Adolescent/Young Adult Self-Management and Independence Self-Report Scale: Preliminary psychometric findings.

PURPOSE: This study examined preliminary psychometrics of the Adolescent/Young Adult Self-Management and Independence Self-Report Scale (AMIS II SR). METHODS: Adolescents and adults (N = 159; 13-38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one-third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. RESULTS: Item-to-total correlations support the AMIS II SR total scale (r = .38-.79) and its two subscales: condition (r = .49-.67) and independent living (r = .49-.85). Internal consistency reliability was high (α = .91-.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self-management as first-order factors and a second-order overall self-management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. CONCLUSIONS: This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self-management and independence.

Trends in the early care of infants with myelomeningocele in the United States 2012-2018.

PURPOSE: The early care of children with spina bifida has changed with the increasing availability of fetal surgery and evidence that fetal repair improves the long-term outcomes of children with myelomeningocele. We sought to determine current trends in the prevalence and early care of children with myelomeningocele using a national administrative database. METHODS: This is a retrospective, cross-sectional cohort study of infants with spina bifida admitted within the first 28 days of life using the 2012-2018 Healthcare Cost and Utilization Project National Inpatient Database. Patients with spina bifida were identified by ICD code and stratified into a cohort with a coded neonatal repair of the defect and those without a coded repair. This database had no identifier specific for fetal surgery, but it is likely that a substantial number of infants without a coded repair had fetal surgery. RESULTS: We identified 5,090 patients with a coded repair and 5,715 without a coded repair. The overall prevalence of spina bifida was 3.94 per 10,000 live births. The percentage of patients without neonatal repair increased during the study period compared to those with repair (p = 0.0002). The cohort without neonatal repair had a higher risk of death (p < 0.001), prematurity (p < 0.001), and low birth weight (p < 0.001). More shunts were placed in patients who underwent neonatal repair (p < 0.001). Patients without neonatal repair were less likely to have public insurance (p = 0.0052) and more likely to reside in zip codes within the highest income quartile (p = 0.0002). CONCLUSIONS: The prevalence of spina bifida from 2012 to 2018 was 3.94 per 10,000 live births, with an increasing number of patients without neonatal repair of the defect, suggesting increased utilization of fetal surgery. Patients without neonatal repair had a higher risk of death, prematurity, and low birth weight but were more likely to have commercial insurance and reside in high-income zip codes.

Intercountry adoption of children with complex health conditions and disabilities: A systematic review.

PURPOSE: The rate of children with complex health conditions or disabilities who are intercountry adopted (ICA) is increasing. These children have unique physical, developmental, and psychological needs that must be addressed as they integrate into adoptive families. The purpose of this systematic review is to identify considerations nurses must recognize when caring for children with complex health conditions or disabilities who are ICA and their families. DESIGN AND METHODS: A systematic literature review in accordance with the PRISMA guidelines was conducted. Four databases (PubMed, PsycINFO, Web of Science, and ERIC) located 365 articles about intercountry adoption and complex health conditions or disability. Articles that were non-English language, focused on attachment disorder or infectious disease, book chapters, dissertations, or case studies were excluded. Sixteen articles met inclusion criteria and informed this review. RESULTS: The systematic review identified eight themes: primary care resources, interdisciplinary care teams, cost, developmental difficulties, nutritional challenges, mental health issues, parental need for knowledge, and parental need for support. These themes correspond to nursing assessments that should be conducted during clinic visits for children with complex health conditions or disabilities who are ICA. PRACTICE IMPLICATIONS: This systematic review demonstrates that a multidisciplinary approach is necessary to address the needs of the child diagnosed with a complex health condition or disability and their family in the context of intercountry adoption. Children with a complex health condition or disability who are ICA have unique needs and require individualized care planning to maximize growth and developmental potential. Adoption is a life-long process and adjustment is complicated by the medical needs that children with complex health conditions or disabilities experience. Parents will benefit from additional support and education as they integrate a new family member while also learning about the medical care needs of a child with a complex health condition or disability.