Insights into patient and family-centered care through the hospital experiences of parents.

OBJECTIVE: To describe parents' care experiences during hospitalization of their children to identify strategies that could improve the provision of patient and family-centered care (PFCC).
DESIGN: A two-phase mixed-method descriptive design was used to explore the inpatient hospital experience of parents of children discharged. During Phase 1, parents participated in semistructured focus groups. During Phase 2, parents completed an inpatient hospital experience survey.
SETTING: A southeastern academic children's hospital (178 beds) with 89% of admissions from within the state and the remainder from around the world. PARTICIPANTS: Nine parents participated in one of three semistructured focus groups during Phase 1. During Phase 2, 134 parents completed the inpatient hospital experience survey.
METHODS: Each of three focus groups included three parents. The Children's Hospital Boston Inpatient Experience Survey, designed to measure parent perceptions of care, was distributed to all families of children that were discharged over a 5-month period between March and July 2011.
RESULTS: Three themes identified in the focus group data included apprehending the reality, engaging adversity, and advancing forward. Survey findings are organized into eight content areas: care from nurses, care from doctors, working together, child's experience, hospital environment, child medications (safety), arriving at and leaving the hospital, and overall ratings of the experience.
CONCLUSION: The findings of this study support the importance of ongoing evaluation of PFCC initiatives to identify strengths and weaknesses. Suggestions for improvement in patient and family-centered care are provided.