Jennifer Harrison Elder

Evaluating in-home training for fathers of children with autism using single-subject experimentation and group analysis methods

BackgroundAutism, or the broader category of autistic spectrum disorder, is a complex developmental disability with uncertain etiologies that appears to be increasing in prevalence. Researchers have stated that training programs for children with autism are most effective when they are individualized, address communicative intent of child behaviors, and promote social reciprocity between children and individuals with whom they have regular contact. Yet, to date, most of what is known comes solely from studying mothers, who have traditionally been the most accessible parent. ObjectivesIn this study the mother–child in-home training program was modified and evaluated for its effects on the acquisition of training skills by fathers and on precommunication skills by the autistic children. MethodsFrequency counts of skills taught to fathers and targeted child behaviors were obtained from videotaped father–child play sessions. These data were analyzed for each father–child dyad by using graphs and visual analyses, which are integral parts of single-participant experimentation. This procedure was replicated across all of the father–child dyads. Data were then grouped and analyzed using the more traditional repeated measures analysis of variance. ResultsThe most significant findings were increases in father use of imitating with animation (p < .0001) and child initiating following training (p < .0004). Also noteworthy were significant increases in father responding (p < .0005) and child vocalizations (p < .05). DiscussionResults of the study indicate that the in-home training for fathers of children with autism was effective and valued by the participating families.

EFFECTS OF IN-HOME TRAINING FOR CULTURALLY DIVERSE FATHERS OF CHILDREN WITH AUTISM

Recently there has been mounting interest in the role of fathers and the effect of their increasing involvement on child development. However, to date, little has been reported regarding the role of fathers with developmentally delayed children (e.g., autism, pervasive developmental delays) and cultural influences on father-child interactions. In this article we address this knowledge gap by reporting four cases representing the major ethnic groups. For each case, we (1) define the concept of fatherhood in its cultural context, (2) review and summarize related father-child research, and (3) present findings from our study evaluating the effects of an in-home intervention for autistic children. While variability is noted within and among the culturally diverse father-child dyads, there are also similarities across ethnic groups. Results of this study are promising, demonstrating the value of single subject experimental methods in characterizing and beginning to understand complex father-child interactions in autism and related child psychiatric disorders.

Caring for children with autism spectrum disorder. Part I: prevalence, etiology, and core features.

Autism spectrum disorder (ASD) affects 1 in 150 children and has been gaining national attention over the past decade. Given the prevalence of this disorder, there is a high probability that pediatric nurses will care for a child with ASD, regardless of the setting in which they work. Children with ASD traverse the primary care outpatient setting, schools, subspecialty clinics, and inpatient units. A basic understanding of the current issues regarding prevalence and etiology, coupled with knowledge of the core features of ASD, will help pediatric nurses in all settings and at various practice levels better care for these children.

Videotaped behavioral observations: Enhancing validity and reliability

Observing and quantifying behaviors in natural or clinical settings has long produced challenges for researchers and clinicians. Although nurses are uniquely positioned to conduct behavioral research, they may not be well acquainted with behavioral observation strategies. The author identifies several problems commonly encountered while studying behavior in natural settings and suggests methods for enhancing validity and reliability through videotaped observations. Results of a newly developed calibration procedure are discussed with implications for rater training. Nurse clinicians and researchers should find this information useful for evaluating interventions in clinics, homes, and other applied settings.

Single subject experimentation for psychiatric nursing

Mental health nurses encounter countless opportunities to assess medication and intervention efficacy but often find themselves relying solely on descriptive case study accounts and familiar group comparison methodology. Although case studies are useful, they lack scientific rigor and group comparison designs may not be suited to certain client populations or research questions that address individual client characteristics. The purpose of this article is to describe single subject experimentation, contrast this approach with case study and group comparison designs, and discuss how this type of scientific inquiry can be incorporated in psychiatric nursing practice.

Identifying the Barriers to Early Diagnosis and Treatment in Underserved Individuals with Autism Spectrum Disorders (ASD) and Their Families: A Qualitative Study.

Clinical accounts indicate that disparities exist among families of children with Autism Spectrum Disorders (ASD), and that these disparities impede timely diagnosis and intervention. Furthermore, families living in rural areas are more likely to have reduced access to proper care and use alternative, unproven, and potentially harmful treatments. The purpose of this project was to begin addressing these needs by engaging providers and families of children with ASD living in rural and typically underserved areas. The investigators established a Community Advisory Board (CAB) of ASD professionals (e.g., community-based healthcare and service providers, director of a center for disabilities, psychologist, autism researcher, and special education professional). Next, they conducted four focus groups comprised of a total of 35 major stakeholders (e.g., individuals with ASD, parents of individuals with ASD, community-based healthcare and service providers, school teachers) to determine potential resources, barriers to early diagnosis/treatment, and alternative treatment use in children with ASD. Focus group sessions were audio-recorded, transcribed verbatim, and analyzed by three trained independent coders. Community participants identified several barriers to early diagnosis and intervention, as well as a variety of alternative treatments used in children with ASD. Thematic analysis of focus group transcripts showed several overarching themes regarding barriers to early diagnosis and treatment. Findings from this study have implications for practice and future research.

Social turn-taking of children with neuropsychiatric impairments and their parents.

Social interactional theory posits that child behavior and parent behavior are inter-dependent. Interactions that encourage reciprocity and balanced turn-taking are considered most conducive to child communication development. Children who have impaired communication development often exhibit frustration and a variety of aberrant behaviors. These behaviors may be, at least in part, because of a breakdown or imbalance in parent-child turn-taking, a form of social reciprocity. Parent-child turn-taking was examined in children exhibiting a variety of neuropsychiatric symptoms, including developmental delays and behavioral problems. Preadmission videotapes of 43 children and their parents (43 mothers and 21 fathers) were coded with respect to initiating and responding behaviors. Twenty-seven of the children were prelinguistic, and 16 were linguistic. An imbalance in parent-child reciprocity and turn-taking was noted in this sample: Parents initiated more frequently than children, and children responded to approximately half of parent initiations. There was a greater imbalance in prelinguistic children, evidenced by a significantly higher rate of mother initiating (p < .01) and responding behaviors (p < .08) as well as a significantly lower rate of child initiating behaviors (p < .02). Implications for interventions focusing on the parent-child dyad and including fathers are discussed, as well as directions for further research.

Predictors of sense of coherence in typically developing adolescent siblings of individuals with autism spectrum disorder.

BACKGROUND Children with autism spectrum disorder (ASD) may be a stressor for family members yet there is little published research on the impact of having a child with ASD on their typically developing (TD) adolescent siblings. According to Antonovskys salutogenic model, a strong sense of coherence leads to the view that the stressor is a manageable challenge rather than a burden and promotes healthier adaptation. This study examines the relationship between stress, TD sibling resources and the sense of coherence in TD siblings. METHOD This quantitative mail-based study uses a survey methodology, analysing the responses of TD adolescent siblings (n = 96) of individuals with autism, Aspergers syndrome, or pervasive developmental disorder - not otherwise specified to several rating scales. Adolescent siblings, ages 11 to 18 years, completed the Adolescent Coping Orientation for Problem Experience (ACOPE), Network of Relationship Inventory - Social Provision Version (NRI-SPV), Youth Self Report (YSR), and Sense of Coherence (SOC) instruments; parents completed the Child Autism Rating Scale - 2nd Edition (CARS-2). RESULTS The salutogenesis model was used to guide and inform this research. Findings suggested the following: (a) the stress of ASD severity and resource of adjustment are related in TD adolescent siblings; (b) TD sibling adjustment has a strong relationship with sense of coherence levels; and (c) a greater number of positive coping strategies buffer TD sibling coherence levels when ASD severity scores are high. CONCLUSIONS ASD severity and TD adolescent sibling resources influence sense of coherence in adolescent TD siblings of individuals with ASD.

Autism and Family Interventions Through Technology: A Description of a Web-Based Tool to Educate Fathers of Children with Autism

Most research on family interventions of children with autism has focused on the role of the mother, and little is known about the effects of training fathers. Through a series of National Institutes of Health–funded studies we have demonstrated treatment success by focusing on fathers who are trained at home. Although our research has been successful, this work introduces questions related to how best to train fathers when on-site, in-home training is not a viable option due to geographical distance or a variety of other logistical constraints. This article describes the development and initial use of an Internet-based tool to offer this training more broadly. We briefly describe past research as well as the need for the implementation of an Internet-based tool. We then describe the system, document early indicators of success, and discuss metrics we are using with our fathers. The article concludes with a discussion of future goals and research needs.

Family dynamics in the United States, Finland and Iceland

Understanding the dynamics of contemporary, postmodern families and how these relate to health is critically important to nurses and other health care providers throughout the world. Much can be learned by studying not only ones own culture but also other countries. Thus, the purpose of this study was to compare family dynamics of families in the United States, Finland and Iceland. To date relatively little has been published related to families in these Nordic countries. Six family dimensions in Barnhills Family Health Cycle served as the theoretical framework. Adult respondents (n = 567) purposively selected from varied community groups, completed the Family Dynamics Measure II (FDM II) and a sociodemographic questionnaire. Main findings from the three countries were positive family dynamics, with mutuality contributing the strongest factor to partially confirm the theoretical propositions in Barnhills Family Health Cycle. Respondents from all countries reported (1) clear communication and flexibility that contribute to mutuality; (2) younger age of respondents and increased education that were associated with more positive family dynamics; and (3) larger families associated with more negative dynamics. Mixed reports occurred according to gender, with Nordic men tending to perceive some negative dimensions. Marriage was important for more positive family dynamics only in the United States. Families in the United States and in Iceland had in common more negative family dynamics during illnesses. Problems and changes affected mostly families in the United States. In general, families in Finland and Iceland had greater strengths than in the United States. This benchmark study offers information for health practitioners to assist families, as well as contribute to the improvement of family social policies, especially in the United States.