"It's Relentless": Providers' Experience of Pediatric Chronic Critical Illness

Children with chronic critical illness (CCI), those children with repeated and prolonged hospitalizations along with technology-dependence or multiple organ system involvement, are increasing in number. The intensive daily needs of these children, during hospitalization and at home, affect both clinicians and families. To assess clinician experiences of burnout and clinician perceptions of family burnout in caring for children with CCI. Semistructured interviews with 44 stakeholders known for pediatric CCI expertise were audio-recorded and transcribed. Participants characterized their experiences with provider and family burnout. Stakeholders were from five metropolitan areas, representing a variety of professions (i.e., inpatient/outpatient clinicians, home health providers, and policy professionals). Content analysis was performed on interview transcripts. Participants reported that both clinicians and families caring for children with CCI experience some level of burnout, although stakeholders note that families may experience burnout differently than clinicians. Burnout results from the following: (1) escalating daily care needs; (2) intense relationships between clinicians and families; (3) uncertain outcomes; (4) feeling unprepared to care for children with complicated medical needs; and (5) the stress and emotional toll of caring for a child with CCI. Managing the medical needs of children with CCI can be associated with clinician and parent burnout. Strategies to support clinicians and families are needed to ensure high quality of care for these children, as well as maintain an appropriate number of clinical providers for this vulnerable subset of children with medical complexity.