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This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study methodology was used to describe six cases. Participants were classified into two groups based on scores on the Inventory of Complicated Grief. Commonalities in themes on the Continuing Bonds Interview and projective drawings were assessed. Those in the Non-Complicated Grief Group reported internalization of positive qualities and identification with the deceased child as a role model, whereas participants in the Complicated Grief Group did not report these experiences. In addition, the drawings of those in the Non-Complicated Grief Group were evaluated as more adaptive than those in the Complicated Grief Group.

OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic children's hospital, with the goal of describing perceived barriers to end-of-life care for children and their families. The report focuses on the responses of nurses (n = 117) and physicians (n = 81). RESULTS. Approximately one half of the respondents reported 4 of 26 barriers listed in the study questionnaire as frequently or almost always occurring, that is, uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%). Approximately one third of respondents cited another 8 barriers frequently arising from problems with communication and from insufficient education in pain and palliative care. Fourteen barriers were perceived by >75% of staff members as occasionally or never interfering with pediatric end-of-life care. Comparisons between physicians and nurses and between ICU and non-ICU staff members revealed several significant differences between these groups. CONCLUSIONS. Perceived barriers to pediatric end-of-life care differed from those impeding adult end-of-life care. The most-commonly perceived factors that interfered with optimal pediatric end-of-life care involved uncertainties in prognosis and discrepancies in treatment goals between staff members and family members, followed by barriers to communication. Improved staff education in communication skills and palliative care for children may help overcome some of these obstacles, but pediatric providers must realize that uncertainty may be unavoidable and inherent in the care of seriously ill children. An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care.

Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally accepted that despite the permanence of physical separation, the bereaved remains involved and connected to the deceased and can be emotionally sustained through continuing bonds. The majority of literature has focused on adults and on the nature of continuing bonds following the death of a spouse. In this article, the authors demonstrate how the continuing bonds concept applies to the sibling relationship. We describe the unique continued relationship formed by bereaved children and adolescents following a sibling loss, highlight the factors that influence the siblings continuing bonds expressions, and offer clinical interventions. In our view, mental health professionals can play an important role in helping parents encourage activities that may facilitate the creation and maintenance of continuing bonds in their children.

Many families who experience the loss of a child also lose the supportive relationships they have had with the health care providers who cared for their child throughout the course of his or her illness. The creation of the University of California at San Francisco (UCSF) Children’s Hospital Bereavement Weekend Retreat was fueled by Robin Kramer’s conviction that bereavement care for families is a responsibility of the health care professionals who treated the child and with whom the child’s family has already developed a relationship. The retreat, which occurs in an outdoor setting over the course of a weekend, creates an opportunity for families of pediatric oncology and bone marrow transplant patients who died to reconnect with staff members who cared for the deceased child and to join with other bereaved families in remembering these children. The weekend contains a series of grief and bereavement workshops for parents and siblings, presentations by experts, and a memorial service. A unique feature of this program is the pairing of outside bereavement counselors with UCSF staff to co-lead support groups for parents and groups for siblings of the deceased children. The first retreat was held in 1994 and the fifth will take place in June 2002. In the following interview, Robin Kramer M.S., R.N., P.N.P. speaks with former Innovations Staff Editor Samantha Libby Sodickson about how the model for the retreat has changed over time, and how she feels health care professionals can better serve the needs of families who have lost a child. This interview is excerpted from the thematic issue, “On Grief and Bereavement,” Volume 3, Number 3, 2001 of the online journal Innovations in End-of-Life Care at ,www.edc.org/lastacts/.. IMPETUS FOR THE BEREAVEMENT RETREAT

This descriptive study of health-related quality of life of children with cancer compared children/adolescents', parents' and teachers' ratings for somatization, depression and anxiety to determine if there were significant correlations among respondent scores. In addition, the percentage of agreement among respondents and significant differences based on age, gender, use of cranial radiation and treatment status were measured. Forty-three children/adolescents with cancer, currently receiving therapy for at least 1 year or who had completed therapy for no more than 3 years (excluding children who had received bone marrow transplants or who had brain tumors), were recruited, with a parent and teacher, from 3 university medical centers. The Behavioral Assessment System for Children questionnaires for children/adolescents, parents and teachers were used. Parents reported a higher level of depression for the children/adolescents with cancer than did the teachers or the children/adolescents themselves. Parents reported a higher level of anxiety for the children/adolescents than did the teachers. High positive correlations were found among scores from parents and teachers and among scores from parents and children/adolescents for the anxiety and depression but not somatization subscales. Children/adolescents and teachers had high, positively correlated scores only for the depression subscale. High, positive correlations were found between somatization, anxiety and depression within each group of respondents. A significant percentage of agreement between all respondents on ratings for at-risk status was obtained only for the depression subscale. Age was the only variable found to have an influence on scores and only for the anxiety subscale.

Using a classic Delphi methodology, this study identified the nursing behaviors and interventions that oncology nurses rated as most important in facilitating the patient's, parents', and siblings' coping efforts with the effects of disease and treatment. Random selection of 300 pediatric oncology nurses resulted in a final sample of 69 nurses who completed all 3 rounds of the Delphi. The majority of the nurses were younger than 35 years of age, had less than 10 years of experience, were educated with at least a bachelor's degree, and practiced in an all-oncology setting. Twenty-eight facilitative behaviors were identified for the child with cancer, 25 for the parents, and 25 for the siblings. Results of this study support previous research on patient, parent, and sibling coping.

Both the treatment for childhood cancer and the legal requirements for gaining parents' consent to treatment have become increasingly complex. The purpose of the exploratory investigation reported here was to identify influential circumstances surrounding the consent process in the pediatric setting, to describe the relationship of parental anxiety to these factors, and to delineate related practice and research implications. Twenty-eight parents of children entered on one of four protocols for the treatment of newly diagnosed acute lymphoblastic leukemia at the Childrens Hospital Los Angeles and the University of California San Francisco were asked to complete two questionnaires within 48 hours after consenting to treatment: the State-Trait Anxiety Index and the Parent Informed Consent Questionnaire. Results of the study confirmed clinical experience that parents are given complex information and asked to make decisions about their child's life in a highly anxious state. Although participants were generally satisfied with the informed consent process 48 hours after signing a consent form, further research is needed to document how well parents understand and remember key information, as well as the influence of time, experience, and changes in state anxiety on their perceptions of the adequacy of the consent process. In current clinical practice, simple strategies can be applied to improve the informed consent process for families of children with cancer.

The non-verbal component of communication can either enhance (when consonant) or undermine (when dissonant) verbal aspects of our communication. In fact, even an initial understanding of non-verbal communication techniques can greatly improve our effectiveness in communicating with patients and families. This interactive, skill oriented, and case-based session will comprise of three parts: Part 1 (10 minutes): The three key components of communication expectancies and the most current research on non-verbal communication will be reviewed. Part 2 (20 minutes): A validated taxonomy of nonverbal communication will be discussed using clinical examples. Part 3 (30 minutes): Using the principles of problem based immersion learning, we will focus on (i) increasing awareness of non-verbal communication by using a variety of communication exercises using multi-media tools and (ii) then use the skills gained from the awareness exercises to experientially understand non-verbal communication by viewing and analyzing a professionally filmed video case study. It is hoped that attendees will be able to gain a better understanding of the intricacies of non-verbal communication and use these strategies to enhance their communication skills in a variety of clinical venues and settings.

Purpose: For some critically ill children, resuscitation is not attempted when further therapy is judged inappropriate. Most pediatric deaths involve withdrawal of life support (WDS). Do not resuscitate (DNR) orders remain infrequent in children.

Background: In the US, 55,000 children die annually, mostly in intensive care units and rarely receiving palliative care. Barriers to palliative care for children have not been well studied. Methods: Our goal was to describe providers' perspectives on barriers to optimal end-of-life care for children. With IRB approval, we surveyed pediatric providers in a children's hospital using a confidential questionnaire asking demographics, practice characteristics, and perceptions of specified barriers to palliatve care for chidren (as Likert scales). We compared perceptions across settings, medical acuities, and children's ages using non-parametric statistics. Results: Of 229 questionnaires, 22% were conpleted by physicians, 49% by nurses. 65% of providers work in intensive care. 31% of deaths occurred in patients aged

Purpose For some critically ill children, no attempts at resuscitation are made because further therapy is judged inappropriate. Most pediatric deaths involve withdrawal of life support (WDS); however, do not resuscitate (DNR) orders remain infrequent in this population. We studied DNR orders and WDS decisions for children with life-limiting illnesses. Methods We randomly selected 57 hospital records from all 120 in-patient pediatric deaths that occurred in 1 year at an academic children9s hospital. Demographics, end-of-life patient care conferences with parents, DNR orders, WDS, and time intervals between conferences and death were abstracted. Results Of 57 pediatric in-patient deaths, median age at death was 29 days. Median length of stay for terminal hospitalization was 10 days. Median time from first patient care conference with parents to the child9s death was 2 days. 95% of deaths occurred in intensive care settings. 11 patients did not have support withdrawn or a DNR. 23 patients had a written DNR order, while 42 patients had WDS. Of 19 with both DNR and WDS support, 16 had the DNR written within 48 hours of WDS. DNR orders were more common when patients died ≥ 2 days vs. ≤ 2 days (p=0.01) after the first parent conference. DNR orders did not significantly differ by age at death, length of stay, race, or unit at death, although sample size was small. Differences among primary diagnoses (oncologic, infectious, prematurity, non-cardiac anomalies, cardiac, respiratory and CNS conditions) were not statistically correlated with DNR status. Conclusions Most pediatric deaths still occur in intensive care settings. Many patients have neither WDS nor a DNR order and die receiving maximal therapy. Almost 50% of patients in whom life-support is withdrawn do not have a written DNR order. DNR orders do not appear to be a common first step in limiting treatment, but are written with the expectation of WDS and imminent death. Finally, earlier patient care conferences significantly increased the probability of having a DNR order. Given the short interval from poor prognosis to death, we may need to redefine palliative care practices to fit the realities of how and where children die.

Many children who receive cancer chemotherapy are at increased risk for developing Pneumocystis carinii pneumonia (PCP). Despite knowledge of chemoprophylaxis, isolated incidents of PCP still occur. This article reviews the incidence, pathophysiology, clinical course, treatment and prevention of PCP. Case study vignettes exemplify variables contributing to non-compliance with prophylactic measures, as well as suggest areas for nursing intervention.

Advances in the specialty of pediatric oncology have significantly improved the prognosis of children with cancer. Since their disease is no longer imminently fatal, their families must face the challenge of coping with a life altered by cancer, its sophisticated treatment regimen, and the accompanying uncertainties the disease brings. Most of the literature focuses on the impact of the illness on the sick child and the parents, rarely mentioning its effects on the healthy siblings. However, the well brothers and sisters are in a unique position, often being the primary target of family disequilibrium. Therefore, this article takes a developmental approach in describing the siblings' perspective, identifying their characteristic responses and special needs. Specific recommendations aimed at promoting the well siblings' adjustment are offered; health care professionals can play an important role in helping parents better understand the types of feelings, behaviors, and stresses experienced by the healthy s...