OBJECTIVE: To describe the experience of parents of critically ill infants and children who require highly technical therapy and to identify interventions that parents might find helpful during the experience. DESIGN: Nonexperimental 8-yr descriptive study. SETTING: Pediatric intensive care unit within a children's hospital. PATIENTS: Parents of infants and children who were supported on extracorporeal membrane oxygenation (ECMO). INTERVENTIONS: Questionnaires, mailed 4-months after ECMO support, inquired about parent preparation and emotional responses, concerns, family-staff communication related to ECMO, and whether, retrospectively, parents would have consented again to ECMO. MEASUREMENTS AND MAIN RESULTS: Two hundred seventy-two parents responded. More than 25% of parents reported being reassured by the hope of therapy. Sixty percent reported they felt they really did not have a choice but to consent to ECMO, given the severity of their child's condition. Upon first seeing their child on ECMO support, most parents reported feeling relieved to see their child alive and being as well prepared as possible. Although some parents remained anxious throughout the ECMO course, talking with care providers and observing the child's daily progress lessened parental fears. Although parents in the nonsurvivor group recalled discussing death before ECMO, 22% remembered first hearing about the possibility of death only after their child failed to improve while undergoing ECMO. During the process of ECMO withdrawal, nearly one fourth of the nonsurvivor group expected their child to fool everyone and to live. After their child's death, 93% felt comforted by follow-up contact with hospital personnel. Compared with the survivor group, fewer parents of nonsurvivors reported that they would again consent to ECMO. CONCLUSIONS: Researched-based family-driven care requires an understanding of parental experience and worries, and interventions that parents themselves identify as helpful. Continued sensitive individualized care is warranted.
OBJECTIVE: To describe the experience of parents of critically ill infants and children who require highly technical therapy and to identify interventions that parents might find helpful during the experience. DESIGN: Nonexperimental 8-yr descriptive study. SETTING: Pediatric intensive care unit within a children's hospital. PATIENTS: Parents of infants and children who were supported on extracorporeal membrane oxygenation (ECMO). INTERVENTIONS: Questionnaires, mailed 4-months after ECMO support, inquired about parent preparation and emotional responses, concerns, family-staff communication related to ECMO, and whether, retrospectively, parents would have consented again to ECMO. MEASUREMENTS AND MAIN RESULTS: Two hundred seventy-two parents responded. More than 25% of parents reported being reassured by the hope of therapy. Sixty percent reported they felt they really did not have a choice but to consent to ECMO, given the severity of their child's condition. Upon first seeing their child on ECMO support, most parents reported feeling relieved to see their child alive and being as well prepared as possible. Although some parents remained anxious throughout the ECMO course, talking with care providers and observing the child's daily progress lessened parental fears. Although parents in the nonsurvivor group recalled discussing death before ECMO, 22% remembered first hearing about the possibility of death only after their child failed to improve while undergoing ECMO. During the process of ECMO withdrawal, nearly one fourth of the nonsurvivor group expected their child to fool everyone and to live. After their child's death, 93% felt comforted by follow-up contact with hospital personnel. Compared with the survivor group, fewer parents of nonsurvivors reported that they would again consent to ECMO. CONCLUSIONS: Researched-based family-driven care requires an understanding of parental experience and worries, and interventions that parents themselves identify as helpful. Continued sensitive individualized care is warranted.