Although previous findings have shown that parents react intensely to the initial diagnosis of their child's disability, studies focused on long-term outcomes and adjustment are needed. We interviewed 21 mothers whose adolescent or young adult was diagnosed with Down syndrome or fragile X syndrome. Qualitative analysis of data focused on the diagnostic process and the child's development revealed emergent themes: importance of context, variations in emotional reactions to the diagnosis, use of specific coping strategies, and changes in family adaptation over time. Results indicate most families experienced elements of disruption and resilience in their reactions to the diagnosis, although different patterns emerged for each syndrome group. Maternal descriptions highlighted positive attributes that contributed to family well-being and behavioral challenges that were a source of family stress.
PurposePeople with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID.ParticipantsThe cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12–43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29–73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services.Findings to dateThis study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population.Future plansWithin the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders.
In this longitudinal study, the authors investigated individual differences in how families adapt to a child's congenital disorder. Family impact, maternal grief resolution, and child attachment were assessed among 74 mothers and their toddlers with a neurological disorder or disfigurement. Fifty dyads were reevaluated 16 months later. For children with neurological compared with disfigurement diagnoses, there was a greater likelihood of negative impact on family, unresolved maternal grief, and insecure attachment at Time 1. Children classified as secure were significantly more likely to have mothers classified as resolved regarding their reactions to their children's diagnosis. Maternal grief resolution was significantly stable (77%) over time and mediated the relation between type of diagnosis and child security. With time, negative impact of child condition on the family decreased and percentage of children classified as secure increased, suggesting that on average families improved. Results suggest that helping parents come to terms emotionally and cognitively with their child's condition may be a useful focus for intervention.
This study investigated the contributions of curriculum approach and parent involvement to the short- and long-term effects of preschool participation in the Title I Chicago Child-Parent Centers. Data came from the complete cohort of 989 low-income children (93% African American) in the Chicago Longitudinal Study, who attended preschool in the 20 Child-Parent Centers in 1983-1985 and kindergarten in 1985-1986. We found that implementation of an instructional approach rated high by Head Teachers in teacher-directed and child-initiated activities was most consistently associated with children’s outcomes, including school readiness at kindergarten entry, reading achievement in third and eighth grades, and avoidance of grade retention. Parent involvement in school activities, as rated by teachers and by parents, was independently associated with child outcomes from school readiness at kindergarten entry to eighth grade reading achievement and grade retention above and beyond the influence of curriculum approach. Findings indicate that instructional approaches that blend a teacher-directed focus with child-initiated activities and parental school involvement are origins of the long-term effects of participation in the Child-Parent Centers.
WHAT'S KNOWN ON THIS SUBJECT:For mothers of children with chronic medical conditions or disabilities, such as epilepsy or cerebral palsy, a history of maternal unresolved grief regarding the child's diagnosis has been associated with insecure infantmother attachment. WHAT THIS STUDY ADDS:Unresolved grief related to a preterm birth is associated with the development of insecure infantmother attachment. Mothers with resolved grief after preterm birth are 2.9 times as likely to have securely attached infants, compared with mothers with unresolved grief. abstract OBJECTIVE: This study explored the association between mothers' unresolved grief regarding their infant's preterm birth and infant-mother attachment security. We hypothesized that mothers with unresolved grief would be more likely to have insecurely attached infants at 16 months and that this association would be partially mediated by maternal interaction quality. METHODS:This longitudinal study focused on 74 preterm infants (age of Ͻ36 weeks) and their mothers who were part of a larger study of high-risk infants. The present analysis included assessment of neonatal and socioeconomic risks at NICU discharge; maternal depression, Reaction to Preterm Birth Interview findings, and quality of parenting at a postterm age of 9 months; and infant-mother attachment at postterm age of 16 months. Associations among findings of grief resolution with the Reaction to Preterm Birth Interview, quality of parenting interactions, and attachment security were explored by using relative risk ratios and logistic and multivariate regression models. RESULTS:The relative risk of developing insecure attachment when mothers had unresolved grief was 1.59 (95% confidence interval: 1.03-2.44). Controlling for covariates (adjusted odds ratio: 2.94), maternal feelings of resolved grief regarding the preterm birth experience were associated with secure infant-mother attachment at 16 months. Maternal grief resolution and interaction quality were independent predictors of attachment security. CONCLUSION:Maternal grief resolution regarding the experience of preterm birth and the quality of maternal interactions have important implications for emerging attachment security for infants born prematurely.
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