Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents' Priorities and Recommendations

Meyer, Elaine C.; Ritholz, Marilyn D.; Burns, Jeffrey P.; Truog, Robert D.

doi:10.1542/peds.2005-0144

Cited by 394 publications

(448 citation statements)

References 58 publications

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“…Parents wanted to receive honest information about their infant's condition and prognosis, even if the news was not good, which is similar to previous research. 11,13,14,23 They wanted to be involved in decision-making for their infant, and wanted their decisions to be respected by medical staff. If parents felt involved in the decision-making for their infant, they appeared to have a more positive perception of their infant's end-of-life care, regardless of how long their infant lived.…”

Section: Discussionmentioning

confidence: 99%

“…10 These data suggest that palliative care consultation may enhance the end-of-life care for newborns, but there are still questions about what constitutes an excellent end-of-life care. Although several studies have asked the parents of children who have died about their perspectives on their child's end-of-life care, 11,12,13 these studies were not specific to parents who had lost an infant. One study that did ask parents who had an infant die in a neonatal intensive care unit 14 found that parents wanted clear information about their child's condition, and wanted to be involved in decisions that were made about their child's care.…”

Section: Introductionmentioning

confidence: 99%

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Infant end-of-life care: the parents' perspective

Pierucci²,

et al. 2007

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Objective: The purpose of this study was to identify factors important to parents in their infant's end-of-life care.Study Design: Participants were parents (n ¼ 19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).Result: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers. Conclusion:Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Infant end-of-life care: the parents' perspective

Pierucci²,

et al. 2007

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“…Actor-family members used statements to ensure that they correctly understood the information provided, such as recapping what the practitioners had said and paraphrasing, more frequently than practitioners. Previous studies have found that clarity and honesty of information is of pivotal importance for families in pediatric 17,22 and neonatal intensive care settings, 23 and is associated with higher parent ratings of the quality of care. Unfortunately, information regarding patient's diagnosis, treatment and prognosis is often not communicated effectively to family members in ICU 24 and NICU.…”

Section: Discussionmentioning

confidence: 99%

“…This finding is especially meaningful because integration of psychosocial aspects of care and the opportunity for parents to express their opinion and understand information have been highly valued by parents. 15,22,29 Wolfe et al 30 reported that the inclusion of psychosocial professionals in pediatric oncology family meetings was associated with greater concordance in the timing of physicians' and parents' understanding that the child had no realistic chance for cure, and also with greater integration of palliative care. Further studies may be valuable to determine whether the unique communication contributions of social workers and chaplains highlighted here, such as asking psychosocial questions, eliciting the family perspective, and engaging in positive talk, enhance patient and family outcomes.…”

Section: Discussionmentioning

confidence: 99%

Analysis of enacted difficult conversations in neonatal intensive care

et al. 2009

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Objective: To analyze the communicative contributions of interdisciplinary professionals and family members in enacted difficult conversations in neonatal intensive care.Study Design: Physicians, nurses, social workers, and chaplains (n ¼ 50) who attended the Program to Enhance Relational and Communication Skills, participated in a scenario of a preterm infant with severe complications enacted by actors portraying family members. Twenty-four family meetings were videotaped and analyzed with the Roter Interaction Analysis System (RIAS).Result: Practitioners talked more than actor-family members (70 vs 30%). Physicians provided more biomedical information than psychosocial professionals (P<0.001), and less psychosocial information than nurses, and social workers and chaplains (P<0.05; P<0.001). Social workers and chaplains asked more psychosocial questions than physicians and nurses (MD ¼ P<0.005; RN ¼ P<0.05), focused more on family's opinion and understanding (MD ¼ P<0.01; RN ¼ P<0.001), and more frequently expressed agreement and approval than physicians (P<0.05). No differences were found across disciplines in providing emotional support. Conclusion:Findings suggest the importance of an interdisciplinary approach and highlight areas for improvement such as using silence, asking psychosocial questions and eliciting family perspectives that are associated with family satisfaction.

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“…1). The rationale for excluding parents of children who had died was the assumption that other research methods would be more appropriate for this group [18][19][20]. In the eventuality of transferral from one to another PICU, the parents' opinion was sought for the first admission only.…”

Section: Participantsmentioning

confidence: 99%

Perceptions of parents on satisfaction with care in the pediatric intensive care unit: the EMPATHIC study

et al. 2009

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Purpose: To identify parental perceptions on pediatric intensive care-related satisfaction items within the framework of developing a Dutch pediatric intensive care unit (PICU) satisfaction instrument. Methods: Prospective cohort study in tertiary PICUs at seven university medical centers in The Netherlands. Participants: Parents of 1,042 children discharged from a PICU. Results: A 78-item questionnaire was sent to 1,042 parents and completed by 559 (54%). Seventeen satisfaction items were rated with mean scores \8.0 (1, completely unimportant, to 10, very important) with standard deviations C1.65, and thus considered of limited value. The empirical structure of the items was in agreement with the theoretically formulated domains: Information, Care and Cure, Organization, Parental Participation, and Professional Attitude. The Cronbach's a of the domains ranged between 0.87 and 0.94. Conclusions: Parental perceptions on satisfaction with care measures were identified and prioritized. Reliabilities of the items and domains were of high level.

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Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents' Priorities and Recommendations

Abstract: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.

Cited by 394 publications

References 58 publications

Infant end-of-life care: the parents' perspective

Infant end-of-life care: the parents' perspective

Analysis of enacted difficult conversations in neonatal intensive care

Perceptions of parents on satisfaction with care in the pediatric intensive care unit: the EMPATHIC study

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