Sherylyn H. Briller

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.

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.

Parental bereavement needs in the pediatric intensive care unit: review of available measures.

BACKGROUND Pediatric intensive care units (PICUs) are highly technological settings in which advanced care is used to restore health to critically ill children; however, they are also places where children die. Understanding the needs of parents bereaved in this setting is essential for better family care. OBJECTIVE To systematically review the extant literature to identify instruments potentially useful for assessing the needs of parents bereaved in the PICU. METHODS We searched PubMed™, CINAHL™, and Health and Psychosocial Instruments™ for tools to assess family needs during a relatives hospitalization. From 357 abstracts, 96 articles were reviewed that described 31 instruments. Fifteen instruments were selected based on their (1) use with parents and/or the bereaved, (2) use in PICU, neonatal intensive care, or pediatric wards, (3) measurement of family needs or related constructs, and (4) published psychometrics. Need-related constructs included satisfaction with family care and environmental stress since these have been related to met and unmet needs, respectively. RESULTS No instruments specifically designed to assess the needs of parents bereaved in the PICU were identified. Most tools reviewed showed validity and reliability in the populations and settings for which the tools were intended; however, validity and reliability were not established for parents bereaved in the PICU. No tools addressed the full range of needs for parents bereaved in the PICU. CONCLUSIONS A new instrument is needed to adequately assess the needs of parents bereaved in the PICU. Patient conditions, illness trajectories, and life course perspectives must be considered in designing a new tool.

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.

Pursuing a Desired Future: Continuity and Change in a Long-Term-Care Community

New ways of planning, assessing, and measuring cultural change are needed in long-term care. Much effort is focused on person-centered care; less attention is paid to achieving localized change. Long-term-care communities need innovative approaches for identifying local cultural features to preserve and others to reconfigure. This case study involves applied anthropologists working with four stakeholder groups—residents, staff, family members, and volunteers—to document views of their “culture story” and conceptualize a cultural ideal for their community. Based on strengths and weaknesses from their culture story, specific recommendations were made to maintain their strong relationship focus, expand community outreach, and improve staff relations. Incorporating “insider” views of the past, present, and imagined future and building on current “best practices” of the culture-change movement are two distinctive but complementary approaches for motivating and managing cultural change.

Teaching About Better Family–Clinician Partnerships in High-Risk Pediatric Asthma Care

Family–clinician partnership including communication, trust, respect, and power leveling is essential in pediatrics. Our case study illustrates elements supporting/hindering partnership in a high-risk urban pediatric asthma clinic. Data from observation of a 100-minute visit were qualitatively analyzed by applying codes to themes, using family-centered principles. Three key categories emerged from examining interactions and their sequencing: (1) partnership supported, (2) partnership missed, and (3) partnership hindered. Practitioners must become more sensitive to families’ lives and skilled in family-centered care delivery. Clinician education about partnership can help with negotiating workable treatment strategies for complex conditions such as asthma and reduce health disparities.

Treatment Collaboration When the Stakes Are High: Ethnographically Studying Family-Centered Care in an Outpatient Pediatric Specialty Clinic

Family-centered care (FCC) is vital for children with special health-care needs and serious chronic illnesses. Family–clinician collaboration and partnership formation are key FCC elements associated with improved health outcomes. However, FCC implementation barriers persist. Although some ethnographic research examines how FCC principles align with practice in inpatient settings, more studies are needed in outpatient specialty clinics. Using an FCC-oriented research team (clinicians, social science researchers, and families) blended multidisciplinary clinical knowledge and family/patient expertise with chronic illness. Our ethnographic study in a high-risk asthma outpatient clinic examined how FCC principles align with clinical practice, identified factors affecting partnership, and compared our findings to a large ethnographic study in an inpatient setting. Qualitative data from direct observation of 14 families with lengthy clinic visits were analyzed. Codes were applied to themes using FCC principles. Clinic visits had interactional and contextual elements that both aligned and misaligned with key FCC principles: information sharing, respect, participation, and collaboration. Recommendations for advancing FCC are outlined, and the importance of this step in light of ongoing health disparities is addressed.