Mary Jo Gilmer

Circumstances Surrounding the Deaths of Hospitalized Children: Opportunities for Pediatric Palliative Care

Objectives. Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team. Design. Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children’s Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life. Results. Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented. Conclusions. The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.

Comparison of Continuing Bonds Reported by Parents and Siblings After a Child's Death from Cancer

Few studies have distinguished similarities and differences between continuing bonds as they appear in various bereaved populations, particularly parent versus sibling cohorts following a childs death. This mixed-method study compared how parents and siblings experienced continuing bonds in 40 families who lost a child to cancer. Thirty-six mothers, 24 fathers, and 39 siblings were recruited 3–12 months post-loss (M = 10.7, SD = 3.5). Nearly all participants (97%) reported engaging in purposeful bonds with deceased children, while only 14% reported nonpurposeful connections. Over half of participants (58%) experienced comforting effects from reminders of the deceased child, whereas only 10% of family members experienced discomforting effects. Mothers communicated with the deceased, thought about the deceased, and did things that the deceased child would have liked more often than siblings. Mothers also reported significantly more comforting effects than siblings. Additional research is needed to further delineate continuing bonds for different types of loss and examine associations with positive and negative outcomes for bereaved individuals.

Bereaved parents' and siblings' reports of legacies created by children with cancer.

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.

Peer Relationships of Bereaved Siblings and Comparison Classmates After a Child's Death from Cancer

OBJECTIVES To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS Families were recruited from cancer registries at four hospitals 3-12 months after a childs death. Measures of social behavior and peer acceptance were completed by children in the classrooms of 105 bereaved siblings (ages 8-17 years). Teachers also reported on childrens social behavior. Three classmates were matched for gender, race, and age to each bereaved sibling to form a comparison group (n = 311). RESULTS Teachers reported bereaved siblings were more prosocial than comparison classmates. Peers perceived bereaved boys as more sensitive-isolated and victimized, while bereaved siblings in elementary grades were perceived by peers as less prosocial, more sensitive-isolated, less accepted, and as having fewer friends. Peers and teachers viewed bereaved siblings in middle/high school grades as higher on leadership-popularity. CONCLUSIONS Bereaved siblings who were male and in elementary grades were more vulnerable to social difficulties, while those in middle/high school may exhibit some strengths. Ongoing research to inform the development of interventions for bereaved siblings is warranted.

A Qualitative Study of Advice From Bereaved Parents and Siblings

Despite a growing bereavement literature, relatively little is known about what families find helpful after a childs death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40 families (65 parents, 39 siblings) of children who died from cancer 6–19 months earlier. Content analysis emphasized the individual nature of grief and revealed advice that fit into three temporal categories: before the death, soon after, and long-term. Findings are discussed in the context of contemporary theory and provide insight into the development and timing of grief interventions.

Changes in siblings after the death of a child from cancer.

Background: Few studies have examined changes in siblings after the death of a brother or sister, particularly from mother, father, and sibling perspectives within the first year after death. Objective: This descriptive study identified and assessed the frequency of changes in siblings after a child’s death from cancer. Methods: Participants were recruited from cancer registries at 3 hospitals in the United States and Canada 3 to 12 months after the child’s death. Thirty-six mothers, 24 fathers, and 39 siblings from 40 families were included. Semistructured interviews using open-ended questions were conducted with each parent and sibling separately in the home. Content analysis identified emerging themes, and the McNemar tests compared frequencies between each paired set of reports (sibling vs mother, sibling vs father, mother vs father). Results: Sixty-nine percent of participants reported personal changes in siblings (eg, changes in personality, school work, goals/life perspective, activities/interests). Forty-seven percent noted changes in siblings’ relationships with family members and peers. Only 21% of participants reported no changes attributed to the death. Comparisons of frequencies across informants were not significant. Conclusions: Most siblings experienced changes in multiple areas of their lives after the death of a brother or sister to cancer. Some changes reflected siblings that were positively adapting to the death, whereas other changes reflected difficulties. Implications for Practice: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to loss.

Pediatric palliative care

Melanies case and the associated concerns are not unique. Children with life-threatening conditions and their families and communities may benefit from a family-centered model of pediatric palliative care. Benefits from its implementation are not just at the end of life, but throughout the course of therapy. Compassion coupled with a holistic approach incorporating humane and family-centered care is essential in meeting physical, mental, and spiritual needs. An interdisciplinary and collaborative model of pediatric palliative care involves the work of many, including nurses, physicians, social workers, chaplains, child life specialists, pharmacists, ethicists, bereavement counselors, ancillary staff, volunteers, and families themselves. They must incorporate key elements of the model, including clinical services, education and training, support services, and research that address physical, mental, and spiritual needs of families, children, and communities faced with life-threatening conditions.

Bereaved parents and siblings offer advice to health care providers and researchers.

Objective: To determine how to improve care for families by obtaining their advice to health care providers and researchers after a child’s death from cancer. Design: Families with a surviving sibling (age, 8 to 17 y) were recruited from cancer registries at 3 hospitals in the United States and Canada 3 to 12 months (M=10.4, SD=3.5) after the child’s death. Setting: Data were collected in the home. Participants: Participants (N=99) included 36 mothers, 24 fathers, and 39 siblings from 40 families. Outcome Measures: Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content. Findings: Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, and (e) offering praise. Interwoven within the 5 themes was a subtheme of continuity of care. Conclusions: Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.

Changes in Parents After the Death of a Child From Cancer

CONTEXT Few studies have compared multiple perspectives of changes experienced by parents after a childs death. OBJECTIVES This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the death of a child from cancer. METHODS Mothers (n=36), fathers (n=24), and siblings (n=39) from 40 families were recruited from three hospitals in the U.S. and Canada three to 12 months after the death (M=10.7, SD=3.5). Semistructured interviews with open-ended questions were conducted in the home with each participating parent and sibling separately. Content analysis identified emerging themes, and frequencies were compared between each paired set of reports (mother vs. sibling, father vs. sibling, and mother vs. father). RESULTS Parents and siblings identified two major categories of change experienced by bereaved parents. These changes occurred in their personal lives (e.g., emotions, perspectives and priorities, physical state, work habits, coping/behaviors, spiritual beliefs, and feeling something is missing) and relationships (e.g., family, others). Ninety-four percent of the mothers, 87% of the fathers, and 69% of the siblings reported parental changes in at least one of these categories. Parents were more likely to report changes in priorities, whereas siblings reported more sadness in parents after the death. CONCLUSION Positive and negative changes in parents after the death of a child from cancer occur in both personal and relational domains. Additional research is needed to determine the impact of a childs death on bereaved parents over time and to develop strategies to promote healthy adjustment.

Facebook advertisements recruit parents of children with cancer for an online survey of web-based research preferences.

Background: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. Objective: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. Methods: Facebook’s paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. Results: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of