Celia S. Thurston

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.

End-of-life decision-making and satisfaction with care: parental perspectives.

Objectives To evaluate parents’ perceptions of the process by which decisions are made to limit or withdraw life support from critically ill children, and to evaluate parents’ perceptions of their child’s death in the pediatric intensive care unit (ICU) and their satisfaction with the care provided. Design Survey. Setting University teaching hospital. Participants Seventy-eight parents who experienced the death of a child in the ICU between January 1, 1995 and June 30, 1998. Interventions Structured telephone interviews. Measurements and Main Results Forty-one parents recalled discussing the limitation or withdrawal of life support from their child with a physician. Of these, 31 (76%) felt they had just the right amount of authority to make decisions for their child, 8 (20%) felt they had too little, and 1 (2%) felt they had too much. Those satisfied with their decision-making authority had more trust in their physician than those who were dissatisfied (5 vs. 1, p < .001 by Mann-Whitney U test, where 1 = no trust and 5 = complete trust). Factors identified by parents as being extremely important in the decision-making process included physician recommendations, diagnosis, expected neurologic recovery, and degree of pain and suffering. A total of 51 parents were with their child at the time of death. Although none regretted being present, 17 parents who were not present later wished they had been (p < .001, Fisher’s exact test). The quality of care provided to parents by the ICU staff was graded (1 = poor; 5 = excellent). Eleven parents (14%) scored quality of care ≤2. These parents more often had a child die of an acute illness (6/11 vs. 8/67;p < .01), more often felt uninformed about their child’s condition (9/11 vs. 19/67;p < .001), were less likely to understand the cause of death (4/11 vs. 51/67;p < .01) and less likely to have contact with hospital staff at home after the child’s death (6/11 vs. 56/66;p < .05). These parents were also less likely to perceive staff as sympathetic (4/11 vs. 57/67;p < .001) or kind (5/11 vs. 65/67;p < .001). Conclusions Recommendations of physicians, nature of illness and expected neurologic recovery are important to parents making end-of-life decisions for their children. The establishment of trust is crucial in guiding parents through the decision-making process. Parental presence at the time of a child’s death, the provision of adequate information, and a sympathetic environment may facilitate a healthy grief response.

Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit

Objective Parental grief after the death of a child may be influenced by the chronicity of the child’s illness, the quality of care provided, and the parents’ ability to cope. Our objective is to identify aspects of pediatric intensive care and parental coping that have a favorable effect on parental bereavement outcome. Design Follow-up survey. Setting University teaching hospital. Participants Fifty-seven parents who experienced the death of their child in the pediatric intensive care unit between January 1, 1995, and June 30, 1998. Interventions Parents completed two standardized questionnaires, the Coping Resources Inventory and the Texas Revised Inventory of Grief. The Coping Resources Inventory quantifies five coping resources: cognitive, social, emotional, spiritual, and physical. The Texas Revised Inventory of Grief is a two-part questionnaire that quantifies the intensity of grief at two time points: (1) near the time of death, and (2) in the present. Parents had previously participated in an interview with the investigators that included questions regarding the emotional attitudes of the pediatric intensive care unit staff and the adequacy of information provided during their child’s critical illness. Main Outcome Measures Texas Revised Inventory of Grief scores were used as measures of early and long-term grief. Results Parents’ whose child died acutely had greater intensity of early and long-term grief than those whose child died of chronic illness (p < 0.05, Mann-Whitney U test). Parents’ physical coping resources and the emotional attitudes of pediatric intensive care unit staff predicted the intensity of early grief (R2 = .27, multiple regression). Parents’ cognitive coping resources, the emotional attitudes of staff, and the adequacy of information provided to parents predicted the intensity of long-term grief (R2 = .42). Conclusions Parents’ physical well-being enables more effective handling of early grief. Parents’ understanding of their own self-worth and their child’s illness determine long-term adaptation to loss. A caring emotional attitude displayed by pediatric intensive care unit staff has beneficial short-term and long-term effects on parental bereavement.

Exploring parents’ environmental needs at the time of a child’s death in the pediatric intensive care unit*

Objective: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child’s death in a pediatric intensive care unit must be understood to design facilities that comfort at the time of death and promote healing after loss. The purpose of this study is to explore parents’ environmental needs during their child’s hospitalization and death in the pediatric intensive care unit. Design: Descriptive qualitative study. Setting: A university-affiliated children’s hospital. Participants: Thirty-three parents of 26 children who died in a pediatric intensive care unit. Interventions: Semistructured, in-depth, videotaped interviews were conducted with parents 2 yrs after their child’s death. Interviews were analyzed by an interdisciplinary research team using established qualitative methods. Measurements and Main Results: Environmental themes identified through parent interviews included 1) places remembered, 2) spatial characteristics, 3) services for daily living, 4) parent caregiving, 5) access, and 6) presence of people. Places remembered by parents in most detail included the pediatric intensive care unit patient rooms and waiting room. Spatial characteristics pertaining to these places included the need for privacy, proximity, adequate space, control of sensory stimuli, cleanliness, and safety. Parents needed facilities that enabled self-care such as a place to eat, shower, and sleep. Parents also needed access to their child and opportunities to participate in their child’s care. Parents described the physical presence of people, such as those who provide professional and personal support, as another important environmental need. Conclusions: The pediatric intensive care unit environment affects parents at the time of their child’s death and produces memories that are vivid and long lasting. Positive environmental memories can contribute to comfort during bereavement whereas negative memories can compound an already devastating experience. Parents’ perspectives of the pediatric intensive care unit environment can provide insight for adapting existing spaces and designing new facilities.

The Bereaved Parent Needs Assessment: A new instrument to assess the needs of parents whose children died in the pediatric intensive care unit

Objectives:To evaluate the reliability and validity of the Bereaved Parent Needs Assessment, a new instrument to measure parents’ needs and need fulfillment around the time of their child’s death in the pediatric intensive care unit. We hypothesized that need fulfillment would be negatively related to complicated grief and positively related to quality of life during bereavement. Design:Cross-sectional survey. Setting:Five U.S. children’s hospital pediatric intensive care units. Subjects:Parents (n = 121) bereaved in a pediatric intensive care unit 6 months earlier. Interventions:Surveys included the 68-item Bereaved Parent Needs Assessment, the Inventory of Complicated Grief, and the abbreviated version of the World Health Organization Quality of Life questionnaire. Each Bereaved Parent Needs Assessment item described a potential need and was rated on two scales: 1) a 5-point rating of importance (1 = not at all important, 5 = very important) and 2) a 5-point rating of fulfillment (1 = not at all met, 5 = completely met). Three composite scales were computed: 1) total importance (percentage of all needs rated ≥4 for importance), 2) total fulfillment (percentage of all needs rated ≥4 for fulfillment), and 3) percent fulfillment (percentage of important needs that were fulfilled). Internal consistency reliability was assessed by Cronbach’s &agr; and Spearman-Brown–corrected split-half reliability. Generalized estimating equations were used to test predictions between composite scales and the Inventory of Complicated Grief and World Health Organization Quality of Life questionnaire. Measurements and Main Results:Two items had mean importance ratings <3, and 55 had mean ratings >4. Reliability of composite scores ranged from 0.92 to 0.94. Total fulfillment was negatively correlated with Inventory of Complicated Grief (r = −.29; p < .01) and positively correlated with World Health Organization Quality of Life questionnaire (r = .21; p < .05). Percent fulfillment was also significantly correlated with both outcomes. Adjusting for parent’s age, education, and loss of an only child, percent fulfillment remained significantly correlated with Inventory of Complicated Grief but not with World Health Organization Quality of Life questionnaire. Conclusions:The Bereaved Parent Needs Assessment demonstrated reliability and validity to assess the needs of parents bereaved in the pediatric intensive care unit. Meeting parents’ needs around the time of their child’s death may promote adjustment to loss.

Special Considerations in Conducting Bereavement Focus Groups

Focus groups conducted with grieving people pose special challenges. However, this method can be successfully used in bereavement research especially when group interaction is central to the research aim. This article builds on key articles discussing ethical, methodological, logistical, and analytical issues in conducting focus groups with vulnerable populations (Owen, 2001; Seymour, Bellamy, Gott, Ahmedzai, & Clark, 2002). For bereaved people, vulnerability stems from heightened potential for harm by virtue of participation in sensitive, personal exploration of death-related experiences. We discuss reasons for selecting focus group methods and our experiences with planning and implementing focus groups with bereaved people. Issues found to be highly salient in our work include: team composition, participant recruitment, creating the environment, starting and ending the group, language and listening, managing emotional discussions and time, and analytic considerations. Recommendations are made for effectively using focus groups to generate new knowledge in bereavement research.

Life as Death Scholars: Passion, Personality, and Professional Perspectives

In death-averse American society, the field of thanatology is often socially and academically isolating. The purpose of this article is to describe the experiences of a group of death scholars and share insights gained as members of an interdisciplinary team. They discuss the ways in which they have created a special “safe” space for death study collaboration. The melding of their individual passions, personalities, and professional perspectives has allowed them to form a productive and satisfying work environment. Additional discourse in this field is needed on the nature and processes of such death-studies groups.