Isolation in Parents and Providers of Children With Chronic Critical Illness.

OBJECTIVES: An increasing number of children with medical complexity spend months or more in PICUs, lending to isolation for their parents and providers. We sought to better describe the experiences of parents and providers of children with chronic critical illness specifically around isolation during PICU admission. DESIGN: In-person interviews and surveys of pediatric critical care providers and parents of children with chronic critical illness. Interview transcripts were analyzed for themes. SETTING: Academic institution; PICU. SUBJECTS: Seven PICU physicians, eight nurse practitioners, and 12 parents of children with chronic critical illness. INTERVENTIONS: Surveys and semi-structured interviews. MEASUREMENTS AND MAIN RESULTS: PICU providers acknowledge feeling medically isolated from children with chronic critical illness, fueled by a lack of chronic critical illness training and burnout. Providers also perceive medical isolation in parents of children with chronic critical illness manifesting as a declining level of parental engagement. Parents did not feel medically isolated in our study. Providers also perceive social isolation in families of children with chronic critical illness, identifying the child's protracted disease and lack of tangible support systems as contributing factors. Parents self-reported adequate social supports but scored high on depression scales suggesting a disconnect between perceived and actual support. Both parents and providers acknowledge that the child's chronic critical illness could be a source of support. CONCLUSIONS: PICU providers perceived social and medical isolation in parents of children with chronic critical illness; however, parents did not endorse either directly. A majority of parents showed signs of depression despite reporting good social support. Providers reported feeling medically isolated from children with chronic critical illness and their families related to burnout and insufficient training. Novel methods to address these issues are needed.

"Stuck in the ICU": Caring for Children With Chronic Critical Illness.

OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes. SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA). SUBJECTS: Fifty-one stakeholders including: 1) interdisciplinary providers (inpatient, outpatient, home care, foster care) with extensive chronic critical illness experience; or 2) parents of children with chronic critical illness. INTERVENTIONS: Telephone or in-person interviews. MEASUREMENTS AND MAIN RESULTS: Stakeholders identified several key issues and several themes emerged after qualitative analysis. Issues around chronic critical illness patient factors noted that patients are often relocated to the ICU because of their medical needs. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that outstrip ICU capabilities. Family factors can affect care as prolonged ICU experience leads some to disengage from decision-making. Clinician factors noted that parents of children with chronic critical illness are often experts about their child's disease, shifting the typical ICU clinician-parent relationship. Comprehensive care for children with chronic critical illness can become secondary to needs of acutely ill patients. Lastly, with regard to system factors, stakeholders agreed that achieving consistent ICU care goals is difficult for chronic critical illness patients. CONCLUSIONS: ICU care is poorly adapted to pediatric chronic critical illness. Patient, family, clinician, and system factors highlight opportunities for targeted interventions toward improvement in care.

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

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.