Service Delivery Outcomes in ASD: Role of Parent Education,Empowerment, and Professional Partnerships

Children with Autism Spectrum Disorder (ASD) utilize a greater number of healthcare services compared to children with other developmental disabilities. Despite this, children with ASD remain at high risk for unmet service needs, which are compounded by differences in socioeconomic status (SES). Both empowerment and parent-professional partnership play a role in service outcomes and may be especially important in understanding these service disparities. Our goal was to better understand the contributions of these variables to service disparities in families of children with ASD. Two-hundred forty-nine parents of children with ASD between the ages of 3 and 20 participated in this online survey. Results support previous research highlighting high levels of unmet needs that are exacerbated by differences in parent education, a common indicator of SES. Empowerment and parent-professional partnership also predicted service delivery outcomes. While high quality partnership predicted greater service adequacy, empowerment was inversely related to services. Furthermore, an interaction found that highly empowered families experiencing poor quality partnerships reported worse service delivery outcomes, while empowerment was not a factor in services for families experiencing high quality partnerships. Parent-professional partnership partially mediated the relationship between parent education and service delivery outcomes. As such, increasing parent-professional partnerships through family-centered care and professional training may help to reduce education-related service disparities and improve satisfaction with care for families and children with ASD.     

Parent Perspectives on Community Mental Health Services for Children with Autism Spectrum Disorders

The community mental health (CMH) system provides treatment for behavioral and psychiatric problems in children with autism spectrum disorders (ASD). Although parent stakeholder perspectives are important to improving care, these perspectives have not been systematically examined for this population in the CMH sector. Twenty-one semi-structured qualitative interviews were conducted with parents of children with ASD who received services in CMH clinics. Themes related to child clinical histories, service access and experiences with the CMH system revealed a specific trajectory of service need identification, obtaining a diagnosis, and experience with services. Each trajectory stage was marked by high parent stress. Results provide information about the characteristics of children with ASD served in community mental health clinics and direction for targeted improvement efforts.     

Connections between Family Centered Care and Medical Homes of Children with Neurodevelopmental Disabilities: Experiences of Diverse Families

Cultural issues tied to race/ethnicity are important aspects in delivering medical home services to children with neurodevelopmental disabilities and their families. To better understand family satisfaction with family centered care (FCC) in medical homes of children with disabilities, this study investigated whether family race/ethnicity, in addition to parent and child characteristics, significantly influenced family perceptions of FCC in three areas: family-provider partnership, care setting practices and policies, and community coordination and follow-up. Based on the life course theory for optimizing children's developmental trajectories, examining connections between family race/ethnicity and satisfaction with health care allows for identification of strengths and weaknesses in medical home services delivery, and offers opportunities for family support and improvement in outcomes for children with disabilities. This study developed an original empirical survey using a structured questionnaire developed by Family Voices, a national advocacy organization dedicated to promoting the well-being of children with disabilities and their families. The study collected data for 122 families in a large urban area in the northeastern United States. Multivariate analyses revealed that family race/ethnicity significantly contributed to the prediction of parental satisfaction with medical homes of children with disabilities, and to families' perceptions of FCC in care setting practices and policies, and community coordination and followup, but not to family provider partnership. Non-White families reported significantly lower satisfaction. Discussion emphasizes that health care providers need to become more vigilant in providing culturally sensitive care. To enhance FCC practices and policies, the study advances a checklist of ten essential areas that promote culturally sensitive interactions between families of children with disabilities and their medical and non-medical health care providers.     

The Impact of Parent Empowerment in Children’s Mental Health Services on Parenting Stress

Emotional and behavioral (EB) problems in children are associated with increased perceptions of strain in parenting. Among children receiving services, parenting stress has been linked to initiating services for their children, and may strain the relationship between parent and child. In contrast, parental engagement and empowerment in services is an important quality indicator for positive treatment outcomes. However, no known studies have examined the association between parent empowerment in their child’s services and their perceptions of stress related to parenting a child with significant mental health needs. Further, no studies have explored whether empowerment moderates the relationship between the child’s symptoms and parental perceptions of stress. The current study examined the impact of child EB problems and parent empowerment on parenting stress. Among a sample of 525 parents of children receiving school-based services for disruptive behavior disorders, child EB problems significantly predicted parenting stress. Parent empowerment also correlated with lower parenting stress, as hypothesized. Although parent empowerment was not found to moderate the relationship between child symptomatology and parenting stress, the relationship between parent empowerment and parenting stress differed based on child gender and age. Parent empowerment was associated with lower parenting stress more for parents of females and younger children than for parents of males and older children.     

Parent Satisfaction with Case Managed Systems of Care for Children and Youth with Severe Emotional Disturbance

Case management has emerged as an integral component of current efforts to reform the delivery of mental health services to children and youth with Severe Emotional Disturbance (SED). We examined parental satisfaction with one program's case management system for SED children. In order to validly address parental satisfaction, the program first turned to a group of its parents to develop a satisfaction measure, the Family Satisfaction Survey (FSS). Of the 51 parents who returned an FSS, 74% of the parents were generally satisfied while 26% indicated that they were dissatisfied with their families' case management services. Multivariate regression analyses were employed to examine the role played by client, service, and outcome variables in predicting parental satisfaction. After controlling for child diagnoses, severity of impairment, and levels of psychosocial stress, parent satisfaction with case management services was best predicted by the frequency of monthly contact and fewer days is a psychiatric hospital proportional to length of service. Our results suggest that parent satisfaction is based not only on what case managers do but on how this service impacts SED children's ability to remain at home and in their communities.     

Parent Perspectives of an Evidence-Based Intervention for Children with Autism Served in Community Mental Health Clinics

Research suggests that improvements to community mental health (CMH) care for children with autism spectrum disorders (ASD) are needed. Recent research examining the feasibility of training CMH therapists to deliver a package of evidence-based practice intervention strategies (EBPs) targeting challenging behaviors for school-age children with ASD offers initial support for such efforts to improve care. Specifically, quantitative data from a recent pilot study indicate that CMH therapists with limited ASD experience can deliver an EBP intervention with fidelity and perceive it as useful to their practice. Further, client attendance is high and children demonstrate improvement on standardized measures. To further understand the feasibility and impact of training CMH therapists to deliver EBPs, this mixed-methods study examined parent perspectives of the process and impact of outpatient psychotherapy for 13 parents of children ages 5–13 with ASD whose therapists were trained to deliver the EBP intervention. Results complement and expand previously reported quantitative data on psychotherapy process indicating that parents are highly involved in treatment for their children, perceive a strong therapeutic alliance with their children’s therapist, and highlight that treatment was different once therapists began delivering the intervention. Results also indicate themes related to parents’ perceptions of positive child and parent outcomes that provide important details on the specific gains that were observed during treatment. Study findings underscore the importance of parent perspectives in understanding the process and impact of implementing EBPs in CMH settings for families of children with ASD.     

Quality care in residential placement for children and youth with developmental disabilities

There is a growing concern for quality care in residential placements outside of the natural family for children and youth with developmental disabilities. Ideally, children with developmental disabilities should remain with their natural parent or parents of parents with appropriate supports until the age when children typically leave home. In reality, parents of children and youth with development disabilities are not always able or willing to care for their children at home, and alternate residential placements must be found. This paper will discuss some of the issues surrounding the provision of quality care in out-of-home residential placements for children and youth with developmental disabilities.     

Training Pediatric Psychologists for Perinatal Behavioral Health Services in a Pediatric Hospital

Although pediatric hospitals specialize in providing care to children and adolescents, at The Children’s Hospital of Philadelphia (CHOP), our team has been providing behavioral health services for two unique parent populations—parents with a child in the Newborn Infant Intensive Care Unit and pregnant women carrying fetuses with specific birth defects and receiving prenatal care in the Center for Fetal Diagnosis and Treatment. A new training program was developed to expand the scope of pediatric psychologists’ practice to include perinatal behavioral health services, specifically for these two unique parent populations served at CHOP. The program includes direct service provision for adult mental health concerns, as well as education and support to help families cope with the existing medical conditions. This article describes the training program and its implementation as a model of training for other pediatric hospitals. The roles of psychologists embedded in these units and hospital privileges are discussed.     

Satisfaction,involvement, and unconditional care: The perceptions of children and adolescents receiving wraparound services

Client satisfaction has emerged as an important variable in evaluating outcomes for mental health treatment, yet studies have seldom queried children and adolescents about their perceptions of the services they receive. The present study surveyed 20 youths receiving community-based, wraparound services about their satisfaction, sense of involvement, and feelings of unconditional care. Unconditional care, in this case, referred to the youth's sense that his or her caretakers would remain stable regardless of what happened. Each of these variables was in turn related to behavioral adjustment. It was found that both youths' sense of involvement and their perceptions that their care was unconditional were strongly associated with satisfaction with services. However, neither satisfaction nor involvement were correlated with the severity of subjects' acting-out behaviors. Subjects' perception that care was unconditional was strongly, negatively correlated with the severity of acting-out behaviors. Thus, while the relationship between satisfaction and behavior remains unclear, it appears that youths' perceptions of the stability of their services plays a role in their acting out. It was concluded that youths' feelings about their services can provide meaningful information for researchers and service providers.     

Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: a meta-analysis

A meta-analysis of the group intervention research for parents of children with developmental disabilities was conducted in order to characterize the efficacy of treatments in reducing depressive symptoms and other forms of psychological distress associated with stress in parents of children with developmental disabilities. An extensive search led to the identification of 17 studies which were divided into three categories for comparative purposes: parenting education studies usually based on behavioral parent training, coping skills education studies based primarily on cognitive behavioral training, and studies that combined these methods along with other support services. Studies were rated for the quality of the research designs and of the reports. Consistent positive benefits were found in the form of reductions in parents' distress, and these effects were comparable to those reported in other syntheses of parenting interventions for parents of children without disabilities. The studies were evaluated in order to assess whether or not they met standards for established evidence-based practices. On the basis of the quality and number of the randomized trials, we present evidence to support the claim that there are established evidence-based interventions for reducing psychological distress at least in middle-class mothers in the short term. The interventions for fathers are promising as are the data on somewhat longer-term effects. The need for replications with a more diverse group of parents and longer-term follow-up were discussed. Multiple component interventions addressing both parent well-being and behavioral parent training were significantly more effective than either behavioral parent training or cognitive behavioral training along.     

Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation

Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.     

Parents’ View of Child Care Quality: Values, Evaluations, and Satisfaction

Parents’ view of the quality of early childhood education and care services has mostly been addressed from the perspective of customer satisfaction. This study investigated parents’ view within a more comprehensive framework in which parents’ values of child care, their evaluations of their child’s experience at the service and overall satisfaction with the service were considered. In particular, the study explored how values and evaluations are related and how they affect overall satisfaction. A questionnaire including a total of 96 items was filled in by 2,936 parents of children attending infant-toddler day-care centres in Rome, Italy. Parents were asked to express their values regarding child care quality and evaluate specific aspects of their experience. Parents’ perspectives of both their child’s and their own experience of childcare services were addressed separately. Two principal component analyses were performed in order to identify latent dimensions underlying parents’ values about child care quality and their evaluations of the service attended by their child. The relationships between the different dimensions of value, evaluation, and overall satisfaction with their child’s and their own experience were explained through two path models, in which values predict evaluations and these, in turn, predict overall satisfaction. Results showed that parents have a multi-faceted view of child care quality and confirm the relevance of taking into account their point of view in an analysis of the quality of early childhood education services.     

Coping and care-related stress in parents of a child with autism spectrum disorder

Background and Objectives: Parenting a child with Autism Spectrum Disorder (ASD) is challenging and can result in elevated levels of parenting stress. This study investigated the relationship between parent-ratings of their child’s ASD symptoms and two conceptually different measures of parenting stress: One specific to the ASD context and the other a general stress measure applicable to the broader caregiving context. Additionally, the influence of coping style on the relationship between child’s ASD symptoms and parenting stress was investigated.

Design and Methods: Using an internet survey, parents (N?=?178) caring for a child with ASD reported on coping strategies, completed two measures of parenting stress, and assessed their child’s ASD symptoms.

Results: Parenting stress increased with severity of the child’s ASD symptoms, but the strength of this relationship depended on whether a general or disorder-specific measure of parenting stress was used. Regression analyses indicated that some coping strategies moderated the impact of ASD symptom severity on the parent’s care-related stress, but moderation depended on how stress was conceptualized.

Conclusion: This study reinforces the importance of identifying the coping strategies of parents of children with developmental disorders, and highlights the consequences of using different conceptual approaches to measure parenting stress.     

Assessment and Diagnosis of Autism Spectrum Disorder in Hanoi,Vietnam

For individuals with autism spectrum disorder (ASD), early and accurate diagnosis enables early intervention, which leads to improved quality of life. The diagnostic label of ASD has only been recognized in Vietnam since 2000 and the number of children who have been diagnosed has increased dramatically. However, there is limited understanding about the condition. This article aims to describe the current assessment and diagnostic practices in Hanoi, Vietnam, a low resource setting. Data for this article came from in-depth interviews with parents of children with ASD and service providers, and observation at health clinics and early intervention centers that provide ASD assessment during field work from July 2011 to May 2012. This study reveals that although there is some improvement in assessment services, parents still face a number of challenges in accessing quality assessment and diagnosis of ASD in Vietnam. These include rushed and perfunctory assessment; a lack of clinical guidelines for assessment; limited communication among health professionals in assessment teams, and between professionals and parents of children with ASD. Public awareness-raising of the signs of autism, capacity building for professionals, development of practical and contextual appropriate assessment protocols are needed to enhance the accessibility and quality of assessment services.     

Relationships among parental reports of child, parent, and family functioning.

Most children with psychosocial problems do not present for treatment in mental health settings. They are managed by primary care physicians. Children with psychosocial problems often have parents and/or families with psychosocial distress. The present study measured associations between parental reports of child, parent, and family functioning in individuals in the general population. Participants were 226 parents of children, aged 2-16 years, who presented for routine primary care. Parents reported on the psychosocial functioning of themselves, their child, and their family. All correlations of measures were significant, ranging from .55 to .23. Similar to data from psychiatric samples, the psychological functioning of children, parents, and families were significantly correlated. Unlike in psychiatric settings, child mental health problems were not as closely related to parent or family distress as parent and family distress were related to each other and to child behavior problems.     

Therapist, Parent, and Youth Perspectives of Treatment Barriers to Family-Focused Community Outpatient Mental Health Services

This exploratory qualitative study describes treatment barriers to receiving family-focused child mental health services for youths with disruptive behavior problems from multiple perspectives. Data were collected during a series of focus groups and interviews, including: 4 therapist focus groups (n = 26), 3 parent focus groups (n = 14), and 10 youth (10–13 years) semi-structured interviews. Data analysis followed inductive, iterative processes typical of qualitative research using an editing style and thematic content analysis approach. Therapist, parent, and youth stakeholder participants discussed perceived barriers to effective treatment, the problems with current child outpatient therapy, and desired changes (i.e., policy, intervention, etc.) to improve mental health services. Results indicate similar themes around treatment barriers and dissatisfaction with services within and across multiple stakeholder groups, including inadequate service system support, lack of family involvement and feeling overwhelmed with the complexities of families’ needs; however, parents and therapists, in particular, identified different contributing factors to these barriers. Therapists highly endorse using family-focused therapy and desire parent participation; however, parents feel unsupported by their child’s therapist. Parents’ report feeling blamed and not heard by service providers which negatively impacts their attitude about service delivery, causing discomfort and resistance to participation in their youth’s treatment. Youth also discussed dissatisfaction with mental health services, specifically related to their direct experiences in therapy, and desired more active, directive family-focused approaches. Overall, stakeholders reported much frustration and dissatisfaction with current community-based outpatient child therapy services. Study findings can inform service provision, intervention development, and future research.     

Family involvement and empowerment in mental health service provision for children with emotional and behavioral disorders

Involvement of families is a critical component in effective systems of care for children with disabilities and their families. We investigated the sociodemographic correlates of family involvement in mental health services for children who have emotional and behavioral disorders. Further, we investigated the relationship between family involvement and family empowerment. The Family Involvement Scale-Family Version was used to measure involvement of families in the provision of mental services for their children and the Family Empowerment Scale was used to measure pempowerment in families with children who have emotional and behavioral disorders. In additions, demographic data concerming family composition, race, education, incone, membership in a parent support group, and the mental health status of the children were also collected. The results showed that mothers, as well as respondents with less formal education, reported greater involvement in services for their children than fathers and those who were more educated. Further, the knowledge subscale of empowerment was significantly correlated with all, subscales of family involvement and personal empowerment was significantly correlated with the treatment subscale of family involvement.     

Developmental Changes in Pretend Play from 22- to 34-Months in Younger Siblings of Children with Autism Spectrum Disorder

Developmental trajectories of children’s pretend play and social engagement, as well as parent sensitivity and stimulation, were examined in toddlers with an older sibling with autism spectrum disorder (ASD, high risk; HR) and toddlers with typically-developing older siblings (low risk; LR). Children (N = 168, 97 boys, 71 girls) were observed at 22, 28, and 34 months during free play with a parent and elicited pretend play with an examiner. At 28 and 34 months, children were asked to imagine the consequences of actions pantomimed by the examiner on a pretend transformation task. At 36 months children were assessed for ASD, yielding 3 groups for comparison: HR children with ASD, HR children without ASD (HR-noASD), and LR children. Children in all 3 groups showed developmental changes, engaging in more bouts of pretend play and obtaining higher scores on the elicited pretend and transformation tasks with age, but children with ASD lagged behind the other 2 groups on most measures. Children with ASD were also less engaged with their parents or the examiner during play interactions than either LR or HR-noASD children, with minimal developmental change evident. Parents, regardless of group, were highly engaged with their children, but parents of HR-noASD children received somewhat higher ratings on stimulation than parents of LR children. Most group differences were not accounted for by cognitive functioning. Instead, lower social engagement appears to be an important correlate of less advanced pretend skills, with implications for understanding the early development of children with ASD and for early intervention.     

Parental Perceptions of Services Provided for Children with Autism in Jordan

Providing formal support for children with autism and their parents is important and mandatory to improve children’s abilities and enhance the capabilities of parents. The present study attempted to investigate the perceptions of parents of children with autism regarding the services provided in Jordan. A questionnaire consisting of five sections was designed and distributed to a sample of 60 parents of children with autism (5–18 years old) among four special education institutions in Jordan. The questionnaire addressed five domains: demographics, type and number of received services, methods and difficulties of obtaining services, parents’ satisfaction, and parents’ perceived needed services. The results revealed that the service delivery system with which parents interacted was composed of multiple places and providers, but had several difficulties. Parents participating in this study expressed an average satisfaction with the received services. Issues pertaining to the cost of services, parents-professional partnerships, and overall quality of services were seen by parents as sources of low satisfaction. On the other hand, parents expressed the need for early intervention, family counseling, and community awareness services. Further suggestions and implications are presented in the study.     

The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment

Raising a child with an autism spectrum disorder (ASD) has often been associated with higher levels of parenting stress and psychological distress, and a number of studies have examined the role of psychological processes as mediators of the impact of child problem behavior on parent mental health. The current study examined the relations among child problem behavior, parent mental health, psychological acceptance, and parent empowerment. Participants included 228 parents of children diagnosed with ASD, 6-21 years of age. As expected, psychological acceptance and empowerment were negatively related to the severity of parent mental health problems. When acceptance and empowerment were compared with each other through a test of multiple mediation, only psychological acceptance emerged as a significant partial mediator of the path between child problem behavior and parent mental health problems. As child problem behavior increased, parent psychological acceptance decreased, resulting in an increase in parent mental health problems. These findings suggest that for problems that are chronic and difficult to address, psychological acceptance may be an important factor in coping for parents of young people with ASD, in line with the growing literature on positive coping as compared with problem-focused coping.