In response to a long history of problems with defining and measuring fatigue, the University of Kansas School of Nursing established a Center for Biobehavioral Studies of Fatigue Management to facilitate the study of fatigue in diverse populations. The purpose of this article is to review past efforts to define and measure fatigue and the conceptual problems relevant to currently used measures of fatigue. Several distinct characteristics and corresponding measures of fatigue are identified and a definition and framework for the study of fatigue are discussed. Future research on fatigue must attend to the conceptual distinctions among various measures and the measures of fatigue most appropriate to the goals of a study.
This study is a secondary analysis of data gathered during baseline data collection prior to a cognitive-psychosocial-respite intervention provided in a randomized controlled trial (RCT). Content analysis was used to identify themes in parents' responses to an open-ended item about their perceptions of the effects on siblings of having a brother or sister who has either cancer or cystic fibrosis (CF). Of 91 themes tallied in the cancer group (n = 29), 74.5% reflected negative manifestations of increased risk in siblings, 1.1% no risk; and 24.2%, positive outcomes. Of 53 themes tallied in the CF group (n = 15), the same three categories had 67.9 %, 0%, and 32.1%, respectively. Contemporary life in these families portrayed in parents' descriptions not only validate the rationale for the RCT done, but also suggest the need in ambulatory pediatrics for intervention research on these vulnerable populations.
Symptom monitoring by parents/caregivers of children with cancer and what the caregiver and child did to help alleviate symptoms during chemotherapy were studied. The Therapy-Related Symptom Checklist (TRSC) child version was administered to parents/caregivers of 11 children and adolescents (mean age, 10.4 years; SD, 6.1 years; range, 2-18 years; 45% were boys). The Karnofsky scale was completed by clinicians to rate the child's functional status. The TRSC child version and functional status scores were inversely related. All children experienced nausea; the most frequent symptoms reported were in TRSC subscales: fatigue, nausea, eating, fever, oropharynx, pain, and hair loss. Care strategies that helped were distraction, massage, mouth rinses, and vitamins; some reported that their child received medications for pain, nausea, and vomiting. Using complementary medicine categories, the care strategies were diet/nutrition/lifestyle change (eg, more high-fat, high-calorie foods; new foods; any food the child likes; and much sleep and rest); mind/body control (eg, play, video games, television, reading, activity puzzle, breathing exercises, relaxation methods, and prayer); manual healing method (massage and skin-to-skin contact); and biologic treatments (vitamins). The first 2 categories were the most used. Systematic assessment with a self-report checklist enables the provider to identify and prioritize (according to reported severity) those symptoms needing intervention.
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 granddaughter's 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.
Patient-reported symptom occurrence and severity scale enable health providers to prioritize, evaluate interventions, and promote/assist patients' self-care.
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