Karen Kuhlthau

Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

A Review of the Evidence for the Medical Home for Children With Special Health Care Needs

from stool and bronchoalveolar lavage fluid in intubated infants, and every infant who developed IC was identified and IC-related mortality was eliminated.5 All neonates with IC had a BW of 1000 g, and 15 (94%) of 16 had a gestational age of 27 weeks. Therefore, from our data, neonates with a gestational age of 27 weeks and BW of 1000 g represent the “preterm subpopulation” that would benefit most from FP. A more-precise identification of the higher-risk neonates in the NICU would be a prelude to the elaboration of more-effective prophylactic measures and should delay or prevent the emergence of resistance. Indeed, the critical question will be to find the corrected age when the immune system can face up to Candida spp to develop effective preventive strategies. Our data provide evidence that the age is somewhere around 27 weeks.

Employment, child care, and mental health of mothers caring for children assisted by technology.

Objective. This study examines 1) the way that children with chronic conditions are cared for at home and assisted by technology affects maternal employment and child care; 2) the social and clinical factors associated with the decision of a mother to quit employment to care for a child at home; and 3) the way in which care at home and the decision of a mother to quit a job affects maternal mental health. Design. The 6-month postdischarge status of 70 mothers of children assisted by technology (study group) was compared with the 6-month postdischarge status of 58 mothers of children (matched for age and gender) hospitalized for acute illnesses (comparison group). Between January and December 1993, we gathered information on sociodemographic status, employment status and changes in employment, severity of the childs condition, child care and nursing services at home, family support, and maternal mental health. Results. One third of mothers in the study group reported that they quit employment to take care of a child at home with only 37.1% remaining employed outside the home, compared with 69.0% of comparison group mothers. Single caretakers were 15 times more likely to quit employment compared with mothers in two-parent families. Availability of child care had an independent effect on a mothers decision to quit a job, whereas the severity of the childs condition did not. Child care hours were significantly lower in study group families and were provided mostly by relatives compared with day-care facilities and regular babysitters in comparison families. Family support was highest among employed mothers in both the study and the comparison groups and lowest in study group mothers who were neither employed currently nor before the childs illness or who had quit employment to care for the child. Family income was significantly lower in families with a child assisted by technology. Families in the study group had 20-fold higher uncompensated health care costs than did the comparison group. Mothers caring for a child assisted by technology reported less good mental health than did comparison group mothers, and employment seems to mediate this relationship. Conclusions. Caring for a child assisted by technology seems to create barriers to maternal employment diminishing family resources at a time when financial needs actually may increase. Lack of family support and child care services increase the likelihood that mothers of children assisted by technology will stay out of the labor force. Remaining employed buffers the negative effects of care at home on maternal mental health. Health policies for children with chronic health problems should address issues of financial burdens and the labor force participation of their caretakers. chronic illness, home care, technology assisted, family support, employment, quality of life, child care.

Improved Outcomes Associated With Medical Home Implementation in Pediatric Primary Care

OBJECTIVE: The medical home model with its emphasis on planned care, care coordination, family-centered approaches, and quality provides an attractive concept construct for primary care redesign. Studies of medical home components have shown increased quality and reduced costs, but the medical home model as a whole has not been studied systematically. This study tested the hypothesis that increased medical homeness in primary care practice is associated with decreased utilization of health services and increased patient satisfaction. METHODS: Forty-three primary care practices were identified through 7 health plans in 5 states. Using the Medical Home Index (MHI), each practices implementation of medical home concepts “medical homeness” was measured. Health plans provided the previous years utilization data for children with 6 chronic conditions. The plans identified 42 children in each practice with these chronic conditions and surveyed their families regarding satisfaction with care and burden of illness. RESULTS: Higher MHI scores and higher subdomain scores for organizational capacity, care coordination, and chronic-condition management were associated with significantly fewer hospitalizations. Higher chronic-condition management scores were associated with lower emergency department use. Family survey data yielded no recognizable trends with respect to the medical home measurement. CONCLUSIONS: Developing an evidence base for the value of the primary care medical home has importance for providers, payers, policy makers, and consumers. Reducing hospitalizations through enhanced primary care provides a potential case for new reimbursement strategies supporting medical home services such as care coordination. Larger-scale studies are needed to further develop/examine these relationships.

Financial Burden for Families of Children with Special Health Care Needs

Objectives: We describe family finance-related burden experienced by families with children with special health care needs (CSHCN). The paper further seeks to describe correlates of family financial burden. Methods: We examined correlates of family finance-related burden using multivariate methods and the National Survey of CSHCN, a nationally representative cross-sectional survey of CSHCN. We also examined state-level correlations. Results: Fully 40% of families with CSHCN, or 3,746,000 families nation-wide, experience financial burden related to their child’s condition. Experiencing a finance-related problem is negatively associated with Maternal and Child Health Bureau (MCHB) indicators and positively associated with poor-child health status. States that better meet MCHB indicators generally have lower levels of family finance-related problems. Conclusions: Families with CSHCN have high levels of finance-related family problems. Development of appropriate systems of care appears to offer a mechanism for alleviating the financial burdens of these families.

Economic Burden of Childhood Autism Spectrum Disorders

OBJECTIVE: To estimate the associations between autism spectrum disorder (ASD) diagnoses and service use, caregiver time, and cost outcomes. METHODS: We used national data from the Medical Expenditure Panel Survey linked to the National Health Interview Survey and a study-specific survey to estimate the annual utilization and costs for health care, school, ASD-related therapy, family-coordinated services, as well as caregiver time in children aged 3 to 17 years, with and without parent-reported ASD. Regression analyses estimated the association between ASD diagnosis and cost, controlling for child gender, age, race/ethnicity, insurance status, household income, country region and urban/rural classification, and non–ASD-related illnesses. RESULTS: Children with parent-reported ASD had higher levels of health care office visits and prescription drug use compared with children without ASD (P < .05). A greater proportion of children in the ASD group used special educational services (76% vs 7% in the control group, P < .05). After adjusting for child demographic characteristics and non–ASD-associated illnesses, ASD was associated with

Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network

3020 (95% confidence interval [CI]:

The perceived impact of child care costs on women’s labor supply and fertility

1017–

Prospective Study of Health-Related Quality of Life for Children With Brain Tumors Treated With Proton Radiotherapy

4259) higher health care costs and

Obesity and the Built Environment Among Massachusetts Children

14 061 (95% CI: