The Spiritual Needs of Parents at the Time of Their Child’s Death in the Pediatric Intensive Care Unit and During Bereavement: A Qualitative Study
OBJECTIVE: Death is common in pediatric intensive care units. A child’s death can shatter parents’ personal identities, disrupt their relationships, and challenge their worldviews. Spirituality is a human characteristic that engenders transcendence; seeks meaning, purpose, and connection to others; and helps to construct a coherent worldview. Greater attention to spiritual needs may help parents cope with their loss. Our objective is to gain a deeper understanding of parents’ spiritual needs during their child’s death and bereavement. DESIGN: Prospective, qualitative study SETTING: University-affiliated children’s hospital. PARTICIPANTS: Thirty-three parents of 26 children who died in the pediatric intensive care unit between January 1, 1999, and August 31, 2000 INTERVENTIONS: Semistructured, in-depth, videotaped interviews with parents 2 yrs after their child’s death. MEASUREMENTS AND MAIN RESULTS: The main spiritual need described by parents was that of maintaining connection with their child. Parents maintained connection at the time of death by physical presence. Parents maintained connection after the death through memories, mementos, memorials, and altruistic acts such as organ donation, volunteer work, charitable fund raising, support group development, and adoption. Other spiritual needs included the need for truth; compassion; prayer, ritual, and sacred texts; connection with others; bereavement support; gratitude; meaning and purpose; trust; anger and blame; and dignity. CONCLUSIONS: Bereaved parents have intense spiritual needs. Health care providers can help to support parents’ spiritual needs through words and actions that demonstrate a caring presence, impart truth, and foster trust; by providing opportunity to stay connected with the child at the time of death; and by creating memories that will bring comfort in the future.