Abstract
Intensivists are increasingly attuned to the postdischarge outcomes experienced by families because patient recovery and family outcomes are interdependent after childhood critical illness. In this scoping review of international contemporary literature, we describe the evidence of family effects and functioning postpediatric intensive care unit (PICU) as well as outcome measures used to identify strengths and weaknesses in the literature. We reviewed all articles published between 1970 and 2017 in PubMed, Embase, PsycINFO, Cumulative Index of Nursing and Allied Health Literature (CINAHL), or the Cochrane Controlled Trials Registry. Our search used a combination of terms for the concept of "critical care/illness" combined with additional terms for the prespecified domains of social, cognitive, emotional, physical, health-related quality of life (HRQL), and family functioning. We identified 71 articles reporting on the postPICU experience of more than 2400 parents and 3600 families of PICU survivors in 8 countries. These articles used 101 different metrics to assess the various aspects of family outcomes; 34 articles also included open-ended interviews. Overall, most families experienced significant disruption in at least five out of six of our family outcomes subdomains, with themes of decline in mental health, physical health, family cohesion, and family finances identified. Almost all articles represented relatively small, single-center, or disease-specific observational studies. There was a disproportionate representation of families of higher socioeconomic status (SES) and Caucasian race, and there was much more data about mothers compared to fathers. There was also very limited information regarding outcomes for siblings and extended family members after a child's PICU stay. Significant opportunities remain for research exploring family functioning after PICU discharge. We recommend that future work include more diverse populations with respect to the critically ill child as well as family characteristics, include more intervention studies, and enrich existing knowledge about outcomes for siblings and extended family.
Highlights
Intensivists are increasingly attuned to the post-discharge outcomes experienced by families because patient recovery and family outcomes are interdependent after childhood critical illness
The 23 articles used a total of 41 unique outcome measures, including 13 unique semi-structured interviews, to assess family functioning in 1,066 families and 477 parents after general pediatric intensive care units (PICUs) admission (n=19 articles, including 6 focused on survivors of severe TBI), in mixed NICU/PICU populations (n=1 article, 15 parents), and in a CICU/congenital heart disease population (n=1 article, 29 parents)
This review identified 71 articles reporting on the late effects of critical illness in childhood on more than 2,400 parents and 3,600 families of PICU survivors in eight countries, and an additional 600 parents and families recovering from the death of their child in the PICU
Summary
Intensivists are increasingly attuned to the post-discharge outcomes experienced by families because patient recovery and family outcomes are interdependent after childhood critical illness. In this scoping review of international contemporary literature, we describe the evidence of family effects and functioning postPICU as well as outcome measures used in order to identify strengths and weaknesses in the literature. Results: We identified 71 articles reporting on the post-PICU experience of more than 2,400 parents and 3,600 families of PICU survivors in 8 countries. These articles used 101 different metrics to assess the various aspects of family outcomes; 34 articles included open-ended interviews. We recommend that future work include more diverse populations with respect to the critically ill child as well as family characteristics, include more intervention studies, and enrich existing knowledge about outcomes for siblings and extended family
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