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Current guidelines for the treatment of anorexia nervosa (AN) in children and adolescents underline the central role of parents' involvement for positive therapy outcomes. However, little is known about the influence of cooperation between the parental couple on family functioning and the maintenance of food symptoms in the anorexic child. This exploratory study reports preliminary data on coparenting and family functioning in families of adolescents with AN and their associations with food symptoms, in terms of body mass index (BMI). The sample consisted of 24 families of adolescents with AN, who had been admitted to a specialized tertiary level children's hospital. Family coordination was evaluating using the Lausanne Trilogue Play (LTP) and coparenting style was measured using the Coparenting and Family Rating System (CFRS). Significant differences were found for different LTP functions (Friedman's chi-square = 52.188; p < 0.001) and phases (Friedman's chi-square = 10.277; p < 0.05). Families showed low coordination (66.7%) and a prevalence of dysfunctional co-parenting styles, including child-at-center (41.2%) and excluding (35.3%) styles. Families' ability to participate in the third phase of the LTP was positively associated with BMI (rho = 0.558, p < 0.01). The coparenting relationship impacts the maintenance of eating pathology, though this association requires further investigation. Moreover, in line with clinical observations, the results show a prevalence of unexpressed parental conflict in the study sample. The LTP seems to be a more accurate observational tool for this kind of family dynamic than the CFRS, because it includes covert competitive and conflictual behaviors. Highlights: Observational tools were used to assessing family alliance and coparenting. Collusive alliances and child-at-center coparenting styles were the most prevalent. Parents tend to involve the child in a covert parental conflict. Coparenting and family coordination showed a positive association with BMI. [ABSTRACT FROM AUTHOR]

Objectives: This study systematically reviewed existing qualitative evidence of family members' experiences prior to the initiation of mental health services for a loved one experiencing their first episode of psychosis (FEP). Methods: A meta-synthesis review of published peer-reviewed qualitative studies conducted between 2010 and 2019 were included. Keyword searches were performed in four electronic databases and the reference lists of primary manuscripts. Two independent reviewers used the Critical Appraisal Skills Programme (CASP) qualitative checklist to assess methodological quality of each study. Results: A total of 365 articles were initially identified and 9 were articles identified in a secondary review and literature search. A total of 21 met inclusion criteria. Of those included in this review 169, mothers were the primary family to recall experiences. The meta-synthesis identified four major themes related to family member experiences prior to the initiation of mental health services for FEP: the misinterpretation of signs, the emotional impact of FEP on family members, the effect of stigma on family members, and engaging with resources prior to mental health services for FEP. Conclusions: Additional research is needed to develop healthy communication strategies that effectively deliver educational information about psychosis. This meta-synthesis also identified the need to understand help-seeking behaviors among families of those with FEP in effort to reduce the duration of untreated psychosis and improve pathways to care often initiated by a family member. [ABSTRACT FROM AUTHOR]

In countries with public health insurance, caregivers may face long wait times to access services for children with intellectual and developmental disability. This limited access may compromise the adaptation of the child and their family, especially when specialized services (e.g., early intensive behavioral interventions) are needed to manage problem behaviors. Further, longer wait times can contribute to parental stress and increase problem behaviors in children. Therefore, the purpose of the current study was to evaluate the effectiveness of an online parent training for managing problem behaviors for families awaiting specialized services. Twenty-nine families of children with intellectual and developmental disability participated in a randomized controlled trial with random assignment to a waitlist control (i.e., sixteen families in the experimental group and thirteen in the waitlist group). Our results demonstrated that the online training led to reductions in the frequency of problem behaviors and parenting stress while improving caregivers' self-efficacy. This study provides preliminary evidence for the utility of an online training to support caregivers of young children with intellectual and developmental disability. Highlights: This online training can support caregivers in managing problem behaviors while awaiting services for their child. The results demonstrated that the training increased caregivers' sense of self-efficacy in managing problem behaviors. A significant decrease in parental stress was observed in caregivers who completed the online training. [ABSTRACT FROM AUTHOR]

Objectives: Positive Behavioral Support (PBS) is considered the treatment framework of choice for children with intellectual and developmental disabilities (IDD) at risk of behavior that challenges. PBS demands stakeholder engagement, yet little research has explored goal formation in this context for caregivers of children with IDD. Methods: We used Talking Mats and semi-structured interviews to support 12 caregivers of children with IDD who displayed behaviours that challenge, to develop goals for PBS. Interviews covered quality of life for caregivers and their child, adaptive and challenging aspects of child behavior, and aspects of caregiver's own behavior. Results: Caregivers were able to form individualised and meaningful goals in relation to all domains, demonstrating rich insight into personal needs and needs of their child. The process of forming goals was psychologically and emotionally complex given prior experiences and needs of participants but effectively supported by the interview method. Conclusions: We conclude that goal formation in PBS requires careful consideration and structuring but has the potential to support effective working relationships and ensure assessment and intervention is aligned with the needs and aspirations of families. [ABSTRACT FROM AUTHOR]

Parenting a child with learning disabilities (LDs) can not only be a fulfilling experience, but also a challenging one which can increase parenting stress as well as impair parenting self-efficacy, parental psychological well-being and interactions with the child. Informed by the parenting three-term causal model and the parenting stress model, the present research explored whether self-forgiveness was inversely associated to these undesirable outcomes in mothers of a child with specific LDs. Mothers' self-forgiveness for perceived failures in dealing with the child's disabilities was expected to be associated with their psychological well-being and their parental behaviors and relation with the child, both directly and indirectly through parenting stress and parenting self-efficacy. The hypothesized direct and indirect associations were assumed to be moderated by partner support. Data were obtained cross-sectionally from 92 mothers (M age = 43) of children (M age = 12) with diagnosed specific LDs. Self-forgiveness, conceived as a bi-dimensional construct, related to greater psychological well-being and to more accepting and less rejecting behaviors toward the child. For the negative dimension of self-forgiveness, these relations were mediated by parenting stress and parenting self-efficacy, whereas for the positive dimension of self-forgiveness the hypothesized mediational model was supported only for mothers who reported poor support from their partner. The implications for programs designed for parents of children with LDs are noted and several avenues for future research are described. Highlights: Studies examining the role of self-forgiveness for parenting failures are missing. We show that self-forgiveness may be beneficial for mothers of children with specific LDs. Self-forgiveness is associated with greater well-being and more accepting behaviors toward the child. The above relations are mediated by parenting stress and parenting self-efficacy. [ABSTRACT FROM AUTHOR]

Stakeholder involvement is fundamental to Positive Behavioral Support yet research in this area rarely obtains views of children with Intellectual and Developmental Disabilities. This study aimed to develop and demonstrate a means of engaging directly with children to identify personalized goals and priorities for their future support. An augmented communication approach was used to facilitate interviews with children who had a range of disabilities and displayed behavior that challenges. The interviewer asked children about activities, their own behavior, a caregiver's behavior, and quality of life to focus future potential assessment and intervention. We completed interviews in at least some areas with 9 out of 14 children. Children prioritized goals for future support and evidenced insight into behavior, needs, and preferences. These findings have promising implications for further direct engagement of children with disabilities throughout a support pathway to achieve outcomes rich in social validity. Highlights: This study interviewed children with Intellectual and Developmental Disability about their goals and priorities for support. An augmentative communication approach (Talking Mats) was used. Children who completed interviews identified goals and priorities for their behavior, caregivers and other life areas. It is possible to engage directly with some children who have intellectual and developmental disabilities in behavior support research and practice. [ABSTRACT FROM AUTHOR]

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments. [ABSTRACT FROM AUTHOR]

Empirical results are presented from school-based interventions in three California counties that are pioneering participants in a carefully evaluated effort to create an innovative system of care for youth with severe emotional disturbance. Data are presented about the educational attendance and achievement of youth enrolled in clinical and academic programs designed to provide collaborative mental health and education services. Attendance levels were uniformly high. The youth were below expected grade level as measured by standardized tests at program admission. Across programs, two counties demonstrated grade level increases of one year or more for one year in school on all subscales of established measures of educational achievement. The third county demonstrated increases of slightly less than one year on two of three subscales of the educational achievement measures. These results are the first from a multisite demonstration of integrated education and mental health programs embedded within a broader system of care for youth. The findings, combined with those from our prior studies, illustrate that is possible to reduce and control placements in restrictive levels of care while improving the academic performance of a vast majority of the youth enrolled in specialized programs within the care systems. [ABSTRACT FROM AUTHOR]

Asian Indian immigrant parents of children with intellectual and developmental disabilities (IDD) have unique experiences and challenges grounded within their cultural contexts and migration to United States. This study sought to describe these experiences using qualitative method. Open-ended interviews were individually conducted with 15 Asian Indian parents (8 mothers, 7 fathers) whose children were diagnosed with Down Syndrome, Autistic Disorder, or Pervasive Developmental Disorder- Not Otherwise Specified. Qualitative analysis generated 16 themes that were grouped into five domains: Cultural explanations, community response, and migration; impact on the self and family; sources of stress and support; a unique parenting approach; and hopes and fears for the future. In particular, parents described their local community's initial struggles with acceptance of IDD grounded within religious explanations of the disability. Similar to parents of children with IDD from other cultural groups, these parents described family support, broader social awareness and acceptance, and access to resources as sources of support and the lack of these factors as contributing to stress. A unique parenting approach emerged in reference to the child with IDD that included adjusting academic aspirations for the child, taking a practical, '1 day at a time' approach, and efforts to pass on cultural heritage. Parents voiced concerns about the future care of their child when they would not be around, as well as their hopes. These findings suggest the importance of attending to cultural meanings and local contexts when understanding parenting experiences. [ABSTRACT FROM AUTHOR]

The present study examined authoritative parenting and associations with parenting sense of competence and social support in Chinese mothers of children with intellectual disability and mothers of typically developing children. One hundred and sixty-seven mothers of children with intellectual disability with a mean age of 10.89 years (SD = 1.74) and 119 mothers of typically developing children with a mean age of 10.55 years (SD = 1.10) participated in a survey. Mothers of children with intellectual disability reported similar levels of parental warmth, and less use of reasoning and autonomy support compared with mothers of typically developing children. Parenting efficacy contributed uniquely to three dimensions of authoritative parenting for mothers of children with intellectual disability. By comparison, parenting efficacy did not contribute to use of reasoning and autonomy support for mothers of typically developing children. Social support made a unique but small contribution to parental warmth but not to parental reasoning and autonomy support for mothers of children with intellectual disability. For mothers of typically developing children, social support was associated with both parental warmth and autonomy support. This study suggests that child disability status is related to maternal authoritative parenting, and additionally, parenting efficacy plays a more critical role in predicting authoritative parenting of Chinese mothers of children with intellectual disability than mothers of typically developing children. [ABSTRACT FROM AUTHOR]

Mothers of children with autism spectrum disorders (ASD) experience considerable amounts of distress and experiences of crisis. The Family Adjustment and Adaptation Response model provides a theory for understanding the experience of distress and crisis in families, and the purpose of the present study was to examine experiences of distress in mothers of individuals with ASD using this framework. We specifically investigated how parent empowerment and positive gain were related to their experiences of distress, whether as mediators or as moderators of child aggression. Participants included 156 mothers of children with ASD ranging in age from 4 to 21 years. Mothers completed an online survey of demographics, problem behaviors, family empowerment, positive gain, and distress. We conducted path analyses of multiple mediation and moderation. Results indicated that greater child problem behavior was related to less parent empowerment, which was related to greater maternal distress, supporting empowerment as a partial mediator. At the same time, greater child aggression was not related to maternal distress in mothers who report high rates of positive gain, suggesting that parent gain functions as a moderator. The implications for how and when clinicians intervene with families of children with ASD are discussed. [ABSTRACT FROM AUTHOR]

Maladaptive behaviors, such as aggressive and disruptive behaviors, are a significant risk factor for maintaining community placement by individuals with intellectual disabilities. When experienced researchers provide training to individuals with intellectual disabilities on a mindfulness-based strategy, Meditation on the Soles of the Feet, the individuals are able to effectively self-manage their maladaptive behaviors. We investigated whether similar effectiveness would be found if community-based therapists provided the training to similar individuals living in the community. Three adults with mild intellectual disabilities and mental illness living in the community were taught by a community-based therapist to use this strategy to control maladaptive behaviors that included verbal aggression, disruptive behavior and physical aggression. They were taught to shift the focus of their attention from the negative emotions that triggered their maladaptive behavior to a neutral stimulus, the soles of their feet. All three individuals were able to reduce their maladaptive behaviors to near-zero levels and maintain their community placement that they had been at risk for losing, due to their maladaptive behavior. Subjective measures of various psychological symptoms showed a reduction in two of the individuals. Our study suggests that the demonstrated effectiveness of Meditation on the Soles of the Feet can be achieved by a community-based therapist. [ABSTRACT FROM AUTHOR]

Within a comprehensive mental health service array for youth, Intensive Home Based Services (IHBS) are designed to meet the needs of youth with significant emotional and behavioral problems in their home communities, avoiding the need for out-of-home services, particularly residential care. We examined youth receiving IHBS as their first service in the state of Hawaii system of care ( N = 163) to determine how successful IHBS were in preventing the need for more restrictive services within 12 months of intake. Subsequently, we investigated characteristics that might be predictive of a youth’s need for service intensification within 12 months. Logistic regression analyses found that greater age, level of service need, and functional impairment at intake predicted use of more restrictive services within 12 months of intake, whereas gender, ethnicity, diagnosis, service intensity, and clinician credentials did not. Overall, our findings suggested that IHBS were reasonably successful in preventing residential placements, and provided some basis for determining characteristics of youth likely to require more restrictive placements within a one year period. [ABSTRACT FROM AUTHOR]

The present study investigated the associations among perceived adherence to the system of care philosophy, changes in internalizing and externalizing behaviors, and consumer satisfaction with services. Participants included 98 families, interviewed at two time points across a one-year period. Hierarchical multiple regressions indicated that the more a child and family perceived services to be consistent with the system of care philosophy, the greater their level of satisfaction with services and the fewer internalizing and externalizing behaviors they reported one year after receiving services (controlling for initial levels of problem behaviors). Implications for children’s mental health service delivery are offered. [ABSTRACT FROM AUTHOR]

We investigated the readability of seven mental health brochures on mental, emotional, and behavioral disorders in children that were selected from a website developed by the Center for Mental Health Services at www.mentalhealth.org. The reading grade levels of the brochures ranged from 11.1 to 14.8 (mean 13.23), considerably higher than the 8th grade level recommended for educational material by the U. S. Department of Education (1986). On other readability variables, assessed using the Readability Assessment Instrument (RAIN; Singh, 1994), all brochures met criterion on most variables but failed on those for new words (audience appropriateness) and print size. This is a favorable result in comparison with other studies that have assessed readability of mental health information on the lnternet using the RAIN, although less so with reading grade levels. [ABSTRACT FROM AUTHOR]

We studied 205 low-income families, using the Family Needs Scale (FNS). Factor analysis of the FNS data resulted on a 7-factor solution with high internal consistency within the various subscales. We provide normative scores based on the factor structure of the FNS. A total of 53 parents completed the FNS on two occasions with an average of four weeks between these two ratings. In general, the test-retest reliabilities were low to moderate. A total of 61 pairs of parents independently rated their families with the FNS. Again, agreement between raters was low to moderate. Several factors that may have detracted from better testretest and interrater reliability were identified. Our data point to the need for more psychometric steadies with the FNS. [ABSTRACT FROM AUTHOR]

The relationship between marital discord and any DISC-2.1/DSM-III-R child psychiatric diagnosis was explored. Interview data from a community sample of 90 parent/child pairs and a clinic sample of 37 parent child/pairs were analysed. The data were collected at Columbia University/the Sew York State Psychiatric Institute as part of the pilot project of a multi-site methodological study. Rates of marital discord and DISC diagnoses were found higher in the clinic sample than in the community sample. The association between martial discord and any diagnosis remained significant when other risk and protective factors were controlled. Policy implications and recommendations for future research strategies suggested by the current exploratory study were discussed. [ABSTRACT FROM AUTHOR]

Families of children with physical disabilities show substantial differences in the levels of adjustment of both the children and their parents. These differences result, in part, from the complex interplay of family and child adaptation resources, such as coping and social support. In order to identify factors which may differentiate levels of adjustment among families with children with physical disabilities, this study examined relationships among optimism, primary and secondary appraisals of and coping with child-related stressors, maternal psychological adjustment, and child adjustment in 29 families with a child with spina bifida without mental retardation and 28 comparison families with a nondisabled child. For the spina bifida group, primary appraisals were related to the use of avoidant coping strategies, and these coping strategies were related to maternal psychological adjustment and child internalizing behavior problems. No significant differences between the groups in terms of the nature of the relationships or in the levels of the variables were found with the exception that mothers of children with spina bifida were less optimistic than comparison mothers. These data support the importance of coping in understanding the psychological adjustment of mothers faced with a chronic stressor in the family. [ABSTRACT FROM AUTHOR]

This article presents information on the first ten years of publishing the "Journal of Child and Family Studies." The author provides background on the idea for this journal and the creation of a single-source periodical that focused on research, evaluation, practice, and policy issues with children and adolescents with serious emotional disturbance and their families. In the first 10 years, the journal has published 308 papers. Of these, 220 were data based, with 211 using quantitative and 9 qualitative methodologies, 18 were reviews or conceptual papers, and 19 were program descriptions. During this period, the Journal has also published seminal articles in a number of fields. It is noted that papers on other systems of care, such as multisystemic therapy, have also appeared in this Journal.

Parental burnout emerges as a response to chronic and overwhelming parenting stress and is related to dysfunctional parenting practices, such as neglectful or violent behavior. Grounded in Self-Determination Theory, the current study aims to evaluate parenting stress as an antecedent and the more general quality of parenting as an outcome of parental burnout. This objective is tackled within the context of the COVID-19 pandemic, which posed major challenges to parents, especially to those raising children with complex care needs (CCN; i.e., an intellectual and/or physical disability, and/or behavioral and/or emotional problems). Therefore, this study explores mean-level group differences in parenting stress, parental burnout, and parenting behaviors between parents raising children with and without CCN, and tests whether associations between these variables are similar for both groups of parents. A group of 506 parents (88% mothers, Mage = 44 years) participated in a widespread online survey during the first lockdown in Belgium. Based on mean-level differences, parents of children with CCN reported substantially higher levels of parenting stress and parental burnout but scored similarly on the assessed parenting behaviors. Multigroup structural equation models showed that in both groups, parenting stress was related positively to parental burnout which, in turn, was related to less autonomy-supportive and responsive parenting and to more psychologically controlling parenting. Although raising a child with CCN may be a risk factor for increased parental stress and burnout, the functional role of these parental experiences in the quality of parenting appears to be similar across both groups of parents. Highlights: This study examines associations between parenting stress, parental burnout, and parenting behaviors during COVID-19. Parenting stress positively related to parental burnout which, in turn, related to less need-supportive and more need-thwarting parenting. Although parents of children with CCN experienced more parental stress and burnout, they did not display lower quality of parenting. The role of parental stress and burnout in the quality of parenting was similar across parents of children with and without CCN. [ABSTRACT FROM AUTHOR]

A voluminous body of scientific literature has found that challenging behaviors (CBs) in children with intellectual disabilities (ID) or autism spectrum disorder (ASD) are associated to symptoms of anxiety in their parents. There is also emerging evidence that they are linked to post-traumatic symptoms in their parents. However, fewer studies have investigated the psychological adjustment of their siblings. Various studies have found that these siblings display high levels of anxiety, but none has explored their psychological adjustment using a developmental trauma theory. This scoping review aims to take stock of the evidence on the psychological adjustment of siblings of children with ID or ASD and CBs in order to explore if the context in which they grow up and some of their psychological challenges could be understood within the framework of developmental trauma theory. A search was conducted in four databases (PubMed, CINAHL, PsycInfo and Embase), and 42 relevant studies were identified and analyzed. The analysis revealed that siblings of children with ID or ASD and CBs report both a familial context and symptoms that may fit within trauma theory. This scoping review therefore gathers evidence on the psychological adjustment of siblings of children with ID or ASD and CBs while also shedding a new light on some of the experiences they may have using trauma theory. This supports the idea that using trauma theory in this population is relevant and would allow for a better understanding of their reality and the development of resources tailored to their specific needs. Highlights: Exposure to the CBs of a sibling with an ID or ASD during childhood appears to be a stressor that can be understood using developmental trauma theory. Most selected studies report trauma-related symptoms in siblings of a child with ID or ASD and CBs. While selected studies explored some trauma-related symptom domains in theses sibling, none investigate all seven trauma-related symptom domains. This study highlights the need to document the effects of CBs on siblings' psychological adjustment notably by investigating their potentially traumatic impact. [ABSTRACT FROM AUTHOR]

The primary goal of this study was to examine differences between brothers and sisters of individuals with intellectual and developmental disabilities, according to sex (brothers/sisters) and the type of disability diagnosed in the sibling (intellectual disability or autism). The study examined brothers' and sisters' involvement in the lives of their sibling with the disability, their personal resources (self-efficacy, sense of coherence), feelings of loneliness, and their adjustment (mental health). There were 99 participants in the study, 59 siblings of individuals with intellectual disability and 40 of individuals with autism. Participants completed self-report questionnaires examining involvement, resources (self-efficacy, sense of coherence), loneliness, and adjustment (mental health). MANOVAs were used to examine differences between brothers and sisters. Results of the study revealed significantly higher levels of involvement, self-efficacy, and adjustment (mental health) for sisters compared to brothers, and significantly higher levels of loneliness for brothers compared to sisters. Similarly, there were differences based on the disability, such that those with a sibling with autism reported less distress than those with a sibling with intellectual disability. The study's findings can serve as a basis for current and professional knowledge, and contribute to intervention programs to support siblings and rely on these findings to address the needs of both brothers and sisters. Highlights: The study examined differences between brothers and sisters of individuals with intellectual and developmental disabilities. Sisters showed higher levels of involvement, self-efficacy, sense of coherence, and adjustment compared to brothers. Brothers of individuals with ID revealed higher levels of distress than brothers of individuals with ASD. Intervention programs that specifically target sisters and brothers of individuals with IDD should be designed. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic and the measures taken to contain it have had a disproportionate impact on families with young children, especially with disabilities. This study examined factors associated with burden and growth among parents of young children in Israel, while comparing parents of children with and without disabilities. We hypothesized that the association between family functioning, informal social support, and perceived adequacy of educational services and burden and growth would be moderated by disabilities. An online questionnaire was completed by 675 parents of young children, 95 of them with disability. The moderating effect of disability on burden and growth was examined using PROCESS. Compared to parents of children without disabilities, greater burden was found among parents of children with disabilities, but levels of growth were similar. External support was lacking for both parent groups. Educational services were perceived as severely inadequate. Lower perceived adequate educational services were associated with greater burden. On the other hand, higher levels of family functioning (i.e., family cohesion and adaptability) and greater adequacy of educational services were associated with growth. The results show that while burden was greater for parents of children with disabilities, growth during the COVID-19 period was possible for parents of both groups. The findings also pointed to the importance of the family system for sustaining the wellbeing of its members in lockdown situations. Put together, the findings highlight the importance of planning for such national and global emergencies. Highlights: Levels of burden are higher among parents of children with disabilities. Informal sources of support for families during COVID are minimal. Enhanced family functioning during COVID is associated with lower burden and higher growth. Inadequacy of educational services is associated with greater burden and lower growth. [ABSTRACT FROM AUTHOR]

Parents' involvement in their child's educational and therapy choices is an important aspect of their therapy. This involvement may be related to their satisfaction with their child's service providers' direct child services family-related involvement. Additionally, civil unrest may influence parents' satisfaction. For example, the Syrian civil war, which began in 2011, has influenced families with children in schools, and specifically children who have disabilities. The purpose of this descriptive and exploratory study was to investigate parents' perceptions of current services provided in Syria for their children with disabilities, and to identify the services provided to Syrian children with ASD and other developmental disabilities. A total of 466 parents completed the study's survey, with about half of the participants reporting that their child received early intervention and fewer that their child received other therapies (e.g., speech, behavioral, counseling). Parents also reported feeling unwelcome to contribute to their child's individualized education program (IEP), and were not satisfied with the services their child received. In addition, some demographic factors, such as place of residence, the child's current age, the child's diagnosis, the child's attending age at school, and which program the child was enrolled in, increased the parents' satisfaction level. Implications and future research are discussed. Highlights: Parents' involvement can negatively or positively impact parents' engagement in their children's education. Receiving services in unordinary circumstances, such as during the civil war, impacts parents' sense of satisfaction. The programs used acceptable methods and focused on behaviors that are important to families. Parents were dissatisfied with the safety precautions taken at school. Staff should provide a structured environment in order to be able to manage students' behaviors. [ABSTRACT FROM AUTHOR]

Objectives: The family of the students with Down syndrome, just as in the case of any other child, is the main party responsible for their education, and the main socializing agent, as the family is in permanent contact with the student and knows about the characteristics of the child more than anyone. The aim of this study is to provide information on the educational response that regular Spanish schools offer to the students with Down Syndrome through the parent's and the teacher's perceptions. Methods: Therefore, 218 questionnaires were provided to parents of children with Down syndrome, and 22 in-depth interviews to education professionals (regular teachers of students with Down syndrome). Results: The results indicated that the parents positively perceived the educational response offered by the schools to their children, however, although the schools shared the principles of inclusion, they differed on the manner that it was implemented, pointing to the lack of material and human resources. They also considered that the teacher's training was appropriate. Conclusions: In conclusion, that the families of students with Down syndrome had positive perceptions towards inclusive education of their children. However, although they shared the principles of inclusion, they disagree on the manner in which these were being implemented. [ABSTRACT FROM AUTHOR]

Objectives: Self-stigma in parents of children with a mental health disorder is a painful experience, yet the process by which it is formed is poorly understood. A model of this process would improve our understanding and inform intervention development. The two existing models of self-stigma have not been tested with parents of children with a mental health disorder specifically, and are inconsistent with qualitative research findings suggesting an alternative explanation. Thus, this study aimed to test a model of parents' self-stigma drawn from qualitative research, in which parents' awareness of stigma predicts parents' self-doubt about their parenting, self-doubt predicts self-stigma, which in turn predicts affective distress. Methods: Parents of children with a mental health disorder (n = 424) completed measures representing each of these model components. Results: Using structural equation modelling and after controlling for child symptoms and demographics, significant direct pathways were found from awareness of stigma to self-doubt, self-doubt to self-stigma, and self-stigma to affective distress. Conclusions: These findings suggest that self-doubt is an important step in internalising stigma as self-stigma. Furthermore, self-stigma is related to serious consequences for parents' psychological wellbeing and hence, the parent-child relationship. Findings are discussed in terms of their implications for theory and self-stigma interventions. [ABSTRACT FROM AUTHOR]

Single case design research on family centered positive behavior support (PBS) over the past 20 years has provided evidence of the approaches acceptability, effectiveness and durability when implemented with families of children with developmental disabilities and problem behavior. Although quality of life is a key tenet of PBS, only a few studies of PBS with families have measured quality of life outcomes. The purpose of this study is to present family functioning results from the second half of a longitudinal study that investigated the consequential validity of an ecological approach to family centered PBS. The approach aimed to transform coercive into constructive family processes in family routines during a process of comprehensive assessment, multicomponent plan design and implementation support in collaboration with families. Ten families of children with developmental disabilities participated. Settings were 32 family routines, with two to four routines per family. Family functioning measures were family quality of life, parental stress, parental locus of control and social support. A repeated measures, quasi-experimental group design across mothers and fathers evaluated the statistical significance of changes in family functioning when comparing baseline to intervention and follow-up phases. Results evidenced significant improvements for mothers in family quality of life and parental stress during intervention and follow-up, and in parental locus of control during follow-up. Results evidenced significant improvements for fathers in parental stress during intervention and follow-up, but no significant improvements in family quality of life or parental locus of control. Results are discussed in terms of contributions to the literature, implications for practice, limitations, and future research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study examined how the parents of young children with autism spectrum disorders perceive the quality determinants of services provided to them in the context of a public network of services. The perceptions of 176 families who were receiving, or had received, specialized services for at least 12 months and were living in urban, suburban, and rural areas were investigated on three fronts: the relative importance of four determinants of quality, their degree of realization, and parents' satisfaction relative to these determinants. These determinants were the accessibility, continuity and flexibility of services, as well as the validity of information provided. Parents felt that the accessibility, continuity and flexibility of services were the most important determinants of quality. However, continuity and accessibility were also perceived as being the least realized. Parents were more satisfied with the validity of information and the flexibility of services than with their continuity and accessibility. These response patterns were observed consistently among parents from urban, suburban, and rural areas, with the exception that rural residents were less satisfied with the continuity of services. Such results emphasize the importance of examining perceived quality from a dynamic perspective. Indeed, the complex relationships that may exist between different aspects of quality, parents' expectations and concerns, along with the actual service delivery conditions, must be taken into account. Our findings also provide an incentive to pursue the development and implementation of evidence-based innovative practices to enhance the integration of services. [ABSTRACT FROM AUTHOR]

Youth with learning disabilities (LDs) have information processing challenges that place them at increased risk for emotion dysregulation and often rely on coping strategies that emphasize avoidance of challenging emotions, experiences or tasks. Integra mindfulness martial arts (MMA) was developed to address and help participants cope with these challenges and increase self-awareness and present-focus. The present exploratory qualitative study includes results from a post-treatment questionnaire completed by 29 youth aged 12-17 and 17 parents, and in-depth interviews with 7 youth who participated in MMA and 5 parents. (1) Youth goals for MMA; (2) perceptions of program components and delivery; (3) outcomes associated with participation; and (4) challenging/negative aspects of the program were explored. Thematic analysis of interviews suggested that the development of mastery and pride was a common motivating factor for entering treatment. The mindfulness component of MMA was identified as helpful in promoting a sense of calm, tolerance and acceptance of distress, and self-understanding in youth. This research provides preliminary support for the Integra MMA program from the perspective of participants. Future research directions and clinical implications for treatment of youth with LDs are discussed. [ABSTRACT FROM AUTHOR]

Parental and professional caregivers of individuals with developmental disabilities (DD) often experience stress and hardship associated with their role, placing them in real danger of burnout and affecting their quality of care. Mindfulness practice is currently being applied to address these issues. We conducted a systematic literature review to explore the effects of mindfulness practice and analyse the intervention and methodological features used for eliciting these effects. An initial search produced 386 publications. Of these, seven met the selection criteria of intervention studies that applied mindfulness to parental and professional caregivers of individuals with DD. We found, from analysis of seven studies, direct effects of mindfulness practice for practitioners (i.e., parental and professional caregivers) and crossover effects for individuals with whom these practitioners interacted (i.e., their children and care recipients). The studies under review collectively suggest that the practice of mindfulness in everyday life over significant periods of time can both improve the experience of care providers and support them in providing a better standard of care for care recipients. Limitations of current mindfulness intervention studies and some implications for future studies are discussed to strengthen the application of mindfulness for individuals influenced by DD. [ABSTRACT FROM AUTHOR]