Children with disabilities: a longitudinal study of child development and parent well-being.

This Monograph presents the results of the Early Intervention Collaborative Study, a longitudinal investigation of the cognitive and adaptive behavior development of children with developmental disabilities and the adaptation of their parents, extending from infancy through middle childhood. The study was designed to generate and test conceptual models of child and family development and contribute to the knowledge base that informs social policy and practice. The sample for the investigation reported here consists of 183 children with Down syndrome, motor impairment, developmental delay and their families who were recruited at the time of their enrollment in an early intervention program in Massachusetts or New Hampshire. Data were collected at five time points between entry to early intervention and the child's 10th birthday. Home visits were conducted at each time point and included child assessments, maternal interview, and questionnaires completed independently by both parents. Trajectories in children's development and parental well-being were analyzed using hierarchical linear modeling. Predictor variables were measured at age 3 years when children were exiting early intervention programs. Children's type of disability predicted trajectories of development in cognition, social skills, and daily living skills. Children's type of disability also predicted changes in maternal (but not paternal) child-related and parent-related stress. Beyond type of disability, child self-regulatory processes (notably behavior problems and mastery motivation) and one aspect of the family climate (notably mother-child interaction) were key predictors of change in both child outcomes and parent well-being. A different aspect of the family climate--family relations--also predicted change in child social skills. Parent assets, measured as social support and problem-focused coping, predicted change in maternal and paternal parent-related stress respectively. The implications of these findings for both the science of child development and the policies and practices of developmental intervention are discussed.

Family influences on adaptive development in young children with Down syndrome.

In this study we investigated the extent to which the family environment predicted differences in trajectories of adaptive development in young children with Down syndrome. The sample was comprised of 54 children with Down syndrome and their families who were studied from infancy through the age of 5 years as part of a longitudinal study of children with disabilities. Hierarchical linear modeling (HLM) was used to estimate the parameters of hierarchical growth models in domains of adaptive development. Results indicated that growth in communication, daily living skills, and socialization domains were predicted by measures of the family environment (i.e., family cohesion and mother-child interaction) above and beyond that predicted by maternal education. Further, Bayley MDI measures during infancy did not predict changes in adaptive development in any of the domains. The results are discussed in terms of implications for service provision and for expanding theoretical frameworks to include the development of children with disabilities.

Adaptation during early childhood among mothers of children with disabilities.

This study documents the extent to which child-related and parenting stress vary during the early childhood period among mothers of children with developmental disabilities. The degree to which specific aspects of the family environment predict stress levels measured at age 3 years and 5 years, after controlling for child characteristics and family income, is also investigated. The Parenting Stress Index was completed by 79 mothers of children with developmental disabilities at three time points: (1) within 1 month of the child's entry into an early intervention program (T1); (2) within 1 month of the child's third birthday (T3); and (3) within 1 month of the child's fifth birthday (T5). Data on child characteristics and family income as well as measures of the family environment (i.e., negative life events, cohesion, and family support) were gathered at both T1 and T3. Repeated measures analysis of variance was used to assess whether there was significant change in the child-related and parenting stress scores across the three time points. Two sets of hierarchical regression equations were also analyzed. The first examined which child, family, and family environment characteristics assessed at T1 predicted stress at T3. The second identified the predictors of T5 stress based on independent variables measured at T3. Child-related stress increased significantly across the three time points, whereas parenting stress remained fairly stable. By age 5 years, one-third of the mothers had child-related stress scores above the clinical cutoff point. Regression analyses revealed the importance of the family environment in predicting both stress outcomes. The only statistically significant predictor of child-related stress at T3 was family cohesion, whereas parenting stress at T3 was predicted by income, cohesion, and family support. The predictors of both child-related and parenting stress at T5 were the same. Greater family cohesion and fewer negative life events predicted lower stress scores at T5. The significant increase in child-related stress during the early childhood period warrants attention by pediatricians, educators, and other professionals who must evaluate the needs of families of children with disabilities for supportive services. Aspects of the family environment were shown to be critical and consistent determinants of both child-related and parenting stress throughout the early childhood period. This finding suggests that pediatricians, in particular, must assess more than simply the diagnosis or the cognitive impairment of the child with a disability to make informed decisions about the frequency with which they should see particular families and whether referral to other services is necessary.

Development of infants with disabilities and their families: implications for theory and service delivery.

This Monograph presents the results of a nonexperimental, longitudinal investigation of developmental change in 190 infants and their families after 1 year of early intervention services. The Early Intervention Collaborative Study (EICS), conducted in association with 29 community-based programs in Massachusetts and New Hampshire, was designed to assess correlates of adaptation in young children with disabilities and their families over time, to inform social policy by analyzing the influences of family ecology and formal services on child and family outcomes, and to generate conceptual models to guide further investigation. The study sample (mean age at entry = 10.6 months) includes 54 children with Down syndrome, 77 with motor impairment, and 59 with developmental delays of uncertain etiology. Data were collected during two home visits (within 6 weeks of program entry and 12 months later) and included formal child assessments, observations of mother-child interaction, maternal interviews, and questionnaires completed independently by both parents as well as monthly service data collected from service providers. Child and family functioning varied considerably. Developmental change in the children (psychomotor abilities, adaptive behavior, spontaneous play, and child-mother interaction skills) was influenced to some extent by gestational age and health characteristics, but the strongest predictor of change was the relative severity of the child's psychomotor impairment at study entry. Families demonstrated generally positive and stable adaptation (in terms of the effect of rearing a child with disabilities on the family, parenting stress, and social support), despite persistent challenges with respect to mother-child interaction and differences in reported stress between mothers and fathers. Documentation of services revealed that early intervention is a complex and multidimensional experience that spans multiple public and private systems. Vulnerable and resilient subgroups within the sample were identified, and different correlates of adaptive change were demonstrated. Results of data analyses suggest new perspectives on the study of early childhood disability. The implications of the findings for developmental theory and social policy are discussed.

Caretaking burden and social support: comparison of mothers of infants with and without disabilities.

Data concerning mothers' perceptions of child caretaking burden, fathers' participation in child caretaking, and satisfaction with social support were analyzed for a 202 member sample consisting of mothers of infants with Down syndrome, motor impairment, developmental delay, and no known disabilities. The results were contrary to some common findings from the literature. Significant differences among the four groups were found on difficulty of and time devoted to caretaking, number of tasks with which fathers helped, and satisfaction with support from family, friends, and community groups. The programmatic and policy implications of these findings were discussed.