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"It's Relentless": Providers' Experience of Pediatric Chronic Critical Illness
Pamela K Donohue1,2, Erin P Williams3, Laura Wright-Sexton4
11 Department of Pediatrics, Johns Hopkins School of Medicine , Baltimore, Maryland.
Insights
Clinicians and families caring for children with chronic critical illness (CCI) experience burnout due to intense care needs and emotional tolls. Support strategies are crucial for high-quality care and provider retention.
Area of Science:
- Pediatric critical care medicine
- Healthcare professional well-being
- Family-centered care
Background:
- The population of children with chronic critical illness (CCI) is growing, presenting complex care challenges.
- These children require intensive, prolonged medical support, impacting both healthcare providers and families.
Purpose of the Study:
- To investigate clinician experiences with burnout.
- To understand clinician perceptions of family burnout in the context of caring for children with CCI.
Main Methods:
- Conducted semistructured interviews with 44 experts in pediatric CCI.
- Utilized content analysis of transcribed interviews to identify themes related to burnout.
Main Results:
- Both clinicians and families caring for children with CCI report experiencing burnout.
- Key factors contributing to burnout include escalating care demands, intense relationships, uncertain outcomes, and emotional stress.
- Families may experience burnout differently than clinicians.
Conclusions:
- Managing the complex medical needs of children with CCI is linked to both clinician and parent burnout.
- Developing targeted support strategies for clinicians and families is essential.
- Such strategies are vital for maintaining high-quality care and ensuring adequate clinical workforce for this vulnerable population.
Background:
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.
Objective:
To assess clinician experiences of burnout and clinician perceptions of family burnout in caring for children with CCI.
Design:
Semistructured interviews with 44 stakeholders known for pediatric CCI expertise were audio-recorded and transcribed. Participants characterized their experiences with provider and family burnout.
Setting/Subjects:
Stakeholders were from five metropolitan areas, representing a variety of professions (i.e., inpatient/outpatient clinicians, home health providers, and policy professionals).
Measurements:
Content analysis was performed on interview transcripts.
Results:
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.
Conclusions:
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.