Olle Jane Z. Sahler

A multicenter, randomized clinical trial of a cognitive remediation program for childhood survivors of a pediatric malignancy.

Survivors of childhood cancer whose malignancy and/or treatment involved the central nervous system may demonstrate a consistent pattern of neurocognitive deficits. The present study evaluated a randomized clinical trial of the Cognitive Remediation Program (CRP). Participants were 6- to 17-year-old survivors of childhood cancer (N = 161; 35% female, 18% Hispanic, 10% African American, 64% Caucasian, 8% other) who were at least 1 year off treatment and who manifested an attentional deficit. They were enrolled at 7 sites nationwide. Two thirds of the participants were randomly assigned to cognitive remediation. All participants were assessed using a battery of academic achievement/neurocognitive tests and parent/teacher measures of attention. The CRP resulted in parent report of improved attention and statistically significant increases in academic achievement. Effect sizes were modest but were comparable with those for other clinical trials of brain injury rehabilitation and for psychological interventions in general. The CRP is presented as a potentially beneficial treatment for many survivors of pediatric cancer. Long-term clinical significance remains unproven. Further work is needed to improve effect sizes and treatment compliance and to address the needs of other populations with pediatric brain injury.

Using Problem-Solving Skills Training to Reduce Negative Affectivity in Mothers of Children With Newly Diagnosed Cancer: Report of a Multisite Randomized Trial.

Mothers of children with cancer experience significant distress associated with their childrens diagnosis and treatment. The efficacy of problem-solving skills training (PSST), a cognitive-behavioral intervention based on problem-solving therapy, was assessed among 430 English- and Spanish-speaking mothers of recently diagnosed patients. Participants were randomized to usual psychosocial care (UPC; n=213) or UPC plus 8 sessions of PSST (PSST; n=217). Compared with UPC mothers, PSST mothers reported significantly enhanced problem-solving skills and significantly decreased negative affectivity. Although effects were largest immediately after PSST, several differences in problem-solving skills and distress levels persisted to the 3-month follow-up. In general, efficacy for Spanish-speaking mothers exceeded that for English-speaking mothers. Findings also suggest young, single mothers profit most from PSST.

Medical Education About End-of-Life Care in the Pediatric Setting: Principles, Challenges, and Opportunities

Objective. To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting. Methods. A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institutes Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children. Conclusions. Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed. These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient. Similarly, these principles of effective communication, ethical decision-making, and attention to the quality of life of patients, families, and providers apply to the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curriculum, but rather taking better advantage of the many teachable moments provided by caring for a dying patient.

Problem-solving skills training for mothers of children with newly diagnosed cancer: a randomized trial.

ABSTRACT. Mothers of children with serious illnesses have lower levels of well-being than mothers in the general population. Problem-solving therapy (PST), a cognitive-behavioral intervention, has been shown to be effective in treating negative affectivity (depression, anxiety) and other manifestations of reduced well-being. This report describes a problem-solving skills training (PSST) intervention, based on problem-solving therapy, for mothers of newly diagnosed pediatric cancer patients. Ninety-two mothers were randomly assigned to receive PSST or to receive standard psychosocial care (Control Group). After the 8-week intervention, mothers in the PSST Group had significantly enhanced problem-solving skills and significantly decreased negative affectivity compared with controls. Analysis revealed that changes in self-reports of problem-solving behaviors accounted for 40% of the difference in mood scores between the two groups. Interestingly, PSST had the greatest impact on improving constructive problem solving, whereas improvement in mood was most influenced by decreases in dysfunctional problem solving. The implications of these findings for refinement of the PSST intervention and for extension to other groups of children with serious illnesses are discussed.

Sibling adaptation to childhood cancer collaborative study: prevalence of sibling distress and definition of adaptation levels

A multisite collaborative study assessed the frequency and intensity of emotional/behavioral distress in siblings of children with cancer. A sample of 254 siblings, aged 4 to 18 years, and their parents completed interviews and self-report measures 6 to 42 (average 22.5) months after diagnosis of cancer in a brother or sister. Matched controls were obtained from respondents to the Child Health Supplement of the National Health Interview Survey administered in 1988 (CHS88). Before diagnosis, the prevalence of parent-reported emotional/behavioral problems among siblings was similar to that in the general population (7.7% vs 6.3%; p = not significant). After diagnosis, prevalence rose to 18% among siblings. When siblings were grouped according to the presence or absence of problems exacerbated by and/or arising after diagnosis, four levels of adaptation, consistent with scores on the Behavior Problem Scales from the CHS88, emerged. This differentiation may help explain inconsistencies in sibling response reported previously and provides a framework for investigating factors that enhance adaptation. J Dev Behav Pediatr 15:353–366, 1994. Index terms: chronic illness, childhood cancer, siblings, adaptation, coping, psychosocial stress.

Specificity of Problem-Solving Skills Training in Mothers of Children Newly Diagnosed With Cancer: Results of a Multisite Randomized Clinical Trial

PURPOSE Diagnosis of cancer in a child can be extremely stressful for parents. Bright IDEAS, a problem-solving skills training (PSST) intervention, has been shown to decrease negative affectivity (anxiety, depression, post-traumatic stress symptoms) in mothers of newly diagnosed patients. This study was designed to determine the specificity of PSST by examining its direct and indirect (eg, social support) effects compared with a nondirective support (NDS) intervention. PATIENTS AND METHODS This randomized clinical trial included 309 English- or Spanish-speaking mothers of children diagnosed 2 to 16 weeks before recruitment. Participants completed assessments prerandomization (T1), immediately postintervention (T2), and at 3-month follow-up (T3). Both PSST and NDS consisted of eight weekly 1-hour individual sessions. Outcomes included measures of problem-solving skill and negative affectivity. RESULTS There were no significant between-group differences at baseline (T1). Except for level of problem-solving skill, which was directly taught in the PSST arm, outcome measures improved equally in both groups immediately postintervention (T2). However, at the 3-month follow-up (T3), mothers in the PSST group continued to show significant improvements in mood, anxiety, and post-traumatic stress; mothers in the NDS group showed no further significant gains. CONCLUSION PSST is an effective and specific intervention whose beneficial effects continue to grow after the intervention ends. In contrast, NDS is an effective intervention while it is being administered, but its benefits plateau when active support is removed. Therefore, teaching coping skills at diagnosis has the potential to facilitate family resilience over the entire course of treatment.

Interventions to improve neuropsychological functioning in childhood cancer survivors

A very brief historical review on the identification of neurocognitive deficits in patients treated for a pediatric malignancy that involved CNS disease, treatment, or a combination is provided. This review is particularly directed toward providing a foundation upon which the introduction of specific brain injury rehabilitation efforts and subsequent research were introduced into this population of patients. Three primary methods by which clinicians and researchers have attempted to improve neurocognitive functioning with survivors of pediatric cancer that have suffered a CNS insult are identified. From a pharmacological perspective, research is reviewed that documents the potential beneficial effects of stimulant medication. Results of two drug trials that used double-blind crossover methodology are reviewed, and it is highly likely that medications may be of significant benefit to pediatric cancer survivors who are experiencing attentional deficits, impairment in social functioning, and also declines in academic achievement. We next describe psychologically based brain injury rehabilitation efforts, including on-treatment schooling and reentry, within the survivor population. A phase III clinical trial of a comprehensive rehabilitation approach is discussed in detail. New directions in the area of brain injury rehabilitation for childhood cancer survivors are presented, and the need for professionals in this area to work toward a team approach is emphasized.

Sibling adaptation to childhood cancer collaborative study : The association of sibling adaptation with maternal well-being, physical health, and resource use

This multi-institutional study investigated the association of behavioral/emotional adaptation among siblings of children with cancer with maternal general well-being, physical health, and resource use. One hundred seventy siblings and mothers completed standardized interviews and self-report measures 6 to 42 months after the cancer was diagnosed. As a group, mothers of children with cancer reported significantly lower levels of well-being than matched controls. When stratified according to the level of the siblings behavioral/emotional adaptation, mothers of siblings in the Dysfunctional group (1) reported the lowest levels of well-being; (2) during the preceding year, were more likely to have sought professional services than mothers of children in the Resilient group; and (3) were least likely to have found social support helpful. Our results support an association between maternal well-being and sibling adjustment but show it is unlikely that nonspecific social support will improve adjustment. The rationale for problem-solving training for mothers is provided.

Qualitative Analysis of the Role of Culture in Coping Themes of Latina and European American Mothers of Children With Cancer

It has been well established that mothers of children diagnosed with cancer experience high levels of distress. Latina mothers may be at risk for higher levels of distress related to language barriers, cultural factors, and economic, immigration, and acculturation stressors. Despite the increasing US Latino population, few studies have examined the role of culture within pediatric oncology, including how mothers cope with their childs cancer. This study used qualitative analysis of 24 sessions from 3 Latina and 3 European American mothers of children recently diagnosed with cancer. The session transcripts were divided into a total of 2328 thought segments that were then analyzed for themes using a collaborative iterative process. Analysis identified 9 shared coping themes that included, with some variations: gathering information, professional help-seeking, activities, problem solving, positive thinking, present orientation, reframing, avoidance, and religion. Three themes were culture specific: only European American mothers discussed compromise, whereas normalization and perspective taking were unique to the Latina mothers and suggest that the cultural value of simpatía influences coping. Clinical and research recommendations are discussed.

Brief Report: Problem Solving and Maternal Distress at the Time of a Child's Diagnosis of Cancer in Two-Parent Versus Lone-Parent Households

OBJECTIVE To examine negative affectivity and problem-solving abilities for lone mothers and those who are married/partnered subsequent to a childs diagnosis with cancer. METHODS Negative affectivity and problem-solving strategies were assessed for 464 mothers (87 lone and 377 married/partnered) within 2-16 weeks of their childs diagnosis with cancer. RESULTS The two groups of mothers did not differ significantly on measures of perceived posttraumatic stress or problem-solving; lone mothers reported significantly more symptoms of depression. This difference was no longer significant when maternal education was taken into account. CONCLUSIONS Negative affectivity and problem-solving abilities were similar for lone mothers and those that are married/partnered shortly after their child has been diagnosed with cancer. Findings are discussed within the context of contemporary strategies to assess marital status as proxy variable for various underlying constructs.