Symptoms of posttraumatic stress in young adult survivors of childhood cancer.

PURPOSE: This study assessed the prevalence of posttraumatic stress symptoms in young adult survivors of childhood cancer and the association of posttraumatic stress with anxiety, adjustment, perceptions of illness and treatment, and medical data extracted from oncology records. PATIENTS AND METHODS: Seventy-eight young adults (ages 18 to 40 years) who had been treated for childhood cancer completed questionnaires and psychiatric interviews assessing posttraumatic stress, anxiety, perceptions of their illness and treatment, and symptoms of psychologic distress. Data on treatment intensity and severity of medical late effects were collected via chart review. RESULTS: Of the patient sample, 20.5% met American Psychiatric Association Diagnostic and Statistical Manual criteria for posttraumatic stress disorder (PTSD) at some point since the end of their treatment. Clinically significant levels of intrusive (9%) and avoidant (16.7%) symptoms were reported. Participants also reported elevated state and trait anxiety. Participants with PTSD reported higher perceived current life threat, more intense treatment histories, and higher (and clinically significant) levels of psychologic distress than those who did not have PTSD. CONCLUSION: One-fifth of this sample of young adult survivors of childhood cancer met criteria for a diagnosis of PTSD, with clinically significant symptoms of intrusion and avoidance reported. As in other samples, PTSD in young adult survivors was associated with anxiety and other psychologic distress. Survivors' perceptions of treatment and its effects were more highly associated with posttraumatic stress than were more objective medical data. The data suggest that cancer-related posttraumatic stress may emerge in young adulthood and may affect the achievement of developmental milestones and orientation toward health care.

Childhood chronic disease and family functioning: a study of phenylketonuria.

Families with young children with phenylketonuria (n = 45) were compared with matched comparison families (n = 49) with respect to parental psychologic distress, marital satisfaction, parenting stress, family cohesion and adaptability, and child behavior. Multivariate analyses failed to show significant group differences. Univariate analyses indicated lower levels of adaptability and cohesion for the families with a child with phenylketonuria and evidence of lower levels of social competence in the children with phenylketonuria than in the comparison group. Group differences with regard to parental psychologic distress, marital satisfaction, and parenting stress were not found. The study results provide implications for understanding the impact of childhood chronic disease on families.

Informing subjects of epidemiologic study results. Children's Cancer Group.

OBJECTIVE: To assess the feasibility and process of providing feedback to parents regarding the results of epidemiologic research, in particular to look at the importance and clarity of the information provided, parental reactions to the results, and utilization of the data provided. METHODOLOGY: Parents who participated in an epidemiologic study of pediatric brain tumors (patient and control mothers) were sent a letter summarizing the results of the study and the Parent Study Results Survey to complete and return. The final sample used for analyses was 109 (patient) and 90 (control) mothers. Analyses were conducted to determine differences between patient and control mothers and differences among subsets defined by educational level and vital status of the patient. RESULTS: Mothers rated the importance and clarity of the information very highly, although patient mothers were more likely than control mothers to want more information and a telephone contact. Patient and control mothers were similar in reported sadness, anxiety, and being overwhelmed, but patient mothers felt less satisfied and relieved. Patient mothers expressed feeling more guilt nad anger than control mothers, although even the levels among the patient mothers were only moderate. Close to half of all mothers commented on the inconclusiveness of the study results. Nearly all mothers indicated they would suggest that other parents participate in epidemiologic research. CONCLUSIONS: It is valuable to many parents that they receive information about results of research in which they have participated. We found little evidence of strong negative effects to a detailed feedback letter. We recommend that evaluative data be used to guide the process of informing research participants about study results and that investigators consider making feedback letters a standard part of research protocols.

Pharmacologic and psychologic interventions for procedural pain.

OBJECTIVE: This study evaluated a combined pharmacologic and psychologic intervention (combined intervention, CI) relative to a pharmacologic-only (PO) intervention in reducing child distress during invasive procedures in childhood leukemia. Predictors of child distress included age, group (CI, PO), and procedural variables (medications and doses, technical difficulty, number of needles required). METHODOLOGY: This was a randomized, controlled prospective study that compared the PO (n = 45) and CI arms (n = 47), at 1, 6, and >12 months after diagnosis. A cross-sectional control group consisted of parents of 70 patients in first remission before the prospective study. Parent questionnaires, staff and parent ratings, and data on medications administered, technical difficulty of the procedure, and needle insertions were obtained for each procedure. This article reports on the final data point for the project (>12 months). RESULTS: Mothers and nurses reported lower levels of child distress in the CI than the PO group. The CI and PO groups showed lower levels of child and parent distress than the cross-sectional control group. Distress decreased throughout the time, and child age was inversely related to distress (younger children had more distress) regardless of group. Child distress was associated with staff perceptions of the technical difficulty of the procedure and with child age, but not with medications administered. CONCLUSIONS: The data showed that pharmacologic and psychologic interventions for procedural distress were effective in reducing child and parent distress and support integration of the two approaches. Younger children experienced more distress and warranted additional consideration. Staff perceptions of the technical difficulty of procedures were complex and potentially helpful in designing intervention protocols.

Neuropsychological outcome of children undergoing bone marrow transplantation.

The purpose of the study was to prospectively evaluate the neuropsychological functioning of children and adolescents receiving a bone marrow transplant (BMT). One hundred and twenty-two children with malignant or nonmalignant disorders and no previous cranial radiation therapy received a pre-BMT neuropsychological evaluation. Surviving children received a 1 year post-BMT neuropsychological evaluation. Patients were placed in a chemotherapy only (chemo) or a chemotherapy and total body irradiation (chemo + TBI) group for statistical analysis. The data were analyzed by t-tests for paired samples. There were no statistically significant differences. Regression analysis failed to identify treatment, age and gender effects. The results suggest that global and specific areas of neuropsychological functioning 1 year post-BMT were not detrimentally affected by chemotherapy or chemotherapy with total body irradiation.

Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers.

OBJECTIVE: To predict posttraumatic stress symptoms in parents of survivors of childhood cancer, using as predictors the following: personality (trait anxiety); current family and individual variables (perceived life threat, perceived treatment intensity, life events, family functioning, and social support); posttreatment variables (time since treatment ended, child anxiety, medical sequelae); and treatment events (age at diagnosis, radiation therapy, intensity of treatment). METHOD: Mothers and fathers of 6- to 20-year-old survivors of childhood cancer (n = 331 families) completed a questionnaire battery in this two-site study. The outcome variable was the Posttraumatic Stress Disorder Reaction Index. Multiple regressions and path analyses were used to test the model. RESULTS: For both mothers and fathers, anxiety was the strongest predictor of posttraumatic stress symptoms. The current family and individual variables also contributed significantly, particularly with respect to the individual contributions of perceived life threat, perceived treatment intensity, and social support. Objective medical data did not contribute to posttraumatic stress symptoms. CONCLUSIONS: Parental anxiety warrants attention throughout the course of treatment for childhood cancer and after treatment ends. Beliefs about past and present life threats associated with cancer treatment and family and social support are other important targets for intervention.

Families of chronically ill children: a systems and social-ecological model of adaptation and challenge.

A family systems model is presented for understanding adaptation and coping in childhood chronic illness. The importance of a systems perspective in work with children and families who may not display psychopathology is stressed. A general overview of systems and social-ecological theories relevant to children with chronic illnesses and their families is presented. Literature on stress and coping in these families is reviewed, then some of the unique issues that merit consideration in this area of research and intervention are examined. Finally, the importance of these models for responding to the growing number of families with children with AIDS is discussed.

Young adult children of alcoholic fathers: depressive experiences, coping styles, and family systems.

College students with alcoholic fathers (adult children of alcoholics, ACA; n = 84) and with nonalcoholic parents (n = 123) were studied with regard to perceptions of their families, depressive experiences, and coping styles within a developmental model of depression that focuses on object representations (Blatt, 1974). Eight measures were used. Multivariate analyses of variance showed that ACAs differed in family perceptions (p less than .0001), with paternal inconsistency discriminating most effectively between groups. As predicted, ACAs exhibited greater introjective depression (p less than .01) but no increase in anaclitic depression. Also, ACAs relied more on aggressive defenses (p less than .01). Findings demonstrate that young adult children of alcoholic fathers manifest distinct, identifiable emotional characteristics and suggest that Blatt's model of depression may provide a useful theoretical context for understanding certain effects of paternal alcoholism.

Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers.

Psychological sequelae are examined in 130 former childhood leukemia patients and 155 comparison participants and their parents. The major dependent variables are symptoms of anxiety and posttraumatic stress, family functioning, and social support. Multivariate analyses of covariance indicated significantly more posttraumatic stress symptoms in mothers and fathers of childhood leukemia survivors (p < .001) and no differences between survivors and peers. There were no significant group differences for family functioning or social support, although they were associated with anxiety and posttraumatic stress outcomes. Current child age, age at diagnosis, and months off treatment were not significantly correlated with outcome. These findings document the long-term impact of childhood cancer treatment on parents. The lack of significant differences for survivors argues for further attention to the relevance of posttraumatic stress disorder for childhood cancer survivors. The clinical implications are that psychological interventions are needed during and after cancer treatment.

Family functioning in families with older institutionalized retarded offspring.

Psychological distress, marital satisfaction, family adaptability, and cohesion are explored in 31 families with mentally retarded (MR) institutionalized offspring (late adolescence and young adulthood) and 38 comparison families. Multivariate analyses indicate no differences between the groups, although univariate analyses point to higher levels of cohesion in the families with MR offspring and the importance of the construct of adaptability in understanding family functioning. The results are discussed in terms of the adaptive coping mechanisms of the families with MR offspring and the implications of this for intervention, research, and policy.

Families with disabled children: stress and social networks in three samples.

Mothers and fathers of 125 handicapped/chronically ill children were compared with parents of 127 matched nondisabled children from three separate samples with respect to personal stress, marital satisfaction, and social network size and density. Only mothers of disabled children experienced higher levels of stress than comparison parents. No differences were found in marital satisfaction. Few group differences were found for social network variables, although mothers of handicapped children had higher-density networks than comparison mothers. A series of ANOVAs examined differences among the three types of families of handicapped children. Significant differences among the groups were found for social network but not family stress variables. The results are discussed in terms of general differences between families with and without a disabled child, and point to the need to identify patterns within different types of family systems in conducting future research in this area.

Phenylalanine control and family functioning in early-treated phenylketonuria.

The association between effective metabolic control and patients' intelligence test performance and behavior in phenylketonuria (PKU) has been demonstrated frequently. The present study reexamined this relationship in a population of 41 young children with early-treated PKU, and added a dimension of family investigation to determine relationships between dietary phenylalanine control and patient functioning, family functioning and phenylalanine control, and family functioning and patient functioning. Significant correlations were found between concurrent phenylalanine control and patients' intelligence test scores, and lifetime phenylalanine control and patients' social competence. Parent-report measures of family psychological adjustment, stress, interaction, and socioeconomic status showed no significant association with children's dietary phenylalanine control. Family cohesion and adaptability correlated positively with patients' cognitive performance. Results support a policy of diet continuation in PKU, and suggest that family interaction patterns influence patient functioning. Longitudinal study of family factors in PKU is indicated.

Is posttraumatic stress a viable model for understanding responses to childhood cancer?

The application of a trauma model to understanding the impact of life-threatening illness has been informative. In the case of childhood cancer patients, it appears clear that a full PTSD syndrome is not the normative response either during or after treatment. Some aspects of cancer diagnosis and treatment, however, are experienced as traumatic by a subset of children, some of whom report symptoms of posttraumatic stress. There is some evidence that children may respond to cancer treatment as a repeated trauma, with the result of more subtle changes in affect modulation, world view, and interpersonal relationships. This area requires further investigation. The trauma model is also useful in understanding parental responses to childhood cancer. The epidemiologic data to date regarding posttraumatic stress symptoms in parents of childhood cancer survivors is consistent with the trauma literature regarding responses to moderate-magnitude traumatic exposure. These findings have important implications for clinical interventions for families of childhood cancer patients. More research is needed in the prediction and prevention of the long-term distress reported by so many parents of children who have undergone successful treatment for life-threatening illness.

Families with physically handicapped children: social ecology and family systems.

This paper reviews research on families with physically handicapped children, and integrates this work within a social ecological perspective. Methodological difficulties in past research that contribute to a lack of consensus in the area are discussed. Research on stresses experienced by various subsystems within families with handicapped children is presented, with recommendations for future family-oriented research and intervention. The interactions of families with handicapped children with their social support networks are reviewed, underscoring the importance of these processes for coping and adaptation.

A contextual family/systems approach to pediatric psychology: introduction to the special issue.

Introduced the special issue on "Family Systems in Pediatric Psychology" by organizing the papers around a series of themes relevant to understanding families in pediatric psychology. Themes reflect the relationships between parent and child adjustment, family subsystems, legacies and traditions, social support systems, family interventions, the constancy of change in families, the challenges of conducting longitudinal research, the inclusion of fathers, and the importance of a competency framework in pediatric family psychology. The paper concludes with recommendations for pediatric family psychology, including suggestions for increasing diversity, expanding methodological approaches, and enhancing family competence.

Stress, coping, and life change in the single-parent family.

Self-perceived competence in three roles (parent, social participant, self-supporter) was examined in relation to life satisfaction in a sample of 47 divorced, employed, single parent, middle-income women. Parenting was found to be the role of greatest perceived competence, and self-supporter the role of lowest perceived competence. Competence as a self-supporter was the strongest predictor of life satisfaction. Life satisfaction did not differ significantly between groups defined by length of time as single parents. For women separated less than 3 years, the social participant was the role of least perceived competence and the best predictor of life satisfaction. For those separated more than 3 years, the three roles were nearly equal in perceived competence, but competence as self-supporter was the best predictor of life satisfaction.

The structure and function of social support networks in families with handicapped children.

Three structural characteristics of social support networks (size, density, and boundary density) and two relationship characteristics (reciprocity and dimensionality) were assessed in a sample of 56 families with a child with spina bifida and 53 matched comparison families. The results indicate that social networks of families with handicapped children tended to be smaller than the networks of comparison families, particularly with regard to mothers' total and friendship networks. The networks of families with handicapped children were more dense as well. As predicted, there was greater boundary density in spousal networks in families with handicapped children. Differences in network reciprocity were inconclusive while the results indicate that families with handicapped children tended to rely more heavily upon multidimensional network contacts than did comparison families. The results are discussed in light of our understanding of stress, social support, and the social ecological context of families.

Stress in families of children with myelomeningocele.

Three aspects of stress were investigated in 56 families with a child with myelomeningocele and in 53 matched comparison families. Children with myelomeningocele were found to have lower self-concepts than the comparison children, but this did not apply to the siblings in the two groups. Severity of handicap was related to marital satisfaction, in that parents of more severely handicapped children had higher levels of marital satisfaction than parents of less severely involved children. The findings imply that ways should be found of improving the self-concepts of children with myelomeningocele, and of examining interrelationships between the child's self-concept and patterns of family interaction.

Brief report: parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends.

Evaluated relationships between parenting stress and parent-rated child quality of life during treatment for childhood leukemia and later parental posttraumatic stress symptoms and parent and child anxiety after completion of cancer treatment in 29 families of patients with leukemia. Correlations among in-treatment and off-treatment variables showed strong patterns of association between parenting stress during treatment and later parental adjustment, for both mothers and fathers. Parent-rated child quality of life was also significantly associated with later adjustment for mothers and children. Despite the small sample, data point to the importance and consistency of parental reactions from diagnosis through the end of treatment and have clinical implications for psychosocial services during and after treatment.

Families of young adolescents who have survived cancer: social-emotional adjustment, adaptability, and social support.

Young adolescent (10-15 year old) survivors of childhood cancer and their families (n = 35) completed self-report measures of perceived self-competence, social support, child behavior, parental distress, and family adaptability and cohesion, at two data points, 6 months apart. Relative to instrument norms and a comparison group (n = 13), survivors and their families scored within normative levels. The overall lack of group differences is discussed in terms of the implications of tests of the null hypothesis for families with chronically ill children. Changes over time for the survivors suggest a decline in available social support. Parents of survivors who received educational assistance reported less family adaptability and more distress than parents of survivors not receiving these services.