Elisa J. Sobo

Parents' Reports of Barriers to Care for Children With Special Health Care Needs: Development and Validation of the Barriers to Care Questionnaire

OBJECTIVE To describe the development and validation of the Barriers to Care Questionnaire (BCQ). METHODS The 39-item BCQ was developed through review of the literature, focus groups, and cognitive interviews of Spanish- and English-speaking parents of children with chronic health conditions. Barriers to care are conceptualized as a multidimensional construct consisting of pragmatics, health knowledge and beliefs, expectations about care, skills, and marginalization. The BCQ was field tested in 3 samples of children with special health care needs (CSHCN). RESULTS Response rate for the field test was 77.2%. There were minimal missing data (0.08%), no floor effects, and minimal ceiling effects (3.8%, total scale). Internal consistency reliability (alpha) for the BCQ total scale was.95 and subscale alpha ranged from.75 to.91. The BCQ total scale and subscales correlated in the expected direction with validated measures of primary care characteristics and health-related quality of life. BCQ scores were higher (fewer barriers) for children with a primary care physician and for those who reported no problems getting care or foregone care. CONCLUSION The BCQ is a feasible, reliable, and valid instrument for measuring barriers to care for CSHCN. Its use may inform efforts to support consumer choice, enhance provider accountability, and spur quality improvement.

Good communication in pediatric cancer care: a culturally-informed research agenda.

Communication affects people’s factual understanding of the situations they are in. This in turn affects consent to be treated and adherence. Although a growing body of literature concerns cancer communication, it generally concerns adult patients; pediatric-specific knowledge is limited. Furthermore, most research focuses shortsightedly on physicians rather than providers who have more patient contact, favors studying the single visit instead of encompassing the cycle of cancer care, does not take the child into account, and ignores the importance of provider-provider communication. Moreover, cultural issues are only narrowly conceived. In exploring culture’s role in pediatric cancer care communication, this article demonstrates that culture cannot be defined as just ethnicity or race. Professions also have cultures and resultant differences in communication patterns that can lead to communication failures. It also shows that there is a crucial need for more applied research as well as more qualitative research that can enrich our understanding of the complicated context-related factors facilitating or barring successful pediatric cancer communication.

Rapid Assessment with Qualitative Telephone Interviews: Lessons from an Evaluation of California’s Healthy Families Program & Medi-Cal for Children

California’s Healthy Families/Medi-Cal for Children (HF/MCC) program provides low- and no-cost health insurance to low-income children. In December 1999 and January 2000, 72 community-based organizations (CBOs) were contracted by California’s Department of Health Services (DHS) to supply culturally appropriate HF/MCC outreach and enrollment services. This article describes the incorporation of a qualitative telephone interview component for rapid assessment purposes after the planned quantitative analysis of program records faltered in 2001 due to missing, invalid, and unreliable data. We describe the rapid interview protocol and discuss benefits and barriers. The protocol can serve as a model for others interested in using rapid qualitative telephone interviews within their own evaluation efforts.

Developing Indicators for Emergency Medical Services (EMS) System Evaluation and Quality Improvement: A Statewide Demonstration and Planning Project

BACKGROUND The state of California, like every other state, has no system for assessing the quality of prehospital emergency medical services (EMS) care. As part of a statewide project, a process was designed for the evaluation and quality improvement (QI) of EMS in California. Local EMS agency (LEMSA) representatives made a commitment to submit data from both the providers and the hospitals they work with. INDICATOR SELECTION AND DEVELOPMENT For conditions such as cardiac chest complaints, standardized indicators had already been developed, but for many other areas of interest there was either little literature or little consensus in the literature. Definitional differences were often linked to local-practice protocol differences. A related comparison challenge lay in the fact that care protocols may differ across systems. Some aspects of care may not be offered at all, which may reflect resource shortages or variable medical direction. DATA COLLECTION PROCEDURES Each indicator was precisely defined, and definition sheets and data troubleshooting report forms were provided to participants in three data-collection rounds. Participants were given 1 month to collect the data, which consisted of summary-level elements (for example, average time to defibrillation for all patients 15 years or older who received defibrillation in 1998). Data were then aggregated, analyzed, and prepared for display in graphs and tables. ACCESS AND MEASUREMENT ISSUES Numerous data collection problems were encountered. For example, not all participants could actually access data that they thought would be available. Linking data on patients as they travel through the continuum of EMS care (dispatch, field, hospital) and linking EMS data to hospital outcomes was also difficult. Yet even when data were easily available, challenges arose. The need for specificity, the potential misfit between definitions and the available data, and the challenges of data retrieval remained salient for the duration of the project and made cross-LEMSA and cross-provider comparison problematic. RECOMMENDATIONS AND LESSONS LEARNED The project led to formal policy recommendations regarding development of a state-defined minimum data set of structure, process, and outcome indicators and their associated data elements; provision in the minimum data set for both local-level and statewide indicators; and provision of technical assistance at the local-provider level. EPILOGUE Since the projects conclusion in June 2000, many regional and local EMS groups have begun to collect data on indicators. Many of the projects recommendations have been incorporated into the work plan of the states System Review and Data Committee.