Family-Centered Care in Pediatric Intensive Care Units

Abstract

Background: Parents of children admitted to the ICU can experience long-lasting distress associated with communication problems and parental role disturbance. Family-centered care (FCC) is a partnership approach to care that is proposed to improve outcomes. Palliative care (PC) is a FCC approach that supports quality of life consistent with patient and family values. Purpose: This study examined FCC in pediatric critical care settings with the goal of making recommendations to improve its implementation. Methods: The first part is a systematic search and thematic analysis of 33 qualitative articles. The second and third parts analyzed semi-structured interviews with 22 physicians from neonatal, pediatric and cardiothoracic intensive care units in a single pediatric hospital. Transcripts were analyzed using content and thematic analysis. Results: Parental preferences for involvement differ in the domains of information sharing, decision making, and power-sharing across a spectrum of parental roles, from parents as care providers to parents as care recipients. Families want to be included in discussions, decisions and actions related to their child’s care, but system and clinician level factors create barriers to their participation. System factors include competing priorities, fragmentation of care, and continuity issues. Clinician factors include skill needs for exploring family role preferences, hopes and goals, beliefs about quality of life, and preferences for acute vs. chronic care. These factors contribute to unmet PC needs for patients with longer stays and greater medical complexity. PC consultation teams can help meet these needs but system factors also limit their participation. Conclusions: Including PC needs checklists may stimulate earlier and more frequent goals of care discussions and identify unmet needs to trigger consultation with the PC team. Interventions to improve coordination of care and continuity include maintaining a list of the roles and names of all clinicians involved in a child’s care and standardizing the format of a weekly report with families to assure consistency in information sharing. Families want to be involved in their child’s ICU care, which will require system- and clinician-level changes in practice given competing demands and skills. Palliative care teams offer additional support and can facilitate family-centered care in pediatric ICUs.