Parent’s Perceptions of Health Care Providers Actions Around Child ICU Death

Abstract

Purpose To describe parents’ perspectives of health care provider actions that helped or did not around the time of infant/child’s intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified. Findings What helped most: compassionate, sensitive staff; understandable explanations of infant’s/child’s condition; experienced, competent nurses; providers did everything to help infant/child; and parents’ involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child’s disease, care, complications. Conclusions Compassionate, sensitive staff and understandable explanations of children’s conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.

Testing the Feasibility of Skype and FaceTime Updates With Parents in the Neonatal Intensive Care Unit

“…[12][13][14][15] Parents of hospitalized children desire to see familiar faces, be provided with honest information, be included as part of the team, and trust what is being communicated. 10,[16][17][18][19][20] Inconsistent caregivers, poor communication, and mistrust can contribute to conflict between providers and patients' families and to regret.…”

Taking care of the newborn dying and their families: Nurses' experiences of neonatal intensive care

“…Studies conducted with parents of children and newborns that died after a period in the ICU and nurses working in neonatal units revealed some of the attitudes of nursing professionals who helped families facing the death of their children, namely, being a sensitive and experienced team, having compassion and encouraging parental involvement in care decisions contribute to a constructive experience (17) .…”

O cuidado à família diante da perda neonatal: uma reflexão sob a ótica da Teoria da Complexidade

“…It is proposed that this care occurs in four ways: physical and emotional support at the time of death; clear, consistent and compassionate communication; viability of shared decision-making and family support during the mourning process. 7 Research shows the importance of developing and implementing programs that suggest protocols such as Hope and Healing 13 , Gundersen Letheran Bereavement Services, March of Dimes and Wisconsin Stillbirth Service Program, as well as Guidelines such as The Royal College of Paediatrics and Child Health (RCPCH), 14 which include interventions that help the family from birth to death, 15 as well as guidance to health professionals on the best and most respectful way of handling the newborn. 16 Acting in the daily life of the NICU requires emotional maturation and practical ability.…”