Abstract
Aim: To assess changes over time in parents' expectations of adult milestone achievement (college attendance, full-time job attainment, independent living, marriage, parenthood) for young people with spina bifida, to examine how expectancies relate to actual milestone achievement, and to compare milestone achievement in emerging adults with spina bifida with that of peers with typical development. Method: Sixty-eight families of children with spina bifida (mean age 8y 4mo, 37 males, 31 females) and 68 families of children with typical development (mean age 8y 6mo, 37 males, 31 females) participated at Time 1. At all subsequent timepoints, parents of young people with spina bifida were asked to rate their expectations of emerging adulthood milestone achievement. At Time 7, when participants were 22 to 23 years old, milestone achievement was assessed. Results: Parents of young people with spina bifida lowered their expectations over time for most milestones; parents of children with higher cognitive ability reported decreases of lower magnitude. Parent expectancies were optimistic and unrelated to actual milestone achievement. Emerging adults with spina bifida were less likely than individuals with typical development to achieve all milestones. Interpretation: Optimistic parental expectations may be adaptive for children with spina bifida and their families, although it is important for families to set realistic goals. Healthcare providers serve a key role in helping families of young people with spina bifida prepare for emerging adulthood.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 311-316 |
| Number of pages | 6 |
| Journal | Developmental Medicine and Child Neurology |
| Volume | 59 |
| Issue number | 3 |
| DOIs | |
| State | Published - Mar 1 2017 |
Funding
Completion of this manuscript was supported in part by research grants from The National Institute of Child Health and Human Development (RO1 HD048629) and the March of Dimes Birth Defects Foundation (12-FY04–0047). Funding was utilized to support study design, data collection, data analysis, and manuscript preparation. The authors thank the undergraduate and graduate research assistants for collecting, coding, and entering data related to this project. We are also very appreciative of the parents, children, and teachers who have consented to participate in this research. The authors have stated that they had no interests which might be perceived as posing a conflict or bias.
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Developmental Neuroscience
- Clinical Neurology