Developing a Measure of Relational Outcomes Between Families and Pediatric Complex Care Programs.

Abstract

Objective: Complex Care Programs (CCPs) have formed to meet the needs of children with medical complexity (CMC). The effectiveness of CCPs vary for unknown reasons. One explanation for CCP success may involve specific outcomes of the relationships between families of CMC and CCP clinicians. We sought to develop a parent-reported questionnaire, the Relational Outcomes (ReOs) Measure, to assess these relationship outcomes.

Patients and methods: The ReOs Measure was designed to capture 5 outcomes of relationships between CCPs and families: Interpersonal trust and respect; Trust regarding shared knowledge and responsibility; Understanding and being understood; Confidence and self-efficacy; and Comprehensive perspective suffused with caring. Parents of children receiving care from the CCP at a children's hospital and health professionals assessed whether the items were clear and whether the measure included all important aspects of their relationship with the CCP.

Results: We developed 15 questionnaire items based on prior research and clinical experience and conducted interviews with 14 parents: 9 for the English version and 5 for the Spanish version. Parents reported the items were clear and understandable and were able to give examples for each item from their own experience. Parents affirmed that the items captured important aspects of their relationship with the CCP. Based on parent feedback, 14 items were retained without change, 1 item was revised, and 1 new item was added.

Conclusions: The ReOs Measure assesses key outcomes of the relationship between CCPs and families of CMC.