Sarah Dababnah

Linking autism measures with the ICF-CY: functionality beyond the borders of diagnosis and interrater agreement issues.

Purpose: This study aims to: (1) link measurements used in the diagnosis of children with autism spectrum disorders (ASDs) with the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY) and (2) analyse issues relating with interrater agreement within this process. Method: Three instruments for ASD diagnosis were linked with the ICF-CY using deductive content analysis. Results: Correspondences between items’ content and ICF-CY dimensions were identified for all ICF-CY components, except for environmental factors. Interrater agreement varied with the content of the units analyzed. Conclusion: The linkage between the ICF-CY and the analyzed measures provides a way to document assessment–intervention outcomes using a common language, as well as to integrate diagnostic and functional data. Diagnostic measurements provide functional information beyond the diagnostic criteria defined for autism. A functional perspective is added to diagnostic outcomes, thus better informing educational and rehabilitation practices for children with ASD.

Cervical and breast cancer-screening knowledge of women with developmental disabilities

Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of womens knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed.

State-level income inequality and family burden of US families raising children with special health care needs

Growing evidence supports the hypothesis that income inequality within a nation influences health outcomes net of the effect of any given households absolute income. We tested the hypothesis that state-level income inequality in the United States is associated with increased family burden for care and health-related expenditures for low-income families of children with special health care needs. We analyzed the 2005-06 wave of the National Survey of Children with Special Health Care Needs, a probability sample of approximately 750 children with special health care needs in each state and the District of Columbia in the US Our measure of state-level income inequality was the Gini coefficient. Dependent measures of family caregiving burden included whether the parent received help arranging or coordinating the childs care and whether the parent stopped working due to the childs health. Dependent measures of family financial burden included absolute burden (spending in past 12 months for childs health care needs) and relative burden (spending as a proportion of total family income). After controlling for a host of child, family, and state factors, including family income and measures of the severity of a childs impairments, state-level income inequality has a significant and independent association with family burden related to the health care of their children with special health care needs. Families of children with special health care needs living in states with greater levels of income inequality report higher rates of absolute and relative financial burden.

Feasibility of an empirically based program for parents of preschoolers with autism spectrum disorder

This article reports on the feasibility of implementing an existing empirically based program, The Incredible Years, tailored to parents of young children with autism spectrum disorder. Parents raising preschool-aged children (aged 3–6 years) with autism spectrum disorder (N = 17) participated in a 15-week pilot trial of the intervention. Quantitative assessments of the program revealed fidelity was generally maintained, with the exception of program-specific videos. Qualitative data from individual post-intervention interviews reported parents benefited most from child emotion regulation strategies, play-based child behavior skills, parent stress management, social support, and visual resources. More work is needed to further refine the program to address parent self-care, partner relationships, and the diverse behavioral and communication challenges of children across the autism spectrum. Furthermore, parent access and retention could potentially be increased by providing in-home childcare vouchers and a range of times and locations in which to offer the program. The findings suggest The Incredible Years is a feasible intervention for parents seeking additional support for child- and family-related challenges and offers guidance to those communities currently using The Incredible Years or other related parenting programs with families of children with autism spectrum disorder.

Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n  =  32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

Financial Well-being of Single, Working-age Mothers of Children with Developmental Disabilities

Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income, net worth, and liquid assets of U.S. single, working-age mothers (n  =  242) of children and adult children with developmental disabilities. The well-being of these mothers was compared to the situation of married mothers of children with developmental disabilities (n  =  345) and of single mothers who did not have children with developmental disabilities (n  =  6,547). Compared with both married mothers of children with developmental disabilities and single mothers without children with developmental disabilities, single mothers of children with developmental disabilities had markedly worse financial well-being across a range of income- and asset-based measures. Single mothers caring for children with developmental disabilities face adverse financial well-being as compared with other mothers. Policy makers should consider targeted measures to improve the financial well-being of these parents.

Incredible Years Program Tailored to Parents of Preschoolers with Autism: Pilot Results.

Objective: This article reports on the acceptability and results from an evaluation of an empirically supported practice, The Incredible Years, tailored to parents of children with autism spectrum disorder (ASD). Methods: Two groups of parents (N = 17) participated in a mixed methods test with no comparison group of the 15-week intervention. Data were collected at baseline, posttest, and on a weekly basis. Results: Acceptability and attendance were high, attrition was modest, and parent stress decreased significantly after program completion. Parents highlighted several barriers to their success in the program, including difficulty applying some program content (e.g., time-out for noncompliance) to children with sensory or self-regulation challenges. However, participants reportedly enjoyed the play-based approach of the program, as well as opportunities for social support and peer learning. Conclusion: The Incredible Years is a promising intervention for parents raising preschoolers with ASD. A randomized controlled trial is needed to rigorously test the intervention.

Research With Children Exposed to Partner Violence Perspectives of Service-Mandated, CPS- and Court-Involved Survivors on Research With Their Children

Rapidly growing numbers of female survivors of intimate partner violence (IPV) who are the primary caregivers for their children are being mandated to services by child protective services (CPS) and/or the court system. Research is needed to better understand the experiences of these children; however, such research is hindered by the dearth of empirical evidence to guide researchers in how best to recruit and collect data about and from IPV-exposed children whose families are mandated to services. From a qualitative study with 21 CPS- and/or court-involved mothers, this article reports findings about participants’ perspectives regarding research with their IPV-exposed children. Our analyses determined three key findings: (a) mothers’ reasons or motivations for allowing their children to participate in research, (b) mothers’ reasons for refusing consent for their children to participate, and (c) strategies for increasing research participation among this population. Based on these findings, we offer recommendations for enhancing research participation among IPV-exposed children from CPS- and/or court-involved families mandated to services, including specific recruitment and data collection strategies. These recommendations and strategies also hold value for research with other vulnerable families and children struggling with violence.

A Comprehensive Literature Review of Randomized Controlled Trials for Parents of Young Children with Autism Spectrum Disorder

Parents raising young children with autism spectrum disorder are particularly vulnerable to stress and poor coping mechanisms. The current article describes a comprehensive review of randomized controlled trials which included parents of preschool-age children with autism spectrum disorder. Seven interventions met the review criteria. The studies were strengthened by the use of fidelity measures and developmentally appropriate interventions. However, while all of the studies collected parent measures, none reported significant post-test improvements in parent mental health or other outcomes. Furthermore, numerous issues, such as unclear randomization strategies, small sample sizes, and poor external validity, further limited the ability to draw significant conclusions regarding the promise of the interventions. More research is needed to develop and rigorously test family-centered interventions aimed at improving both child and parent outcomes.

“I never knew which way he would swing…:” Exploring the Roles of Substances in the Lives of System-Involved Intimate Partner Violence Survivors

This article reports findings of a mixed-methods study exploring the role that substances play in the lives of service-mandated female survivors of intimate partner violence (IPV). The study sample consists of 22 women who had completed a court- and/or child protective services (CPS)-mandated IPV parenting program. Quantitative results reveal moderate levels of current substance use and higher levels of past substance use. Qualitative analyses yield three key areas of participants’ perspectives of substances and violence: (a) role of participants’ substance use, including coping and partner influence; (b) role of partner’s substance use, including severity and substance preferences; and (c) relationship between substance use and IPV, including effects on safety and IPV frequency and severity. We find victimization is a function of a partner’s—rather than a victim’s—substance use. Future programming should focus on the overlapping risk factors between substance use and IPV.