Phoebe D. Williams

Siblings and pediatric chronic illness: a review of the literature

Over forty studies published between 1970 and 1995 are reviewed to identify the extent and nature of risks to siblings of chronically ill children, and the factors that may increase or lower the risks. A considerable amount of research is available in this area within the Untied States, but is relatively understudied elsewhere. About 60% of the studies reported an increase in sibling risk, while 30% reported no risk; and 10% had positive and negative outcomes. Interventions need to focus on the entire family system.

Interrelationships among Variables Affecting Well Siblings and Mothers in Families of Children with a Chronic Illness or Disability

A structural equation model (SEM) examined interrelationships among psychosocial variables known to affect the health and development of well siblings and parents when a child with a chronic illness or disability is a member of the family. Using dyads of 252 well children and parents, socioeconomic status (SES) and family cohesion were associated with the parent-reported behavior of the well sibling. SES also influenced the mood of the mother that in turn influenced family cohesion. The well siblings knowledge about the illness of the brother or sister, attitude toward the illness, mood, self-esteem, and feelings of social support were interrelated and related to the behavior of the well sibling. The SEM suggests that interventions may be directed at several points in these interactions including boosting knowledge levels of the well sibling, improving family cohesion, and assuring adequate “income” support to the family through income transfers or in-kind services.

A community-based intervention for siblings and parents of children with chronic illness or disability: the ISEE study.

OBJECTIVE Siblings of children with chronic illness or disability have been reported to have a 1.6 to 2.0 risk for behavioral and mental health problems. Our objective was to examine the effects of an intervention for siblings (age 7-15 years) of children with chronic illness or disability. METHOD A randomized, three-group repeated-measures design was used: full intervention (n=79), partial intervention (n=71), and a waiting list control group (n=102). Outcomes were sibling knowledge about illness, behavior problems, social support, self-esteem, attitude, and mood measured over four postintervention periods. Covariates were family cohesion, maternal mood, socioeconomic status, and well sibling age. The full intervention included structured teaching and psychosocial sessions at a 5-day residential summer camp. The partial intervention included camp only. Treatment effects were estimated by using generalized estimating equation panel analyses. RESULTS The full treatment group showed significant improvements on all six outcomes over most periods, the partial treatment group on three outcomes, and the control group on two outcomes. Improvements in outcomes ranged from 5% to 25% increases over baseline measures. CONCLUSIONS A dose-response relationship to intervention was found. Treatment gains were sustained over a period of 12 months.

A comparison of two methods of assessing cancer therapy-related symptoms.

Patients undergoing outpatient cancer treatment experience a multitude of therapy-related symptoms. Complete assessment of these symptoms is essential for proper interventions to be provided and to enhance the quality of life of the patient. The primary purposes of the study were to compare the number of symptoms identified by a self-report instrument with those documented in the patients medical record, and to examine the relationship between the number of self-reported symptoms and quality of life. Ninety-one oncology patients from three outpatient clinics participated in the study. The Oncology Treatment Toxicity Assessment Tool (OTTAT) and the Quality of Life Index (QLI) are self-report instruments, each with 37 items and 18 items, respectively. The mean number of symptoms reported on the OTTAT (mean = 11; range 0–37; SD 8) was significantly higher than that documented in the medical record (mean = 1.5 range 0–9; SD 1.6), (t = 8.7, p = 0.001). Higher scores on the OTTAT were significantly related to lower scores on the QLI (r = −0.67, p = 0.0001).

Cancer treatment, symptom monitoring, and self-care in adults: pilot study.

A descriptive study was conducted on self-reported symptoms and self-care by 37 adults receiving chemotherapy primarily for leukemia, lymphomas, or breast cancer or radiation therapy for head and neck or lung cancers. The Therapy-Related Symptom Checklist and demographic and interview forms on self-care for identified symptoms were used. Severe symptoms on the Therapy-Related Symptom Checklist subscales fatigue, eating, nausea, pain, numbness in fingers/toes, hair loss, and constipation were reported by patients on chemotherapy. Those on radiation therapy reported severe symptoms on the eating, fatigue, skin changes, oropharynx, and constipation subscales. Self-care strategies were in the following categories, using complementary medicine as framework: diet/nutrition/lifestyle change (eg, use of nutritional supplements; modifications of food and of eating habits; naps, sleep, and rest); mind/body control (eg, relaxation methods, prayer, music, attending granddaughters sports events); biologic treatments (vitamins); herbal treatments (green mint tea); and ethnomedicine (lime juice and garlic). The first category was predominantly used by patients in both treatment types. Medications were prescribed also to help control symptoms (eg, pain and nausea). Symptom monitoring and self-care for symptoms identified may be facilitated by the Therapy-Related Symptom Checklist; based on reported symptom severity, care providers may prioritize interventions. A larger study needs to be done on (a) the use of the Therapy-Related Symptom Checklist as a clinical tool to assess symptoms that oncology patients experience during therapy; (b) whether care providers, based on patient-reported symptom severity, can prioritize interventions--and how this influences the efficiency of care; (c) the self-care strategies used by patients on chemotherapy or radiation therapy or both; and (d) how useful these strategies are in alleviating symptoms.

Treatment type and symptom severity among oncology patients by self-report

Oncology patients receiving chemotherapy (n=109) and radiation therapy RT (n=161) reported symptom concerns and severity on the 25-item therapy-related symptom checklist (TRSC). Secondary analysis of the self-reports of the two treatment groups was done using the Mann-Whitney U Test. Thirteen symptoms differed significantly between the two groups. RT patients reported significantly greater severity of five symptoms (p<0.05) during therapy. Chemotherapy patients reported significantly greater severity of eight different symptoms. The other 14 items showed a heterogeneous pattern of self-reported patient symptom concerns. The TRSC appears to be a clinically useful self-report checklist that captures the more important symptom concerns of both RT and chemotherapy patients. Earlier efforts to develop this checklist are reviewed briefly.

The Humpty Dumpty Falls Scale: A Case–Control Study

PURPOSE The purpose of this descriptive study was to assess whether the Humpty Dumpty Falls Scale (HDFS) identifies hospitalized pediatric patients at high risk for falls. DESIGN AND METHODS The study was a matched case-control design. A chart review of 153 pediatric cases who fell and 153 controls who did not fall were pair-matched by age, gender, and diagnosis. RESULTS High-risk patients fell almost twice as often as low-risk patients (odds ratio 1.87, confidence interval = 1.01, 3.53, p = .03). PRACTICE IMPLICATIONS A Falls Prevention Pediatric Program with the HDFS tool addresses the Joint Commission Patient Safety Goals, but further research is needed to examine HDFS sensitivity-specificity.

A symptom checklist for children with cancer: the Therapy-Related Symptom Checklist-Children.

Background: Symptom monitoring and alleviation are basic to the care of children and adolescents with cancer. A symptom checklist helps facilitate this process. Objectives: The primary objective of this study was to calibrate a child-friendly, clinically usable checklist capturing symptom occurrence and severity; a secondary objective was to examine age group differences: 5 to 11 years (n = 222) and 12 to 17 years (n = 163) and sex differences: males (54%) and females (46%), and correlate symptom severity, functional status, and quality of life. Methods: Three hundred eighty-five children/adolescents at 5 university-affiliated outpatient oncology clinics: central, western, eastern, southeastern United States. Diagnoses were acute lymphoblastic leukemia (45%), solid tumors (14%), nervous system tumors (18%), and others (23%). Principal component factor analysis, confirmatory factor analysis, correlational statistics, t test, Wilcoxon test were performed. Results: (a) Robust 30-item checklist, 7 factors; (b) 14 of 30 symptoms reported by at least 40% of patients. Top 5 are feeling sluggish (77%), nausea (72%), appetite loss (66%), irritable (61%), and vomiting (54%). (c) Sixteen of 30 symptoms reported at severity 2 or greater: “quite a bit.” (d) Therapy-Related Symptom Checklist–Children (TRSC-C) scores are as follows: range, 0 to 89; mean, 25.14 (SD, 18.68). (e) Cronbach &agr; = .9106. (f) Older children reported greater symptom severities: TRSC-C (t = 2.73, P = .003). (g) There were no sex differences on the TRSC-C total score. (h) Lansky correlations with TRSC-C (r = −0.32; P = .02); factors: nutrition related (r = −0.36; P = .05); oropharyngeal (r = −0.51; P = .0002); and respiratory (r = − 0.25; P = .06). (i) Pediatric Quality of Life Inventory correlation with TRSC−C (r = −0.68; P = .0001). Conclusion: The new TRSC-C has good measurement properties and is ready for use in clinics and research. Implications for Practice: Use of the TRSC-C is consistent with guidelines emphasizing self-report of patient symptoms, shared patient decision making, and improved communications among patients, clinicians, and significant others.

An Intervention to Manage Patient-Reported Symptoms During Cancer Treatment

Patients with cancer receiving therapy may face a variety of complicated and stressful symptoms. Oncology nurses can advocate for patients by performing their roles as educators and comanagers of cancer-related side effects. In addition, symptom-focused education provided by oncology nurses can enable patients to administer self-care more effectively.

Communication Themes in Families of Children with Chronic Conditions

This qualitative study identified communication themes among well siblings, parents, and others within families of children with chronic conditions. Semi-structured interviews of 30 parent–well sibling dyads were content analyzed from a larger study of families of children with chronic conditions. Four themes emerged: communication as a reflection of family roles and relationships, giving voice, staying connected, and struggling for normalcy.