Assessing children's and teenagers' bereavement when a sibling dies from cancer: a secondary analysis.

The purposes of this paper are to: (1) provide conceptual and empirical descriptions of the most frequently reported children's and teenagers' responses in anticipation of and after the death of a sibling from cancer; (2) describe these behaviours by age groups (3-5, 6-11 and 12-19 years); and (3) discuss the clinical utility of two new scales measuring children's bereavement. The literature review and an exploratory secondary analysis from a prospective longitudinal design were used to develop the empirical criteria for behavioural items indicative of bereavement. Data from four points in time: (1) 2 months before a child's death; (2) 2 weeks after death; (3) 4 months after death; and (4) 12 months after death were treated as a cross-sectional design, because of sample size, to describe bereavement behaviours and to discuss the beginning development of a screening tool for childhood bereavement services

School-age children's and adolescents' adjustment when a parent has cancer.

PURPOSE/OBJECTIVES: To describe school-age children's and adolescents' adjustment to parental cancer. DESIGN: Retrospective population control. SETTING: Screening cancer registries identified subjects at four Midwestern hospitals, including urban and rural settings of community and tertiary hospitals. All families were interviewed at home one time. SAMPLE: A convenience sample of 116 school-age children (6-10 years) and adolescents (11-18 years) living in the home of a parent with cancer. METHODS: Data were collected using two forms of the Child Behavior Checklist and an investigator-developed demographic form. The ill parent, the partner, and the adolescent rated the adjustment. This study's data were compared with population data, and comparisons were made among raters and with the existing literature. MAIN RESEARCH VARIABLES: School-age children's and adolescents' adjustment. FINDINGS: School-age children and adolescents of a parent with cancer have significantly more behavioral problems than were expected. The significant agreement among raters is of a modest magnitude but as strong as rater agreement reported in the literature. CONCLUSIONS: Most school-age children and adolescents of a parent with cancer are well-adjusted, but a significant subset of youngsters is at risk for behavioral problems. IMPLICATIONS FOR NURSING PRACTICE: Nurses need to assess ill parents' concerns about their youngsters, provide information to parents, adolescents, and school-age children, and institute appropriate referrals.

Coming to terms: parents' response to a first cancer recurrence in their child.

The purpose of this study was to explore, using grounded theory, the process experienced by parents who are dealing with the first recurrence of cancer in their child. The sample of 33 guardians (27 mothers, 1 grandmother, and 5 fathers) was drawn from three pediatric oncology settings. Data were collected through interviews, observations, and medical record review. Thirteen parents were interviewed to validate first the evolving and, later, the complete study findings. Four interactive components emerged: regulating shock, situation monitoring, alternating realizations, and eyeing care-limiting decisions. The overall organizing construct induced from these components was labeled "coming to terms." This construct represents the parents' efforts to overcome shock and despair to make wise decisions about treatment while accepting that the outcome if beyond their control, and to help their child have the optimal chance for cure while preparing for the child's possible death.

Health status of bereaved parents.

Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness of their child and during the first year following their child's death from cancer. The Duke-UNC Health Profile was used to examine parents' health prior to and at three points in thime after the child's death. The bereavedparents' general health was compared to the health of normative sample of adults. The findings indicate that parents' health is not adversely affected by a child's death from cancer.

Family research in pediatric oncology nursing.

This article reviews and critiques pediatric oncology family nursing research and suggests advancing the research basis of pediatric oncology family nursing practice. The article is organized around the conceptual issues that challenge family nurse researchers, the methods used in reviewing the literature, instrumentation that reflects conceptual issues, findings, and suggestions. Methodological issues abound in this literature and some shared findings across studies do exist: parenting is a concern of all family members; family communication problems have been identified from several perspectives; and increased stress at some points in treatment is reported by all members of the family. Coping is an area of limited agreement and adjustment is poorly articulated in this literature. Longitudinal studies, improved instrumentation, use of triangulation, and publication of more complicated data sets that include family measurement are recommended to advance the scientific basis of pediatric oncology family nursing.

Two weeks post-death report by parents of siblings' grieving experience.

Nurses who work with children and families need to be aware of the impact that the death of sibling has on children. Although many children have experienced losses, the loss of a sibling of course has a tremendous affect. Nurses must educate parents and children about death and the affect on the entire family. Siblings should be involved in the communication about the impending death and in the funeral arrangements. Open communication between the dying child, the siblings and the parents is very important. Young children will have different needs than older children because of their difficulty in understanding the finality of death. It is natural for parents to try to protect their children from unpleasant experiences such as death and dying. Research supports the dying process including the funeral. Children and their families need support through out the dying experience including follow up after the actual death. They need to be assured that their feelings and actions are common to others that have suffered a significant loss.

Terminal care costs in childhood cancer.

PURPOSE: To present a conceptualization of health care costs and to describe costs of health care in the terminal phase of childhood cancer. To present an exploratory comparison of the costs of terminal care in the hospital versus home care services, and to discuss the use of cost research in nursing practice. METHOD: Telephone interviews were done approximately 16 months after the death of a child to retrospectively ascertain services used, costs to the family, and insurance information. Provider billing and insurance data were subsequently collected. The families were divided into two groups based upon the use of home care or traditional hospital care during the terminal phase. FINDINGS: Home care was less expensive for total costs than hospital care. Home care was more expensive for nonhealth care and indirect costs than hospital care. CONCLUSIONS: Nurses should consider direct health care costs, nondirect health care costs, and indirect costs when assisting family decisions about care. Nurses and families should be aware of potential cost shifting.

Measurement of family coping.

Three family coping instruments that have been used in cancer nursing research have been discussed and their usefulness for nursing research and practice have been presented. While all three instruments use the parents as the source of information about family coping with cancer, the F-COPES was designed for use with adolescents as well. Use of these instruments with families coping with childhood cancer can increase nursing's knowledge base for practice and provide scientifically sound and clinically relevant measurement.

Family relationships in two types of terminal care.

This study investigated parent's perception of family relationships in 87 parents from 48 families during the terminal illness and first year following a child's death from cancer. Using the Family Relationships Index, parents' perception of family relationships were compared: (a) to normative data and (b) between home and hospital terminal care. Data collection occurred before death during the terminal phase, and two weeks, four months, and one year post death. The results of data analyses by confidence intervals and t-tests generally indicated that (a) parents' perceived family relationships to differ from "normal" families and (b) hospital based terminal care families presented evidence of better family relationships than home care based terminal care families.

Family coping with childhood cancer.

Previous studies using nonstandardized instruments measuring coping with childhood cancer, suggested families coped well. The concepts of encapsulation and at-risk behaviors were derived from this literature as coping strategies. Encapsulation strategies normalize the experience and control the meaning of the illness. At-risk strategies include complying with treatment and protecting the child. Three purposes of this paper are (a) describe parents' coping in 45 families whose child has cancer using a standardized instrument (CHIP), (b) compare the findings from this study with previous studies, and (c) explore the concepts of encapsulation and at-risk as family coping strategies using selected items on the CHIP. Internal reliabilities ranged from .71 to .79 on the CHIP's three scales. In this study, correlational and descriptive analysis were conducted. The CHIP's psychometric properties in this study ranged from .76 to .84. The newly developed scales of encapsulation and at-risk had internal reliabilities of .74, .74, .74, and .46 for the fathers and mothers. Using the CHIP scales parents' coping was similar to other samples in which the CHIP was used. With the exception of the mothers' at-risk scale, a cohesive family coping measure was evidenced by the acceptable internal reliabilities on the newly developed scales. Further development of the encapsulation scale will provide a family coping measure useful in testing conceptually based nursing interventions.

The relationship between parent-sibling communication and coping of siblings with death experience.

Past studies have suggested that parents who can effectively communicate about subjects such as death and dying are most likely to help their child cope with illness and death. Most studies have focused on communication with the ill child and less attention has been paid to the sibling. As part of a larger study to investigate the effects of two types of terminal care on families of a child dying of cancer, this portion of the study focused on parent-sibling communication. It was hypothesized that increased communication would increase coping as manifested by fewer behavioral problems and more social competence in siblings. The tools used included the Child Behavior Check List (CBCL) and the Parent-Sibling Communication instrument. Measurements were taken before and at 2 weeks, 4 months, and 12 months after the death of the ill child. One positive and four negative correlations were found. Parent-sibling communication was positively related to Social Competence before the ill child's death, and was inversely related to Total Behavior Problems following the death. Parent-sibling communication was also inversely related to External Behavior Problems after the ill child's death, to Internal Behavior Problems after the ill child's death, and to Internal Behavior Problems at the 4-month point after the death. The positive relationship between parent-sibling communication and Social Competence scores may reflect the sensitivity of parents to siblings' needs.