Developing a research program on fatigue in children and adolescents diagnosed with cancer.

Fatigue may be a universal experience for children and adolescents who are being treated for a malignancy. Sadly, it may also be the most unrecognized and thus unaddressed symptom experienced by this population. Giving adequate attention to this symptom has been stymied in part by the lack of a conceptual definition of fatigue in children and adolescents with cancer and the lack of a method to accurately measure their fatigue. This article provides a descriptive overview of a clinical research program on fatigue in children and adolescents with cancer that sought to develop conceptual and operational definitions of fatigue from the perspectives of the patient, parent, and staff. The link between these definitions and planned future fatigue intervention research is also described.

Fatigue in children and adolescents with cancer: evolution of a program of study.

OBJECTIVES: To describe the development of a research program focused on cancer-related fatigue in children and adolescents and the resulting definition and model. DATA SOURCES: Research studies, review articles, and clinical examples. CONCLUSIONS: Fatigue has been identified by children and adolescents who are receiving treatment for cancer as one of the most distressing treatment-related symptoms they experience, yet fatigue is rarely assessed by health professionals and infrequently reported by patients or their parents. IMPLICATIONS FOR NURSING PRACTICE: An improved understanding of the contributory and alleviating factors that cause fatigue in this patient population will provide them with greater comfort during treatment for cancer.

Comparing patient, parent, and staff descriptions of fatigue in pediatric oncology patients.

Fatigue in children and adolescents with cancer is a disruptive symptom meriting clinical intervention by nurses, but has eluded definition, measurement, and intervention. Fatigue in these patients exists within a greater context of illness, treatment, and child and family development. Any effort to define, measure, and intervene with fatigue needs to take into consideration the major components of these children and adolescents' treatment context. The purpose of this descriptive study was to learn from three perspectives (patient, parent, and staff) how fatigue is identified and defined in 7- to 12-year-old children and in 13- to 18-year-old adolescents with cancer, and what factors contribute to or alleviate this fatigue. To elicit this information, separate focus groups were conducted with patients, parents, and staff at two pediatric oncology centers. Resulting interview data were analyzed using pragmatic and semantic content analysis techniques and the Wilson concept analysis process. Findings clearly indicated that children, adolescents, parents, and staff define patient fatigue differently. The conceptual definition from the child data emphasizes the physical sensation of the fatigue; alternating and at times merging physical and mental tiredness are emphasized in the adolescent's definition. Parents and staff view themselves as responsible for alleviating patient fatigue; patients viewed rest and distraction as their primary sources of improving fatigue. The conceptual definitions of fatigue as rendered by our three groups of participants can assist pediatric oncology patients, their parents, and staff in identifying fatigue. Factors identified by these participants as contributing or alleviating fatigue could be the basis for future interventions designed to reduce fatigue in pediatric oncology patients.

Communication about sexual issues: mothers, fathers, and friends.

PURPOSE: To identify the content, characteristics, and comfort level of discussions about sexuality held between mothers and their early adolescent children and to determine the extent to which the conversations predicted sexual values and initiation of sexual intercourse of the adolescent. METHODS: This was part of a larger study to evaluate the impact of personal family characteristics on human immunodeficiency virus risk-reduction behavior among low-income predominately African-American adolescents, ages 13-15 years. Adolescents attending a metropolitan community-based afterschool program and their mothers were invited to participate in a 1-hour interview. Mothers and adolescents were interviewed separately. The interview included questions about the type of information related to sexuality that adolescents discussed with mothers, fathers, and friends; in addition, mothers were asked what topics they discussed with their adolescents. Four hundred five adolescents and 382 mothers participated. Some mothers had more than one adolescent in the study. RESULTS: The results showed that both male and female adolescents were more likely to discuss sexual topics with their mothers than their fathers. Male adolescents were more likely than female adolescents to discuss sex-based topics with their fathers. Both male and female adolescents were less likely to discuss sex-based topics with their friends than with their mothers, but more likely to discuss these topics with their friends than their fathers. Content of conversations of male adolescents was fairly consistent among mothers, fathers, and friends, and sexually transmitted disease/acquired immune deficiency syndrome and condom use were popular topics of discussion. Female adolescents tended to talk about the menstrual cycle with their mothers, sexual abstinence with their fathers, and sexual intercourse with their friends. Adolescents who reported a greater number of topics discussed with their mothers were more likely not to have initiated sexual intercourse and to have conservative values, whereas adolescents who reported a greater number of topics discussed with their friends were more likely to report the initiation of intercourse and more "liberal" sexual values. Both male and female adolescents were most comfortable discussing sexual issues with their friends. Male adolescents were less comfortable talking to mothers, but more comfortable talking to their fathers than were females. Mothers were likely to report feeling very comfortable talking about almost all discussion areas. Fathers' comfort level was not measured, as they were not directly questioned. CONCLUSION: Early adolescence (13-15 years old) is characterized by more sex-based discussions with mothers than friends or fathers. Daughters and sons discuss different topics with their fathers, although discussion by both genders with fathers is limited. If an adolescent talks more with the mother about sexual issues than with friends, he/she is less likely to initiate sexual intercourse and more likely to have conservative values. This points to the importance of fostering good communication and comfort between parents and adolescents about sexual issues.

Fatigue in 7- to 12-year-old patients with cancer from the staff perspective: an exploratory study.

PURPOSE/OBJECTIVES: To document and analyze the perspectives of staff members who provide direct care to 7- to 12-year-old patients with cancer regarding the nature and characteristics of fatigue, causes of fatigue, and effective interventions for this population of young patients. DESIGN: Exploratory. SETTINGS: A pediatric oncology unit at a children's hospital in the southwest and a pediatric research center for childhood catastrophic diseases in the mid-south. SAMPLE: A convenience sample of 38 staff members (8 advanced practice nurses, 23 staff nurses, 2 nurses managers, 3 nutritionists, 1 chaplain, and 1 physician) whose experience in pediatric oncology ranged from two months to 23 years. METHODS: Nine open-ended questions were posed to staff members during focus group sessions. Staff responses were analyzed using content analysis techniques and the Wilson concept analysis technique. MAIN RESEARCH VARIABLE: Staff perceptions of fatigue in 7- to 12-year-old patients with cancer. FINDINGS: Fatigue is a state of diminished to complete loss of energy or will that is influenced by environmental, biochemical, personal, cultural, and treatment-related factors. This state, which may be acute, episodic, or chronic, can be accompanied by a changing emotional or mental state. CONCLUSIONS: Staff perceive fatigue to be a debilitating symptom for these children. When attempting to determine the presence or absence of fatigue, staff primarily compare a child's current state with his or her previous state rather than that of other children. Staff see themselves as having a role in causing and alleviating fatigue in this patient group. IMPLICATIONS FOR NURSING PRACTICE: Staff can use these findings to help them identify the presence of fatigue in these children and to identify contributing and alleviating factors.

Fatigue in children and adolescents with cancer.

Fatigue is a common symptom found in the adult oncology literature. However, little is known about its occurrence, causes, conceptual and operational definitions, and effective interventions in children and adolescents with cancer. The purpose of this study was to define and describe fatigue experienced by children and adolescents receiving treatment for cancer. A focus group approach was used to reveal the contextual understanding of fatigue through discussions. Eleven focus groups were convened during a 2-month period at two major children's cancer centers. Twenty-nine children participated in the focus groups: 14 were 7 to 12 years of age and 15 were 13 to 16 years of age. Focus groups were held separately for each age group, lasted from 30 to 45 minutes, and were audiotaped. The audiotapes were transcribed verbatim, and Ethnograph software was used to number the data to sort and code the information. Researchers at both study sites coded the data independently within the context of the unit of analyses, which, in this study, were the study questions. Codes and descriptions were developed for the definitions of fatigue, causes of fatigue, and what helps. Eight codes emerged from the children groups and 12 from the adolescent groups to define fatigue. Six codes were developed from the children groups and 12 from the adolescent groups to describe causes of fatigue. Three codes from the children groups and eight from the adolescent groups described what helps. This study is the first to evaluate fatigue as a symptom in children and adolescents with cancer. Findings from this study will provide the foundation for developing a conceptual model for cancer-related fatigue in children and adolescents.

Development of two instruments examining stress and adjustment in children with cancer.

The childhood cancer literature provides limited understanding of the school-age child's perception of cancer stressors and factors that contribute to adjustment in the midst of these stressors. This study evaluated the reliability and validity of two questionnaires: the Childhood Cancer Stressors Inventory (CCSI) and the Children's Adjustment to Cancer Index (CACI). The following steps were involved in the instrument development process: item development, face and content validation, internal consistency reliability, and construct validity. Questions for both instruments were developed from the literature and experience of the principal investigator. A panel of five expert pediatric oncology nurses was asked to evaluate the content validity of both instruments. All the experts rated every item a 4-5 using the content validity index, indicating that each item measured the concept addressed by the scale. Seventy-five children with cancer were asked to complete the two questionnaires and parents completed a demographic data sheet that included eight questions about the child's school attendance, performance, number of friends, and activities. Children were 7 to 13 years of age; 64% were diagnosed with a leukemia/ lymphoma, and 36% had a solid tumor. Internal coefficient reliability for the total CCSI was .82, and .91 for the CACI. The CCSI correlated negatively with the adjustment scale (r = -.63, P = 000). The number of days missed from school correlated positively with the CCSI and negatively with the CACI. Children who missed more school perceived more cancer stressors and had a lower adjustment rating. Children with lower adjustment ratings on the CACI also had fewer friends (t = 3.4(72), P = .001). Scores on both instruments demonstrated expected relationships with measures hypothesized to covary with the dimensions assessed by the new instruments. Adjustment issues for children with cancer have been difficult to assess because of the lack of appropriate instruments. These study findings indicate that the two new instruments can help to measure the child's perceptions of the cancer experience.

Therapeutic trial for infant acute lymphoblastic leukemia: the Pediatric Oncology Group experience (POG 8493).

PURPOSE: Despite improved event-free survival of older children with acute lymphocytic leukemia (ALL), infants <1 year of age continue to have a very poor prognosis. A new therapy designed specifically for infants with ALL was initiated. PATIENTS AND METHODS: From 1984 until 1990, 82 eligible infants <1 year of age were entered on a Pediatric Oncology Group (POG) protocol 8493 for infant ALL. Compared to older patients, infants at diagnosis had more overt CNS leukemia (26%), higher initial WBC count (56% >50,000/microl), and a higher likelihood of CD-10 (CALLA) negative lymphoblasts (55%). A translocation involving chromosome 11 at band q23 was detected in 27 of 64 cytogenetically informative cases. Treatment was based upon two institutional pilot studies utilizing chemotherapy doses based upon body weight. Important components included remission induction with cyclophosphamide (Ctx), vincristine (Vcr), cytosine arabinoside (Ara-C), and prednisone (Pred) (COAP); consolidation therapy with teniposide (VM-26) and Ara-C; and continuation therapy with alternating pulses of COAP with VM-26/Ara-C separated by a methotrexate (Mtx) and 6-mercaptopurine (6-MP) backbone plus CNS therapy consisting of standard triple intrathecal therapy (TIT) (Mtx/hydrocortisone/Ara-C), which avoided the use of radiotherapy in this population. RESULTS: Seventy-six infants achieved a complete remission (93%). Fifty patients have relapsed: 35 isolated marrow relapses, five isolated CNS relapses, eight combined marrow and CNS relapses, and two other relapses. Actuarial event-free survival was 28% (SE = 5%) at 4 years. Infants >274 days (9 months) at diagnosis had a better outcome than those <274 days. CONCLUSIONS: This study represents a modest outcome improvement in comparison to previous experience with ALL for infants treated on POG trials. More effective therapy is still needed for infants with ALL.

Mother and adolescent knowledge of sexual development: the effects of gender, age, and sexual experience.

As part of a larger study on the impact of personal and family characteristics on adolescents' HIV risk and risk-reduction behavior, 90 adolescents and 73 mothers were asked to define in their own words seven terms related to sexual development: ejaculation, hormones, menstruation, ovulation, puberty, semen, and wet dreams. Mother and adolescent knowledge of sexual development terms and the effects of age and sexual experience on that knowledge were examined. Results suggest that the mothers were not able to adequately define the sexual development terms and thus may be ill-prepared to teach their children about sex or reinforce information they learn in school. Since adolescent knowledge did not significantly increase with age and sexual experience, the researchers suggest that continuing sex education about normal sexual development is needed.

The relationship of illness longevity and relapse with self-perception, cancer stressors, anxiety, and coping strategies in children with cancer.

A descriptive, correlational design was used to investigate the relationship of the longevity of the cancer experience and the presence of a relapse to the child's self-perception, cancer stressors, anxiety, and use of coping strategies. The 44 children included in this study were 6 1/2 to 13 1/2 years of age. Fifteen of the children had experienced a relapse of the disease either on or off therapy. The longevity of the cancer treatment and the presence of a relapse were negatively associated with the child's self-perception. Trait anxiety was positively associated with duration of the cancer experience and with the presence of a relapse. Longevity of the cancer experience and the presence of a relapse may be factors that signal the need for interventions designed to enhance the child's self-perception throughout treatment. Because children in this study who reported lower self-perception and higher trait anxiety levels also reported experiencing more cancer stressors, nursing efforts to develop innovative strategies designed to enhance patients' feelings of self-worth and decrease their anxiety may prove to be important contributions to the care of children receiving treatment for cancer.

Cancer stressors and protective factors: predictors of stress experienced during treatment for childhood cancer.

Perceptions of cancer stressors and protective factors are predictors of stress experienced during treatment for childhood cancer were assessed in this study. Cancer stressors were the type of treatment received during two clinic visits and the child's perception of the cancer experience. Protective factors were self-perception, coping strategies, perceived social support, and family environment. The child's responses to stressors were assessed by epinephrine, norepinephrine, and cortisol levels of urine, and measures of state anxiety. Forty-four children between 6 1/2 and 13 1/2 years of age receiving treatment for cancer were evaluated during two clinic visits. Epinephrine was elevated for children during both clinic visits, while norepinephrine and cortisol remained normal. Stepwise multiple regression analyses revealed that the family environment and global self-worth were the best predictors of epinephrine levels, while social support from friends predicted norepinephrine levels. The family environment and social support from teachers predicted state anxiety.

Living with cancer: children with extraordinary courage.

PURPOSE: To gain an understanding of the personal experience of school-age children with cancer. DESIGN: Phenomenologic. SETTING: A comprehensive pediatric cancer center in the southeastern United States. SAMPLE: 21 children (11 males and 10 females) 7-13 years of age receiving treatment for a variety of cancers. MAIN RESEARCH VARIABLES: Children's thoughts and feelings about their cancer and its treatment. FINDINGS: Common themes about what provided strength for these children during treatment emerged: "knowing" (what to expect, information about cancer, others with cancer), "caring" (for self, being cared for by family and nurses), "feeling special" (feeling unique and also struggling to feel normal), and "getting used to it" (being brave, accepting things). CONCLUSIONS: Children can demonstrate a pattern of strength and the ability to bounce back, despite stressful situations. In spite of differences in cognitive development, children can be helped to develop strength in the face of adversity. IMPLICATIONS FOR NURSING: Nurses can assist children with cancer by developing interventions that provide age-appropriate information, support their perceived specialness, and integrate the use of new interventions that decrease painful treatments.

Focus groups: an interview method for nursing research.

Focus groups present an ideal way for nurse researchers to collect preliminary information about an area of research interest. The information obtained can lead to greater understanding of phenomena or can be used to develop more extensive quantitative studies. Following the recommendations for conducting a focus group as described in this article and focus group manuals can lead to a worthwhile and enjoyable experience for all involved.