Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends.

OBJECTIVE: To evaluate prospectively the association between parental anxiety during treatment for childhood leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. A secondary goal is to explore concurrent variables associated with parental avoidance after treatment ends. METHODS: This is a longitudinal follow-up study of 113 parents of children treated for leukemia who previously participated in a study of procedural distress during treatment. Data included parental self-report questionnaires completed during treatment and after treatment. RESULTS: Using hierarchical multiple regression, we found anxiety during treatment to be a significant predictor of later PTSS for mothers, but not fathers. Anxiety, self-efficacy, posttraumatic growth and length of time since treatment ended were associated with parental avoidance. CONCLUSIONS: Highly anxious parents are at risk for PTSS and may benefit from approaches that decrease anxiety during treatment and afterward. Enhancing self-efficacy related to follow-up care and identifying positive aspects of the traumatic experiences are suggested as treatment approaches for families after cancer treatment.

Childhood illness-related parenting stress: the pediatric inventory for parents.

OBJECTIVE: To develop a measure of parenting stress related to caring for a child with an illness and to evaluate its psychometric properties with a group of parents of children with cancer. METHODS: One hundred twenty-six parents (105 mothers, 21 fathers) of children (65 boys and 61 girls, M: age: 12.75 years) being followed by an oncology service were assessed using the 42-item self-report Pediatric Inventory for Parents (PIP). Internal consistency was assessed and construct validity was investigated with standardized, general self-report measures of anxiety and parenting stress. RESULTS: Internal consistency reliability for the PIP was high (Cronbach alpha range:80-.96). PIP scores were significantly correlated with a measure of state anxiety and also with parenting stress, demonstrating construct validity. After we controlled for demographic variables and general parenting stress, PIP scores showed strong independent associations with state anxiety. CONCLUSIONS: Preliminary data indicate that the PIP is a reliable and valid tool to assess parenting stress in pediatric oncology populations. As a measure of illness-related parenting stress, the PIP may be used to provide information about parent well-being that extends beyond that obtained from general measures.

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.

Posttraumatic stress disorder: understanding the psychosocial impact of surviving childhood cancer into young adulthood.

Little research has been done to explore how the psychological symptoms of child and adolescent cancer survivors change in the decades following successful treatment. This article examines these changes with a focus on the utility of a posttraumatic stress framework for understanding the long-term coping issues that individuals face as they mature and make transitions to young adulthood. First, the literature supporting the use of a posttraumatic stress framework in child and adolescent survivors is reviewed. Developmental contributions to changes and increases in posttraumatic symptomatology during young adulthood are then discussed and posttraumatic symptoms most often seen in this group are presented. Preliminary research with young adult survivors is also reviewed and discussed as support for a posttraumatic stress framework with this population. Ongoing research efforts aimed at elaborating on this framework are described. Finally, clinical implications for health care providers are explored, and guidelines for assessing the impact of posttraumatic stress on young adults' use of health care resources are offered.

Surviving cancer competently intervention program (SCCIP): a cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families.

Psychological reactions to having had childhood cancer often continue after treatment ends, for survivors and their parents. Based on our previous research, we developed an intervention program for adolescent survivors of childhood cancer, their parents, and siblings. Surviving Cancer Competently: An Intervention Program--SCCIP--is a one-day family group intervention that combines cognitive-behavioral and family therapy approaches. The goals of SCCIP are to reduce symptoms of distress and to improve family functioning and development. SCCIP is described and data from a pilot study of 19 families are presented. Program evaluation data indicated that all family members found SCCIP helpful. Standardized measures administered before the intervention and again at 6 months after SCCIP showed that symptoms of posttraumatic stress and anxiety decreased. Changes in family functioning were more difficult to discern. Overall, the results were promising with regard to the feasibility of the program and its potential for reducing symptoms of distress for all family members.

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.

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.

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.

Predictors of posttraumatic stress symptoms in childhood cancer survivors.

OBJECTIVE: The diagnosis and treatment of childhood cancer are extremely stressful experiences, with psychological sequelae which can persist many years after the end of treatment. This study investigated the relative contributions of general anxiety, treatment intensity, medical sequelae of treatment, and the subjective appraisal of life threat and treatment intensity to later posttraumatic stress symptoms, such as intrusive memories, avoidance, and hypervigilance. METHOD: One hundred eighty-six childhood cancer survivors ages 8 through 20 years, off of treatment for more than 1 year, and their parents completed questionnaires. Medical sequelae of treatment and intensity of treatment were rated by a pediatric oncologist. RESULTS: Significant, independent predictors of persistent posttraumatic stress symptoms included: 1) the survivor's retrospective subjective appraisal of life threat at the time of treatment, and the degree to which the survivor experienced the treatment as "hard" or "scary"; 2) the child's general level of anxiety; 3) history of other stressful experiences; 4) time since the termination of treatment (negative association); 5) female gender; and 6) family and social support. Mother's perception of treatment and life threat contributed to anxiety and subjective appraisal for the survivor, but did not independently contribute to posttraumatic stress symptoms. CONCLUSIONS: Symptoms of posttraumatic stress seem to decrease with time, but are persistent in a subset of childhood cancer survivors. Other than time and gender, the predictors of posttraumatic stress symptoms are primarily subjective factors (ie, anxiety and subjective appraisal) rather than objective stressors of treatment and medical sequelae.

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.

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.

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 surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children.

Compared posttraumatic stress symptoms in 309 8- to 20-year-old survivors of childhood cancer and their parents with healthy children and their parents who responded to child-related stressors. The relationship of child demographic, cancer and treatment, and family and social support factors with posttraumatic stress symptoms was analyzed also. Results indicate that mothers and fathers of childhood cancer survivors showed significantly higher levels of posttraumatic stress symptoms than comparison parents. The survivors themselves did not differ from their healthy counterparts. Past perceived life threat and family and social support resources contributed to posttraumatic stress symptoms in survivors and their parents. Survivor mother and child and survivor father and child symptoms were associated. Implications for the long-term functioning of families of survivors and suggestions for preventive interventions are discussed.

A randomized controlled prospective outcome study of a psychological and pharmacological intervention protocol for procedural distress in pediatric leukemia.

Evaluated distress during invasive procedures in childhood leukemia. Child and parent distress, assessed by questionnaires and ratings, were compared in two arms of a randomized, controlled prospective study, one a pharmacologic only (PO) (n = 45) and the other a combined pharmacologic and psychological intervention (Cl) (n = 47), at 1, 2, and 6 months after diagnosis. The cross-sectional control group (CC) consisted of parents of 70 patients in first remission prior to the prospective study. Mothers' and nurses' ratings of child distress indicated less child distress in the Cl group than the PO. When contrasted with the CC group, the Cl group showed lower levels of child distress. Data showed decreases over time in distress and concurrent improvements in quality of life and parenting stress and supported an inverse association between distress and child age.

Adjustment in childhood brain tumor survival: child, mother, and teacher report.

Examined the adjustment of 6- to 18-year-old children and adolescents (n = 38) 2 to 5 years postdiagnosis of brain tumor with respect to standardized measures of anxiety and depression; self-perceptions; and adaptive living skills. Child, mother, and teacher report data were used. Maternal adjustment (anxiety and depression, parenting stress) was also assessed. Children and adolescents surviving brain tumors reported themselves to be generally within the normal range. However, maternal ratings of social problems were higher than normative scores and significantly lower than norms on social problems, scholastic competence, and communication skills. Teacher ratings on the Teacher Rating Form were all within normal limits. Maternal adjustment measures were within the normal range, although the Parent-Child Dysfunctional Interaction subscale of the Parenting Stress index was elevated. No differences in scores were found between children in regular and special education, or between children who had received radiation and those who did not. This sample of survivors of pediatric brain tumors and their mothers had relatively mild problems in adjustment, supporting a competency-based view of the adaptation of pediatric patients and their families.

Posttrauma symptoms in childhood leukemia survivors and their parents.

This study used a self-report measure of posttraumatic stress (the Posttraumatic Stress Disorder Reaction Index) to evaluate 64 pediatric leukemia survivors age 7-19 years and their parents (mothers n = 63, fathers n = 42). Based upon normative data for the Reaction Index, 12.5% of the survivors, 39.7% of the mothers, and 33.3% of the fathers reported symptoms consistent with a severe level of posttraumatic stress. The data indicate that a substantial subset of pediatric cancer survivors and their parents experience severe symptoms that can be understood within a posttraumatic stress model. The data are discussed with regard to pediatric follow-up care for cancer survivors, as well as in terms of preventive steps that could be taken to lessen the traumatic aspects of pediatric cancer treatment.

The Perception of Procedures Questionnaire: psychometric properties of a brief parent report measure of procedural distress.

Reported the reliability and validity of the Perception of Procedures Questionnaire (PPQ), a 19-item parent-report measure developed to assess child and parent distress related to lumbar punctures and bone marrow aspirates in the diagnosis and treatment of childhood cancer. PPQ data from 140 mothers and 96 fathers of children and adolescents with leukemia in a first remission were analyzed separately. Factor analyses yielded five factors for mothers and fathers: Parent Satisfaction; Child Distress: During; Child Distress: Before; Parent Distress; and Parent Involvement. Internal consistency (Cronbach's alpha) was high for the total score and the five factor scores as were interrater reliabilities between mothers and fathers. Validity was determined using the Parenting Stress Index-Short Form, the Pediatric Oncology Quality of Life Scale, and parent and nurse ratings during procedures. Factors 2 and 3, assessing child distress, show strong associations with the validation measures and support the distinction between distress before and during procedures. This developing scale is recommended for use in the assessment and evaluation of child and parent procedure-related distress in pediatric oncology.