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

Gender differences in health and medical care: Thailand.

This dissertation examines the determinants of the gender difference in reported morbidity and the use of medical care in Thailand to examine why women are more likely to report illness than men but live longer. Health status was measured by self reports of illness in the past month for persons aged 15 and older using the 1985 Mortality and Morbidity Survey. Use of medical care was measured by self reports of using non-traditional practitioners. A gender difference of about two percentage points was found. Several explanations for the higher rates of illness among women were examined. An indirect measure of whether the respondent answered the illness questions him or herself versus having a proxy report had the strongest influence on the gender difference in reported morbidity, causing gender to loose its predictive power. Educational and occupational status partially explained the gender difference, although it appears that with respect to occupational status, the main mechanism influencing the gender difference in reported morbidity is the selection of ill men out of the labor force. Holding constant marital status and being a woman of reproductive age did not influence the gender difference in reported morbidity. There were no important gender differences in the reporting of life-threatening versus non-life-threatening illnesses. The severity of the condition does not help to explain why women are more likely to report illness but live longer than men. Among those who were identified as ill in the past month, women reported more use of medical care than men. Thus, women might be more inclined to get their health conditions treated and therefore, may be less likely to experience mortality. Several recommendations are made to reduce the influence of reporting behavior and selection effects in future studies of gender differences in health. In particular, assuring that studies ask men and women directly about their health status is critical. Accurate measures of the mechanisms that are thought to influence health differently for men and women are also important to collect. Finally, it is important to collect information that will facilitate making conclusions about causality.Ph.D.SociologyUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/105931/1/9226943.pdfDescription of 9226943.pdf : Restricted to UM users only

Child Health Status and Parental Employment

Objective: To understand the relationship between several measures of child health status and the employment of parents. Design: A cross-sectional study using 1994 National Health Interview Survey on Disability data. Participants: A nationally representative sample of children and their parents. Outcome Measures: Maternal and paternal employment (measured separately). Intervention: We use a series of logistic regression models with maternal and paternal employment as the dependent variables and the health status of the child with the poorest health status in the family as the primary independent variable. Models additionally include sociodemographic correlates of employment. Results: Having a child with poor health status, as measured by general reported health, hospitalizations, activity limitations, and chronic condition or disability status, is associated with reduced employment of mothers and fathers. For example, the odds ratios of being employed for having a child with an activity limitation are 0.75 for mothers (95% confidence interval, 0.67-0.85) and 0.66 for fathers (95% confidence interval, 0.53-0.82). Conclusions: Having a child with poor health status is associated with reduced maternal and paternal employment. Further studies are needed to determine whether poor child health status causes reductions in parental labor force participation. If such a causal relationship exists, it has important implications for social policy, employment policy, and clinical anticipatory guidance

Impact of Type 1 Diabetes Mellitus on the Family is Reduced with the Medical Home, Care Coordination, and Family-Centered Care

Objectives: To examine whether the medical home, care coordination, or family-centered care was associated with less impact of type 1 diabetes (T1D) on families’ work, finances, time, and school attendance. Study design: Using the 2005–2006 National Survey of Children with Special Health Care Needs, we compared impacts among children with T1D (n=583), with other special health care needs (n=39,944), and without special health care needs (n=4,945). We modeled the associations of the medical home, care coordination and family-centered care with family impacts in T1D. Results: In families of children with T1D, 75% reported a major impact versus 45% of families of children with special health care needs (p$1000/year, 24% reported spending ≥11 hours/week caring or coordination care and 20% reported ≥11 school absences/year. The medical home, care coordination and family-centered care were associated with less work and financial impacts. Conclusions: In childhood T1D, most families experience major impacts. Better systems of health care delivery may help families reduce some of these impacts

Potential Savings From Redetermining Disability Among Children Receiving Supplemental Security Income Benefits

Objective: To compare costs of redetermining disability to direct savings in SSI payments associated with different strategies for implementing Continuing Disability Reviews (CDRs) among children potentially enrolled in SSI from 2012–2021. Methods: We reviewed publicly available reports from the Social Security Administration (SSA) and Government Accountability Office (GAO) to estimate costs and savings. We considered CDRs for children ages 1–17 years, excluding mandated Low-Birth Weight and Age 18 Redeterminations that SSA has routinely carried out. Results: If SSA in 2012 performs the same number of CDRs for children as in 2010 (16,677, 1% of eligibles) at a cessation rate of 15%, the agency would experience net savings of approximately $145 million in benefit payments. If CDR numbers increased to the highest level ever (183,211, 22$1.6 billion in benefit payments. Discussion: Increasing the numbers of CDRs for children represents a considerable opportunity for savings. Recognizing the dynamic nature of disability, the agency could reassess persistence of disability systematically. Doing so could free up resources from children who are no longer eligible and help the agency better direct its benefits to recipients with ongoing disability and whose families need support to meet the extra costs associated with raising a child with a major disability

Interventions to Improve Screening and Follow-Up in Primary Care: A Systematic Review of the Evidence

Background The American Academy of Pediatrics and other organizations recommend several screening tests as part of preventive care. The proportion of children who are appropriately screened and who receive follow-up care is low. Objective: To conduct a systematic review of the evidence for practice-based interventions to increase the proportion of patients receiving recommended screening and follow-up services in pediatric primary care. Data source: Medline database of journal citations. Study eligibility criteria, participants, and interventions: We developed a strategy to search Medline to identify relevant articles. We selected search terms to capture categories of conditions (e.g., developmental disabilities, obesity), screening tests, specific interventions (e.g., quality improvement initiatives, electronic records enhancements), and primary care. We searched references of selected articles and reviewed articles suggested by experts. We included all studies with a distinct, primary care-based intervention and post-intervention screening data, and studies that focused on children and young adults (≤21 years of age). We excluded studies of newborn screening. Study appraisal and synthesis methods: Abstracts were screened by 2 reviewers and articles with relevant abstracts received full text review and evaluated for inclusion critieria. A structured tool was used to abstract data from selected articles. Because of heterogeneous interventions and outcomes, we did not attempt a meta-analysis. Results: From 2547 returned titles and abstracts, 23 articles were reviewed. Nine were pre-post comparisons, 5 were randomized trials, 3 were post-intervention comparisons with a control group, 3 were post-intervention cross-sectional analyses only, and 3 reported time series data. Of 14 articles with pre-intervention or control group data and significance testing, 12 reported increases in the proportion of patients appropriately screened. Interventions were heterogeneous and often multifaceted, and several types of interventions, such as provider/staff training, electronic medical record templates/prompts, and learning collaboratives, appeared effective in improving screening quality. Few articles described interventions to track screening results or referral completion for those with abnormal tests. Data were often limited by single-site, non-randomized design. Conclusions: Several feasible, practice- and provider-level interventions appear to increase the quality of screening in pediatric primary care. Evidence for interventions to improve follow-up of screening tests is scant. Future research should focus on which specific interventions are most effective, whether effects are sustained over time, and what interventions improve follow-up of abnormal screening tests

A Family-Centered, Community-Based System of Services for Children and Youth With Special Health Care Needs

Objective: To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services. Design: Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition. Setting: Policy research group and advisors at multiple sites. Participants: Policy researchers, content experts on CYSHCN, family representatives, and state program directors. Outcome: Definition of a system of services for CYSHCN. Results: This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the “community-based systems of services” contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. Conclusions: This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general

Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics

Objective: To extend development of a pediatric inflammatory bowel disease (IBD) health-related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables. Patients and Methods: Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures. Results: We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL. Conclusions: This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators