Results From a Patient Experience Study in Pediatric Gastrointestinal Endoscopy

Objective: Gastrointestinal endoscopy in children has become a standard diagnostic and therapeutic modality. The aim of our study was to characterize the most memorable elements of the patient experience from the parent’s and patient’s perspective and determine ways to improve the overall quality of their experience. Methods: Using a structured questionnaire, we conducted 47 phone interviews with families who had recently undergone gastrointestinal endoscopic procedures. Results: Our study showed clear communication and mutual agreement on care decisions contributed to positive experiences. Inadequate communication of information regarding alternatives to the procedure and risk of complications during the informed consent discussion contributed to negative patient experiences. Standardization of postprocedure follow-up and timely communication of pathology findings also had potential for improvement. Conclusion: Our study revealed 2 areas for quality improvement interventions: The need to ensure that alternatives and complications are thoroughly discussed and the need for standardization of postprocedure follow-up

The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study

Children and youth with special health care needs (CYSHCN) comprise a growing proportion of the pediatric population; the patient- and family-centered medical home provides a comprehensive model for caring for these patients. Given the limited literature available as well as extreme patient vulnerability, we sought to understand the experience of Latino parents in caring for their CYSHCN within our patient-centered medical home in an urban neighborhood in North Philadelphia. A convenience sample of 14 mothers or grandmothers of CYSHCN participated in semistructured interviews, which were analyzed using a thematic, constant comparative approach to identify common themes. Themes identified included “Waiting,” “Communication/Trust,” “All-Consuming Requirements of Care/Sacrifice,” and “Fate/Faith/Blessings.” These themes corresponded with identified goals of the patient-centered medical home. Our findings suggest that the principles of the patient-centered medical home can be applied in unique ways to caring for this unique patient population