J. Carolyn Graff

The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping.

Background: As the number of children diagnosed with autism continues to rise, resources must be available to support parents of children with autism and their families. Parents need help as they assess their unique situations, reach out for help in their communities, and work to decrease their stress levels by using appropriate coping strategies that will benefit their entire family. Methods: A descriptive, correlational, cross-sectional study was conducted with 75 parents/primary caregivers of children with autism. Using the McCubbin and Patterson model of family behavior, adaptive behaviors of children with autism, family support networks, parenting stress, and parent coping were measured. Findings and Conclusions: An association between low adaptive functioning in children with autism and increased parenting stress creates a need for additional family support as parents search for different coping strategies to assist the family with ongoing and new challenges. Professionals should have up-to-date knowledge of the supports available to families and refer families to appropriate resources to avoid overwhelming them with unnecessary and inappropriate referrals.

Interrelationships among Variables Affecting Well Siblings and Mothers in Families of Children with a Chronic Illness or Disability

A structural equation model (SEM) examined interrelationships among psychosocial variables known to affect the health and development of well siblings and parents when a child with a chronic illness or disability is a member of the family. Using dyads of 252 well children and parents, socioeconomic status (SES) and family cohesion were associated with the parent-reported behavior of the well sibling. SES also influenced the mood of the mother that in turn influenced family cohesion. The well siblings knowledge about the illness of the brother or sister, attitude toward the illness, mood, self-esteem, and feelings of social support were interrelated and related to the behavior of the well sibling. The SEM suggests that interventions may be directed at several points in these interactions including boosting knowledge levels of the well sibling, improving family cohesion, and assuring adequate “income” support to the family through income transfers or in-kind services.

A community-based intervention for siblings and parents of children with chronic illness or disability: the ISEE study.

OBJECTIVE Siblings of children with chronic illness or disability have been reported to have a 1.6 to 2.0 risk for behavioral and mental health problems. Our objective was to examine the effects of an intervention for siblings (age 7-15 years) of children with chronic illness or disability. METHOD A randomized, three-group repeated-measures design was used: full intervention (n=79), partial intervention (n=71), and a waiting list control group (n=102). Outcomes were sibling knowledge about illness, behavior problems, social support, self-esteem, attitude, and mood measured over four postintervention periods. Covariates were family cohesion, maternal mood, socioeconomic status, and well sibling age. The full intervention included structured teaching and psychosocial sessions at a 5-day residential summer camp. The partial intervention included camp only. Treatment effects were estimated by using generalized estimating equation panel analyses. RESULTS The full treatment group showed significant improvements on all six outcomes over most periods, the partial treatment group on three outcomes, and the control group on two outcomes. Improvements in outcomes ranged from 5% to 25% increases over baseline measures. CONCLUSIONS A dose-response relationship to intervention was found. Treatment gains were sustained over a period of 12 months.

Maladaptive Behaviors of Children with Autism: Parent Support, Stress, and Coping

Background: The estimated prevalence of Autism Spectrum Disorder (ASD) is one in 88. Autism Spectrum Disorders are nearly five times more common among boys than girls. Children with autism may develop a variety of socially unacceptable maladaptive behaviors beyond the defining symptoms of the spectrum disorder. Aims: It is necessary to conduct research to examine maladaptive behaviors of children with autism, family supports, parental stress, and parental coping. Methods: Data used were collected during an earlier descriptive, correlational, cross-sectional study. Using the Double ABCX Model of family behavior as the framework, this study evaluated parents’ views of the adaptive behaviors of their children diagnosed with autism using the networks of support for their family, parental stress, and parental coping patterns. Results: Results indicate an association between increased Internalizing maladaptive behaviors and increased parental stress (r = .547, p = .000). Conclusions: The findings of this study suggest that parents of children with autism report that their children have clinically significant maladaptive behaviors. Healthcare providers could use results from this study to provide appropriate intervention for maladaptive behaviors to support children with autism and their families.

PARENTAL STRESS IN FAMILIES OF CHILDREN WITH A GENETIC DISORDER/DISABILITY AND THE RESILIENCY MODEL OF FAMILY STRESS, ADJUSTMENT, AND ADAPTATION

Background: Research suggests that parents of children with disabilities endure increased amounts of stress but also experience positive outcomes. Purpose: To further investigate findings from focus group interviews that explored parental stress in families of children with disabilities using a sequential mixed methods design. Method: This study sought to model parental stress using the McCubbin and McCubbin (1993) Resiliency Model of Stress, Adjustment, and Adaptation using qualitative and quantitative data collected sequentially. Twenty-five parents of children with autism spectrum disorder, cerebral palsy, Down syndrome, and sickle cell disease participated in a 2-step study that encompassed qualitative followed by quantitative data ascertainment. Results: Parents who quantitatively experienced high stress or low stress used different behavioral themes to describe their experience qualitatively. Positive appraisals, resources, and ability to engage in problem solving and coping were associated with family resiliency.

Family Decision Making: Benefits to Persons With Developmental Disabilities and Their Family Members

Family involvement in planning and choosing services has become a key intervention concept in developmental disability services. This study (N = 547) modeled patterns of family decision making and assessed benefits to persons with developmental disabilities (DDs) and their family members. A latent profile analysis identified 4 classes that were highly involved in decision making (n = 118), involved only in planning (n = 166), involved only in financial decisions (n = 75), and uninvolved (n = 188). Multiple regression analysis indicated that consumers with DD whose family members were highly involved received more services than consumers in other families. A multivariate analysis of covariance indicated that the family members in the highly involved and planning classes experienced more family member satisfaction than others. Findings have implications for practice.

Communication Themes in Families of Children with Chronic Conditions

This qualitative study identified communication themes among well siblings, parents, and others within families of children with chronic conditions. Semi-structured interviews of 30 parent–well sibling dyads were content analyzed from a larger study of families of children with chronic conditions. Four themes emerged: communication as a reflection of family roles and relationships, giving voice, staying connected, and struggling for normalcy.

Exploring parent-sibling communication in families of children with sickle cell disease.

Background: Communication within families of children with sickle cell disease is important yet has not been adequately investigated. Methods: Focus group interviews were conducted with parents of children with sickle cell disease to explore parent-sibling communication about sickle cell disease. Results: Communication was influenced by attributes and behaviors of the parent, the child with sickle cell disease, and the sibling; extended family, neighbors, friends, and church members or social networks; and available, accessible resources related to the childs health, childs school, and parent employment. Outcomes that influenced and were influenced by factors within and outside the parent-sibling dyad and nuclear family included parent satisfaction, parent roles, family intactness, and status attainment. Conclusions: These findings support previous research with African-American families and expand our views of the importance of educating parents, family members, and others about sickle cell disease. The findings suggest a need to explore sibling perception of this communication, parent and sibling perception of the impact of frequent hospitalizations and clinic visits on the sibling and family, and variations within families of children with sickle cell disease.

Formative and summative evaluation of a practice doctorate program.

Practice doctorate programs are developing rapidly to meet the American Association of Colleges of Nursing recommendation that advanced practice nurses will be prepared with a Doctor of Nursing Practice by 2015. Evaluation of nursing doctoral programs has focused almost exclusively on research doctorate programs. The authors examine formative evaluations from students enrolled in a practice doctorate program and summative evaluations provided by students at the time of and 1 year following graduation. Suggestions for nurse educators and administrators are presented.

Measuring Health-Related Quality of Life of Adults With Down Syndrome

This study examined self- and caregiver-reported health-related quality of life (HRQOL) of 60 adults with Down syndrome (DS) using the QualityMetric Short Form-12 version 2 (SF-12v2). All HRQOL scores exceeded means and fell within one standard deviation of the SF-12v2 normative sample. Similarities between eight self- and caregiver-reported HRQOL scales were found with the exception of role physical scores (impact of health problems on typical accomplishments), which were lower when obtained by caregiver-report. A positive association was found between self- and caregiver-reported physical functioning scores (impact of health problems on physical activity). The SF-12v2 had high construct validity in this study. These findings support the feasibility of measuring HRQOL of adults with DS using self-report rather than reliance on caregiver-report.