Between 'desperation' and disability rights: a narrative analysis of complementary/alternative medicine use by parents for children with Down syndrome.

This paper presents a narrative analysis of complementary/alternative medicine (CAM) use by parents for children with Down syndrome (DS), based on interviews conducted with thirty families. Critics often presume that CAM use for children with developmental disabilities reflects parental desperation in the face of limited biomedical options. Integrating insights from anthropological studies of CAM with narrative analyses in disability studies, we constructively complicate this interpretation in two ways. First, we suggest that the appeal of CAM may lie in its discursive consonance with the broader narrative strategies through which parents construct alternatives to conventional definitions of DS as a condition with a fixed, universal, and essentially pathological course. Second, we submit that the process of seeking and evaluating information about CAM is consonant with how parents construct their identities as 'good' parents through describing their roles as committed advocates and service coordinators for their children. In these ways, CAM can be conceptualized as a new discursive resource that parents engage in their culturally and historically specific efforts to articulate the essential human rights of their children, and to assert the moral soundness of their own parenthood. These findings provide a new conceptualization of parents' motives for choosing CAM, thereby posing new questions for further research about CAM use for developmental disabilities.

Health-related quality of life as a predictor of pediatric healthcare costs: a two-year prospective cohort analysis.

BACKGROUND: The objective of this study was to test the primary hypothesis that parent proxy-report of pediatric health-related quality of life (HRQL) would prospectively predict pediatric healthcare costs over a two-year period. The exploratory hypothesis tested anticipated that a relatively small group of children would account for a disproportionately large percent of healthcare costs. METHODS: 317 children (157 girls) ages 2 to 18 years, members of a managed care health plan with prospective payment participated in a two-year prospective longitudinal study. At Time 1, parents reported child HRQL using the Pediatric Quality of Life Inventory (PedsQL 4.0) Generic Core Scales, and chronic health condition status. Costs, based on health plan utilization claims and encounters, were derived for 6, 12, and 24 months. RESULTS: In multiple linear regression equations, Time 1 parent proxy-reported HRQL prospectively accounted for significant variance in healthcare costs at 6, 12, and 24 months. Adjusted regression models that included both HRQL scores and chronic health condition status accounted for 10.1%, 14.4%, and 21.2% of the variance in healthcare costs at 6, 12, and 24 months. Parent proxy-reported HRQL and chronic health condition status together defined a 'high risk' group, constituting 8.7% of the sample and accounting for 37.4%, 59.2%, and 62% of healthcare costs at 6, 12, and 24 months. The high risk group's per member per month healthcare costs were, on average, 12 times that of other enrollees' at 24 months. CONCLUSIONS: While these findings should be further tested in a larger sample, our data suggest that parent proxy-reported HRQL can be used to prospectively predict healthcare costs. When combined with chronic health condition status, parent proxy-reported HRQL can identify an at risk group of children as candidates for proactive care coordination.

Communicating with pediatricians about complementary/alternative medicine: perspectives from parents of children with down syndrome.

OBJECTIVES: Barriers to communication about complementary/alternative medicine (CAM) between parents and pediatricians are frequently documented, yet the scope of these barriers remains poorly understood. Such barriers are especially troubling when they involve children with special health needs, among whom CAM use is especially common. This pilot study of parents of children with Down syndrome (DS) used qualitative methods to explore parents' perceptions of the extent and quality of communication about CAM with pediatricians, to elicit parents' recommendations for improvement, and to formulate new research questions. DESIGN: Semistructured interviews were conducted with parents from 30 families with children with DS. Data were audiotaped and analyzed with assistance from qualitative data analysis software. RESULTS: Parents described how they advocated vigorously with their pediatricians about biomedical concerns such as the American Academy of Pediatrics healthcare guidelines for DS, but often avoided discussion of nonbiomedical concerns such as CAM. Many parents looked to pediatricians to initiate conversations about CAM. DISCUSSION: Even parents who assertively advocate for biomedical concerns in their children's health care may be unlikely to disclose and discuss CAM use with their pediatricians. Attending to parents' experiences helps to illuminate the nature and scope of current communication barriers and poses new research questions for assessing and improving parent-physician collaboration about health-related issues that may be prioritized differently by parents and pediatricians.

A quality improvement project to increase breast milk use in very low birth weight infants.

OBJECTIVE: To evaluate a multihospital collaborative designed to increase breast milk feeding in premature infants. METHODS: Eleven NICUs in the California Perinatal Quality of Care Collaborative participated in an Institute for Healthcare Improvement-style collaborative to increase NICU breast milk feeding rates. Multiple interventions were recommended with participating sites implementing a self-selected combination of these interventions. Breast milk feeding rates were compared between baseline (October 2008-September 2009), implementation (October 2009-September 2010), and sustainability periods (October 2010-March 2011). Secondary outcome measures included necrotizing enterocolitis (NEC) rates and lengths of stay. California Perinatal Quality of Care Collaborative hospitals not participating in the project served as a control population. RESULTS: The breast milk feeding rate in the intervention sites improved from baseline (54.6%) to intervention period (61.7%; P = .005) with sustained improvement over 6 months postintervention (64.0%; P = .003). NEC rates decreased from baseline (7.0%) to intervention period (4.3%; P = .022) to sustainability period (2.4%; P < .0001). Length of stay increased during the intervention but returned to baseline levels in the sustainability period. Control hospitals had higher rates of breast milk feeding at baseline (64.2% control vs 54.6% participants, P < .0001), but over the course of the implementation (65.7% vs 61.7%, P = .049) and sustainability periods (67.7% vs 64.0%, P = .199), participants improved to similar rates as the control group. CONCLUSIONS: Implementation of a breast milk/nutrition change package by an 11-site collaborative resulted in an increase in breast milk feeding and decrease in NEC that was sustained over an 18-month period.

A rapid interview protocol supporting patient-centered quality improvement: hearing the parent's voice in a pediatric cancer unit.

BACKGROUND: The Institute of Medicine's 2001 report on quality delimits six dimensions of optimal care: safety, effectiveness, efficiency, timeliness, patient centeredness, and equity. In fall 2001 parents of pediatric cancer patients were interviewed to determine how well they thought these dimensions were addressed with respect to medication administration. Immediate goals were to identify system weaknesses and devise strategies to prevent future errors. A higher-order goal was to develop and demonstrate a model protocol for rapid-cycle interview assessments. METHODS: Hematology/oncology directors worked with a research expert to develop a semistructured interview protocol. After training, which included directed reading, oral instruction, and role-playing, a convenience sample of 20 English- and Spanish-speaking parents of inpatients was recruited. Parents were asked to characterize current medication administration practices and to describe problems that they had experienced or witnessed. Rapid content analysis techniques were used to identify issues of importance to the parents. FINDINGS: Parents' medication concerns centered on their children's comfort. Parents called for communication improvements, standardization of all nursing procedures and techniques, and a guide or an outline providing a clear understanding of what to expect when and from whom. Viewing these concerns in relation to the Institute of Medicine's quality domains allowed the department to frame an improvement action plan aligned with organizational and national priorities. IMPLICATIONS: With good supervision and limited focused training, inexperienced staff can successfully administer semistructured qualitative interviews and help analyze findings for rapid cycle improvement purposes. The protocol can be adapted for use in organizations interested in rapid qualitative assessments of patient and parent preferences.