Article

Parenting Stress, Child Behavior Problems, and Dysphoria in Parents of Children with Autism, Down Syndrome, Behavior Disorders, and Normal Development

January 1991
Exceptionality 2(2):97-110

January 1991
2(2):97-110

Authors:

We assessed differences in parental reports of parenting stress, child behavior problems, and dysphoria in 150 families who had children with autism (n = 30), behavior disorders (n = 30), Down syndrome (n = 30), or normal development (n = 60). We measured stress with the Parenting Stress Index, child behavior problems with the Eyberg Child Behavior Inventory, and dysphoria with the Beck Depression Inventory. We controlled data for sociodemographic differences across groups, and results indicated the following: (1) Parents of children with autism and behavior disorders experienced statistically and clinically higher levels of parenting stress than parents in the other two groups. (2) Parents of children with behavior disorders reported that their children presented behavioral difficulties that were statistically and clinically more intense and numerous than those of all other children. (3) Mothers of children with autism and behavior disorders experienced statistically and clinically higher levels of dysphoria than mothers in the other two groups, which appeared to be specifically related to the stresses of parenting exceptional children rather than to personal dysfunction. In contrast, mothers of children with Down syndrome did not differ from mothers of nondisabled children on any of the measures. Finally, no major effect of the children's age or gender was found across the four groups, except for the fact that mothers of younger (less than 7 yrs, 5 mos.) autistic children reported greater dysphoria than mothers in the other three groups.

Psychological Stress Among Mothers of Children with Autism Spectrum Disorder and Down Syndrome in the City of Kufra

Article

Full-text available

Jun 2021

Mansour Mohammed Ali Bopaeda

Having a baby is a huge responsibility. It often happens that mothers, especially when they are having their first baby, feel stressed and incompetent in their role as mothers even as their children normally grows. The purpose of this article is to identify the general features of psychological stress among mothers of autism spectrum disorder and Down syndrome and to identify the differences and relationship in psychological stress between mothers of autism and down syndrome. In this study participated a group of mothers with children who have autism (n = 44) and mothers of children with Down syndrome (n = 44). The findings made proved that the general features of psychological stress are high Among mothers of autistic children, while it was low among mothers of Down syndrome, there were also statistically significant differences in the level of psychological stress between mothers of autism and Down syndrome, and a correlation was found between mothers of autism and Down syndrome at the level of significance (0.01).

Beyond Perception: Developing Parental Perception of Severity of Disability Scale

Article

Full-text available

Aug 2022

Araştırmalar yetersizlikten etkilenme derecesine ilişkin algının, bireylerin diğer psikolojik değişkenleriyle ilişkili olduğunu göstermektedir. Yetersizlikten etkilenme derecesi arttıkça bireylerin iyi oluş hali etkilenmektedir. Alanyazında ise algılanan yetersizlikten etkilenme derecesi için ölçme aracı gereksinimi belirtilmektedir. Görüşmeler (8), pilot uygulama (57), ana uygulama (688) ve DFA uygulaması (300) olmak üzere toplamda 1053 katılımcı ile yapılan bu ölçek geliştirme çalışmasında madde havuzu oluşturulmuş, uzman görüşü alınmış ve ardından pilot çalışma yapılmıştır. Bağımsız gruplardan toplanan veriler ile geçerlik ve güvenirlik analizleri gerçekleştirilmiştir. Analizler sonucunda 34 maddelik beş faktörlü YEDA Ölçeği ortaya çıkmıştır. Birinci düzey Doğrulayıcı Faktör Analizi (DFA) ile yapı doğrulanmıştır. Ölçeğin açıklanan varyansı %62.27, iç tutarlığı .95 ve Beck Depresyon Envanteri (BDE) ile ölçüt korelasyonu .50’dir. Ayrıca iki yarı güvenirliği ve test tekrar test güvenirliği .81’dir. Hafif, orta ve ağır yetersizlik düzeyleri arasında anlamlı fark bulunmuştur. Alt faktörler arası Ortama Açıklanan Varyans (AOV) .44 ile .57 arasında değişmektedir. Bu bulgular ışığından YEDA Ölçeğinin geçerlik ve güvenirlik şartlarının sağladığı, ebeveynlerin gözünden YEDA ile yetersizlikten etkilenme düzeyinin izlenebileceği ve alanyazında vurgulanan yetersizlikten etkilenme düzeyine ilişkin ebeveyn algıları ile örtüştüğü söylenebilir. YEDA Ölçeği alanda çalışan uzmanların kullanabileceği ve ebeveynlerin psikolojik değişkenleri ile ilişkisine bakılabilecek bir ölçme aracıdır.

The well-being of mothers of children with intellectual disabilities in Saudi Arabia

Thesis

Jan 2005

Shatha Khusaifan

p>The aims of this thesis were threefold. First, an exploratory study of the Saudi mothers’ stress, mental health status, ways of coping, social support provided to them and type of family structure preferred by them, which was achieved by recruiting twenty mothers of children with various Intellectual Disabilities (ID), (Study 1). Second, translating and modifying the original English measures, testing the psychometric properties and finding the new factors of the translated scales by recruiting sample of mothers with Typically Developing (TD) children (N=504) and mothers of ID children (N=513), (Studies 2 & 3). The first set of studies focused mainly on the development of measures that were translated into Arabic. The reliability and validity of all the measures were acceptable. Inserting tow additional religious coping items into the Brief COPE did not jeopardise the psychometric properties of the measures, but rather added to its predictive and construct validity. The third aim of this thesis, which was divided into two sub-studies (Chapters 9 and 10) focused on testing the hypothesised model of adjustment to ID by testing all mediating and moderating possibilities. Multiple regression modelling procedures permitted the identification of indirect and direct effects. Results revealed that mothers of children with ID showed higher levels of stress, anxiety and depression than mothers of TD children. In addition, Behavioural Disorders (BD) were significantly stronger than IQ in predicting maternal outcome and only some child and families characteristics have an effect on maternal well-being. Results also provided general support for the proposed model. Religious coping had a moderating effect between BD and maternal stress, between BD and maternal anxiety and between IQ and maternal anxiety. Emotion-focused coping showed a significant moderating effect on BD and maternal anxiety. Regarding social support, satisfaction with support (SPS) showed a nearly significant moderating effect between BD and maternal anxiety. The helpfulness of social support (FSS) showed a nearly significant effect between IQ and maternal stress. Whereas, network size (FSS2) had a significant moderating effect between IQ and maternal stress.</p

Presenting a New Framework to Improve Engagement in Physical Activity Programs for Children and Adolescents With Social, Emotional, and Behavioral Disabilities

Article

Full-text available

May 2022

Children and adolescents with psychiatric and neurodevelopmental diagnoses such as anxiety, depression, autism, and attention-deficit/hyperactivity disorder (ADHD) face enormous health disparities, and the prevalence of these disorders is increasing. Social, emotional, and behavioral disabilities (SEBD) often co-occur with each other and are associated with unique barriers to engaging in free-living physical activity (PA), community-based exercise and sports programming, and school-based physical education. Some examples of these barriers include the significantly depleted parental reserve capacity associated with SEBD in children, child dysregulation, and previous negative experiences with PA programming and/or exclusion. Importantly, most SEBD are “invisible,” so these parents and children may face more stigma, have less support, and fewer inclusive programming opportunities than are typically available for children with physical or intellectual disabilities. Children’s challenging behavioral characteristics are not visibly attributable to a medical or physical condition, and thus are not often viewed empathetically, and cannot easily be managed in the context of programming. Existing research into PA engagement barriers and facilitators shows significant gaps in existing health behavior change (HBC) theories and implementation frameworks that result in a failure to address unique needs of youth with SEBD and their parents. Addressing these gaps necessitates the creation of a simple but comprehensive framework that can better guide the development and implementation of engaging, effective, and scalable PA programming for these youth and their families. Therefore, the aim of this article is to: (1) summarize existing research into SEBD-related child and parent-level barriers and facilitators of PA evidence-based program engagement; (2) review the application of the most commonly used HBC and disability health theories used in the development of evidence-based PA programs, and implementation science frameworks used in adaptation and dissemination efforts; (3) review the SEBD-related gaps that may negatively affect engagement; and (4) describe the new Pediatric Physical Activity Engagement for Invisible Social, Emotional, and Behavioral Disabilities (PAID) Framework, a comprehensive adapted PA intervention development and implementation adaptation framework that we created specifically for youth with SEBD and their parents.

Social Dilemmas Faced by Parents of Children Diagnosed with Autism in China

Chapter

Full-text available

Dec 2022

Lezhi Wang

The Effect of Acceptance and Commitment Therapy for Improving Psychological Well-Being in Parents of Individuals with Autism Spectrum Disorders: A Randomized Controlled Trial

Article

Full-text available

Jun 2021
BSRCCS

Background: Acceptance and Commitment Therapy (ACT) has been demonstrated as effective in improving psychological well-being in several clinical domains, but there is no evidence regarding the parents of children with Autism Spectrum Disorder (ASD). Methods: In this randomized controlled trial, we evaluated the efficacy of the ACT matrix behavioral protocol in comparison to the Parent Training (PT) program, measuring several primary and secondary outcomes prior to and following treatments. Twelve parents were randomly and equally assigned to two demographically matched groups wherein individuals underwent 24 weekly meetings of ACT protocol (experimental group) or conventional PT (control group). Results: Parents enrolled in the ACT protocol demonstrated significant improvement in psychological flexibility, awareness states, personal values in everyday life, and parental stress, whereas reduced scores were elicited in parents' perceptions of their child's disruptive behaviors. Conclusions: The results of this randomized controlled trial, if repeated with a large number of subjects, could open the way to include ACT protocols in daily practice to support the development of new parenting skills.

Needs and Coping during the COVID-19 Pandemic among Families of Children with Autism Spectrum Disorder in a Government Tertiary Hospital

Article

Full-text available

Apr 2024

Background. The COVID-19 pandemic has affected the well-being of children with Autism Spectrum Disorder (ASD) and their families. The core deficits of the condition and increased parental stress during this time made them more vulnerable. Objectives. This study aims to explore how the pandemic has affected these families by identifying their needs and capabilities in order to provide support. Methods. A total of 227 parents of children with ASD completed an online survey consisting of items on sociodemographic, family needs, and coping strategies. Descriptive statistics were used and t-test and ANOVA/Kruskal Wallis were used to determine the relationship between parent and child factors with needs and coping. Results. Needs for Information, Community Services, and Finances are the top categories while the greatest identified need during this pandemic was for financial assistance. Religiosity, Problem-Solving, and Cognitive Reappraisal were the widely used coping strategies by the parents. Fathers, younger children, daughters with ASD, and having more than one child with ASD showed significant association with needs. Parents with primary and tertiary education were associated with use of the cognitive reappraisal strategy and those with jobs were associated with substance use. Conclusion. Families of children with ASD have multiple needs during this pandemic, from autism-specific information and services, to more generic concerns such as financial assistance. Despite these challenges, these families have positive strategies in place to facilitate coping mechanisms.

Parenting Stress in Immigrant Families of Children With an Autism Spectrum Disorder: A Comparison With Families From the Host Culture

Conference Paper

Jan 2016

Immigrant families of children with autism spectrum disorders (ASD) face significant challenges in accessing and using rehabilitation services appropriate for their child’s disorder. Compared to families native to their host country, the stress experienced by these families in relation to their child’s condition may be magnified by their immigrant status. This study compared self-reported parenting stress levels among 24 mothers and 17 fathers who had immigrated to Canada to income-matched, Canadian-born parents. Overall, Canadian-born parents tended to report higher stress levels than immigrant parents, but this may be primarily due to the high stress levels among Canadian-born fathers relative to immigrant fathers and mothers from both types of families. These findings highlight the necessity of using supplemental and specialized stress measures when focusing on immigrant families, for whom stress associated with the immigration process may compound or manifest separately from parenting stress. Cultural influences on the perception of ASD (its causes, treatment, and prognosis), children’s place in the family, and parents’ roles in childrearing may also impact stress.

Exploring the Relationship between Perceived Social Support, Perceived Stress, and Resilience among Caregivers of Children with Autism

Article

Full-text available

Jul 2023

Varsha Singh

The study intended to examine the levels of perceived stress, perceived social support, and resilience among caregivers of autistic children. The sample consisted of 100 caregivers from various parts of Tamil Nadu and Karnataka, and the children's ages ranged from 1.5 to 9 years. The variables were assessed using the Multidimensional Scale of Perceived Social Support Zimet, Dahlem, Zimet, and Farley (1988) Autism Parenting Stress Index, and Connor-Davidson Resilience Scale (2003). The results of the study indicated that perceived stress among caregivers was negatively associated with resilience. In other words, higher levels of perceived stress were allied with lower levels of resilience. However, the study did not find a significant effect of perceived social support on perceived stress among caregivers. Based on these findings, the study suggests that health professionals and organizations should take obligatory steps to improve the mental health of caregivers. Enhancing the well-being of the child and their families can be achieved by addressing the caregivers' mental health needs.

Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships

Article

Full-text available

Jan 2024

Sebastian Trew

This study aimed to investigate the impact of external factors on the experiences and family relationships of autistic adolescents and their families. A qualitative approach was used, with in-depth interviews conducted with 30 participants, including autistic adolescents, siblings and parents from within families with an autistic adolescent family member. The findings suggest that external factors significantly influence the well-being of autistic adolescents and their families. The school environment was identified as a significant factor, with sensory overload, bullying and adverse interactions with teachers having a negative impact on the mental health and quality of family relationships for participants. In addition, the study highlighted that isolation and stigma were major concerns for families, suggesting a need for public efforts to raise awareness and understanding of autism. The lack of appropriate support and services was also identified as a significant challenge that families face. The study highlights the need for person-centred approaches to service provision, which involves including autistic adolescents and their families in the design and delivery of support and services. The study recommends collaboration among schools, service providers, and families, as well as efforts to promote autism-friendly environments in schools and the broader community. Lay abstract The influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support.

A Meta-Analysis of Treatment for Self-Injurious Behavior in Children and Adolescents With Intellectual and Developmental Disabilities

Article

Jan 2024

Self-injurious behavior (SIB) among children and youth with developmental disabilities has not diminished in prevalence despite the availability of effective interventions, and the impact on quality of life for people and their families is devastating. The current meta-analysis reviews SIB intervention research between 2011 and 2021 using single-case experimental designs with children and youth up to 21 years old and provides a quantitative synthesis of data from high-quality studies including moderator analyses to determine effects of participant and study characteristics on intervention outcomes. Encouraging findings include a high level of effectiveness across studies in the decrease of SIB (Tau- U = −0.90) and increase of positive behavior (Tau- U = 0.73), as well as an increase in studies (relative to prior reviews) reporting intervention fidelity, generalization, maintenance, and social validity. However, our findings shed limited light on potential moderating variables in the development of interventions for children and youth who exhibit SIB. Of the potential moderators of intervention effects, only implementer (researcher/therapist vs. parent/caregiver) and setting (clinic vs. home) were significantly associated with improved outcomes. We discuss the need for more robust involvement of natural communities of implementers in SIB intervention research to better equip them to effectively and sustainably meet the needs of people they care for. We also discuss the importance of creating systems enabling broad access for children with SIB to effective interventions in service of reducing burden for people, families, and society over time.

Walking in Their Shoes: Exploring the Lived Experiences of Mothers of Autistic Children

Article

Full-text available

Oct 2023

There has been a dramatic increase in Autism Spectrum Disorder (ASD) around the globe. A growing body of research has sought to characterize the different presentations of ASD among boys and girls. However, very limited number of Indian studies have focused on mothers of children with ASD. As mothers are the major caregivers of the autistic children, deeper understanding is needed to understand the life experiences of Indian mothers with ASD children. According to the American Psychiatric Association Diagnostic and Statistical Manual, Fifth Revision (DSM-5), the current diagnostic criteria for ASD include deficits in: (a) social interaction and nonverbal communication; and (b) restricted, repetitive movements, behaviours and interests. The lifelong nature of autism has deep implications on parents of children with the disorder, resulting in a wide range of challenges. This is because parents, especially mothers, are generally the primary caregiver of children with autism. Very limited number of Indian studies address the daily challenges faced by mothers of children diagnosed with Autism Spectrum Disorder. The purpose of this research is to gather in-depth information and understanding of mothers who have autistic children. Their perception and difficulties in raising a child with autism and to critically look at areas where future research might need to focus. To conceptualize the recorded experiences; primarily the feminist standpoint epistemology (that focuses on building knowledge and empowerment through women's lived experience) has been taken into consideration. A pre generated interview questionnaire has been used while conducting the interviews. To analyse the mothers' narratives, thematic content analysis method has been used. The thematic content analysis of the qualitative data identified five core categories: resources, care load distribution, me time and mental health, autism: subjective understanding of mothers, blame and mothering. The results of this study offer valuable insight into the lived experiences of mothers of children with autism and need for further course of action to empower them.

Povezanost senzornog procesiranja dece sa razvojnom disfazijom sa sagorevanjem i samopoštovanjem roditelja The relationship of sensory processing of children with developmental dysphasia with burnout and self-esteem of parents

Article

Full-text available

Aug 2023

Introduction. Sensory processing difficulties can pose a risk for the development of language and speech disorders in the earliest period and require professional intervention and intense involvement of parents in homework with children with developmental dysphasia, which might cause parental burnout and lower level of their self-esteem when parents are not able to help, not only the children, but themselves too. Aim. The aim of the research was to examine the relationship between the sensory sensitivity of children with developmental dysphasia and the characteristics of parents. Method. The sample consisted of 50 parents of children aged 3 to 6 years. The following questionnaires were used in the research to assess the characteristics of sensory processing: The Child Sensory Profile 2, Parental Burnout Inventory, and Rosenberg Self-Esteem Scale. Measures of descriptive statistics and Pearson's correlation coefficient were used in data processing. Results. The results of the research show that the level of parental burnout is relatively low (parents showed a high level of personal accomplishment (M = 4.16, SD = .67), mild level of emotional exhaustion (M = 2.34, SD = .78) and low level of emotional distancing (M = 1.72, SD = .72), but also that they are characterized by lower self-esteem (M = 3.11, SD = .34). Also, self-esteem and burn-out are not related. On the Sensory Profile, subscales of behavior elements are highly correlated, while the intensity of correlations in subscales of the basic system of processing oscillates. There is a weak correlation between the general self-esteem of parents with subscales of body posture and behavior. Conclusion. The obtained results were discussed in the context of practical pedagogical implications, considering that if the difficulties in the child's functioning are not eliminated in the preschool period, the child's departure to school may be delayed, or long-term difficulties in learning may appear.

Recommendations for Diversifying Racial and Ethnic Representation in Autism Intervention Research: A Crossover Review of Recruitment and Retention Practices in Pediatric Mental Health

Article

Full-text available

Oct 2022

Disparities in diagnosis and access to healthcare and therapeutic services are well-documented for children with autism spectrum disorder (ASD) from minoritized races and ethnicities, but there is little empirical research to guide the selection and implementation of interventions and practices that will effectively support racially/ethnically diverse children with ASD and their families. This cross-over systematic review summarizes parent-mediated intervention research of children with or at risk for mental health disorders to identify potentially effective recruitment and retention strategies for diverse participants in parent-mediated intervention research for children with autism. Electronic database keyword, lead author name searches in PyschNet, MEDLINE, and ancestral searches were conducted to identify 68 relevant articles that used experimental designs to evaluate the effects of parent-mediated interventions on children with or at risk for mental health disorders. Articles were coded for participant demographics; intervention setting and type, recruitment and retention strategies, cultural adaptation of intervention, and reported attrition. Findings are discussed and applied to practices in autism parent-mediated intervention research. Suggestions for future research and limitations are discussed.

Sibling Influences on Trajectories of Maladaptive Behaviors in Autism

Article

Full-text available

Sep 2022

Siblings play an important role in the behavioral trajectories of individuals with autism spectrum disorder (ASD). While having siblings has been associated with positive outcomes in ASD, including stronger adaptive functioning, social and non-verbal communication, and theory of mind, little is known about the impact of siblings on more negative outcomes, such as maladaptive behaviors. To address this gap, the present longitudinal study tested sibling predictors of trajectories of maladaptive behaviors (e.g., teacher- and parent-reported hyperactivity, irritability, and social withdrawal) from childhood through early adulthood among individuals with ASD and non-spectrum delays. Multilevel models revealed that, while the mere presence of a sibling did not impact maladaptive behavior trajectories apart from teacher-reported hyperactivity, the diagnostic profile of the sibling (e.g., emotional/behavioral disorder, ASD, medical condition) emerged as an important predictor. Specifically, although findings varied across teacher and parent reports, more hyperactivity and irritability across time was identified when the sibling had diagnoses of an emotional/behavioral disorder, ASD, and/or a medical condition. Overall, this study provides novel insight into the broader family-level factors that influence the presentation of maladaptive behaviors across time and across contexts.

Raising Children in Risk Neighborhoods from Chile: Examining the Relationship between Parenting Stress and Parental Adjustment

Article

Full-text available

Dec 2021
Int J Environ Res Publ Health

Introduction: Parenting stress and parental adjustment could implicate key differences in the relational dynamics that parents establish with their children, particularly when families come from vulnerable social contexts. Method: Participants were 142 fathers and mothers from a risk neighborhood of Chile. The variables examined were parenting stress (parental distress, parent-child dysfunctional interaction and difficult child) and parental adjustment (depression, anxiety, and stress). Parents also completed a sociodemographic characterization survey. The statistical analyses were a correlation analysis and multiple linear regression analyses. Results: Overall, not all components of parenting stress were related to parental adjustment. Only parental distress was found as a significant predictor of poor parental adjustment (greater depression, anxiety, and stress), but not parent-child dysfunctional interaction and having a difficult child. Conclusions: The present study findings highlight the influence of stress on parenting as a relevant dimension of research for the improvement of the intervention deployed by the state regarding the protection of vulnerable Chilean children, providing multiple clinical and psychosocial applications for research and intervention purposes.

Levels of happiness and depression in parents of children with autism spectrum disorder in Poland

Article

Full-text available

Jan 2021

There are numerous factors that determine the sense of happiness and level of depression in caregivers of children with autism spectrum disorder (ASD). The aim of this paper is to evaluate happiness and depression in/among families with an ASD child and compare with families with neurotypical children. The study included 182 participants. The participants answered questions for two questionnaires: Beck Depression Inventory and Oxford Happiness Questionnaire. The outcome of the study identified significant differences for sense of happiness and level of depression among the parents of children with ASD compared with the parents of neurotypical children. It was shown that parents of children with ASD reported a lower sense of happiness and a higher level of depression compared to the parents of neurotypical children. They also showed a significantly higher level of depression relative to the decreased level of happiness. Moreover, parents who have a university education degree and a child with ASD showed a higher sense of happiness and a lower level of depression than parents who had a secondary education degree, in the studied groups.

A Systematic Review of Family-Mediated Social Communication Interventions for Young Children with Autism

Article

Full-text available

Jun 2022

Social communication deficits are a core symptom of autism spectrum disorder (ASD). The present paper reviews 54 studies evaluating social communication interventions delivered by parents and siblings to children with ASD under 6 years old. Fifty studies evaluated parent-mediated intervention, and four studies evaluated sibling-mediated intervention. Fourteen studies evaluated interventions using telehealth. Treatment effects and research strength were variable across studies. Treatment modality, setting, and dosage had inconclusive impact on treatment effect. Parent-implemented intervention packages, Pivotal Response Treatment (PRT), Early Start Denver Model (ESDM), and Joint Attention, Symbolic Play, Engagement & Regulation (JASPER), qualified as established evidence-based practice for this population. Most studies reported successful generalization of skills for some, but not all, children. Telehealth and sibling-mediated intervention are promising areas of further research and clinical practice.

Sustaining behavior reduction by transitioning the topography of the functional communication response

Article

Mar 2021

When a functional communication response (FCR) can be reliably occasioned, destructive behavior tends to be lower. However, the form of FCR may affect the durability of functional communication training, as missing FCR materials may promote resurgence. Experiment 1 demonstrated that resurgence of target responding was lower when a vocal FCR remained available but was placed on extinction compared to when a card-based FCR was unavailable. Experiment 2 replicated the finding that initiating treatment with a card FCR produced less target responding than when initiating treatment with a vocal FCR. We then evaluated a set of procedures for transitioning the card FCR to the previously unlearned vocal FCR. These findings suggest benefits of training different types of FCRs at different stages of treatment and provide a preliminary set of procedures for transitioning between FCR topographies while occasioning minimal target responding.

Meaning-making and resilience in parents of children with complex care needs

Thesis

Full-text available

May 2020

Luke Mungall

This study explored: (1) the ways and extent to which parents of children with complex care needs (CCCN) find and create meaning in their caregiving experiences; and (2) parents' perceptions of the relationship between resilience and meaning-making. The sample included seven parents who were recruited through online support groups, NaviCare/SoinsNavi (NB patient navigation centre's family advisory council, and word of mouth. They participated in semi-structured qualitative phone interviews, which were eventually analyzed using thematic analysis (Braun & Clarke, 2012). Overall, this study found that parents of CCCN made several meanings of their caregiving experiences, including but not limited to acceptance, growth, resilience, and finding purpose. As a conclusion of this study, the findings suggest that meaning-making in parents of CCCN likely follows an iterative and ongoing process. Furthermore, perceived parental meaning-making seems to be instrumental in their ability to cope with caregiving's difficulties.

Coping Strategies of Fathers in Early Intervention Services and Parenting Stress Levels

Article

Nov 2020

We evaluated the relationship between (1) the coping strategies used by fathers of children receiving early intervention services and (2) the stress fathers experience as a result of child rearing. One-hundred and forty-four fathers from 17 early intervention centers in the Valencian Autonomous Community (Spain) participated in the study. We measured the fathers' parenting stress and coping strategies using the Parenting Stress Index-SF (PSI-SF) and the Adult Coping Response Inventory (CRI-A), respectively. Structural equation models were created to assess the simultaneous effects of child-related variables and the fathers' sociodemographic variables on parenting stress, mediated by the fathers' coping strategies. The coping strategy Positive Reappraisal was negatively related to all the PSI-SF stress factors and the total score. Therefore, more frequent use of Positive Reappraisal strategies was related to lower rates of parenting stress. In addition, the educational level of the father and the type of disability of the child were related to the fathers' parenting stress and the coping strategies they used, principally, Avoidant Coping Styles. Fathers of children receiving early intervention services could benefit from intervention programs that consider coping strategies for parenting stress, contributing, in this way, to increasing the fathers' perception of their parenting competence.

Parental Caregiving Burden, Depression, Social Support, and Life Satisfaction: A Multigroup Analysis of Social Support for Parents of Young Children Suffering From Brain Lesions

Article

Dec 2020

Eun-Young Park

Social support refers to people’s interpersonal relationships and is a potentially powerful mediator for caregivers’ life satisfaction. This study examined the relationships between parental caregiver burden, depression, social support, and life satisfaction. It compared these relation variables between parents of preschool- and school-aged children, as mediator effects of social support may differ across age ranges. Data were used from the Ministry of Health and Welfare of Korea’s research on support services and policies for people with brain lesions. Parental caregivers of preschool- ( n = 93) and school-aged ( n = 91) children participated in this study. A multigroup analysis indicated a significant negative relationship between caregiving burden and depression with social support and parental life satisfaction and a significant positive relation for social support with life satisfaction for the overall group, preschool- and school aged. Social support was a mediator for each group; however, the regression weight differed between preschool- and school-aged children’s parents. The study confirms the importance of caregivers’ social support and suggests a need for family support strategies that account for children’s ages.

Fathers' experiences as carers for autistic children with learning disabilities

Article

Full-text available

Nov 2020

Accessible Summary This research explored the experience of four fathers of autistic children who also have learning disabilities. Fathers' experiences as carers are increasingly recognised in the literature; however, the studies of parental experience tend to centre mothers. The current research builds upon the recent and important focus upon fathers' experiences. The fathers in this study sometimes felt helpless and unable to fulfil the traditional role as protectors and providers, but they also had strong feelings of closeness with their children and developed new identities through the challenges and joys they experienced alongside their children. Abstract Background This small study explores the lived experience of four UK‐based fathers (one black British, one white Polish and two white British) caring for at least one child with a dual diagnosis of learning disability and autism. The key aim was to get as close as possible to understanding the experience of these fathers in their role as carers. Methods The study makes use of interpretative phenomenological analysis (IPA) as an approach to gathering (via interview) and making sense of the fathers' experiences. Findings and discussion We co‐constructed three themes following analysis of the interview transcripts: "fatherhood: not doing enough, not doing it right"; "crossing worlds: relearning how to communicate and reclaiming fatherhood"; and "uncertain futures." We found that, for these fathers, the experiences of anxiety and helplessness were balanced with the appreciation of their value as protectors, their shifting sense of identity and of their closeness with their children. Relationships were central throughout. Conclusions The exploration of fathers' experiences helps to highlight the less‐measurable, nuanced aspects of the joys and challenges of caring for children with dual diagnoses of learning disability and autism which might be used to enhance the support provided and to inform new approaches.

Farklı Gelişen Çocukların Ebeveynlerinde Öz Duyarlılık ve Aile Desteği Algısının Ebeveyn Stresi Üzerindeki Etkisinin İncelenmesi

Article

Full-text available

Oct 2020

In this study, it was aimed to investigate whether the self-compassion levels and family support perception levels of individuals who have children with learning disability, autism spectrum disorder and mental disabiliy have a significant effect on parental stress. In this context, a research was conducted with 180 individuals whose children received special education in a special education and rehabilitation center in Istanbul. Self-Compassion Scale, Family Social Support Scale, and Parental Stress Index Short Form were used to collect the data. In the study, data were analyzed using Independent Sample t-Test, Pearson Correlation Analysis and Regression Analysis. According to the findings, it was determined that the self-compassion levels and family support levels of the parents who have children with learning disability, autism spectrum disorder and mental disability had a significant effect on parental stress. Accordingly, as the level of self-compassion and family support increases, the level of parental stress of their parents decreases.

Constructional Parent Coaching: A Collaborative Approach to Improve the Lives of Parents of Children with Autism

Article

Jun 2024

Parents of children diagnosed with autism face enormous stressors, which may interfere with achieving personal and family goals. The typical approach for reducing stress is often pathological; the individual attempts to directly eliminate the stress through counseling, behavioral therapy, or medication. As an alternative, the constructional approach builds repertoires for accessing important reinforcers. In this study, a mentoring program based on the constructional approach was used to teach three parents of children diagnosed with autism how to analyze their lives, formulate goals, and implement programs to reach these goals. A mentor’s support was gradually reduced until each participant could implement these steps independently. After the implementation of this program, events that each participant wanted to keep as part of their life encompassed a larger proportion of their total weekly events, as compared to before the program. In addition, time spent working on chosen goals increased as each goal was targeted for intervention. This mentoring program offers a promising approach for teaching people to manage their own lives by cultivating skills that help them get what they want, without dwelling on the problems interfering with their happiness.

Social Validity Assessment

Chapter

Apr 2024

The prevalence of intellectual and developmental disabilities (IDD) affects approximately one in six youth under the age of 17 years. This population requires specialized medical and behavioral healthcare interventions. Board-certified behavior analysts (BCBAs) play an integral role in the behavioral healthcare of individuals diagnosed with IDD, particularly those engaging in problem behavior. As the field evolves, BCBAs find themselves delivering services targeting problem behaviors exhibited by individuals with IDD in varied settings. While this is a necessary expansion of services, efforts to ensure the social validity of our practices given different stakeholder groups are essential. This chapter describes the history and application of social validity practices within the field of applied behavior analysis (ABA). We emphasize the ways social validity can be assessed depending on the stakeholder and how to support the customer (i.e., recipient of ABA services), consultant (i.e., provider delivering services), and society (e.g., community, regulatory agencies) in a socially valid manner with behavior-analytic practices when serving individuals diagnosed with IDD engaging in problem behavior. The chapter concludes with a discussion of future directions for researchers and practitioners.

Psychological wellbeing in parents of children with Down syndrome: A systematic review and meta-analysis

Article

Apr 2024
CLIN PSYCHOL REV

Families of Autistic Adults

Chapter

Mar 2024

Family members of autistic adults continue to play an important role in their lives. In this chapter, we review the concerns and roles of families of autistic adolescents and adults, and the impact of the stress these responsibilities can have on family members. Just as there are different lived experiences of autistic individuals based on factors such as age of diagnoses, level of support needs, and comorbidities, the experiences and needs of families are also quite variable. Families experience many concerns, barriers, and challenges when advocating for services that cater to the unique needs of their autistic adult child, sibling, or spouse. As the field of autism has increasingly focused on the transition to adulthood, more interventions and supports are being developed for autistic teenagers and young adults that involve their parents. Additionally, there are more resources available to address the stress and coping of family members.

Social Support and Parental Stress as Factors Predicting Resilience among Caregivers of Austic Children

Article

Full-text available

Feb 2024

This study determined if social support and parental stress as factors could predict resilience among caregivers of autistic spectrum disorder. The study further examined if gender, age, and religion of caregiver will predict resilience among caregivers of autistic spectrum disorder as well. Participants for this study include 34 caregivers from the Child and Adolescent Mental Health Services Centre (CAMHSC) of the Federal Neuropsychiatric Hospital, Yaba, and Lagos State. Caregivers’ age ranged between 20-66 including both males and females, across different religions and ethnic groups. Social support was assessed through Multidimensional scale of perceived social support, Parental stress was assessed through the parental stress scale, while Resilience was measured through the Brief resilience scale. The result revealed that social support did not significantly predict resilience B= -.16, t= -.98, P> .05. Stress has a significant influence on resilience B= .40, t= 2.46, P< .05. It further revealed that both social support and parental stress jointly significantly predict resilience R= .209, F (2, 31)= 4.09, P<.05. There is significant influence of gender on resilience t(32) = -2.842, P<.01. Similarly, there was significant interaction influence of age and religion on resilience F(2,27) =19.33; P<.01. It is suggested that mental health awareness campaigns should be raised about autism and the challenges faced by caregivers among religious and community leaders.

Children’s and Parents’ Factors That Affect Parenting Stress in Preschool Children With Developmental Disabilities or Typical Development

Article

Dec 2023

Objective This study compared parenting stress in preschool children with developmental disabilities (DD) or typical development (TD). We also investigated children’s factors that affect parenting stress.Methods A total of 196 preschool children participated in the study (aged 54.8±9.2 months). There were 79 children with DD (59 with autism spectrum disorder, 61 with intellectual disability, 12 with language disorder) and 117 with TD. The high parenting stress and the low parenting stress groups were divided based on the Total Stress of Korean Parenting Stress Index Fourth Edition (K-PSI-4) with an 85-percentile cutoff score. Pearson’s correlation analysis was conducted to calculate the correlation between K-PSI-4 and the children’s or parents’ measures.Results The difference in parenting stress between DD and TD was significant in the Total Stress of K-PSI-4 (p<0.001). The Total Stress scale of K-PSI-4 represented a modest to strong correlation with cognitive development, adaptive functioning, social communication, and behavioral problems in children with DD. Our results showed that caregivers of children with DD reported higher parenting stress than those with TD. Parenting stress was strongly associated with cognitive development, adaptive functioning, social communication, and behavioral problems in children with DD. Among the children’s factors, especially social communication, attention problems, and aggressive behavior had association with caregivers’ higher parenting stress.Conclusion These findings suggest the need for early intervention for parenting stress in caregivers by assessing child characteristics, including social cognition, awareness, communication, and inattention and hyperactivity, in the evaluation of children with DD.

Parental Stress and Effective Parent Training for Parents of Individuals Diagnosed with ASD

Chapter

Aug 2022

SOCIAL ADJUSTMENT IN FAMILIES WITH CHILDREN AND ADOLESCENTS WITHINTELLECTUAL DISABILITY AND FUNCTIONAL PSYCHOSIS

Article

Aug 2017

Social adjustment in families with children and adolescents with intellectual disability and functional psychosis Author: Jagritee Singh., Haque Nizamie S and Singh N. K Background:The problem associated with rearing intellectually disabled and functional psychosis children and adolescent is multifold Problems like disturbance of –daily routine, family leisure education, family health, steady dram on time, physical and emotional energy as well as financial resources and over above social interaction of the parents.Parents' psychological adjustment can be defined as the adaptive task of managing upsetting feelings aroused by the illness of the child and preserving a reasonable emotional balance(Moos R. H. &Tsu V. D., 1977). Pless and Pinkerton (1975) have postulated that adjustment to chronic illness changes over time and that at any given moment psychological adjustment will reflect the cumulative product of earlier transactions. Aim & Objective: The purpose of this study was to assess and compare social adjustment among parent of children with intellectual disability and functional psychosis. Participants and Methods: This study was a cross-sectional hospital based study. The study samples were selected through purposive sampling technique. The sample size was 40 parents among which 20 parents of children and adolescent with intellectual disability and 20 parents of children and adolescent with functional psychosis taken from Erna Hoch Child and Adolescent Psychiatry Unit and Charak Outpatient Department, of the Central Institute of Psychiatry, Kanke, Ranchi. The Modified Social Adjustment Scale (SAS-M)scale was used for the data collection. Data were analyzed by Statistical Package for Social Sciences (SPSS- 21 version). Result & Conclusion: Results indicated no significant group differences in ratings of “modified-social adjustment scale”. Download PDF: 2658-A-2017.pdf DOI: DOI: http://dx.doi.org/10.24327/ijcar.2017.5570.0752 Select Volume:

“No Intervention, Just Straight Suspension”: Family Perspectives of Suspension and Expulsion

Article

Oct 2022
CHILD YOUTH SERV REV

Research has revealed disproportional rates of suspension and expulsion for children with disabilities and children who are racially/ethnically diverse. There is less known about the impact of preschool suspension and expulsion on the family unit. This qualitative study used focus group methodology to explore the perspectives of families with a child who was suspended and/or expelled from school. The ecological systems framework was used to analyze findings regarding how families viewed their child’s suspension and expulsion from school. Implications suggest the need for school reform that include teacher training on alternative discipline measures, a systematic focus on family-professional partnerships, and equitable policies that support the belongingness of Black children in schools.

الضغوط الوالدية كما يدركها والدو الأطفال المعاقين و العاديين في ضوء بعض من المتغيرات : دراسة مقارنة=Parental stress as perceived by parents of children with disabilities and normal children in the light of some variables : a comparative study

Article

Full-text available

Sep 2022

Manar Bani Mustafa

This study aimed to identify the level of parental stress among the parents of children with disabilities compared with that among parents of normal chil-dren in the light of some of variables. To achieve the objective of the study, a developed version of the parental stress scale was conducted on a sample of (222) parents, of children with or without disabilities. The results indicated that there were no statistically significant differences in parental stress among the parents of children with disabilities and those of normal children. It also showed no statistically significant differences among the parents of children with disabilities according to parental age, sex and level of education. As for the type of child disability, the results showed significant differences in pa-rental stress among the parents of children with disabilities according to the type of disability. Parents of disabled children showed intermediate levels of stress while the parents of the mentally retarded children had shown the highest parental stress followed by the parents of the physically disabled, the parents of visually impaired and parents of hearing-impaired respectively.

Coping with Autism Spectrum Disorder Adolescents’ Emotional Suppression with a “One-Bit” Interactive Device

Chapter

Jun 2022

Youth with Autistic Spectrum Disorder (ASD) have unpredictable emotional changes during adolescence. Due to the weakness of understanding other people’s emotional cues, ASD adolescents tend to ignore social messages, resulting in an inability to be understood or accepted. Finally, they are labeled with social incompatibility. In this study, we focused on the ASD adolescents’ emotional communication with their family members, and the first author conducted an autobiographical design research to explore the interaction pattern and the design potential via a “one-bit” device. In this 128 days’ design exploration, we found that even a simple interactive device could motivate youth with ASD to learn and practice their emotional expression under the support and cooperation of the family members.

Disturbo dello spettro autistico. L’effetto dei trattamenti mindfulness e act sullo stress dei caregiver: una rassegna

Article

Apr 2022

Parenting Stress in Mothers of Children and Adolescents with Down Syndrome

Article

Full-text available

Feb 2022

Parenting stress has deleterious effects on parents, children, and overall family functioning. Parents of children with intellectual disability, including Down Syndrome (DS), show higher levels of parenting stress than parents of typically developing children. This research aimed to (i) evaluate parenting stress levels in a group of mothers of youths with DS using a parent-report questionnaire, (ii) identify children’s individual and clinical features associated with maternal stress, and (iii) identify specific situational life/demographics factors related to maternal stress. Seventy-eight youths with DS underwent a neuropsychological evaluation, whereas mothers completed questionnaires for the assessment of parenting stress and of the child’s emotional and behavioral problems. We found that Parent–Child Difficult Interaction was the domain with the highest percentage of clinical scores (39.7%). Both internalizing and externalizing problems correlated with maternal stress, as well as autistic symptoms. The levels of maternal stress were not associated with any socio-demographic variable. After controlling for child-related correlates of maternal stress and for mothers’ age and education level, unemployed mothers exhibited higher levels of parental distress than employed mothers. The present study highlights that unemployment is related with parenting stress and potentially amenable to policy interventions supporting parents in combining work and family care.

Oblicza Ojcostwa. Studium narracji ojców dorosłych osób z głęboką niepełnosprawnością intelektualną

Book

Full-text available

Feb 2022

Diana Aksamit

This publication presents the fatherhood of men in relation to adults with profound intellectual disabilities from two perspectives. The first perspective concerns the biographical experience of fatherhood, including the meaning that fathers have given it over the years. The second takes into consideration the shaping of fatherhood in the socio-cultural dimension. The issues presented in this publication do not exhaust the topic; however, in a certain way, they map the problems that fathers of children with profound intellectual disabilities face from childhood to adulthood. My own academic investigation was embedded in the methodology of qualitative research in the constructivist and interpretive current (with an emphasis placed on the interpretive aspect). The main research goal was to explore, analyse and describe the experiences of the fatherhood of men-fathers of children with profound intellectual disabilities and the meanings hidden within them. Regardless of the perspective or context assumed, fatherhood is a role that can not be planned in advance. Moreover, global changes worldwide cause that not only social expectations but also conceptual constructs associated with social and individual roles are modified. These changes impact the redefinition of fatherhood, the role of the father in the family, social expectations placed on him and the demands of personal development. The research issues addressed in this monograph and how they are interpreted reveal the different ways women and men experience a child’s disability, and the context fathers give to it.

A Comparative Study of the Communication Profile of Typically Developing Children and Children with Receptive-Expressive Language Disorders: A Parental Perceptive

Article

Full-text available

Jan 2021
Clin Pract Epidemiol Ment Health

Background Parental concerns pertaining to communication abilities are essential as it does aid in the identification of the children at risk of physical and mental health problems. Objectives The current study followed a cross sectional study design. The study focussed on developing a questionnaire targeting the parental concerns in Typically developing (TD) children and children with Receptive-Expressive Language Disorders (CWRELD) between 3.7 and 6.6 years of age; to administer the developed questionnaire on parents of TD children and CWRELD; and to analyse and compare the concerns faced by parents of TD children and CWRELD across 3.7 and 6.6 years of age. Methods Fifty-one parents of TD children and 51 parents of CWRELD participated in the study. The study was carried out in three phases- Phase I included the development and validation of questionnaire; Phase II included data collection using the developed questionnaire; and Phase III included performing statistical analysis. Descriptive statistics was done to determine the mean and standard deviation (SD) for both the TD and CWRELD groups. Results The results revealed that the concerns exhibited by parents of CWRELD were significantly higher than that of parents of TD children. Chi square results indicated statistically significant findings across all the domains between TD children and CWRELD (p<0.05). Conclusion The developed questionnaire can be used in clinical settings to help track parental concerns which may aid in the early identification of children at risk of various communication disorders. Additionally, this questionnaire may be considered for monitoring parental concerns throughout the course of the intervention program.

Parenting stress in caregiver‐mediated interventions for toddlers with autism: An application of quantile regression mixed models

Article

Nov 2021

Traditional longitudinal modeling approaches require normally distributed data and do not account for sample heterogeneity. Parenting stress, in particular, can be difficult to model across time without transforming the data as it is usually high for caregivers of children with ASD. This study used novel linear quantile mixed models (LQMMs) to model non-normal parent stress scores across two caregiver-mediated interventions involving toddlers with ASD. The sample included 86 caregiver-child dyads who were randomized to either a parent-only psychoeducational intervention or hands-on parent training in a naturalistic developmental intervention. Child and parent-related domains of the Parenting Stress Index (PSI) were the primary outcomes in this study. The PSI was collected at entry, 10-week exit, 3-month follow-up, and 6-month follow-up periods. Separate LQMMs were used to model five specific quantiles ( of the two PSI domains across the complete intervention timeline. These five quantiles effectively modeled the entire conditional distribution of parenting stress scores. The LQMMs indicated that child-related parenting stress decreased across all quantiles within both interventions, with no difference in the rate of parenting stress change between the intervention groups. For parent-related parenting stress, the effect of intervention depended on the group's stress level; some parents increased their perceived stress within the hands-on intervention at the 3-month follow-up. Overall, this study demonstrated that the use of LQMMs yielded additional information, beyond traditional longitudinal models, regarding the relationship between parenting stress within two caregiver-mediated intervention protocols. This study also discussed the methodological contributions and potential future applications of LQMMs. Lay Summary This study used a newer longitudinal modeling technique to examine how parenting stress changed across two caregiver-mediated interventions for toddlers with ASD. Results showed that certain parents in the JASPER condition might require additional support as they exit the study and enter into their first follow-up period. It was also determined that this new modeling technique could be a valuable tool to analyze highly variable data often present in ASD intervention studies.

Neurofeedback interventions for speech and language impairment: A systematic review

Article

Full-text available

Jan 2021

Language disparities in Arabic-speaking individuals with Speech and Language Impairment (SLI) can increase the limitations faced by SLI specialists. There is a need to improve neurofeedback interventions for patients who belong to this group. In contrast to studies that rely solely on behavioral measures, neurofeedback training can capture cognitive changes in response to learning not seen in time or accuracy measures alone. However, rigorous systematic literature reviews on neurofeedback interventions are limited. This research aims to perform a systematic literature review and analyze neurofeedback studies where Electroencephalography (EEG) or Magnetic Resonance Imaging (MRI) measurements were utilized with the isolation of the effect of a particular behavioral intervention on SLI cognitive profiles. We conducted a systematic literature review of studies on neurofeedback training published between 1992 and 2020. PRISMA guidelines have been used to achieve the review; we choose many keywords to be used in our search. The use of combinations of these keywords in searching of eight digital libraries (Springer Link, Science Direct, PLOS One, Taylor and Francis Online, Wiley Online Library, ISNR online, SAGE Publishing, and Google scholar) generated 155 publications. Out of these, 60 articles were found to be duplicates, and hence, they were removed. Therefore, the total number of final papers that form the primary data for this systematic literature review is 50. We identified 50 studies relevant to the objective of this research. After a rigorous review, we observed that 36 out of 50 (72%) selected studies used EEG or MRI to analyze the effects of neurofeedback on individuals with SLI, and 38% performed comparative analysis and hence improved the quality of their studies. We recommend the standardization of applications of EEG and MRI using BCI methods. EEG and MRI neurofeedback training methods are less expensive and yet more potent compared with pre-existing behavioral intervention and assessment methods with methods that use SLI Neurofeedback.

Neurofeedback interventions for speech and language impairment: A systematic review

Article

Full-text available

Jan 2021

Boşanmış Annelerin Ebeveynlik Stresleri ile Kişilik Özellikleri, Algıladıkları Sosyal Destek ve Ebeveyn Rolüne İlişkin Kendilik Algıları Arasındaki İlişki

Article

Full-text available

Jan 2021

DISCOVERING AUTISM CHILD POTENTIAL USING AUTISM PARENTING APPLICATION

Conference Paper

Full-text available

Sep 2021

Autism have become prevalent disorder among children nowadays. Parents with autism kid having higher level of stress among other parents. There is some remarkable skill in autism kid that by discovering the skill can make parents to have a better approach or better parenting toward their kid. The objective of the study is to identify the remarkable skills among autism children using qualitative method and to identify the features of suitable mobile app to help parent determine the remarkable skills using content analysis and literature review. Two main remarkable skill focusses in this study were rote memory and spatial visual. A study was carried out to produce a mobile application (prototype) for autism parents to discover their child's remarkable skills. Prototyping methodology was employed. The application is expected to help parents to discover their kid's remarkable skill.

Neurofeedback interventions for speech and language impairment: A systematic review

Article

Full-text available

Jan 2021

Ethnographic study of the religious coping forms of mothers’ experiences of bringing up a child with ASD in Saudi Arabia

Conference Paper

May 2021

Taghrid Alqunaibet

Autism is increasing in prevalence and has become a global concern. It has been long recognised that the presence of autism can have a significant impact on family members and that autism can result in greater parental stress than other disabilities. A growing recognition in research has emerged about the religious beliefs held by the families of children with disabilities due to the significant role played by religion in shaping parents’ interpretation and understanding of the disability. Therefore, religious parents may draw upon their faith to help them cope, make sense and construct meanings around their child’s disability. A gap exists in the literature regarding the needs, concerns, and overall experiences of Arab Muslim parents of children with autism. A scarcity in the literature examining autism in the Gulf region has been acknowledged with no research to date in Saudi Arabia which has investigated the burden of autism on the family, child and society. What little research there is in this area has predominantly explored the experiences of parents in Western societies and mostly from a quantitative paradigm. We quite simply do not yet know how autism impacts on families in Gulf counties such as Saudi Arabia. Up until this point it has been quite unfathomable to ask about such experiences in this context, particularly of those most involved in their child’s care; mothers. This ethnographic study therefore set out to explore how Saudi mothers caring for a child with autism recognized and understood autism, what their cultural beliefs and understanding of autism were, and how they coped and adapted with their concerns, worries and needs regarding their children. Two ethnographic methods were employed in the study; participant observation and qualitative interviews. Data analysis showed that mothers’ responses clustered around particular themes. Three major themes emerged from the data (Autism invisibility within the wider society and the difficulties of getting and dealing with the diagnosis; Autism causality and the explanatory frameworks used by mothers to understand the condition; Various internalised and externalised stigmas associated with autism and the relationship of the condition to disability and disablement), each of which offered insight into Saudi mothers’ unique experience of coping, adapting and bringing up a child with autism. Mothers’ Unfinished journey, is the overarching global theme within which all three major organizing themes and sub-themes were grouped. The findings of this study are discussed in detail, as well as the implications of the findings and recommendations for future research.

Stress experience and life for parents of autistic individuals: four case studies in focus

Chapter

Jan 2021

Neophytos L. Papaneophytou

Autism is many things to many people. To a psychologist offering an evaluation, it could be a mere “diagnosis” or client referral. To a parent “autism” could be a story of tremendous loss, and grief, or joy; love, and lifetime happiness—or sorrow. To the general public, it could a mystery, and to the untrained eye a threat. Autistic people are only full of love and maybe missing social or communicational skills. Hence, communicating may bring stress to them, to their families, friends, colleagues, teachers, and doctors among others. Parental stress is a condition all too familiar and depending on the severity of the autistic characteristics it can accumulate through time. Parents in various countries experience stress in similar ways. Research and best practices so as to improve the quality of life are discussed.

Age Differences in the Mediating Effects of Parenting Stress on the Relationship Between Cyanotic Congenital Heart Disease and Externalizing Problems in Children and Adolescents

Article

Feb 2021
J CARDIOVASC NURS

Background: Cyanotic congenital heart disease (CHD) has detrimental effects on behavioral function in children and adolescents. However, few study authors have examined the underlying mechanisms of these effects. Objective: The aims of this study were to investigate the mediating effects of parenting stress in the association between cyanotic CHD and externalizing problems and to explore whether age moderated these mediating effects. Methods: A total of 697 children and adolescents (aged 2-17 years) with CHD (252 with cyanotic CHD and 445 with acyanotic CHD) in Taiwan were enrolled. The Child Behavior Checklist and the Parenting Stress Index were used to assess externalizing problems and parenting stress, respectively. Mediation analysis was performed to determine the mediating effects of parenting stress in the association between cyanotic CHD and externalizing problems. A moderated mediation model was used to investigate the moderating effect of age on the observed mediating effects. Results: Parenting stress significantly mediated the relationship between cyanotic CHD and externalizing problems (unstandardized coefficient B = 0.98; 95% bootstrap confidence interval, 0.23-1.78). Children's age further moderated the mediating effects, with greater effects in older children. Age also moderated the association between cyanotic CHD and parenting stress, such that the effects were only significant in children older than 5.7 years. Conclusions: Our study revealed that age affected the mediating effects of parenting stress in the relationship between cyanotic CHD and externalizing problems. Efforts to reduce externalizing problems in children and adolescents with cyanotic CHD by targeting parenting stress may be more effective when age differences are considered.

The Effect of Filial Therapy on the Parenting Stress of Mothers of Children With Autism Spectrum Disorde

Article

Full-text available

Jul 2020
J REHABIL

Objective: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that affects the person’ life. The prevalence of ASD in Iran is increasing. The complicated nature of this disorder disrupts the balance and work routines in the family, which puts a lot of stress on the entire family, especially mothers. Mental health of the mother affects all family members, including a child with ASD. On the other hand, mothers’ confusion and failure in relation to their ASD child causes more stress and discomfort for them. In this study, we aimed to investigate the effect of filial therapy, as a play therapy, on the parenting stress of mothers with ASD children. Materials & Methods: In this experimental study, participants were the mothers of 32 children with ASD (9 girls and 23 boys) aged 4-12 years referred to autism centers and occupational therapy clinics in Isfahan, Iran who were selected using a convenience sampling method. After obtaining an ethical approval from the Research Ethics Committee of the University of Social Welfare and Rehabilitation Sciences (code: IR.USWR.REC.1396.97), and necessary permissions, researchers referred to the clinics and after explaining the purpose of the study to the mothers, an informed consent was obtained from them. Then, they completed a demographic form, Gilliam Autism Rating Scale-2 (GARS-2), and Abidin’s Parenting Stress Index-Short Form (PSI-SF). Participants were randomly divided into two intervention and control groups after matching for the child’s age, GARS score, and the education of children and mothers. The intervention group received 10 sessions of filial therapy, once a week, each for two hours, while the control group continued routine treatment. After intervention, PSI-SF was completed by all mothers again. The collected data were analyzed by using ANCOVA, paired t-test and independent t-test. Shapiro-Wilk test was used to determine the normality of PSI-SF data distribution at Pre-test and Post-test phases. Results: Paired t-test results showed that there was no statistically significant difference in the mean total parenting stress score between the two groups in the Pre-test phase (P= 0.679) but it was significant in the Post-test phase (P=0.010). The results of independent t-test showed that the difference between the mean Pre-test and Post-test scores of total parenting stress in the control group was not significant (P= 0.268) but it was significant in the intervention group (P=0.001). ANCOVA results showed that the Pre-test score of parenting stress had an effect on the total parenting stress score after intervention such that it could explain 82% of variations in this variable. After controlling the Pre-test score, the total parenting stress was significantly different in two groups (P=0.001). Eta squared value indicated that the intervention could explain 54% of changes in total parenting stress of mothers. Conclusion: Filial therapy can help better acceptance of the ASD children by their parents and reduce parenting stress by improving child-parent relationships. This method can be taught as a complementary intervention to the mothers of ASD children.

Parenting a child with congenital cytomegalovirus infection: A qualitative study

Article

Full-text available

Nov 2020

Background Congenital cytomegalovirus (CMV) is the most common infectious cause of congenital disability, which can cause lifelong impairments including sensorineural hearing loss and developmental delay. This study aimed to explore the experiences of parenting a child with congenital CMV and the impact this has on families. Methods Ten parents living with a child with congenital CMV in the UK participated in semistructured interviews and data were analysed using thematic analysis. Results The findings illustrate that delays in making the diagnosis of congenital CMV are associated with parental distress and lack of knowledge about CMV among medical professionals can exacerbate this distress. Parents expressed frustration about not knowing about CMV infection during their pregnancies and therefore not having the opportunity to take measures to reduce their risk of acquiring CMV while pregnant. The uncertainty about the long-term outcomes of children with congenital CMV adds additional emotional burden for parents. Family and wider societal networks have the potential to facilitate coping and alleviate stress, but the lack of awareness of CMV acts as a barrier to receiving support from family and friends. Conclusions There is a need to increase awareness of CMV among medical professionals, pregnant women and wider society to improve the diagnostic process and to provide better support for families caring for children with congenital CMV infection.

MMPI characteristics for parents of emotionally disturbed and learning-disabled children

Article

Full-text available

Oct 1982

Compared MMPI profiles for the parents of 90 preadolescents (aged 73–148 mo) diagnosed as having either a conduct disorder (CD), personality problem (PP), or learning disability (LD). Data indicate that mothers of CD children presented a relatively more introverted, depressed, interpersonally sensitive picture. Mothers of LD and PP children were rather defensive, and the latter reported more physical complaints than did mothers of CD children. With the exception of the elevation in depression for fathers of CD children, the results for fathers were unremarkable. (6 ref)

Concurrent Validity of the Eyberg Child Behavior Inventory

Article

Full-text available

Mar 1990
J Clin Child Psychol

Examined the concurrent validity of the Problem and Intensity scales of the Eyberg Child Behavior Inventory (ECBI), using the Child Behavior Checklist (CBCL) as the criterion measure. Subjects were 159 children ages 4 to 16 referred for psychological evaluation between 1985 and 1988 for whom both the ECBI and CBCL had been completed. ECBI scales were correlated with both the Internalizing and Externalizing scales of the CBCL but were significantly more highly correlated with the Externalizing scale. Results supported the validity of the ECBI as a concise measure of childhood conduct-problem behaviors.

Assessment of child behavior problems: The validation of a new inventory

Article

Full-text available

Jun 1978
J Clin Child Psychol

This paper presents initial validation data for a behavioral inventory of child conduct problems. The 36‐item Eyberg Child Behavior Inventory (ECBI) was completed by mothers of two‐ to seven‐year‐old children from several samples of problem and non‐problem behavior children. Results from this study indicated the usefulness of the ECBI in discriminating between problem and non‐problem children, for purposes of evaluation; provided data on the non‐problem child as a guideline in defining reasonable therapeutic goals; and demonstrated the ability of the ECBI to reflect the change following treatment intervention.

The standardization of an inventory of child conduct problem behaviors

Article

Full-text available

Mar 1980
J Clin Child Psychol

This study presents the standardization data for a brief behavioral inventory of child conduct problem behaviors. The 36 item Eyberg Child Behavior Inventory (ECBI) was completed by the parents of 512 children (56% boys) ages 2 to 12. The psychometric characteristics of ECBI indicated that it is a reliable (.86 to .98) and valid instrument whose normally distributed scale is sensitive to a broad range of behavioral variability on the conduct problem dimension. Boys were reported to evidence more conduct problems than girls (p < .001; and mothers consistently reported more problem behaviors than fathers (p < .001). The relative consistency of ECBI scores across ages suggested that a conduct disorder is independent of stages in the child's development. It was suggested that conduct problem behavior is a manifestation of the interaction between the parent and child. The ECBI provides a psycho‐metrically sound parent‐report instrument to be used as an adjunct to observational methods in the treatment and study of conduct problem behaviors.

Effects of the child's deficiency on the mother: A study of mothers of mentally retarded, chronically ill and neurotic children.

Article

Full-text available

Jul 1966

Comparison of selected personality features of four groups of mothers supported the common clinical observation that having a child who is deficient in health or adaptive competence is a psychologically stressful experience for the mother. The mothers of the mentally retarded children appeared to experience greater psychological stress than the mothers of the chronically ill children.

Patterns of Coping in Families of Psychotic Children

Article

Full-text available

Jul 1977

Lee M. Marcus

The nature of family adaptation to severely and chronically disabling cognitive and behavioral conditions is considered. The relationship between atypical development and family response is examined to derive basic concepts--parents' perceptions of their child's unusual characteristics, effects on social relationships, etc.--and suggest strategies for intervention and research.

The impact of the child's deficiency on the father: A study of fathers of mentally retarded and of chronically III children.

Article

Full-text available

Apr 1976

S. Thomas Cummings

Psychological assessments of fathers of mentally retarded, of chronically ill, and of healthy children indicate that the first two groups undergo significant stress associated with their fathering a handicapped child. Some fathers of mentally retarded children appear subject to a pattern of neurotic-like constriction. Differences in the experiences of fathers and mothers of deficient children are discussed, and suggestions for treatment are offered.

Psychosocial Assets of Parents of Handicapped Children

Article

Full-text available

Dec 1979

William N. Friedrich

Examined a large number of psychosocial and demographic variables (from the Questionnaire on Resources and Stress, Locke-Wallace Marital Adjustment Scale, the Psychological Well-Being Index, a social support scale, and a religiosity index) to determine which were the best predictors of the coping behavior of mothers of handicapped children. Ss were 98 mothers of children with a wide variety of handicapping conditions. A stepwise multiple regression analysis indicated that marital satisfaction was the best overall predictor, accounting for 79% of the predictive ability. Other significant predictors were the child's residence and sex. (8 ref)

Parental perceptions of child behavior problems, parenting self-esteem, and mothers' reported stress in younger and older hyperactive and normal children

Article

Full-text available

Feb 1983

40 parents of younger and older hyperactives (Hs; aged 5 yrs 1 mo and 8 yrs 4 mo, respectively) and 51 parents of age-matched normal controls completed measures of hyperactivity and child behavior, parenting self-esteem (PSE), and parenting stress. PSE was lower in parents of Hs than in parents of controls. Self-esteem related to skill/knowledge as a parent was age related, with parents of older Hs reporting the lowest levels; self-esteem related to valuing/comfort in the parenting role was not related to the child's age. Mothers of Hs, especially younger ones, reported markedly higher levels of stress associated with both child characteristics and their own feelings, such as depression, self-blame, and social isolation. Consistent inverse relationships were found between PSE and perceptions of child problems, whereas ratings of child disturbance and maternal stress were positively correlated. Findings are discussed in terms of the social contexts surrounding hyperactivity and the need for multidimensional assessments and interventions in families of Hs. (47 ref)

A noncategorical approach to chronic childhood illness

Article

Full-text available

Jul 1982

An Examination of Differences Between Nonclinic and Behavior-Problem Clinic-Referred Children and Their Mothers

Article

Full-text available

Jun 1980

Attempted to determine if clinic and nonclinic groups differed according to the following factors: child behavior recorded in the home by an independent observer (O); maternal behavior recorded in the home by an independent O; mother-recorded rates of child behavior; maternal perceptions of child behavior; and presence of maternal depression, anxiety, and marital problems. The study also attempted to determine, by means of a stepwise discriminant analysis, which factor was the best discriminator of clinic–nonclinic status in children. Multiple regression analyses were used to examine which variables were the best predictors in each group of the discriminator variables delineated in the stepwise discriminant analysis. 20 behavior-problem clinic-referred 5-yr-olds and their mothers and 20 nonclinic 5-yr-olds and their mothers served as Ss. Results indicate that the 2 groups differed on child compliance recorded by an independent O and by the mother, maternal perception of child adjustment, and maternal adjustment. Maternal perception of child adjustment was the best discriminator between groups. For the nonclinic group maternal perceptions of child adjustment were best predicted by the child's behavior, whereas for the clinic group maternal perceptions of child adjustment were best predicted by an interaction of child behavior and the mother's personal adjustment. (9 ref)

Self Acceptance in Parents of Children with Autism

Article

Apr 2022

This paper focuses on the self acceptance of parents who have children with autism. The number of people with autism continues to experience an upward trend, which means that the number of parents of children with autism also continues to grow. In the early phase after the child is diagnosed as autistic, the family may find it hard to accept the reality, including both parents, even though the child needs assistance from their parents. In the early stages of diagnosis, parents may feel shock and assign blame, but gradually they are able to build self acceptance and a positive attitude. Some of these parents come to Kendis City Service Center in Kendari. The results of this study showed that the steps taken by parents in achieving long-term self acceptance include working through the stages of rejection, anger, bargaining and acceptance. Patience and tolerance in the acceptance process contribute greatly so that parents of children with autism can accept the reality that befell their child. From patience and tawakkal, parents of children with autism can control their anger and rejection and transform these into acceptance. Keywords: self acceptance, parents, autism, patience, tawakkal

Autism in Adolescents and Adults

Book

Jan 1983

The state of North Carolina has had a longstanding concern and com mitment to the understanding and treatment of autistic, communications handicapped children and their families. This commitment found expres sion in the only comprehensive statewide program for families confronted with this disability, Division for the Treatment and Education of Autistic and related Communication handicapped CHildren (Division TEACCH). Our program staff has been privileged to respond to this commitment by developing and providing the needed services, and to engage in research informed by our clinical experience. Although many of the problems con cerning these developmentally disabled children remain to be solved, substantial progress has been made during this past decade of collabo ration among professionals, parents, and their government representa tives. The TEACCH staff has resolved to mark the effectiveness of this collaboration by holding a series of annual conferences focused on the several major issues confronting these children and their families. The conferences are held in order to bring together the best research knowl edge available to us from throughout the country, and to encourage par ticipation by the different professional disciplines and concerned parents. In addition these annual meetings form the basis for a series of books based on the conference theme. These books are, however, not merely the published proceedings of the presented papers: some chapters are expanded from conference presentations and many others were solicited from experts in the related areas of research and their service application.

Prevention of emotional, behavioral, and family problems of children with chronic medical illness

Article

Jan 1987

The Impact of Children's Physical Handicaps on Marital Quality and Family Interaction

Article

Dec 1978

The education of the mentally handicapped child

Article

Jan 1978

H. Gunzburg

CHIP. Coping Health Inventory for Parents: An Assessment of Parental Coping Patterns in the Care of the Chronically Ill Child

Article

May 1983

Are there coping patterns parents use to manage family life and health successfully when a child member has a chronic illness? In the present study, data were collected on 100 families who have a child with cystic fibrosis. By factor analyzing scaled responses to behavior items on the Coping Health Inventory for Parents (CHIP), three parental coping patterns emerged: (a) maintaining family integration, cooperation, and an optimistic definition of the situation; (b) maintaining social support, self-esteem, and psychological stability; and (c) understanding the medical situation through communication with other parents and consultation with the medical staff. These patterns were validated against criterion measures of improvements in the child's health and adaptive family-life dimensions of cohesiveness, expressiveness, conflict reduction, organization, and control. The findings have implications for present strategies of health-care delivery and for health-care professionals seeking to facilitate family adaptation to the stresses of chronic illness.

An Inventory for Measuring Depression

Article

Jun 1961
ARCH GEN PSYCHIAT

A.T. Beck

The difficulties inherent in obtaining consistent and adequate diagnoses for the purposes of research and therapy have been pointed out by a number of authors. Pasamanick12 in a recent article viewed the low interclinician agreement on diagnosis as an indictment of the present state of psychiatry and called for "the development of objective, measurable and verifiable criteria of classification based not on personal or parochial considerations, but on behavioral and other objectively measurable manifestations."Attempts by other investigators to subject clinical observations and judgments to objective measurement have resulted in a wide variety of psychiatric rating scales.4,15 These have been well summarized in a review article by Lorr11 on "Rating Scales and Check Lists for the Evaluation of Psychopathology." In the area of psychological testing, a variety of paper-and-pencil tests have been devised for the purpose of measuring specific

Mothers: The Unacknowledged Victims

Article

Jan 1980

The role of the mother was viewed from the perspective of coercion theory. Within that context, it was assumed that mothers of normal preschool children are exposed to high densities of aversive events. Existing research literature supported these hypotheses and showed that the younger the child the higher the rates. Data were also summarized which showed that mothers' satisfaction with their role may vary as a function of these inputs. Observation data showed that mothers of aggressive children encountered higher rates than mothers of normal children. In normal families the fathers function as social facilitators and resident "guest." Mothers serve as caretakers; and both parents share in child management problems. In distressed families the same roles occur; however, the mother's role is expanded to include that of crisis manager. The culture defines which attack behaviors a child may direct to his mother. Her mere presence is associated with increased likelihood for the occurrence of these responses. Mothers were shown to be more involved in extended coercive interchanges with the problem child. During extended interchanges, the problem child escalated to a maximum intensity very early in a sequence of coercive behaviors. Mothers escalated slowly to a mild aversive level and then withdrew at the earliest possible juncture. With siblings, the problem child's chains were in response to a noxious intrusion; when the problem child escalated in intensity, they quickly followed suit. However, with the mother the problem child's chains seem to constitute an attack rather than a reprisal. It was hypothesized that prolonged experience in aversive systems produces low self-esteem. In that regard, mothers of socially aggressive children would be exposed to higher rates of aversive events than would mothers of stealers. Comparisons were made on the baseline self-reports from the Minnesota Multiphasic Inventory. Mothers of socially aggressive children were significantly higher on the depression scale, with borderline elevations on hysteria and social introversion and lower scores on hypomania. Mothers of children who steal had MMPI profiles which were similar to the classic profiles for adolescent delinquents, that is, elevated scores on psychopathic deviate and hypomanic. Following training and supervision in child management skills, there was a significant decrease in the depression and social introversion scores and an increase in the hypomania scale. These changes were particularly marked for mothers of socially aggressive children.

Differences, Difficulties and Adaptation: Stress and Social Networks in Families with a Handicapped Child

Article

Jan 1984

This paper discusses differences in 100 families with and without a handicapped child with respect to three types of stress (individual, marital, and parenting) and three structural characteristics of their social support networks (size, density, and boundary density). Generally, higher levels of stress and distinct network structures were found for the families with handicapped children. Despite the presence of high levels of stress, the families were found to have successful coping strategies. The results are discussed in terms of recognizing family strengths, and incorporating existing adaptational patterns in clinical interventions.

A social learning approach, vol. 3: Coercive family process

Article

Jan 1984
BEHAV THER

Conduct Disorder in Childhood and Adolescence

Article

Jan 1996

Alan E. Kazdin

The prevalence of conduct disorder in children constitutes a severe and persistent social problem. Conduct disorder - which encompasses antisocial behaviours such as aggressive acts, theft, vandalism, arson, running away, truancy and defying authority - is a common reason for referring children and adolescents for psychological and psychiatric treatment. The newly revised edition of this volume describes the nature of conduct disorder, incorporating the most important findings since the publication of the original. The author draws on current research and clinical work from a variety of fields to explore such topics as: psychiatric diagnosis; child-rearing practices; parent psychopathology; sex differences in development; interactions of heredity and environment; risk and protective factors; and treatment and prevention.

Life Events, Stress, and Illness

Article

Dec 1976

A review of the literature on the relation of life events, stress, and illness shows the clear recognition that illness onset is the outcome of multiple characteristics of the individual interacting with interdependent factors in the individual's social context, in the presence of a disease agent. The conceptual model is comprehensive, multicausal, and interactive; empirical designs should consider this complexity. Crucial in the process of measuring relationships between change in life events and illness onset are the psychometric properties of the measures used and the method of data collection that is employed. The importance of (a) thorough conceptualization and sampling, (b) multidimensional scaling of item samples to identify common dimensions of life events, (c) determination of the true variance and stability of the measures over a variety of populations is stressed. In retrospective studies, important sources of error in measuring life events are selective memory, denial of events, and overreporting to justify an illness. In prospective studies, the subjective evaluation of the significance of a life event to a respondent has been neglected. It is concluded that improvement in data analytic procedures remains a major challenge for life events investigators. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

The Role of Maternal Distress in a Parent Training Program to Modify Child Non-compliance

Article

Apr 1984
BEHAV COGN PSYCHOTH

This paper reviews the effects of maternal distress on several aspects of parent—child interactions that were identified in the course of a parent training program for child non-compliance. Distress was measured by a number of self-report questionnaires examining depression, anxiety, marital relations, and extrafamilial relationships. The parent training program is initially reviewed. Subsequently, pretreatment relationships between maternal distress and parent—child interactions were examined. Distress appears to be related primarily to measures of parent perceptions of child maladjustment. Several relationships between distress and treatment outcome also were noted. A recent study designed to enhance parent training by modifying maternal distress factors is presented. Finally, implications and limitations of the data are discussed. © 1984, British Association for Behavioural and Cognitive Psychotherapies. All rights reserved.

Personality measurement in parents of retarded and emotionally disturbed children: A replication

Article

Jul 1978
J CLIN PSYCHOL

Replicated Erickson's (1968, 1969) studies that compared MMPI profiles of parents of emotionally and behaviorally disturbed (ED), mentally retarded (MR), and non-clinic (N) children. In general, Erickson's findings that the MR and ED parents did not differ, but that both showed elevated profiles relative to N, were confirmed. The results were interpreted to provide partial support for Erickson's “stress reaction hypothesis,” whereby the well-known clinic parent MMPI elevations presumably reflect the parents' stress as a result of having a disturbed or handicapped child.

Psychometric properties of the Beck Depression Inventory: Twenty-five years of evaluation

Article

Dec 1988
CLIN PSYCHOL REV

Research studies focusing on the psychometric properties of the Beck Depression Inventory (BDI) with psychiatric and nonpsychiatric samples were reviewed for the years 1961 through June, 1986. A meta-analysis of the BDI's internal consistency estimates yielded a mean coefficient alpha of 0.86 for psychiatric patients and 0.81 for nonpsychiatric subjects. The concurrent validitus of the BDI with respect to clinical ratings and the Hamilton Psychiatric Rating Scale for Depression (HRSD) were also high. The mean correlations of the BDI samples with clinical ratings and the HRSD were 0. 72 and 0.73, respectively, for psychiatric patients. With nonpsychiatric subjects, the mean correlations of the BDI with clinical ratings and the HRSD were 0.60 and 0.74, respectively. Recent evidence indicates that the BDI discriminates subtypes of depression and differentiates depression from anxiety.

Parents'report of life with a developmentally delayed child

Article

Oct 1981

Summary This study was undertaken to investigate how parents who have a child with some degree of handicap perceive the effect of the child on family life. Also, a measure of parental health was taken. The parents' response was compared with that of parents of age-matched children without any known developmental difficulties. The parents and children were grouped according to the manifested handicap of the child [Down's syndrome, developmental quotient (DQ) greater than 65, DQ less than 65 with/without limb dysfunction and normal controls]. The children's ages ranged from 4 to 126 months and they all had received the South Glamorgan Home Advisory Service (HAS) at some time. Sixty-one families completed a questionnaire concerning family life and activities and Rutter's Malaise Inventory (Rutter et al. 1971). Thirty-one control families also completed the questionnaire and Malaise Inventory. The findings showed very little difference between the control group and handicapped groups and suggested that the presence of a delayed child in the family unit does not appear to change the family routine to any large extent. Parents of handicapped children were not found to suffer from significantly greater ill health when compared with the parents of normal children. The implication of the results is that provision should be made available for both fathers and mothers to play an equal part in the support facilities and guidance offered.

Child and Adolescent Psychiatry: Modern Approaches

Article

Mar 1995

Elena Maria Garralda

Mental retardation and stress on the parents: A contrast between Down's syndrome and childhood autism.

Article

Feb 1976
Am J Ment Defic

Mothers of autistic, Down's syndrome, and outpatient psychiatric clinic children completed a questionnaire about their attitudes toward the identified child and the effects of the child on themselves and their families. A canonical correlation between the 15 questionnaire scales and three groups revealed a general retardation/social dependency factor separating the mothers of the two retarded groups from the clinic sample. The autism group was differentiated from the Down's syndrome group by scales measuring severity of the child's handicap and family integration problems more than by scales measuring stress on the mother. The hypothesis that mothers of autistic children would report more problems than both other groups was supported; the hypothesis that mothers of Down's syndrome children would report more problems than mothers of outpatient clinic children was not.

The Impact of an Abnormal Child upon the Parents

Article

May 1977

Ann Gath

Thirty families with a newborn mongol baby were matched with thirty families with a normal baby. Both groups were followed for eighteen months to two years and interviewed six times. Few differences could be found in the mental or physical health of the two groups of parents, but marital breakdown or severe marital disharmony was found in nine of the mongol families and in none of the controls.

Family responses to developmentally delayed preschoolers: Etiology and the father's role

Article

Jun 1986
Am J Ment Defic

Parents of 59 developmentally delayed preschoolers (18 with Down syndrome, 19 with neurological problems, and with 22 unknown etiologies) responded to questionnaires and structured interviews to assess parental stress and support, locus of control, and self-esteem. There were group differences in maternal reports of positive experience with the child, self-esteem, reported support, and relations with grandparents. With the exception of self-esteem, all comparisons favored the Down syndrome group. Fathers reported fewer distress symptoms, higher self-esteem, more internal locus of control, and less support than did mothers. These findings indicate a need to understand individual differences among families of delayed children and illustrate that the effects of a child's handicap on fathers differ from those upon mothers.

Marital Intimacy in Parents of Exceptional Children

Article

Sep 1989

The purpose of this study was to examine the role of perceived parenting stress and parental depression on marital intimacy between parents of handicapped children versus developmentally normal children, and to investigate discrepancies between husbands' and wives' reports of marital intimacy. The parents of 31 autistic children, 31 Down Syndrome children and 62 developmentally normal children, matched for both mental and chronological age were studied. Results indicated significantly greater stress and depression, as well as lower marital intimacy for mothers of autistic children than mothers of normal children, and significantly greater stress than mothers of Down Syndrome children who fell somewhere between other groups of parents in all three measures. Fathers of autistic children experienced significantly higher parenting stress than the other groups, as well as lower marital intimacy but there were no differences amongst fathers on measures of depression. Low scores on subscales of identity and compatibility for mothers implying low self esteem contributed significantly to the lowered perception of marital intimacy. Implications for intervention, based on these findings, are discussed.

Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions

Article

Jun 1988
AM J MENT RETARD

A M Donovan

Mothers' perception of family stress and ways of coping with adolescents who were autistic or had mental retardation (ns = 36 for both groups) were compared. Group differences were found among maternal reports of family stress. All comparisons of child-related stress revealed that mothers with an adolescent who was autistic perceived greater level of family stress than did mothers with an adolescent who had mental retardation. Marital adjustment did not differ by group. Furthermore, maternal coping styles were consistent across groups, indicating that mothers with adolescents who had a handicap relied heavily on community resources and professional help for coping.

Indirect influence of maternal social contacts on mother-child interactions: A setting event analysis

Article

Jul 1986

Jean E. Dumas

Fourteen mother-child dyads who had sought psychological help for severe interaction problems took part in a study that investigated the relationship between maternal social interactions with adults outside the family and mother-child interactions in the home. Social interactions outside the family were based on maternal self-reports; mother-child interactions in the home were based on direct observations and included both base-rate and sequential measures. Results indicated that mothers were significantly more aversive toward their children on days in which they had themselves experienced a high proportion of aversive interactions with adults than on days in which they had not. This higher level of aversiveness was evident in their responses to both aversive and nonaversive child behavior and could not be attributed to any corresponding change in child behavior. Implications for research and clinical practice are discussed.

‘Stress in the families of children with intellectually handicapped preschool children

Article

Jul 1986
J Ment Defic Res

Family stress levels were examined using the Questionnaire on Resources and Stress (QRS) in 42 New Zealand families with preschool intellectually handicapped (moderately and severely retarded) children and 42 families with nonhandicapped preschool children. Maternal age was employed as a blocking factor (less than 30 years versus 30 years and above). The families with intellectually handicapped children showed significantly higher stress levels on 13 of the 15 QRS scales, but maternal age did not appear to be implicated in family stress levels. The results suggest that stress levels are somewhat elevated in families with preschool children, the tendency being particularly marked in families with intellectually handicapped children. The implications of these findings for family intervention and support programmes are considered, together with the need for research into the various ecological contexts of the individual, family, peer group and social institutions, as well as of the interactions within and between these contexts as mediators of coping resources in families with intellectually handicapped children.

Revision of the Parenting Stress Index

Article

Jul 1985

To facilitate early identification of children at risk for development of behavioral or emotional disturbance, the Parenting Stress Index (PSI) is designed as a screening and diagnostic instrument that measures the relative magnitude of stress in the parent-child system. For this study, the most recent revision of the PSI, Form 6, was evaluated for reliability and factorial validity using a sample of 534 parents. Form 6 of the PSI was found to have even higher reliability than previous forms, supporting its continued usefulness both for preliminary screening and for pretest/posttest measurement of the effectiveness of counseling programs and intervention techniques. Form 6 of the PSI was also found to have high factorial validity, suggesting that the domain scores and subscale scores may be confidently utilized to provide information about specific sources of stress in the parent-child system which should be the focus of further attention and professional assistance.

Must a Family with a Handicapped Child Be a Handicapped Family?

Article

Jan 1975

Fifty‐nine families of children with spina bifida and their matched controls have been under investigation since the children's births between 1964 and 1966. The quality of the marital relationship in the index families was found to have deteriorated over the years, but to have improved slightly in the control families. The divorce rate of the index families was twice that of the controls and of the national average. The mother who is pregnant at marriage and who subsequently gives birth to a malformed child is highly predisposed to divorce or separation. Only one in four of the index families appeared to be free of marital difficulty. RÉSUMÉ 59 families d'enfants atteints de spina bifida et leur contrôles appariés ont été suivies depuis la naissance des enfants entre 1964 et 1966. La qualité des relations maritales dans les families tests s'est détériorée au cours des ans, tandis qu'il s'améliorait légèrement dans le groupe contrôle. Le taux de divorce dans les families tests a été double de celui des contrôles et de la moyenne nationale. Les mères enceintes au moment du mariage et qui donnèrent par la suite naissance à un enfant malformé présentaient un risque élevé de divorce ou de séparation. Un quart seulement des families tests paraissaient indemnes des difficultés conjugales. ZUSAMMENFASSUNG 59 Familien mit Kindern mit Spina bifida und ihre entsprechenden Kontrollen sind seit der Geburt dieser Kinder in den Jahren 1964 und 1966 in ständiger Kontrolle. Die ehelichen Beziehungen in den betroffenen Familien wurden im Verlauf der Jahre deutlich schlechter, währen sie in den Kontrollfamilien etwas besser wurden. Die Scheidungsrate war in den betroñenen Familien doppelt so hoch wie in den Kontrollfamilien und dem nationalen Durchschnitt. Die Mütter, die bei der Heirat gravide waren und dann ein mi ßgebildetes Kind zur Welt brachten, wurden in den meisten Fällen geschieden oder lebten getrennt. Nur eine von vier betroffenen Familien schien keine ehelichen Probleme zu haben. RESUMEN 59 familias de niños con espina bifida y sus contrôles correspondientes han estado bajo vigilancia desde el nacimiento de los niños entre 1964 y 1966. Se halló que la calidad de la relación marital se había deteriorado con los años, mientras que en el grupo control habia mejorado ligeramente. El porcentage de divorcios en las familias afectas era mayor en comparación con los control y con el índice nacional. Las madres que gestaban al casarse y que dieron a luz un niño malformado, tenían gran tendencia a divorciarse o separarse. Sólo una de cada cuatro de las familias afectas no presentaban dificultades maritales.

Families of Handicapped Children: Sources of Stress and its Amelioration

Article

Oct 1983

This literature review focuses on the stresses families experience and the support factors needed to help them cope with their handicapped children. Stress often appears to increase with the age of the handicapped child, and it is also based on the daily care-giving demands of the child. Other general factors affecting stress are low family income, divorce, separation, and so forth. The father often plays a limited role in these families even when present. Both formal and informal social support networks are important to these families, often more so than professional support, which has been uneven. Families need to be treated as having individual needs that require individual solutions, even as their handicapped children. Investigators and practitioners are encouraged to continue their focus on the family as a legitimate unit of study and treatment.

Parents' reactions to the birth of a developmentally disabled child

Article

Feb 1980
Am J Ment Defic

S E Waisbren

Thirty families with a developmentally disabled child less than 1.5 years old were compared to 30 families with a nonhandicapped child. One-half of the families lived in California, and half lived in Denmark. Findings indicated that parents with a very young developmentally disabled child see themselves more negatively after the baby's birth, and they express more negative feelings about their child. Regarding Danish--American differences, the supportive services in Denmark did not have a significantly greater impact on the parents' adjustment than did the supports in the United States. Furthermore, the use of supportive services correlated with positive adjustment in some areas and negative adjustment in others.

Adaptation of families with mentally retarded children: A model of stress, coping, and family ecology

Article

Oct 1983
Am J Ment Defic

Research concerned with families of mentally retarded children has often yielded inconsistent, and at times, contradictory findings. This inconsistency is partly due to methodological inadequacies and a narrow focus on unidimensional variables with unimodal measurements. In addition, no succinct model has been presented to explain family adaptation and the range of possible outcomes. In this paper a critical review focused on parents, siblings, parent-child interactions, and family systems was presented. A comprehensive conceptual model was proposed that accounts for (a) the range of possible familial adaptations, both positive and negative, involving the impact of perceived stress associated with the presence of a retarded child; and (b) the family's coping resources and ecological environments as interactive systems that serve to mediate the family's response to stress.

"Difficult" Children as Elicitors and Targets of Adult Communication Patterns: An Attributional-Behavioral Transactional Analysis

Article

Feb 1984

A transactional model of adult-child interaction was proposed and tested. In determining the effects that caregivers and children have on each other, it was maintained that adult attributions act as important moderators in the interaction process. Specifically, it was predicted that adult beliefs about the causes of caregiving outcomes act as selective filters or sensitizers to child behavior--determining the nature and amount of adult reaction to different child behaviors. It was further predicted that adult attributions act in a self-fulfilling fashion, that is, the communication patterns that follow from caregiver beliefs act to elicit child behavior patterns that maintain those beliefs. In a synthetic family strategy, elementary-school-aged boys were paired with unrelated mothers (N = 96) for videotaped interactions. Children were either trained or preselected on two orthogonal dimensions: responsiveness and assertiveness. Mothers were premeasured on their self-perceived power as caregivers (S+) and the social power they attributed to children (C+). Videotapes were analyzed separately for adult facial expression and posture, voice intonation, and verbal communication. Each of these behavioral dimensions was measured on the dimensions of affect, assertion, and "maternal quality" (e.g., baby-talk). We expected low self-perceived power to sensitize the adult to variations in child responsiveness and high child-attributed power to sensitize the adult to variations in child assertiveness. Two transactional sequences were obtained (the same patterns were obtained for acted and dispositional enactments of child behavior): 1. Low S+ mothers (in comparison with high S+ mothers) were selectively reactive to child unresponsiveness. These adults reacted to unresponsive children with a communication pattern characterized by a "maternal" quality, negative affect, and positive affect that was unassertively inflected. Unresponsive children, in turn, reacted to low S+ mothers with continued unresponsiveness. 2. High C+ mothers (in contrast to low C+ mothers) were selectively reactive to child unassertiveness. These adults reacted to shy children with a "maternal," strong, and affectively positive communication style. Unassertive children, in turn, reacted to high C+ mothers with increased assertiveness. High S+ and low C+ mothers demonstrated no significant alterations in their behavior as a function of child behavior. This nonreactivity had positive consequences for child unresponsiveness (reduced) and negative consequences for child unassertiveness (maintained).(ABSTRACT TRUNCATED AT 400 WORDS)

MMPI characteristics for parents of emotionally disturbed and learning-disabled children

Article

Nov 1982

A signal detection approach to social perception: Identification of negative and positive behaviors by parents of normal and problem children

Article

Jan 1983

The present experiment was designed to investigate differences in the perception of social behavior between parents of normal and problem children and to relate these differences to behavior observed in the home environment. Subjects were brought into the laboratory and asked to identify positive and negative behaviors on a written script portraying family interactions. Correct and incorrect responses were analyzed using signal detection procedures to produce measures of sensitivity and response bias for positive and negative behaviors. These analyses revealed that parents of normal children were better able to discriminate positive behavior than were parents of problem children. Correlations between these responses and data obtained for a subset of the subjects from 1-hour home observations, using a newly developed home observational coding system, revealed a number of relationships between these sets of variables.

The Insular Mother: Her Problems in Parent-Child Treatment

Article

Feb 1980

Robert G. Wahler

Eighteen mother-child dyads were referred for psychological help because of the children's oppositional behaviors and the mothers' aversive reactions to the children. All dyads were from low income families in which the mothers reported themselves to be relatively isolated from social contact in their communities. Following a baseline phase, the mothers were trained to modify their children's oppositional behaviors through time out and a point system. Fourteen of the dyads were observed in three phases of the study: baseline, parent training or treatment, and a 1-year follow-up period. In Phases one and two, child opposition and mother aversive reactions to the children were measured twice weekly by professional observers in the home settings. During Phase three (follow-up), these observations occurred twice per month. In addition, the mothers' self-reported contacts with people in their communities were obtained immediately after each observation. Results showed significant improvement in the mother-child problems during the parent training or treatment phase. However, the problems returned to baseline levels of occurrence during the follow-up phase. The self-report findings indicated that number of mother contacts with friends was an inverse predictor of these problems. On days marked by high proportions of friend contacts, mother-child problems were lower in frequency than on days marked by low proportions of friend contacts. These correlational findings were taken to suggest that a mother's extra-family social contacts may influence her child interaction patterns at home. This possibility was discussed as a factor in the long-term success of parent training as a treatment strategy.

Types of Marital Discord and Child Behavior Problems

Article

Oct 1980

Measures of overt marital hostility, general marital adjustment, and children's behavior problems were obtained from the parents of 64 children referred to a child psychological clinic. Correlations between children's scores on measures of general marital unhappiness and overt marital hostility were compared. Overt marital hostility correlated significantly with many behavior problems of boys. However, neither general marital unhappiness nor overt marital hostility related to problem behaviors in girls. Specific findings and possible reasons for the differential results with respect to boys and girls were discussed.

Parent personality and childhood disorders: A review of MMPI findings

Jan 1969
181-189

A J Hafner
J N Butcher
M D Hall
W Quast

Hafner, A.J., Butcher, J.N., Hall, M.D., & Quast, W. (1969). Parent personality and childhood disorders: A review of MMPI findings. In J.N. Butcher (Ed.), MMPI: Research develop-ments and clinical applications (pp. 181-189). New York: McGraw-Hill.

Chronic childhood disorder: Promoting patterns of adjustment

Jan 1975

I B Pless
P Pinkerton

Pless, I.B., & Pinkerton, P. (1975). Chronic childhood disorder: Promoting patterns of adjustment. Chicago: Henry Kimpton.

Must a family with a handicapped child be a handi-capped family? Developmental Medicine and Child Neurology

Jan 1974
95

B Tew
H Payne
K Laurence

Tew, B., Payne, H., & Laurence, K. (1974). Must a family with a handicapped child be a handi-capped family? Developmental Medicine and Child Neurology, 16, 95.

Autism in adolescents and adults The assessment of the severity and symptom patterns in depression

Jan 1983
372-407

Oxford
Blackwell
E Schopler
G B Mesibov
Plenum
B F Shaw
T M Vallis
S B Mccabe

Oxford: Blackwell. Schopler, E., & Mesibov, G.B. (1983). Autism in adolescents and adults. New York: Plenum. Shaw, B.F., Vallis, T.M., & McCabe, S.B. (1985). The assessment of the severity and symptom patterns in depression. In E.E. Beckham & W.R. Leber (Eds.), Handbook of depression: Treatment, assessment, and research (pp. 372-407). Homewood, IL: Dorsey Press.

Mothers: The unacknowledged victims. Monographs of the Society for Research in Child Development

Jan 1980
1-54

G R Patterson

Patterson, G.R. (1980). Mothers: The unacknowledged victims. Monographs of the Society for Research in Child Development, 45(5, Serial no. 186) pp. 1-54.

Parenting Stress, Child Behavior Problems, and Dysphoria in Parents of Children with Autism, Down Syndrome, Behavior Disorders, and Normal Development

Abstract

No full-text available

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