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 childen 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 (α) for the BCQ total scale was .95 and subscale α 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.

KEY WORDS:  barriers to care , children with special health care needs , measurement , parent report