothers appear to be passive, believing that the problem will be eliminated if they wait. The need for support of families of children with ASD is pressing, and priority should be given to the funding, accessibility and improvement of the quality of public services for this population. It is very important and useful to strengthen formal and informal family support networks as well as to develop clinical assesment support, therapeutic, intervention, training and research of specialized units in various regions of the country.
Main subject category:
Health Sciences
Autism; Autism Spectrum Disorder; Children, Mothers, Family needs, Parents; Quality of life; Wellbeing; Parent - child relationship, Strategies, Family Crisis.  
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