Background: The psychological stress of parents and improving family quality of life (FQoL) are continuing concerns for families of children with intellectual disability. We need to identify further ways to reduce their stress and improve their FQoL in China. Method: Examine the interrelations between psychological stress, parental involvement, and FQoL for parents with intellectual disability in mainland China. Four hundred sixty seven parents of children with intellectual disability completed instruments measuring variables. Structural equation modelling (SEM) was employed to examine the interrelations. Results: Psychological stress, directly and indirectly, influenced parental involvement in FQoL. Physical and mental response (PMR) and risk awareness (RA) had a positive direct effect on FQoL, and optimistic hope (OH) had a negative effect on FQoL. Conclusions: Psychological stress affects FQoL of parents with children with intellectual disability in complex ways. Policies should be developed to help parents with children with disability decrease stress and develop scientific parental involvement.

Previous research shows that children and young people with neurodevelopmental conditions experience greater challenges accessing care in hospitals and having their health needs met.

To elicit experiences of parents of children with neurodevelopmental conditions using a new perioperative pathway.

Parents of children accessing an adapted perioperative clinical pathway in a tertiary children's hospital between July 2019 and December 2020 were invited to participate. A mixed method study was conducted comprising a short survey questionnaire followed by telephonic interviews.

From 67 postal surveys sent out, 20 were completed. Six out of 20 parents participated in phone interviews and one parent submitted written prose. Parents were positive about their experiences. Six themes emerged: Negative past experiences (highlighting the need for adapted perioperative pathways); Reasonable adjustments (improving child and parent's hospital journey); Facilitating communication, convenience and collaboration; Parent's satisfaction and relief; Barriers to overcome and Areas in need of improvement were discussed.

Parents of children with neurodevelopmental conditions report great satisfaction and relief from their experiences of a more efficient, streamlined and stress-free way for their child to have tests or procedures done. Parents report improved communication, convenience and collaboration with staff resulted in timely, safe and high-quality care.

The impact of autism spectrum disorder (ASD) can be far-reaching for families. Research has shown that neurotypical (NT) siblings can experience negative and positive implications of ASD in their lives. However, researchers have not fully captured the factors associated with successful adaptation to the range of experiences, particularly regarding NT siblings and the relational support from and communication with their parents.

We utilized an interpretive phenomenological analysis to illuminate and better understand NT siblings' experiences of parental support and communication.

Analysis of qualitative semi-structured interviews with seven families of parents with at least one sibling over the age of 10 (N = 22) yielded four significant themes: (a) targeted NT sibling time, (b) targeted NT sibling communication, (c) sibling expectations, and (d) understanding autism.

The findings regarding relational support patterns suggest that NT siblings' experience with autism is positively influenced by parents who dedicate time to the NT siblings, communicate openly with them, and educate them about autism.

The purpose of this project was to investigate potential correlates of family life impairment in families of young autistic children. This project incorporated measures of specific child and parent challenges in addition to a commonly used unidimensional measure of autism characteristics. In this way, we could assess whether such challenges explain variance in family life impairment, and whether their inclusion diminish associations between autism characteristics and family life impairment. Cross-sectional data were collected from 564 parents of autistic children aged 2 to 5 years who participated in a larger online study. Participants completed measures on child characteristics (autism characteristics, emotion dysregulation, speaking ability, flexibility, and sleep problems), parent depression, and family life impairment, using the Family Life Impairment Scale (FLIS). Multiple linear regression models were generated to examine whether any of the independent variables were associated with the four domains of the FLIS. Models controlled for child age and sex, parent education, and single-parent homes. All independent variables were associated with impairment in one or more FLIS domains. None of the primary independent variables were significantly associated with positive growth. More overt characteristics and behaviors (e.g., autism characteristics, reactivity, speaking ability, and flexibility) were associated with impairment in domains that reflected a family's ability to navigate the community. However, sleep challenges and parent and child emotional difficulties were most strongly associated with parent impairment. Findings suggests that families may have different needs across contexts and provide new avenues through which they might be better supported.

Although sleep is a modifiable health behavior linked to health and daytime functioning, studies have limited exploration of how mother and child-related factors interplay with mothers' sleep disturbance in mothers of children with developmental disabilities.

We aimed to explore the nature of sleep disturbances, their impact on health and daytime functioning, and strategies used to promote restful sleep in mothers of children with developmental disabilities.

Using a qualitative descriptive approach, 13 mothers of school-aged children (6-12 years) with developmental disabilities who reported poor sleep quality completed semi-structured interviews. Interviews were transcribed, followed by thematic analysis.

Four themes were revealed: (1) I haven't slept well in years; (2) My child doesn't sleep well; (3) Being a mother of a child with a special need; and (4) Different strategies used to sleep better. Mothers reported chronic sleep disturbances that often started with the birth of their children and the negative effect of sleep disturbance on their health and daytime functioning. Mothers attributed their children with developmental disabilities' sleep problems and chronic stress associated with daily caregiving as reasons for their sleep disturbances. Mothers tried various sleep-promoting activities to improve their sleep; they remained frustrated with not having consistent solutions and desired to learn specific strategies to manage sleep for themselves and their children.

Our findings highlight the need to develop sleep health interventions, including strategies to reduce mothers' stress and manage their children with developmental disabilities' sleep problems, which may improve sleep and prevent adverse health outcomes.

The quality of life (QoL) of families caring for children with neurodevelopmental disorders is influenced by the severity of the disorder, family support, and access to specialized services. Parental stress also affects family dynamics and QoL due to the additional demands of care, particularly focusing on the management of activities of daily living (ADLs). This study aimed to analyze the relationship between parents' QoL and stress, involving 46 parents of children aged 3 to 12 years with neurodevelopmental disorders, while also examining the relationship with the performance in ADLs, sensory processing, and executive functioning of children with neurodevelopmental disorders. Significant positive associations were found between factor 1 of the "Assessment of Sensory Processing and Executive Functions in Childhood" (EPYFEI) with perceived stress (r = 0.401, p ≤ 0.01), and parents physical component summary (PCS) (r = 0.330, p ≤ 0.05). Significant negative correlations were observed between ADL performance and parents' physical component summary (PCS) of SF-12 (r =  - 0.356, p ≤ 0.05). Conversely, a significant negative association was found between factors 1 and 4 of the EPYFEI and ADL performance (r =  - 0.392, p ≤ 0.01 and r =  - 0.660, p ≤ 0.01). Furthermore, a significant positive association was found between parents' perceived stress and the PCS of SF-12 (r = 0.471, p ≤ 0.01), and a negative association between perceived stress and parents' mental component summary (MCS) (r =  - 0.300, p ≤ 0.05). The study revealed that QoL and parental stress are closely linked to functioning in ADLs and executive functioning of children with neurodevelopmental disorders. Interventions to strengthen these areas might improve parents' well-being and QoL. Additionally, it underscores the importance of teaching these parents stress management strategies.

Elevated levels of parenting stress have been reported in parents raising an Autistic child. Previous studies have identified a multitude of predictors of parenting stress, including both child-related and parent-related factors, though findings across studies are not always in agreement. In the present study we investigate the determinants of parenting stress using a Network Analysis approach, which is then used to inform a subsequent structural equation model. New Zealand parents (n =  490) of a child diagnosed with Autism Spectrum Disorder (ASD) provided data on their Autistic child (e.g., ASD core symptoms, problem behaviours) and themselves (i.e., parenting stress). The analysis revealed that both child and parent demographic factors were poor predictors of parenting stress, while the child's current language and communication ability were correlated with diagnostic age and parenting stress. An earlier diagnostic age, in turn, suggested better behavioural and emotional outcomes for children. Overall, the Network Analysis showed itself to be an informative approach to understanding parenting stress in the ASD context. Findings further advocate for the implementation of ASD-related and language-related interventions as early as possible, and that language delays during early infancy justify prompt clinical assessment.

The first year of parenthood is considered to be a challenging period, associated with the transformation of family relations. The links between family relations and parenting are widely studied. However, in most research only a limited number of indicators is investigated, and there is a lack of data on the agreement between mothers' and fathers' evaluations of family relations. The aims of the present study were to explore (1) the structure and measurement invariance of marital relations and parenting constructs for mothers and fathers; (2) the associations among the measures of marital relations and parenting in mothers and fathers; (3) the agreement between mothers and fathers in their perception of marital relations, as well as cross-parent cross-measure associations of marital relations and self-rated parenting; (4) average differences between the parents in their perception of marital relations and parenting. The data from 352 Russian-speaking married couples participating in the Wave 3 of the Prospective Longitudinal Interdisciplinary Study (PLIS) were collected when the children were 9 months old. Seven measures of family relations (marital relations, grandparents' support) and nine measures of parenting were obtained. The statistical analyses included the exploratory factor analysis, assessment of measurement invariance, comparative and correlational analysis. The result showed that measures were organised into coherent factor-based groupings: (1) marital relations, (2) support from grandparents, (3) childcare and affection, and (4) harsh parental discipline. Six of 12 measures showed partial scalar invariance between mothers and fathers. Moderate within-measure correlations were observed between mothers' and fathers' assessments of family relations; and weak correlations-for parenting. Mother-father cross-measure correlations were moderate for family relations, but negligible for parenting. Small to moderate average differences between mothers and fathers were found for all measures. The results highlight the need to consider similarities and differences between mothers' and fathers' experiences in future research and practice.

We assessed parent stress and competence outcomes from participation in a randomized controlled trial of a modular behavioral intervention (Modular Approach for Young Autistic Children; MAYAC) compared to a treatment-as-usual comprehensive behavioral intervention (CBI). Throughout their participation, parents of military families were included in their child's treatment (e.g., identifying goals, learning strategies to support their child) and reported on their feelings of stress using the Parenting Stress Index-4, Short Form (PSI-4), as well as their feelings of satisfaction and efficacy as a parent on the Parenting Sense of Competence (PSOC) scale. A linear mixed model evaluated the differences in stress and competence from baseline to each assessment period through follow-up. There were no significant differences between groups in stress or competence ratings; however, there were within-group changes in both treatment arms over the course of the trial. In both groups, parent stress decreased, and competence increased over time, continuing to suggest that behavioral analytic intervention for young children with autism can promote positive parent outcomes. Trial Registration: ClinicalTrial.gov identifier: NCT04078061.

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.

Raising children with autism spectrum disorder (ASD) has consistently been found to be challenging for parents. However, available studies have mainly focused on mothers, raising questions about fathers' involvement in raising children with ASD. Indeed, fathers' involvement has consistently been reported as fundamental to the development of children with ASD. Thus, it necessitates extensions of Western-dominated literature to novel contexts such as the United Arab Emirates (UAE). The purpose of this study, therefore, was to explore the extent and predictors of fathers' participation in the nurturance of children living with ASD.

The survey was completed by 177 fathers raising children with ASD in the UAE and was based on the revised 27-item Fathers' Involvement in Development and Rehabilitation Scale. The Statistical Package for Social Science was used to compute means and perform a multivariate analysis of variance and hierarchical multiple regression.

Fathers' ratings were high on involvement: attitude, support, and participation in training to assist their children with ASD. Also, support and participation in training significantly contributed to the variance in attitude towards children with ASD. Moreover, the place of residence of participants made a significant contribution to the variance in attitude towards children with ASD.

There is a need for policymakers to capitalize on the gains already made in creating a favorable environment for the development of children with ASD in the UAE. Regular engagement between policymakers and fathers could enhance their engagement in raising their children.

The literature highlights the importance of parental involvement in autism treatment. However, much research has predominantly focused on child outcomes and cognitive dimensions. This study explores the impact of an early intensive intervention with parental involvement, focusing on changes in parents' affective exchanges. Notably, given the paucity of studies on fathers in the intervention context, this study examines the comparative trajectory of change considering both caregivers.

Twenty autistic preschoolers were monitored for one year during a parental-based intervention. Child-mother and child-father play interactions were coded with the Emotional Availability Scales at baseline and at 12 months. Repeated measures linear mixed-effect models were employed to investigate time and caregiver effects and their interaction.

Results highlighted both similarities and differences in change trajectories between caregivers. Parental sensitivity, structuring, and non-intrusiveness significantly increased for both parents with fathers showing more prominent gains in structuring the interaction while being non-intrusive. Child responsiveness and involvement significantly increased, showing similar trajectories with both caregivers. Children were generally more involved while interacting with their fathers.

Parent-child interactions with caregivers evolved toward more adaptive exchanges regarding emotional availability for children's and parents' dimensions. Fathers appeared to be particularly receptive regarding acquiring structuring abilities and non-intrusive behaviors. Our results underscore the importance of investigating parental features as well as the importance of actively involving caregivers to support distal outcomes and generalization.

Resilience in families of autistic children and children with intellectual disability is associated with factors such as family functioning, social support, and financial strain. Little is known about family resilience during the COVID-19 pandemic when many resources were limited. This study examined the association of family resilience with child characteristics, family resources, and socioecological factors during the pandemic. Data collected during the COVID-19 pandemic from 734 United Kingdom parents/caregivers of children who are autistic and/or have intellectual disability were analyzed using path analysis. Greater family resilience was significantly associated with fewer child behavior problems, absence of intellectual disability, higher financial status, and greater family functioning, though not school support. These factors might guide future research and practices to support vulnerable families at risk of low resilience.

Family members of children with developmental disabilities on average report poorer family functioning and mental health. Positive Family Connections is a co-produced, positively-oriented, family-systems support programme for families of children with developmental disabilities aged 8-13. We investigated experiences of Positive Family Connections, and the processes involved in change.

We conducted semi-structured interviews with eight family carers who took part in Positive Family Connections and nine facilitators. Data were analysed using framework analysis.

Programme recipients' and facilitators generally reported positive experiences of Positive Family Connections and described beneficial effects on wellbeing and family relationships. We developed a model showing how the lived experience of facilitators and positive approach led to reductions in isolation and perceived changes in mindset that were described as improving family carers' wellbeing and family relationships.

Positive Family Connections appears to be an acceptable programme which programme recipients and facilitators perceive to be beneficial.

The increasing need for child care is placing a burden on parents, including those with children with autism.

The aim of this study was to examine the employment status of Chinese mothers and fathers with children with autism spectrum disorder (ASD), as well as to investigate the factors that affected their employment decisions.

An online national survey was completed by the parents of 5018 children and adolescents with ASD aged 2-17 years (4837 couples, 181 single mothers, and 148 single fathers). The dependent variable was employment status-whether they kept working or quit to take care of their child. The independent variables were those characterizing the needs of the child and the sociodemographic characteristics of the family.

The employment rate of mothers with children and adolescents with ASD was 37.3% (1874/5018), while 96.7% (4823/4988) of fathers were employed. In addition, 54.3% (2723/5018) of mothers resigned from employment outside the home to care for their children, while only 2.8% (139/4988) of fathers resigned due to caring obligations. Mothers' employment was positively associated with their single marital status, lower educational level, and having assistance from grandparents. Having the grandparents' assistance was positively associated with fathers' employment.

Gender inequalities in employment exist in China. Mothers caring for children with ASD had lower workforce participation than fathers. More female-friendly policies and a stronger gender equality ideology would be of benefit to Chinese society.

Tourette syndrome (TS) is recognized as a neurodevelopmental disorder profoundly influenced by familial factors, particularly family functioning. However, the relationship among family functioning, tic severity, and quality of life in individuals with TS during childhood and adolescence remains unclear. We hypothesized that family functioning plays a role in the association between the severity of TS and quality of life in children.

To determine the role of family functioning in the relationship between TS severity and quality of life.

This study enrolled 139 children (male/female = 113/26) with TS. We assessed tic severity using the Yale Global Tic Severity Scale, quality of life via the Tourette Syndrome Quality of Life Scale, and family functioning through the Family Assessment Device. Our analysis focused on correlating these measures and exploring the mediating role of family functioning in the relationship between tic severity and quality of life. Additionally, we examined if this mediating effect varied by gender or the presence of comorbidity.

We found that family communication dysfunction had a significant mediating effect between tic severity and both psychological symptoms (indirect effect: Β = 0.0038, 95% confidence interval: 0.0006-0.0082) as well as physical and activities of daily living impairment (indirect effect: Β = 0.0029, 95% confidence interval: 0.0004-0.0065). For vocal tic severity, this mediation was found to be even more pronounced. Additionally, in male participants and those without attention deficit hyperactivity disorder, the mediating effect of family communication dysfunction was still evident.

Our study highlights the impact of family functioning on the tic severity and the quality of life in children. This relationship is influenced by gender and comorbid conditions like attention deficit hyperactivity disorder.

The rising demand for child care is putting a strain on parents of children with autism spectrum disorder (ASD), particularly the mothers. This study investigated Chinese mothers of children with ASD and examined the factors associated with maternal mental health. An online national survey was completed by the parents of 5077 ASD children and adolescents aged 0‍‒‍17 years. A total of 28.0% of the mothers reported poor mental health status. Mothers with children aged 10‍‒‍13 years had a lower chance of having poor mental health status than mothers with children aged 0‒2 years (odds ratio (OR) 0.63, 95% confidence interval (CI) 0.43‍‒‍0.91). Mothers of children with high-functioning autism were less likely to have poor mental health status than those of children with low-functioning autism (OR 0.76, 95% CI 0.62‍‒‍0.94). Having children with comorbidities was related with a higher risk of poor mental status (OR 1.56, 95% CI 1.35‒1.81), as were having conflicts with other family members (OR 1.44, 95% CI 1.22‍‒‍1.70) and providing full-time care (OR 1.22, CI 1.06‍‒‍1.41). A higher-than-average family income was associated with lower risk of having poor mental health status (OR 0.70, 95% CI 0.58‍‒‍0.82). Factors related to the children and family, and providing full-time care, have a significant effect on mothers' mental health status. Reducing obstacles to work and social interaction, as well as tackling the financial burden of raising an ASD child, may help improve the well-being of mothers.

This study was performed to determine the difficulties experienced by the parents of children with autism.

A qualitative method was used to determine the difficulties experienced by the parents. The sample of the study consisted of parents with 24 children with autism who met the inclusion criteria. The data were analysed by the MAXQDA qualitative data analysis programme in accordance with Colaizzi's seven-stage method.

Total of 5 themes and 29 codes were gathered in line with the data obtained from the interviews. Five main themes of the interviews emerged; emotions experienced by parents; adaptation to family life; difficulty in social relationships; limited opportunity for entertainment/activity and financial difficulty. Parents whose income were less than or equal to their expenses particularly stated that they had economic difficulties in the transportation of their children to places such as hospitals/schools/special education.

In accordance with the findings of this study, it was determined that almost all of the parents with a child diagnosed with autism experienced sadness, denial, shock, depression, self-blame in the period when their children were first diagnosed, and later accepted the disease. In addition, it was detected that parents had difficulties in family relations, social relations, entertainment/activity and economic aspects.

Caring for persons with alcohol use disorder (AUD) significantly affects the quality of life (QoL) of caregivers. According to Lazarus and Folkman's Stress and Coping Model (1984), the severity of alcohol consumption (SAC) is a major stressor for AUD caregivers. These stressors impact well-being, with QoL linked to caregivers' coping resources, especially social support (SS) and family functioning (FF). The study aimed to investigate the mediating roles of SS and FF in the relationship between the SAC and caregivers' QoL.

A cross-sectional study was conducted in two psychiatric hospitals in Amritsar city, Punjab. We used a purposive sampling technique to collect data from 128 family caregivers aged 18 and above who were caring for male patients with AUD aged between 20 and 65. The assessment tools used were the World Health Organization Quality of Life-Brief Version (WHOQOL-BREF), Alcohol Use Disorders Identification Test (AUDIT), Family Assessment Device (FAD), and PGI Social Support Questionnaire (PGI SSQ).

There is a significant and partial mediation of the association between SAC and QoL by both SS and FF (P < .001, 99% CI). Moreover, SAC (r = -0.519), FF (r = -0.603), and SS (r = 0.641) showed significant correlations with caregivers' QoL (P < .001). The mean scores for SAC, SS, FF, and QoL were 22.66 (11.38), 50.88 (9.45), 127.18 (43.85), and 84.13 (18.70), respectively, suggesting moderate SAC in patients, moderate to high perceived SS levels, moderate perception of family dysfunction, and moderate to high QoL among the caregivers.

SAC detrimentally impacts caregivers' QoL both directly and indirectly through SS and FF, with the latter serving as mediators, partially mitigating SAC's negative impact. Clinical implications underscore the importance of tailored interventions, emphasizing the strengthening of support systems and consideration of diverse FF domains for personalized approaches. The findings contribute valuable insights for developing targeted interventions customized to the specific needs of AUD caregivers to enhance their overall QoL.

(1) Background: This study assesses the impact of mothers' illness perceptions about autism spectrum disorder and their coping strategies on the family's quality of life during the initial period following diagnosis and one year afterward. (2) Method: The sample consisted of 53 mothers of children newly diagnosed with autism spectrum disorder and having communication difficulties who completed the following: the Beach Center Family Quality of Life Scale, the Brief Illness Perception Questionnaire, and the Brief-COPE. (3) Results: The findings revealed a moderate family quality of life in the initial assessment and a lack of a statistically significant change one year later. Notably, statistically significant changes were observed in coping strategies, as in the second assessment, and the score in denial and self-blame decreased. Pearson and Eta analyses indicated several correlations between socio-demographic characteristics, illness perceptions, coping strategies, and family quality of life. Multiple regression analysis showed that positive reframing was positively associated with total family quality of life in the initial period following diagnosis and one year afterward, while self-blame was associated with poorer quality of life in the time after diagnosis. Furthermore, the belief about the controllability of the disorder was correlated with better family quality of life one year after the diagnosis. (4) Conclusions: Illness perceptions and coping can be considered as predictors of family quality of life outcomes one year after the diagnosis of autism spectrum disorder. The focus of interventions, apart from controlling the disorder's symptoms, should aim to strengthen specific strategies and weaken others.

Maternal-perinatal interventions delivered during pregnancy or childbirth have unique characteristics that impact the health-related quality of life (HRQoL) of the mother, fetus, and newborn child. However, maternal-perinatal cost-utility analyses (CUAs) often only consider either maternal or child health outcomes. Challenges include, but are not limited to, measuring fetal, newborn, and infant health outcomes, and assessing their impact on maternal HRQoL. It is also important to recognize the impact of maternal-perinatal health on family members' HRQoL (i.e., family spillover effects) and to incorporate these effects in maternal-perinatal CUAs.

The aim was to systematically review the methods used to include health outcomes of pregnant women, fetuses, and children and to incorporate family spillover effects in maternal-perinatal CUAs.

A literature search was conducted in Medline, Embase, EconLit, Cochrane Collection, Cumulative Index to Nursing and Allied Health Literature (CINAHL), International Network of Agencies for Health Technology Assessment (INAHTA), and the Pediatric Economic Database Evaluation (PEDE) databases from inception to 2020 to identify maternal-perinatal CUAs that included health outcomes for pregnant women, fetuses, and/or children. The search was updated to December 2022 using PEDE. Data describing how the health outcomes of mothers, fetuses, and children were measured, incorporated, and reported along with the data on family spillover effects were extracted.

Out of 174 maternal-perinatal CUAs identified, 62 considered the health outcomes of pregnant women, and children. Among the 54 quality-adjusted life year (QALY)-based CUAs, 12 included fetal health outcomes, the impact of fetal loss on mothers' HRQoL, and the impact of neonatal demise on mothers' HRQoL. Four studies considered fetal health outcomes and the effects of fetal loss on mothers' HRQoL. One study included fetal health outcomes and the impact of neonatal demise on maternal HRQoL. Furthermore, six studies considered the impact of neonatal demise on maternal HRQoL, while four included fetal health outcomes. One study included the impact of fetal loss on maternal HRQoL. The remaining 26 only included the health outcomes of pregnant women and children. Among the eight disability-adjusted life year (DALY)-based CUAs, two measured fetal health outcomes. Out of 174 studies, only one study included family spillover effects. The most common measurement approach was to measure the health outcomes of pregnant women and children separately. Various approaches were used to assess fetal losses in terms of QALYs or DALYs and their impact on HRQoL of mothers. The most common integration approach was to sum the QALYs or DALYs for pregnant women and children. Most studies reported combined QALYs and incremental QALYs, or DALYs and incremental DALYs, at the family level for pregnant women and children.

Approximately one-third of maternal-perinatal CUAs included the health outcomes of pregnant women, fetuses, and/or children. Future CUAs of maternal-perinatal interventions, conducted from a societal perspective, should aim to incorporate health outcomes for mothers, fetuses, and children when appropriate. The various approaches used within these CUAs highlight the need for standardized measurement and integration methods, potentially leading to rigorous and standardized inclusion practices, providing higher-quality evidence to better inform decision-makers about the costs and benefits of maternal-perinatal interventions. Health Technology Assessment agencies may consider providing guidance for interventions affecting future lives in future updates.

Few researchers have examined gender differences in the quality of life (QoL) of parents of children with autism spectrum disorder (ASD) in diverse cultural contexts. The purpose of this study was to identify how ASD severity, affiliate stigma, perceived social support, family functioning, and coping strategies differentially predict the QoL of mothers and fathers of children with ASD in Saudi Arabia.

Based on a cross-sectional research design, data were gathered between April and July 2023 from a convenience sample of 376 parents (220 mothers and 156 fathers) of children with ASD in Saudi Arabia. Welch's t-test and regression were used to achieve the study purpose.

Mothers of children with ASD reported lower QoL, perceived social support, and family functioning than fathers. Mothers relied on emotion-focused coping strategies, whereas fathers used problem-focused coping strategies. Furthermore, affiliate stigma, perceived social support, and family functioning significantly predicted the QoL of mothers and fathers of children with ASD. However, the severity of ASD affected only the QoL of the mothers. Problem-focused coping significantly predicted fathers' QoL but not mothers' QoL.

The results highlight gender differences in the factors that predict the QoL of parents of children with ASD in Saudi Arabia.

Healthcare professionals should consider parents' gender when providing support and interventions to improve parental QoL.

This study aimed to investigate the levels of anxiety, depression, and quality of life among parents of children with autism spectrum disorder. It also compared the difference in these levels between mothers and fathers. Additionally, it quantifies the association between parental anxiety, depression, and quality of life, with various sociodemographic factors.

This analytical, cross-sectional study was carried out between June and December 2022. An online questionnaire was completed by a sample of 394 parents of children with ASD (autism spectrum disorder) residing in Saudi Arabia. Three scales were used to assess depression, anxiety, and quality of life (QoL), respectively: Patient Health Questionnaire 9 (PHQ-9), Generalized Anxiety Disorder 7 (GAD-7), and World Health Organization Quality of Life-Brief Version (WHOQOL-BREF).

Most parents (70.8%) were mothers with an average age of 39 years, typically ranging from 30 to 48 years. Parents' overall quality of life was 57.72 out of 100, indicating moderate satisfaction. Anxiety levels showed that 32% had mild, 17.8% moderate, and 14.7% severe anxiety. Similarly, depression levels revealed that 34.5% had minimal, 32.2% mild, and 18% moderate depression. Higher anxiety and depression scores were linked to a lower perceived QoL (quality of life). Moreover, the socioeconomic status index (SESi) was significantly and positively correlated with higher depression and lower quality of life.

Autism Spectrum Disorder imposes a strain on parents of the autistic child. The responsibilities linked to the disability amplify the occurrence of depression and anxiety among parents, leading to a diminished quality of life.

Parental involvement is fundamental to the successful inclusion of children with disabilities in social, academic and communities' services. However, very little is known about UAE fathers' involvement in the support, care, and treatment. and facilitation of engagement in the social, academic, and recreational activities of children with disabilities. Importantly, the role of fathers in facilitating children's participations in social services within the community is unknown. The aim of the current study was to learn father's involvement in the life of children with disabilities in the United Arab Emirates (UAE).

A total of 1027 parents (fathers = 469, and mothers = 558) completed the revised Fathers' Involvement in Development and Rehabilitation Scale, with three sub-scales (support, attitudes, and participation in training). The Statistical Package for Social Science (SPSS) version 29 was used to calculate means, t-tests, and moderation analyses.

The mean scores showed high involvement of fathers; fathers rated themselves highly on attitudes and support towards their children with disabilities compared to mothers. Also, parental type (fathers vs mothers) significantly moderated the relationship between the support needs of children and paternal support to children with disabilities.

The study concludes with suggestions for targeted training programmes to enable fathers to better support the development of their children with disabilities.

Background: 22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.Objective: The study's primary objective was to assess the frequency of traumatic experiences and mental health symptoms among mothers of children with 22q11DS. The secondary objective was to compare their traumatic experiences to those of mothers of children with other neurodevelopmental disorders (NDDs).Method: A total of 71 mothers of children diagnosed with 22q11DS completed an online survey about their mental health symptoms and traumatic experiences. Descriptive statistics were used to summarise the prevalence of their mental health symptoms and traumatic experiences. Logistic regression models were run to compare the traumatic experiences of mothers of children with 22q11DS to those of 335 mothers of children with other neurodevelopmental disorders (NDDs).Results: Many mothers of children with 22q11DS experienced clinically significant mental health symptoms, including depression (39%), anxiety (25%), and post-traumatic stress disorder (PTSD) symptoms (30%). The types of traumatic events experienced by mothers of children with 22q11DS differed from those of mothers of children with other NDDs as they were more likely to observe their child undergoing a medical procedure, a life-threatening surgery, or have been with their child in the intensive care unit.Conclusion: 22q11DS caregivers are likely to require mental health support and trauma-informed care, tailored to the specific needs of this population as they experience different kinds of traumatic events compared to caregivers of children with other NDDS.

Aim: This study aimed to assess the quality of life (QoL) of parents of children with autism spectrum disorder (ASD) in Jordan and its associated factors. Methods: This comparative study was conducted among parents of children with ASD and non-ASD. Data collection took four setting areas that include three centers for autism in three different municipalities and the control group was collected using social media. A convenience sample of 242 parents agreed to complete a QoL questionnaire. Results: Parents of children with ASD in Jordan have poor QoL across the five domains of QoL in compare with parents with non-ASD child. Factors such as gender, level of education, living condition and employment status were found impacting QoL.

The rapid increasing prevalence of ASD has become a significant global health issue. Caregivers of children with ASD are experiencing higher level of psychological stress and mental disorders. However, interventions to improve the psychological health of caregivers of children with ASD have largely been neglected.

Based on the ADDIE (Analysis, Design, Development, Implementation, and Evaluation) model, we initially did in-depth interviews with 8 caregivers, and conducted field observation in two rehabilitation centers to analyze the daily lives, the empowered components, the emotional moments of the children with autism and their caregivers. Then we designed the outline of the picture book, and developed it by a multi-disciplinary team by 4 rounds. After that, this picture book was sent out to 54 caregivers of children with ASD for family-child reading in one month. A quantitative questionnaire was administered before and after their reading to evaluate the efficacy of reducing their stress and affiliate stigma, and improving self-efficacy, resilience, empowerment capacity; and exit interviews were conducted after their initial reading to assess the acceptability, content appropriateness, perceived benefits and generalizability of this picture book. Quantitative data were analyzed by descriptive analysis and paired t-tests using IBM SPSS 26.0. Qualitative data were analyzed using template analysis.

In total, 54 caregivers read the picture book with their child, with the total of 149 (an average of 2.76 per family) times reading in one month. Among them, 39 caregivers returned the following-up questionnaires. Although most of the outcome measures did not showed significant changes except the stress level decreased statistically significant (13.38 ± 3.864 to 11.79 ± 3.238, P=0.001), caregivers reported that the picture book echoed their daily lives and gave them a sense of warmth, inspiration, and hope, as well as some insight on family relationships and attitudes towards the disorder. They also expressed a willingness to disseminate the book to other families with children suffering ASD and the public.

This specially designed picture book has been proven to be an acceptable, content-appropriate, and effective family-centered psychological intervention, which could be easily scaled up.

Autism spectrum disorder (ASD) is a lifelong neurological condition which results in social skill deficits, communication difficulties, and restrictive and repetitive behaviour. The difficulties associated with parenting children with ASD have been studied extensively, mainly from the perspectives of mothers. The extent of involvement of fathers in the raising of children with ASD has received limited scholarly attention, especially in non-Western contexts such as the United Arab Emirates.

This study asked mothers to evaluate the involvement of fathers in the development of children with ASD.

In all, 240 mothers completed the Fathers' Involvement in Development and Rehabilitation Scale, designed based on a review of literature on the construct of involvement, namely attitude, participation in training, and support domains. The data were subjected to computation of mean scores, multivariate analysis of variance, hierarchical regression, and moderation analyses.

The results suggested that fathers held positive attitudes and provided substantial support to their children with ASD. However, mothers were ambivalent regarding the participation of fathers in training to support the development of their children. Differences were also observed between participants according to marital status, location, child gender, and ASD severity.

Recommendations for targeted training for fathers and other study implications are discussed.

Background: Caring for alcohol use disorder (AUD) patients poses significant challenges, impacting caregivers' quality of life (QOL) across all the dimensions. Following Lazarus and Folkman's Transactional Model of Stress and Coping, family functioning (FF) and social support (SS) are crucial coping resources. Purpose: This study aims to explore how FF and SS relate to QOL in caregivers of individuals with AUD, recognising their pivotal role in navigating diverse caregiving-related stressors. Methods: A sample of 128 primary caregivers for AUD patients was collected from two psychiatric hospitals in Amritsar, Punjab. Data were collected using assessment tools, such as the World Health Organization Quality of Life Brief Version (WHOQOL-BREF), Family Assessment Device and PGI Social Support Questionnaire, and were analysed through the Pearson product moment correlation and multiple regression analysis. Results: FF (r = -0.603) and SS (r = 0.641) exhibited significant correlations with caregivers' QOL. Multiple regression analysis confirmed that both FF (β = -0.345) and SS (β = 0.436) significantly predicted QOL among caregivers. Approximately 49% of the variance in QOL was explained by the linear combination of SS and FF. Conclusion: Developing tailored programs is essential to enhance caregivers' physical, mental, social and environmental well-being. Healthcare professionals should recognise the intricate connections among these dimensions, crafting holistic approaches to nurture a supportive caregiving environment.

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.

Parents of children with autism spectrum disorder (ASD) report experiencing more parenting stress than parents of children with typical development or other developmental disorders. Eighty mothers of preschool children with ASD completed questionnaires with the purpose of exploring the extent and characteristics of parenting stress and the possibility of predicting parenting stress based on the mother's coping strategies, perceived social and professional support, the severity of the child's symptoms, and certain sociodemographic characteristics. The results show that 19% of the mothers had clinically significant parental stress. Most of the mothers experienced increased stress levels related to the following: poor interactions with their children (34%), the child's demandingness (27%), and their personal ability to cope with parental distress (20%). The predictors significantly explained 42.8% of the variance in total parental stress, with support from friends and severity of the child's symptoms being significant unique contributors.

Parents of children with autism spectrum disorder (ASD) face unique challenges in raising their children, and they are at higher risk for depression compared to parents of children with typical development (TD) and other disabilities.

(1) To compare prevalence of depressive symptoms among mothers of children with ASD (n = 101), Down syndrome (DS, n = 101), and TD (n = 43) and (2) to describe the relationships among depression, self-efficacy, and family functioning, and describe the mediating role of maternal child care self-efficacy between depressive symptoms and child behavior.

In this cross-sectional study, mothers completed the Social Communication Questionnaire, Aberrant Behavior Checklist, Patient Health Questionnaire-9 (PHQ-9), Family Assessment Device General Functioning Scale, and Maternal Self-Efficacy Scale.

Mothers of children with ASD had significantly higher mean PHQ-9 scores (p < .001), higher proportion of positive depression screening (p < .001), and lower family functioning (p < .001). Better family functioning is associated with less depression, better self-efficacy, and less severe ASD symptoms and behaviors. Self-efficacy mediated the relationship between depression and child ASD symptoms, and problematic behavior.

The rates of reported history of depression and low family functioning in mothers of children with ASD are twice the rate in mothers of children with DS and TD. Maternal child care self-efficacy is protective against maternal depression, even in the presence of severe child problematic behaviors and ASD symptoms. Interventions that increase child care self-efficacy and family functioning may be helpful in addressing depression in mothers of children with ASD.

Although poor health has been reported in parents of children with autism spectrum disorder (ASD), most studies excluded fathers and focused on mental health. We combined 2016-2019 data from the National Surveys of Children's Health to determine child and parent characteristics that predict poor mental and physical health in fathers (n = 818) and mothers (n = 2111) of children with ASD. For fathers of children with ASD, higher parenting stress was significantly associated with greater odds of poor physical health, whereas racial and ethnic minorities and living at 400% above the federal poverty were significantly associated with lower odds of poor mental health. For mothers of children with ASD, greater child sleep problems were significantly associated with greater odds of poor physical health, and two-parent household living 400% above the poverty line was significantly associated with reported lower odds of poor mental health. Continued efforts to reduce parenting stress and improve child sleep problems, along with expanding existing services and coverages of ASD services, especially for low-income families, may help reduce the burden on these families, preventing adverse future health outcomes in this population.

This article aims to review the literature on family functioning in the field of autism. The search was conducted in August 2021 in PubMed, PsycINFO, and PubPsy and sixty-two articles were included. Studies were published in English between 1980 and 2021 and provided quantitative data from validated measures of family functioning in families with an official diagnosis of autism. Results showed that family functioning appeared more problematic for families of autistic children than non-autistic ones. Difficulties were correlated with more caregiver demand and less resources. Interventional results varied. The findings highlight the importance of considering family functioning when providing care for autistic children and their families. Limitations and implications for future research are discussed.Prospero registration number: CRD42022297696.

This study examined connections between parental quality of life (QoL) and features of children (autism severity, cognitive ability, behavioral profile, and sociodemographic factors). Parents of 97 children attending an autism-specific preschool completed the Quality of Life in Autism, Vineland Adaptive Behavior Scales and Child Behavior Checklist. The Autism Diagnostic Observation Schedule and Mullen Scales of Early Learning were also administered. Reduced restrictive/repetitive behavior and higher socialization and play/leisure scores were associated with better parental QoL. Better behavioral regulation and attention also predicted better QoL, as did stronger communication and reduced internalising behaviours. Findings indicate that a child's level of autism specific traits, adaptive functioning and behavioral profile has greater impact on parental QoL than cognitive level.

A child's health condition affects family members' health and well-being. However, pediatric cost-utility analysis (CUA) commonly ignores these family spillover effects leading to an incomplete understanding of the cost and benefits of a child's health intervention. Methodological challenges exist in assessing, valuing, and incorporating family spillover effects.

This study systematically reviews and compare methods used to include family spillover effects in pediatric CUAs.

A literature search was conducted in MEDLINE, Embase, EconLit, Cochrane collection, CINAHL, INAHTA, and the Pediatric Economic Database Evaluation (PEDE) database from inception to 2020 to identify pediatric CUAs that included family spillover effects. The search was updated to 2021 using PEDE. The data describing in which family members spillover effects were measured, and how family spillover effects were measured, incorporated, and reported, were extracted. Common approaches were grouped conceptually. Further, this review identified theories or theoretical frameworks used to justify approaches for integrating family spillover effects into CUA.

Of 878 pediatric CUAs identified, 35 included family spillover effects. Most pediatric CUAs considered family spillover effects on one family member. Pediatric CUAs reported eight different approaches to measure the family spillover effects. The most common method was measuring the quality-adjusted life years (QALY) loss of the caregiver(s) or parent(s) due to a child's illness or disability using an isolated approach whereby family spillover effects were quantified in individual family members separately from other health effects. Studies used four approaches to integrate family spillover effects into CUA. The most common method was to sum children's and parents/caregivers' QALYs. Only two studies used a theoretical framework for incorporation of family spillover effects.

Few pediatric CUAs included family spillover effects and the observed variation indicated no consensus among researchers on how family spillover effects should be measured and incorporated. This heterogeneity is mirrored by a lack of practical guidelines by Health Technology Assessment (HTA) agencies or a theoretical foundation for including family spillover effects in pediatric CUA. The results from this review may encourage researchers to develop a theoretical framework and HTA agencies to develop guidelines for including family spillover effects. Such guidance may lead to more rigorous and standardized methods for including family spillover effects and better-quality evidence to inform decision-makers on the cost-effectiveness of pediatric health interventions.

Children with autism spectrum disorder (ASD) tend to have a notably poorer quality of life than the general population, especially during the COVID-19 pandemic. This study aimed to analyze the association between institutional support and family support on the health-related quality of life (HRQoL) of children with ASD during the COVID-19 pandemic.

A cross-sectional study was conducted in October 2022 in a School for Special Needs in Malang City, East Java Province, Indonesia. The pediatric quality of life inventory (PedsQL) and Institutional and Family Support questionnaire were used to measure the HRQoL and support perceived by parents of children with ASD. We analyzed each component of the PedsQL and the Institutional and Family Support questionnaire. The independent T-test was performed to analyze the association between HRQoL and perceived support by parents of children with ASD.

The results showed that most participants (72.7%) were women aged 40. As many as 69.39% of participants had more than one child, and 16.33% declared they had other children who experienced the same problem (special needs children). This study indicated that the average health-related quality of life score in children with ASD was 57.41 (9.418). The finding of this study showed a significant mean difference in HRQoL scores in children with ASD who received high institutional and family support compared to those who had low (p = 0.028, 95% confidence interval [CI] = -11.071 to 0.664).

Institutional support positively impacts children with ASD's quality of life. Therefore, it is essential to improve the adequacy of support felt by families while caring for children with ASD.

Autistic individuals and their families are at risk for poor outcomes in employment and mental health and may be vulnerable to long-term effects of broader societal conditions. The aim of the current longitudinal study was to understand the impact of the Great Recession of 2007-2009 on autistic individuals and their mothers (N = 392). Hierarchical linear modeling (HLM) results indicated that problem behavior of autistic adults increased in the years following the recession. The rate at which autistic individuals moved away and lived separately from their mothers also slowed during the recession. Mothers experienced significantly higher levels of depressive symptoms postrecession, compared to prerecession. In many other respects, the autistic individuals and their mothers did not experience negative outcomes, suggesting resilience and a strong safety net. These included the physical health and vocational/employment status of the autistic adults and their mothers. Results point to specific areas of vulnerability of autistic individuals and their mothers during the economic downturn, as well as a broad pattern of resilience in these families.

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.

Parental stress among primary caregivers of children with autism spectrum disorder (ASD) is a significant concern. While previous research indicates that both family and child factors substantially influence parental stress, a few studies have comprehensively examined these factors from family, parent, and child perspectives. Moreover, the psychological mechanisms underlying parental stress remain underexplored.

This study obtained a valid sample of 478 primary caregivers of children diagnosed with ASD in China and employed mediation and moderated mediation analyses to investigate the relationships between family adaptability and cohesion (FAC), ASD severity, parental self-efficacy, and parental stress.

Results revealed that higher FAC was linked to reduced parental stress through increased parental self-efficacy. The indirect effect of parental self-efficacy was more substantial for caregivers of children with severe symptoms than those with mild symptoms.

These findings offer insights into how FAC influences parental stress and underscore the importance of parental self-efficacy as a coping resource for mitigating parental stress. This study provides valuable theoretical and practical implications for understanding and addressing parental stress, particularly in families raising children with ASD.

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.

Despite high rates of traumatic experiences reported among Hispanic/Latino/a immigrants in the U.S., the effect of post-traumatic stress on parenting stress among Hispanic/Latino/a immigrant parents with young children has been overlooked. The present study tested the direct and indirect relationships of self-reported maternal post-traumatic stress symptoms on parenting stress, and the mediating role of protective factors among Hispanic/Latino/a mothers with young children. Baseline data collected from mothers participating in a community-based child-parent dyadic intervention were analyzed. Measures included the post-traumatic stress disorder (PTSD) Checklist, the Protective Factors Survey, and the Parenting Stress Index-Short Form (PSI). The sample included 80 mothers with a child between ages 0-6 years. About 75% of these mothers were migrants from Central America. A multivariate regression analysis showed that maternal post-traumatic stress symptoms predicted higher levels of PSI, and two protective factors (social support and family functioning/resilience) fully mediated the relationship between maternal post-traumatic stress symptoms and PSI. Higher social support and family functioning/resiliency may have protective effects on Hispanic/Latino/a mothers with post-traumatic stress, leading to lower levels of stress related to parenting. Findings underscore the importance of interventions that enhance access to social support and promote family functioning/resilience for Hispanic/Latino/a immigrant mothers with trauma histories to cope better with parenting stress.