Conceptual and design issues in instrument development for research with bereaved parents.

Many childhood deaths in the United States occur in pediatric intensive care units (PICUs) and parents have special needs in this death context. As an interdisciplinary research team, we discuss conceptual and design issues encountered in creating a new instrument, the Bereaved Parent Needs Assessment-PICU, for assessing parents' needs in this setting. Using a qualitative approach, our team previously explored how the culture and related ways of providing care in one urban Midwestern children's hospital PICU affected parents' bereavement needs and experiences. We describe using this qualitative foundation in the development of a new quantitative instrument to more widely validate and measure bereaved parents' needs around the time of a child's death across multiple PICUs. We highlight a series of issues that warrant consideration in designing a research instrument for this vulnerable population including setting and context, format and content, temporality, recruitment, and content expertise.

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 α 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.

Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study.

The pediatric intensive care unit (PICU) is a high-tech setting aimed at restoring health to critically ill children. When childhood death occurs in the PICU, it constitutes a special context for parent bereavement. The purpose of this interdisciplinary qualitative research was to gain a deeper understanding of parents' needs around the time of their child's death in the PICU. Through interviews and focus groups with bereaved parents and hospital chaplains, categories of parents' needs emerged. Deeper understanding of parents' needs will allow health professionals to better support parents during bereavement as well as to provide more customized care.

Implementing a triangulation protocol in bereavement research: a methodological discussion.

Triangulation is a comparative strategy for examining data that strengthens qualitative and multi-method research. Despite the benefits of triangulation noted in the research methods literature, few concrete models for operationalization of protocols exist. Lack of documentation of explicit triangulation procedures is especially true in the area of bereavement research. This article describes how an interdisciplinary research team implemented a triangulation protocol in a study of the needs of bereaved parents. Triangulation enabled the integration of diverse data sources, methods, and disciplinary perspectives. These processes yielded a more meaningful typology of bereaved parents' needs than would have otherwise been possible. Extending the use of triangulation will enhance multi-faceted understandings of 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.

A developmental psychopathology framework of the psychosocial needs of children orphaned by HIV.

In addition to the obstacles to a successful resolution of grief normally faced by children whose parents have died, children orphaned by AIDS may face additional psychological and social challenges. However, limited attention has been paid to psychosocial and developmental needs of children orphaned by HIV/AIDS, particularly in resource-poor countries or regions. In this article the authors review the global literature on child bereavement and AIDS orphan care experiences in developing countries and present a developmental psychopathology model of the psychosocial issues facing AIDS orphans. The authors identify gaps in the literature and provide suggestions for future research on AIDS orphans in resource-poor countries and regions. They emphasize that future studies need to assess the status of behaviors and mental health of children orphaned by AIDS within a developmental framework, identify those individual and social factors associated with grief, and examine the long-term impact of quality of care, developmental maturation, and attachment with caregivers on the psychosocial well-being of AIDS orphans.

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.

Pediatrician characteristics associated with attention to spirituality and religion in clinical practice.

OBJECTIVE: The literature suggests that a majority of pediatricians believe that spirituality and religion are relevant in clinical practice, but only a minority gives them attention. This project explored this disparity by relating personal/professional characteristics of pediatricians to the frequency with which they give attention to spirituality and religion. METHODS: Pediatricians (N = 737) associated with 3 academic Midwestern pediatric hospitals responded to a survey that requested information concerning the frequency with which they (1) talked with patients/families about their spiritual and religious concerns and (2) participated with them in spiritual or religious practices (eg, prayer). The associations between these data and 10 personal and professional characteristics were examined. RESULTS: The results demonstrated the disparity, and the analysis identified 9 pediatrician characteristics that were significantly associated with more frequently talking with patients/families about their spiritual and religious concerns. The characteristics included increased age; a Christian religious heritage; self-description as religious; self-description as spiritual; the importance of one's own spirituality and religion in clinical practice; the belief that the spirituality and religion of patients/families are relevant in clinical practice; formal instruction concerning the role of spirituality and religion in health care; relative comfort asking about beliefs; and relative comfort asking about practices. All of these characteristics except pediatrician age were also significantly associated with the increased frequency of participation in spiritual and religious practices with patients/families. CONCLUSIONS: Attention to spiritual and religious concerns and practices are associated with a web of personal and professional pediatrician characteristics. Some characteristics pertain to the physician's personal investment in spirituality and religion in their own lives, and others include being uncomfortable with spiritual and religious concerns and practices. These associations shed light on the disparity between acknowledged spirituality and religion relevancy and inattention to it in clinical practice.

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.

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.