Parents of autistic individuals have been known to have a lower overall quality of life (QQL) than those of typically developing children. We present the first Hungarian large-sample study whose objective was to explore the differences in QOL between parents of autistic individuals (AS) and those of neurotypical (NT) persons.

Based on the ABCX model we developed a questionnaire comprising standardized scales to characterize the life of parents involved. Our data came from parents of 842 individuals (ASD = 521, NT = 321) between 0 and 49 years. Battery deployed standardized instruments to examine quality of life (WHO-QQL BREF and Quality of Life in Autism questionnaire, QOLA). We assessed the families' socio-economic/demographic characteristics, parents' psychological well-being, the autistic/neurotypical individuals' characteristics, and the interventions.

Our data showed significantly lower QOL in parents of autistic individuals in all domains of questionnaires. We analyzed 20 relevant factors to uncover the predictors of parental QOL. We confirmed the existence of most but not all predictors present in earlier literature and identified intervention-related predictors.

Our study confirms the importance of supporting parents in their role, and of providing health and social supports that focus on quality of life, in addition to child care.

The purpose of this study was to develop and validate an ultra-short scale called the Quality of Life for Children with Autism Spectrum Disorder 3 (QOLASD-C3) from the full 16-item QOLASD-C scale. We first used network analysis to identify three core items to be retained on the QOLASD-C3 scale. Second, we used Cronbach's alpha and Pearson Product Moment correlations to determine the reliability and validity of the scale. Third, an optimal cut-off score of 6 was identified for the using receiver operating characteristic curve analysis. Finally, we used logistic regression to examine the similarities in the classification status based on demographic characteristics between the quality of life (QOL) status using the QOLASD-C and the QOLASD-C3 scales. Results were similar across the two versions and suggested variations in QOL status based on race/ethnicity, autism spectrum disorder (ASD) severity, and parents' socio-economic status. Implications for research and practice are discussed.

Neurodevelopmental disorders are a set of disorders that negatively affect the acquisition of skills in a variety of developmental domains, including motor function, learning, socialization, language and cognition. However, there is no information available on the standard of living of Ethiopian primary caregivers of children and adolescents with neurodevelopmental disorders. Therefore, this study aimed to assess the quality of life (QOL) and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders in Addis Ababa, Ethiopia.

A cross-sectional study was conducted during 1-30 May 2022. Systematic random sampling was used to obtain 352 samples. QOL was measured using the WHO Quality of Life Brief. The gathered information was coded, entered into EpiData 4.6.0.2 and analyzed with SPSS version 26. Multiple linear regression analysis was used to identify the correlates of QOL and the strength of the correlation was measured by β coefficient with 95% CI.

The mean score of the overall QOL was 62.61 with a SD of 5.17. The mean (±SD) scores for the physical health, psychological, environmental and social relationship domains of primary caregivers were 57.36±9.98, 66.98±9.39, 66.06±12.91 and 60.02±9.14, respectively. Age was significantly associated with physical domain (β=-0.25, 95% CI -0.43 to -0.07) and with environmental domain (β=-4.57, 95% CI -9.06 to -0.09). Being divorced/widowed was negatively associated with psychological health (β=-2.99, 95% CI -5.82 to -0.17) and social health (β=-0.62, 95% CI -1.33 to -0.10). The presence of medical illness was negatively associated with the physical health domain (β=-4.32, 95% CI -7.64 to -2.91) and the environmental domain (β=-3.11, 95% CI -5.71 to -0.51). Poor social support was negatively associated with psychological health (β=-3.25, 95% CI -5.89 to -0.61) and the social health domain (β=-3.39, 95% CI -11.3 to 4.6), and moderate social support (β=8.62, 95% CI 3.15 to 14.09) was positively associated with physical health. Depression (β=-6.32, 95% CI -11.96 to -0.67) and anxiety (β =-3.07, 95% CI -5.80 to -0.34) were negatively associated with physical health and the psychological health domain, respectively.

The findings from this study indicate that all dimensions of QOL of primary caregivers of children and adolescents with neurodevelopmental disorders in this study setting were compromised. Being divorced or widowed, lack of formal education, age, average monthly income, poor social support, depression, anxiety and the presence of medical illness were factors associated with QOL in all domains. This requires integrating a bio-psychosocial perspective, a positive mental health strategy and pharmaceutical therapies to enhance QOL for caregivers of children and adolescents with neurodevelopmental disorders.

This cross-sectional study aimed to assess Quality of life (QoL) of parents of children on the autism spectrum in Singapore and identify its associated factors. Parents of children (age ≥ 5 years) completed the Quality of Life in Autism scale which measures parental self-rated QoL (higher scores denote greater QoL), and the perceived impact of the child's autism-related behaviors on parents (higher scores denote lesser impact). Information on the child's degree of autism (measured by the Social Responsiveness Scale, second edition [SRS-2]), community and social participation and cognitive and adaptive functioning were also obtained. Participants were 86 parents with mean child age 6.3 years (SD 1.0). Univariate analysis results revealed greater participation in community and social events to be two modifiable factors associated with higher parental QoL. However, these factors were not found to be significant in the multivariate model. Higher autism features (represented by higher parent-rated SRS scores) was associated with a greater perceived impact of the child's behaviors by parents in both univariate and multivariate analyses. Of note, child's cognitive or adaptive skills were not significantly associated with either QoL measure. Equipping parents to handle autism-related behaviors can be useful to reduce their impact on parental QoL. Facilitating community participation for these children may positively influence caregiver QoL as well.

Parents of autistic children experience high levels of parental stress and low quality of life related to the demanding child caring burden they experience. Parent education and training programs are acknowledged to improve parental well-being and reduce parenting stress. In the framework of the Erasmus+ Integrative Autism Parents Training Project (IPAT), we developed the IPAT Training Module based on parents' expressed needs, in order to improve parental quality of life (QoL) and decrease their perceived stress. Sixty-two parents from four countries participated in the IPAT Module Training activity. We used WHOQOL-BREF and Perceived Stress Scale (PSS-10 version) for QoL and stress, respectively, before and after training and a study-specific questionnaire to assess participants' satisfaction. Parents' QoL improved significantly in the environment domain and specific items, while stress levels remained unmodified. Training appeared more advantageous for parents with lower initial QoL and those whose child had been enrolled in a special education program for an extended duration. Parents were quite satisfied, in particular those with lower initial social relationships QoL. Larger studies including a control group are necessary to support preliminary evidence provided by this study, identify additional effect moderators, and disentangle the contribution of different components of the training.

Jordan has a high prevalence of physical inactivity, a major risk factor for non-communicable diseases. Working mothers are a high-risk group who face significant barriers to physical activity and experience a decline in their quality of life.

This study aims to evaluate the potential impact of physical activity adherence on health-related quality of life and physical fitness among a sample of working mothers.

A Correlational, retrospective analytical design, was employed among a sample of working mothers (n=120), from Amman and was divided into two comparison groups. Data collection included a self-reported questionnaire using a demographic questionnaire, a health perception scale, the International Physical Activity Questionnaire short form, the International Fitness Scale, and the Quality of Life Brief questionnaire. The statistical analysis was independent t-test analysis, analysis of variance (One-way ANOVA), Pearson r correlation and regression used to estimate the prediction of dependent variables based on independent variables.

The results found a significant positive relationship between physical activity and overall quality of life and its domains (physical, psychological, and environmental); however, there was no statistically significant difference in the social domain. Adherence to physical activity was a significant positive predictor of quality of life. Moreover, the health perception level was a significant positive predictor. A t-test revealed a statistically significant difference between the physically active group and a sedentary group of working mothers regarding changes in Health-Related Quality of Life; physically active mothers are more likely to have better physical (p < 0.024), psychological (p < 0.001), and overall quality of life (p < 0.011). Furthermore, Physical fitness significantly predicted physical activity in the study results.

This study confirms the existence of positive correlations between physical activity and working women's quality of life and physical fitness. Mothers with higher levels of physical activity are more likely to have better physical, psychological, and environmental domains of quality of life and better physical fitness.

Parenting children with autism spectrum disorder (ASD) is widely identified to be associated with life-long impairment in parents' quality of life (QoL). However, there has been little information on the QoL of parents of children with ASD in the Jordanian context.

This study aimed to assess the QoL among mothers and fathers who have children with ASD in Jordan and to identify factors associated with it.

In this cross-sectional study, respondents were mothers and fathers of children with ASD attending autism rehabilitation centers in Amman. Data were collected from 206 participants using a validated questionnaire. Descriptive statistics, T-test, ANOVA and logistic regression, were applied.

Overall quality of life was low (mean= 2.32). The physical dimension scored the highest (mean =2.79), and the environmental dimension scored the lowest (mean= 2.06). Results indicated that fathers and parents with low education reported significantly lower QoL scores (p = .024 and 0.001, respectively).

Among parents of children with ASD, parents at risk for low QoL were recognized. Our results can be utilized to design interventions to support mothers and fathers at risk in Jordan to enhance their QoL.

A variety of psychosocial factors have been shown to affect the quality of life of families (FQoL).

This study aimed to assess the impact of mother's demographic characteristics, parental stress, illness perceptions about autism spectrum disorder (ASD), coping strategies, ASD severity and time since diagnosis on FQoL during the initial period following diagnosis (≤6 months).

Fifty-three mothers of children newly diagnosed with ASD completed the Beach Center Family Quality of Life Scale, the Autism Parenting Stress Index, the Brief Illness Perception Questionnaire and the Brief Coping Orientation to Problems Experienced Inventory. A descriptive analysis was conducted on the demographic characteristics of the family. Eta coefficients and Pearson's analysis were used to determine the associations between the variables and the FQoL dimensions. Hierarchical regression was used to determine whether variables explained a statistically significant family quality of life variance.

Pearson's analysis and eta coefficients indicated several correlations. Hierarchical regression analysis showed that higher parental stress related to core autism symptoms was associated with poorer FQoL (95% CI -0.08 to -0.02, P = 0.001), and higher perceived treatment control was associated with better FQoL (95% CI 0.04-0.16, P = 0.001). In addition, stronger perceived personal control was associated with higher physical/material well-being (95% CI 0.01-0.16, P = 0.022) and higher disability-related support (95% CI 0.30-0.61, P = 0.001). Higher family monthly income was associated with better FQoL (95% CI 0.08-0.027, P = 0.000), whereas marital status (divorced mother) was correlated with poorer FQoL (95% CI -0.68 to -0.16, P = 0.002).

Interventions should emphasise managing the disorder's characteristics and implementing psychoeducational and supportive programmes for parents, immediately after the diagnosis, to enhance FQoL.

The present study examined the influences of child-related stress, parental coping and social support on parental daily subjective well-being (i.e. positive and negative affect, life satisfactory) in Chinese families of children with autism spectrum disorder. For 14 days, a total of 76 parents (58 mothers) participated in the study and completed daily diaries. For mothers, child-related stress was related to lower life satisfaction; social support was related to higher life satisfaction that day. These daily relations were not found for fathers. Across all parents, avoidant coping was associated with higher negative affect and lower positive affect on the same day. Notably, daily positive coping was related to greater same-day positive affect as well as greater same-day and next-day life satisfaction. Interventions aimed at increasing positive coping and social support, and reducing child-related stress and avoidant coping are important to help parents maintain well-being, particularly for mothers of children with autism.

Research has shown that parents of children with autism spectrum disorder (ASD) suffered high levels of stress during the COVID-19 pandemic and faced poor family quality of life (FQOL). However, little is known about the inherent dynamic interaction between pandemic stress and FQOL, especially in the Chinese cultural context.

This study provides preliminary evidence by examining the relationships among pandemic stress, parental involvement, and FQOL for children with autism in mainland China.

A total of 709 parents of children with autism completed measures of FQOL, parental involvement, and pandemic stress. Structural equation modeling was employed to examine the interrelations among these variables.

Pandemic stress has direct effect and indirect effect mediated by parental involvement on FQOL. Two dimensions of pandemic stress had a direct effect on FQOL (β1 = 0.11; β2 = -0.55) and three dimensions had an indirect effect on FQOL through parental involvement (β1 = -0.097; β2 = 0.257; β3 = 0.114).

Stress related to the COVID-19 pandemic affects family quality of life for children with autism in complex ways. Policies may be developed to enhance parental pragmatic hopefulness in the anti-epidemic victory and alleviate negative physical and mental reactions caused by the pandemic.

Purpose: To examine (1) the association between low language (LL) and caregiver's health-related quality of life (HRQoL), (2) whether persistent LL affects caregiver's HRQoL and (3) whether child social-emotional-behavioural (SEB) difficulties attenuates the association between LL and caregiver's HRQoL.Method: Data were from the Early Language in Victoria Study (ELVS) and the Longitudinal Study of Australian Children (LSAC). Caregiver's HRQoL was measured using the EuroQoL-5 dimensions and the Assessment of Quality of Life-8 dimensions. Language ability was determined using the Clinical Evaluation of Language Fundamentals (CELF)-Preschool-2nd or 4th edition (ELVS) and the Peabody Picture Vocabulary Test-3^rd edition or CELF-4 recalling sentences subscale (LSAC). Child SEB difficulties were measured using the Strengths and Difficulties Questionnaire. Multivariable linear regression was used for the analysis.Result: At 11-12 years, an association between LL and reduced caregiver's HRQoL was found in LSAC, but not in ELVS. Persistent LL from 4-11 years seemed to not affect caregivers' HRQoL in either cohort. Child SEB difficulties attenuated the association between caregiver's HRQoL and LL.Conclusion: Both LL and SEB difficulties contributed to reduced caregiver's HRQoL at children age 11-12 years. Interventions supporting children with LL should consider caregiver's well-being in provision of care that meets families' needs.

Autism spectrum disorder is a neurodevelopmental disorder which is increasing across the globe. The disorder in children not only creates burden of care in caregivers but also leads to impaired quality of life of families.

To study the burden of care and quality of life in caregivers of children and adolescents with ASD.

Cross sectional study conducted in Child and Adolescent psychiatry outpatient services at a government centre in north India between September 2014 to August 2015. The sample consisted of 40 caregivers of children with Autism. Mean age of the caregiver's were 34.72 ± 6.32 years. Burden of care and quality of life were measured by Burden Assessment Schedule (BAS) and World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF) questionnaire respectively.

Mean burden of care on BAS was 71.73 ± 8.62 indicating quite a high degree of burden on the caregivers of ASD. Significantly higher burden was reported by caregivers belonging to low income families and caregivers of children in age group 6-12 years. A positive correlation was observed between severity of autism and burden of care in caregivers. The study also found that as the severity of symptom increases the QoL in caregiver worsens.

Caregivers of children with ASD suffer from high burden of care and impaired QoL.

The present study investigated the age of diagnosis, treatment and demographic factors of Chinese children with autism spectrum disorders (ASD), to provide a scientific basis for the early detection, diagnosis, and intervention of ASD.

A total of 1500 ASD children aged 2-7 years old from 13 cities in China were administered questionnaires to examine their diagnosis, treatment, and basic family information. The Childhood Autism Rating Scale (CARS) was used to measure the symptoms and severity of ASD children, and the Children Neuropsychological and Behavior Scale-Revision 2016 (CNBS-R2016) was utilized to measure neurodevelopmental levels of ASD children.

We found that for children with ASD, the median (p25, p75) age for the initial detection of social behavioral developmental delay was 24 (18, 30) months, while the age for the initial diagnosis was 29 (24, 36) months and the age for the beginning of intervention was 33 (27, 42) months. Multiple linear regression (MLR) analysis suggested that in children with ASD whose parents were divorced, separated, or widowed, or whose mothers were engaged in physical work, the initial detection of social behavioral developmental delay happened later. For the children with ASD who lived in urban areas, had higher levels of ASD symptom severity or whose parents were not divorced or separated, the age for the initial diagnosis was earlier. For the children with ASD who lived in urban areas or whose mothers had received higher level of education, the earlier age for the beginning of intervention was observed, while for those with ASD whose mothers were engaged in physical work, the age for the beginning of training was later.

It is recommended to actively carry out health education of ASD and strengthen the support for ASD families to enhance their rehabilitation level.

Parenting a child with autism spectrum disorder (ASD) can be tremendously challenging. It is important to identify factors associated with parenting stress. This study examined the indirect effect of parental dispositional mindfulness on their anxiety and depressive symptoms and family quality of life (FQOL) through mindful parenting and then parenting stress. Seventy-nine Chinese parents (24.1% fathers) of children with ASD aged 3-13 years completed self-report questionnaires. Results indicated that higher dispositional mindfulness was associated with higher mindful parenting, which was related to lower parenting stress, and further related to lower anxiety and depressive symptoms and higher FQOL. The findings provide valuable insight into the potential pathways through which general mindfulness and mindful parenting may positively impact parental outcomes.

This cross-sectional study explored stressful situations of caregivers related to life events of their children suffering from neurodevelopmental disorders along with potential contributing factors. A total of 906 caregivers of children with diagnosed neurodevelopmental disorder, from eight administrative districts and two city corporation areas in Bangladesh were interviewed. The Family Stress and Coping Interview scale was used to evaluate parenting stress. The diagnosis of neurodevelopmental disorder at the outset, feelings about the cause of the disorder, future planning for employment and accommodation for the child and dealing with child sexuality were some important stressful situations for parents. Parenting stress is found to be higher among female [regression coefficient (B) = 5.09, p < 0.001] and less educated caregivers [B = 2.69, p < 0.01]. Increasing age of child [B = 0.82, p < 0.001] and diagnosis of neurodevelopmental disorder before child's second birthday [B = 4.22, p < 0.001] are also associated with higher parenting stress.

The present study investigated the actor-partner effects of parenting stress (PS) on quality of life (QoL) among parents (96 couples) of children with autism spectrum disorder (ASD). Data were collected using the QoL Scale and the PS Index. Structural equation modeling was also utilized to test the hypothesis. The results revealed the effects of PS in each parent on mental QoL of that parent. Maternal PS further shaped physical QoL in mothers. However, PS in one parent did not influence QoL of his or her partner. Accordingly, mental QoL had a mediating role between PS and physical QoL. It was ultimately suggested to take account of QoL among parents in addition to the treatment of children with ASD.

Research shows that parents of children with autism spectrum disorder (ASD) are burdened with childcare responsibilities and at increased risk for elevated stress and poor family quality of life (FQOL). Little is known, however, about the dynamic interactions between mothers' and fathers' perceived parenting stress in relating to parental involvement and FQOL, especially in the Chinese cultural context.

This study examined the intrapersonal and interpersonal effects of parenting stress on parental involvement and FQOL for families of children with ASD in mainland China.

A total of 210 Chinese couples (total N = 420) completed measures of caregiving involvement, perceived parenting stress, and FQOL. The Actor-Partner Interdependence Mediation Model (APIMeM) was employed to examine the dyadic relationships among the variables.

Both parents' parenting stress was negatively associated with their own involvement and FQOL. Moreover, fathers' parenting stress was indirectly related to mothers' perceptions of FQOL through their involvement in the care of their child with ASD.

The findings highlight the important roles of fathers' parenting stress and involvement in affecting their own and their partners' satisfaction with FQOL within Chinese families raising a child with ASD.

Parents of children with Autism Spectrum Disorder (ASD) exhibit higher levels of parental stress than parents of typically developing children. The most frequently used tools to assess parental stress is the Parenting Stress Index (PSI) or its Short Form (PSI-SF).

This study was designed to test the validity of the PSI-SF in French parents of children with ASD (N = 370).

First, a confirmatory factor analysis was conducted to test the initial 3-factor structure (36 items) which indicate a poor model fit. Then, an exploratory factor analysis was performed and convergent validity was assessed.

A 3-factor structure (21 items) explaining 44 % of the variance was observed. Dimensions were moderately correlated and exhibited good internal consistency. Convergent validity was checked through the PSI-SF association with anxiety and depression (HADS), quality of life (WHOQOL-Brief) and appraisal of being a parent of a child with ASD (ALES).

Future research should use the full version of the PSI-SF and examine its factor structure. More studies on the factor structure of the PSI-SF are needed to find out if it is a suitable tool for measuring stress in parents of children with ASD in France.

Objectives We investigated the quality of life (QOL) in parents of children with late treated phenylketonuria (PKU) and its associated factors. Methods We conducted a cross sectional study in the reference center of inherited metabolic disease in Tunisia. We used the Tunisian version of the 36-item short-form health survey questionnaire (SF-36). We compared variables in the groups with and without impaired QOL and the SF-36 scores between subgroups of parents and children and between our sample and the Tunisian general population based on published data. We looked for associations between SF-36 scores and quantitative variables. Linear regression and logistic binary regression were used for multivariate analysis. Results Sixty-five parents from 42 families participated. QOL was impaired in 61% of them. The mean SF-36 score was 55.3 ± 25.07. The physical component sub-score was higher than that reported in the Tunisian general population (63.66 ± 27.77 vs. 50.11 ± 8.53; p<0.001). The mental component sub-score was comparable to that reported in the Tunisian general population (46.99 ± 25.94 vs. 47.96 ± 9.82; p=0.830). Gender (mothers) (p=0.008), low monthly income (p = 0.027), low education (p=0.011), and autism in PKU children (p = 0.001) were associated with impaired QOL. Conclusions We identified at risk parents for altered quality of life among parents of PKU children. Our findings were used to develop a psychological and social support strategy for at-risk parents and to promote the implementation of newborn screening of this treatable disease in our low-income country.

Systems of care emphasize parent-delivered intervention for children with autism spectrum disorder (ASD). Meanwhile, multiple studies document psychological distress within these parents. This pilot longitudinal randomized controlled trial compared the parent-implemented Early Start Denver Model (P-ESDM) to P-ESDM plus mindfulness-based stress reduction (MBSR) for parents. We evaluated changes in parent functioning during active treatment and at follow-up.

Participants included children (<36 months old) with autism spectrum disorder and caregivers. Participants were randomly assigned to P-ESDM only (n = 31) or P-ESDM plus MBSR (n = 30). Data were collected at baseline, midtreatment, the end of treatment, and 1, 3, and 6 months posttreatment. Multilevel models with discontinuous slopes were used to test for group differences in outcome changes over time.

Both groups improved during active treatment in all subdomains of parent stress (β = -1.42, -1.25, -0.92; P < 0.001), depressive symptoms, and anxiety symptoms (β = -0.62 and -0.78, respectively; P < 0.05). Parents who received MBSR had greater improvements than those receiving P-ESDM only in parental distress and parent-child dysfunctional interactions (β = -1.91 and -1.38, respectively; P < 0.01). Groups differed in change in mindfulness during treatment (β = 3.15; P < .05), with P-ESDM plus MBSR increasing and P-ESDM declining. Treatment group did not significantly predict change in depressive symptoms, anxiety symptoms, or life satisfaction. Differences emerged on the basis of parent sex, child age, and child behavior problems.

Results suggest that manualized, low-intensity stress-reduction strategies may have long-term impacts on parent stress. Limitations and future directions are described.

: One of the most important areas of nursing care delivery is "dignity." Because of the increase in hospitalized infants in neonatal intensive care units in recent years, this has led to an increased focus on "family care and maternal dignity." Given the importance of understanding the phenomenon of maternal dignity in order to improve cooperation in the care of their infants and promote family-centered care, this study aims to describe the lived experience of hospitalized mothers of infants within the context of dignity. This is a descriptive phenomenological qualitative research study. Twenty mothers were invited to participate in this study using purposeful sampling. The data were generated through individual, semistructured interviews and field notes were developed during the interviews. Data were analyzed using the Colaizzi method.Findings of the study were presented in 3 themes: "privacy," "respecting individual identity," and "authority," and 7 additional subthemes. Mothers in this study needed to take care of their infants in an environment where their personal privacy is preserved, their individual identity is respected, and they have sufficient authority in obtaining medical decisions. It is essential that healthcare teams and policy makers of health organizations provide an appropriate supportive environment in terms of promoting mothers' dignity in different dimensions and subsequently improving family-centered care.

Four databases were searched to identify studies published by Arab researchers on parents' perceptions of autism spectrum disorder and studies conducted by US researchers and published in systematic reviews of this topic. The electronic search resulted in 14 studies published by Arab researchers and 55 studies published by US researchers. The results showed that autism spectrum disorder has many of the same effects on Arab and American families. Six major areas were identified in the results. Financial difficulties associated with raising children with autism spectrum disorder were mentioned more in Arab studies than in US studies. Arab studies had more emphasis on gender than US studies. The results related to quality of life of parents of children with autism spectrum disorder in Arab studies were equivocal. US studies included comparisons with families without a child with autism spectrum disorder, and addressed factors that were associated with quality of life indicators. More health, educational, and social services were available in United States than in Arab countries, but some frustration was reported by US parents in obtaining appropriate services in some studies. A higher percentage of Arab studies mentioned the role of religious faith than US studies. Finally, social stigma was evidenced in both cultures, but not much research was available.

To evaluate the quality of life (QoL) and burden of primary caregivers of children and young adults (PCCYAs) with and without disabilities.

A cross-sectional study was carried out with sample composed of 336 PCCYAs with cerebral palsy (CP; n = 84), Down syndrome (DS; n = 84), autism spectrum disorder (ASD; n = 84), and without disabilities (control group: CG n = 84), matched by gender and age. The burden of caregivers was assessed with the Zarit Burden Interview (ZBI), whereas QoL was assessed using the WHOQOL-BREF instrument.

QoL and burden of CG presented better results compared to groups with disabilities, with the lowest environmental domain of all study groups (P <.001). The prevalence of burden was moderate for PCCAs of groups with disabilities. There was association between all WHOQOL-BREF and ZBI domains and variables age, schooling, occupation and per capita income (Spearman's correlation coefficient, P <.05). There is a negative impact on WHOQOL-BREF, with an increase in the level of burden of PCCAs with disabilities.

The majority of PCCYAs were unemployed married mothers, with low schooling and health problems. Older caregivers experience even higher burden and greater impact on QoL.

The aim of this study was to assess the respective weight of individual and environmental factors on quality of life (Qol) of parents of children with autism spectrum disorders (ASD). Few studies have investigated both individual and environmental predictors of Qol but to our knowledge, none of them has considered the child's and parents' characteristics, family context and services available in the same design. Participants were 115 parents (73 mothers and 42 fathers) of children with ASD aged from 3 to 10 years. Hierarchical regression analyses were conducted to investigate predictors of parental Qol among child-related, parent-related and environmental factors. Findings indicate that a higher Qol is associated with a good quality of interaction in marital and parent-grandparents dyads, no family medical history and access to psycho-educational interventions for the child, regardless of child's developmental quotient, comorbidity, parent sex and working time. This final model best fits the data and explains 31.5% of the variance of parents' Qol. This study highlights that it is crucial to consider both individual and environmental variables as potential protective factors of parental adjustment. An ecological approach seems to be relevant to understand which parenting resources should be targeted in support programs.

To describe the quality of life (QOL) of South African parents caring for children with autism spectrum disorder (ASD) as compared with parents of typically developing (TD) children from the same community.

A cross-sectional study was done evaluating the QOL of parents of 52 children (26 parents of children with ASD versus 26 parents of TD children) using a structured measure, (World Health Organization Quality of Life Assessment-BREF).

The mean age of the children with ASD was 64.9 months (SD 14.5) versus 60.1 months (SD 13.5) for TD group. There was a male predominance among group of children with ASD (48 boys, four girls). The mean parental age of the ASD group was 32.9 years (SD 7.8) compared with 33.8 years (SD 6.8) for the TD group. As compared with parents of the TD children, parents of children with ASD had lower mean QOL scores in the four QOL domains: physical, psychological, social and environmental health (p<0.0001). the domain where the discrepancy between groups was greatest was the physical domain Where the mean score was 52.1 (SD 18.7) in the ASD group and 92 (SD 10.4) in the TD group. Lower income, severity level of ASD and lack of access to school placement of children with ASD were found significantly associated with parents' QOL domains.

QOL of parents of children with ASD is significant lower than that of the parents of their TD peers across all domains and is an important component in management of the family which needs to be explored and addressed.

This study aimed to investigate the quality of life of parents of a child with autism spectrum disorder in Quebec.

Seventy-seven participants completed a questionnaire with socio-biographic information and five self-assessed scales, to measure perceived stress, social support and control, coping strategies, and quality of life.

Perception of their child's autonomy level, of the severity of the disorder, of the family's income, as well as changes in their professional or familial organization influenced parents' quality of life. Perceiving their situation as a threat predicted poor quality of life, whereas satisfaction of social support predicted good quality of life. In addition, parents who used problem solving and support-seeking coping strategies had a better relationship with their child, whereas those who used more emotion-centered coping strategies struggled. Lastly, parents who felt they had the power to contribute to their child's development were more satisfied and less disturbed.

Beyond the parents' actual situation, our results underscore the importance of paying attention to their own perception of the situation in order to provide them with appropriate support.

Autism Spectrum Disorders (ASD) are characterized by particularities of cognitive and socio-adaptive functioning. Daily, they require specific interventions for the disabled person as well as support for parents who often report deterioration in their physical and mental health. To this end, the latest Autism Plan 2013-2017 highlights the need "to help families to be present and active alongside their loved ones, to avoid situations of exhaustion and stress and to enable them to play their role fully in the long term". The support devices must therefore be based on an analysis of the parents' needs and propose multiple intervention modalities, which respond to the complexity of the caregiving mission. Therapeutic education (TE) seems to answer to these different elements by proposing a global approach improving the development of child-centered skills and the educational challenges (self-care skills) but also of skills centered on the projects and the fulfillment of the parent (psychosocial skills). The ETAP (Therapeutic Education Autism and Parenting) program is an initial TE offer intended for parents of children with ASD aged between 3 and 10years. It consists of seven group sessions and two semi-structured interviews, called educational diagnosis. A booster session is also proposed three months after the last session. It was developed following rigorously the guidelines on program construction, published by the High Authority of Health. In addition, it is based on an assessment of the needs of the parents, an in-depth analysis of the literature and the opinion of nine experts in this area. The objective of this study is to evaluate the effectiveness of the ETAP program on the quality of life and anxio-depressive symptoms of parents of a child with ASD. To our knowledge, the ETAP program is the first TE program in France for parents of children with an ASD that has been evaluated. Our sample is composed of 40 participants, including 30 parents who participated in the ETAP program ("ETAP Group"), compared to ten controls who did not participate, but who are on a waiting list ("Control Group"). Each participant completed a Quality of Life Questionnaire (WhoQol-Brief) and an Anxiety-Depressive Symptomatology Questionnaire (HADS) prior to the start of the program (T1) and after the session 7 (T2). Preliminary analyses show a good intergroup matching on socio-demographic and medical data. Moreover, the two groups are not significantly different at T1 over the set of dependent variables measured. Our results show an improvement in the quality of life of the depressive symptomatology in the participants. On the other hand, we did not notice any significant decrease in anxiety symptoms. However, when we consider the proportion of parents with a significant anxiety state (in terms of the clinical threshold of HADS, score ≥10), we see that it tends to decrease after the program only for the group ETAP. These data should be interpreted with caution because of their preliminary nature and the small size of our sample. However, the first steps are encouraging and confirm the value of the therapeutic education model for parents of children with ASD. The different information given during the sessions takes into account the previous representations, knowledge and skills of the parent. Thus the program promotes the upholding and the development of individual resources in parents. In addition, the psychosocial skills targeted also to make access easier to available environmental resources. Finally, in a more indirect way, the ETAP program also aims to maintain or restore a positive parenthood and individual identity and the progressive development of new ways of to interact with the environment. An adaptation of the Hobfoll resource conservation model is proposed by the authors to formulate hypotheses on the mechanisms of action of the ETAP program.

Families with a child diagnosed with autism spectrum disorder (ASD) often utilize a variety of professional services. The provision of these services has many potential benefits for families; however, these services also place demands on parents, particularly mothers, to access, navigate and participate. Little is known about how involvement with these services and service systems influences the psychological wellbeing of mothers of children diagnosed with ASD. We examined the relationship between professional services and psychological wellbeing for mothers of children diagnosed with ASD.

Mothers (n = 119) of children (mean child age 10.1 years; range 2-24 years) diagnosed with ASD anonymously completed a comprehensive survey. The survey included data related to maternal psychological wellbeing, professional services received and perceptions of these services, and child, mother and household characteristics.

Regression analyses revealed that maternal psychological wellbeing was positively associated with the perceived continuity of services, and negatively associated with the number of professionals involved. Child and maternal age, and household income were also statistically significant predictors of maternal psychological wellbeing.

The study findings draw attention to the potentially negative impact of systems-level challenges, especially fragmentation of services, on maternal psychological wellbeing, despite positive front-line services. In particular, our data suggest that psychological wellbeing among mothers of children with ASD may vary more as a function of service system variables than practitioner-level or child-level variables.

Previous research has supported mindfulness-based interventions (MBIs) to enhance quality of life (QOL) in different populations, but no studies have been found to examine the effectiveness of MBIs on QOL among parents of children with ASD.

The purpose of the current study was to examine the effectiveness of brief MBI on perceived QOL and positive stress reappraisal (PSR) among parents of children with ASD.

A quasi-experimental, with nonequivalent control group design was used. One hundred and four parents of children with ASD were equally assigned to the intervention and control groups. The study groups were matched on measures of their gender and age, and level of severity of ASD in children. The intervention group participated in MBI program for 5 weeks, while the control group had not attended the program.

After the intervention program, results of paired samples t-test indicated that parents in the intervention group demonstrated significant improvements in measures of psychological health domain of QOL, social health domain of QOL, mindfulness, and positive stress reappraisal with medium to large effect size (P<0.01). The control group demonstrated improvement in measures of the dependent variables with small effect size.

MBI is culturally adaptable, acceptable, and effective method to improve QOL and PSR in parents of children with ASD.

The increasing life expectancy of the population prompts an array of health conditions that impair an older adults' quality of life (QoL). Although demographics and spirituality have been associated with QoL, limited literature elucidated the exact mechanisms of their interactions, especially in a culturally-diverse country like Philippines. Hence, this study determined the relationship among socio-demographics, spirituality, and QoL of Filipino older adults in a community and institutional setting.

A predictive-correlational study among 200 randomly-selected community-dwelling and institutionalized older adults was conducted, with a 99% power and a medium effect size. Data were collected using a three-part questionnaire from September to November 2015. The questionnaire was composed of the robotfoto, Spirituality Assessment Scale, and modified Older People's Quality of Life which assessed socio-demographics, spirituality, and QoL.

Analysis showed that institutionalization in a nursing home positively and negatively affected spirituality and QoL, generating an acceptable model (χ(2)/df=2.12, RMSEA=0.08, and CFI=0.95). The negative direct effect of institutionalization on social relationship, leisure, & social activities QoL (β=-0.42, p<0.01) also initiates a cascade of indirect negative effects on both spirituality and QoL dimensions.

The development of a structural model illustrating the interrelationship of socio-demographics, spirituality, and QoL helps healthcare professionals in predicting facets of spirituality and QoL that can be compromised by living in a nursing home. This understanding provides impetus in evaluating and refining geriatric healthcare programs, policies, and protocols to render individualized, holistic care in a socially-cohesive environment among older adults.

In response to the dramatic change in the perception of fatherhood and the significant expansion in fatherhood research, this study came to fill the gap in literature and examine the possible mediation and moderation effects of coping in the relationship between fathers' of children with autism parenting stress and quality of life (QoL). Mediation and moderation effects were examined using multiple programs and software which included hierarchical regression, structural equation modeling and special Macros added to the analysis programs to confirm the findings. None of the investigated coping strategies could mediate or moderate the stress-QoL relationship among the 101 participating fathers. This study provides interesting information on how the stress-coping-QoL relationship among fathers of children with autism can be affected by the nature of their stress provoking situation, their individual characteristics, the environment and its demands and resources, and the way fathers perceive and apply their coping responses.