Depression burden, self-help interventions, and side effect experience in women receiving treatment for breast cancer.

PURPOSE/OBJECTIVES: To describe effects of a set of Self-Help Intervention Project (SHIP) interventions with self-reported depression burden on the side effect experience of women receiving treatment for breast cancer. DESIGN: Repeated measures, experimental design. SETTING: Outpatient sites at a regional cancer center, private practices, and health maintenance organizations. SAMPLE: 169 women who completed data at all three data-collection points were used to answer the research questions. METHODS: Following random assignment, individuals in the treatment group participated in five different, but complementary, self-help interventions for six weeks. The control group received the usual care. Variables were measured at baseline after radiation, chemotherapy, or hormone therapies were started to allow for the side effects to emerge at six to eight weeks after treatment and three months following time 2. MAIN VARIABLES: Depression burden, fatigue burden, pain burden, nausea burden, difficulty concentrating burden, anxiety burden, number of side effects, severity of side effects, and participation in the interventions. FINDINGS: Self-reported depression burden was found to significantly influence severity of side effects, number of side effects, and the burdens of fatigue, difficulty concentrating, and anxiety. Depression burden did not significantly influence the side effect burdens of nausea or pain. Depression burden interacted with the self-help interventions over time for the side effect of fatigue, but the intervention effect on pain burden and nausea burden was not influenced by depression burden over time. No significant intervention effects were found for the burden of difficulty concentrating or anxiety, the number of side effects, or perceived severity of side effects. The interventions significantly reduced the fatigue, pain, and nausea burden in women with breast cancer. CONCLUSIONS: The interventions were particularly helpful, relative to their fatigue experience, for women reporting a high level of depression burden. Findings also contribute to conceptual clarification of essential aspects of the side effect experience and provide a basis for measure and intervention refinement. IMPLICATIONS FOR NURSING PRACTICE: Every woman who is undergoing cancer treatment should be assessed for depression and depression burden. Self-help interventions are effective and convenient treatments that reduce side effects and promote quality of life in women with breast cancer.

Uncertainty in childhood illness: a synthesis of the parent and child literature.

Uncertainty has increasingly been identified as an important construct in the clinical and empirical literature on families' responses to serious childhood illnesses. Most of the work has focused on parents' perceptions of uncertainty, but several recent studies have demonstrated that children are also affected by uncertainties inherent in the illness experience. Findings from 44 reports of parental uncertainty and 12 reports of children's uncertainty were reviewed to determine what is currently known about uncertainty in the context of acute and chronic childhood illness. Pertinent conceptual and methodological issues are identified and directions for future research are suggested.

Uncertainty in chronic illness.

In this chapter, the research on uncertainty in chronic illness is reviewed and critiqued. Two theoretical perspectives of uncertainty that can be applied across the range of chronic illness are presented. Research on the causes and consequences of uncertainty in chronic illness are considered and critiqued. The review addresses research on adults and on parents of chronically ill children. Conclusions include the areas requiring further investigation.

Side-effects burden, psychological adjustment, and life quality in women with breast cancer: pattern of association over time.

PURPOSE/OBJECTIVES: To describe the side-effects burden experienced over time by 53 women who were receiving treatment for breast cancer and to describe the association of side-effects burden with psychological adjustment and life quality. DESIGN: Data were drawn from the Self-Help Intervention Project (SHIP), an intervention study designed to test the effectiveness of nursing interventions for women receiving treatment for breast cancer. SETTING: Subjects were interviewed in their homes or treatment locations three times over a period of four to five months. SAMPLE: 53 women randomly assigned to the control group of the SHIP. METHODS: The researchers collected data after treatment was initiated, six to eight weeks later, and three months after that. MAIN RESEARCH VARIABLES: Side-effects burden, psychological adjustment, and life quality. FINDINGS: Fatigue was the most problematic side effect over time. Other problematic side effects included sore arm(s), difficulty sleeping, hair loss, and skin irritation. Significant associations were evident for psychological adjustment with symptom extension and number of side effects at Time 2 and Time 3. Depression burden and anxiety burden were associated significantly with psychological adjustment at all three times. Overall life quality and present life quality was associated negatively with symptom extension and number of side effects at all three times. Fatigue burden was associated negatively with life quality at Time 2 and Time 3 with depression burden and anxiety burden negatively associated with life quality at all three times. CONCLUSIONS: Over time, evidence showed that negative feelings, in particular depression burden and anxiety burden, persist. Depression burden and anxiety burden each were negatively associated with overall and present life quality at all three times. IMPLICATIONS FOR NURSING PRACTICE: A need exists for clinically individualized nursing interventions that will reduce the side effects burden of women receiving treatment for breast cancer. Interventions can do much to reduce the perception of illness severity so that psychological adjustment and life quality can be maintained.

Self-Help Intervention Project. Women receiving breast cancer treatment.

PURPOSE: The purpose of this study was to determine the efficacy of self-care/self-help promotion and uncertainty management interventions offered by the Self-Help Intervention Project (SHIP) for women receiving chemotherapy, radiation therapy, or hormone therapy for breast cancer. DESCRIPTION OF STUDY: One hundred ninety-three women were randomly assigned either to one of three intervention groups (self-help course, uncertainty management, or self-help course plus uncertainty management) or to a control group. Data were analyzed by a repeated measures multivariate analysis of variance procedure using a two-level blocking factor (high and low resourcefulness) and four outcome variables (self-care, self-help, psychological adjustment, and confidence in cancer knowledge). Data were collected at baseline (T1), which was after initiation of adjuvant therapy, allowing for the emergence of treatment-related side effects; 6 to 8 weeks after T1 (T2); and 3 months after T2 (T3). RESULTS: At baseline, women having high resourcefulness compared with women having low resourcefulness evidenced greater self-care, self-help, psychological adjustment, and confidence in cancer knowledge. Participation in SHIP interventions resulted in higher levels of self-care, self-help, psychological adjustment, and confidence in cancer knowledge by time effect in a significant number of women regardless of their baseline resourcefulness. Women participating in SHIP interventions who had low baseline resourcefulness demonstrated the greatest change over time in the outcome variables. Post hoc results indicated that the effect primarily was the result of changes in psychological adjustment, confidence in cancer knowledge, and self-care. CLINICAL IMPLICATIONS: The findings of this study address both the treatment effect for supportive care interventions and the needs that have emerged from review of the last 20 years of supportive care research. Some SHIP interventions evidenced more strength than others; data indicated that large percentages of women with low resourcefulness who received no SHIP interventions experienced a decrement in self-care, self-help, confidence in cancer knowledge, and psychological adjustment over the time that they received adjuvant therapy. Women's level of confidence in their knowledge about cancer being sufficient for self-management and self-help activities was not linked to baseline resourcefulness level. Thus, inherent resourcefulness was not a factor in need for supportive services that could maintain or increase confidence in cancer knowledge usefulness for self-management and self-help. Healthcare providers should note that although the women with low resourcefulness benefited the most from the interventions, women who evidenced high resourcefulness at baseline reported the same level of need for confidence in cancer knowledge and for self-help.

Uncertainty in prostate cancer. Ethnic and family patterns.

PURPOSE: Prostate cancer occurs 37% more often in African-American men than in white men. Patients and their family care providers (FCPs) may have different experiences of cancer and its treatment. This report addresses two questions: 1) What is the relationship of uncertainty to family coping, psychological adjustment to illness, and spiritual factors? and 2) Are these patterns of relationship similar for patients and their family care givers and for whites and African-Americans? DESCRIPTION OF STUDY: A sample of white and African-American men and their family care givers (N = 403) was drawn from an ongoing study, testing the efficacy of an uncertainty management intervention with men with stage B prostate cancer. Data were collected at study entry, either 1 week after post-surgical catheter removal or at the beginning of primary radiation treatment. Measures of uncertainty, adult role behavior, problem solving, social support, importance of God in one's life, family coping, psychological adjustment to illness, and perceptions of health and illness met standard criteria for internal consistency. Analyses of baseline data using Pearson's product moment correlations were conducted to examine the relationships of person, disease, and contextual factors to uncertainty. RESULTS: For family coping, uncertainty was significantly and positively related to two domains in white family care providers only. In African-American and white family care providers, the more uncertainty experienced, the less positive they felt about treatment. Uncertainty for all care givers was related inversely to positive feelings about the patient recovering from the illness. For all patients and for white family members, uncertainty was related inversely to the quality of the domestic environment. For everyone, uncertainty was related inversely to psychological distress. Higher levels of uncertainty were related to a poorer social environment for African-American patients and for white family members. For white patients and their family members, higher levels of uncertainty were related to lower scores on adult role behavior (shopping, running errands). For white family members, higher levels of uncertainty were related to less active problem solving and less perceived social support. Finally, higher levels of uncertainty were related to the importance of God for white patients and family care providers. CLINICAL IMPLICATIONS: The clearest finding of the present study is that there are ethnic differences in the relationship of uncertainty to a number of quality-of-life and coping variables. This has immediate implications for the assessment of psychosocial responses to cancer and cancer treatment. Much of what is in curricula is based on clinical and research experience primarily with white individuals. The experience of uncertainty related to cancer and its treatment is influenced by the cultural perspectives of patients and their families. To assist patients and families with the inevitable uncertainties of the cancer experience, healthcare providers need to reconsider their ethnocentric assumptions and develop more skill in assessing patient and family beliefs, values, cultural perspectives, and the influence of these on patient and family uncertainties.

Pattern of association over time of side-effects burden, self-help, and self-care in women with breast cancer.

PURPOSE/OBJECTIVES: To describe the side-effects burden experienced over time by 53 women who were receiving treatment for breast cancer, and to describe the association of side-effects burden with self-help and self-care. DESIGN: Data were drawn from the Self-Help Intervention Project (SHIP), an intervention study designed to test the effectiveness of nursing interventions for women who were receiving treatment for breast cancer. SETTING: Subjects were interviewed in their homes or treatment locations three times over a period of four to five months. SAMPLE: 53 women randomly assigned to the SHIP control group. METHODS: The researchers collected data at a designated period of time after treatment was initiated (Time 1), six to eight weeks later (Time 2), and three months after that (Time 3). MAIN RESEARCH VARIABLES: Side-effects burden, as measured by items from the Symptom Transition Scale and the Side Effects Checklist; self-help, as measured by the Inventory of Adult Role Behavior; and self-care, as measured by the Inventory of Adult Self-Care Behaviors and the Self-Care Inventory-Wellness Promotion subscale. FINDINGS: Fatigue was the most frequent and problematic side effect over time. Other frequent and problematic side effects over time included sore arm(s), difficulty sleeping, and skin irritation. Significant correlations were evident for self-help with symptom extension, number of side effects, depression, difficulty concentrating, and pain. No significant relationships were evident between self-care and an increase in side effects. Small relationships existed for self-care between symptom extension at Time 2 and Time 3. CONCLUSIONS: Over time, side effects interfered with patients' ability to perform adult role activities. For the most part, problematic side-effects burden was not associated with self-care at any point in time. The scattered associations that did exist were in the negative direction. IMPLICATIONS FOR NURSING PRACTICE: A need exists for clinically individualized nursing interventions to reduce the side-effects burden of women receiving treatment for breast cancer. Interventions can do much to reduce the perception of illness severity so that self-help and self-care can be maintained.

Uncertainty in acute illness.

In this chapter, the research on uncertainty in acute illness is reviewed and critiqued. Both qualitative and quantitative studies are included. The review considers the cause and consequences of uncertainty from research on adults and from research on parents of acutely ill children.

Side effects burden in women with breast cancer.

PURPOSE: This article describes the side effects burden of 307 women who were receiving treatment for breast cancer. The study provides a description of the impact of side effects burden on adult role activities (self-help), self-care, psychological adjustment, and quality of life. DESCRIPTION OF STUDY: Data to describe the side effects burden characteristics of 307 women receiving treatment for breast cancer were drawn from the Self-Help Intervention Project. Data were collected after medical treatment was underway and treatment-related side effects were evidenced. The impact of side effects burden on adult role activities (self-help), self-care, psychological adjustment, and life quality is described. RESULTS: Fatigue was the most common side effect as well as the most problematic. Number of side effects and increase in side effects were moderately correlated (P < 0.0001) in a negative direction with fatigue and depression. Self-care behaviors also were associated negatively with the extension of side effects and with fatigue and depression (P < 0.001). Psychological adjustment was associated with difficulty sleeping, anxiety, and depression. Overall life quality was noted to be negatively related to depression as was present life quality. CLINICAL IMPLICATIONS: Data support the need for clinical interventions that are individualized to women's side effects experience. Additional research is underway to test the effectiveness of the interventions specified by the overall study.

Uncertainty, appraisal and quality of life.

This study evaluates the influence of different factors in the adaptation process activated by uncertainty in illness on health-related quality of life. The sample included 100 women (mean age = 52.1 years) receiving treatment for newly diagnosed (M = 5.1 months) gynaecological cancer (38 cervical, 26 ovarian, 24 endometrial, 7 uterine, 4 vulvar, and 1 vaginal). Stepwise regression analyses identified mood states, ambiguity about illness-wellness state, danger-focused appraisal and mastery as key predictors of four health-related quality of life scores. The variance accounted for by those variables is reflected in cumulative multiple R2 of 0.56 for total quality of life score, 0.57 for psychosocial well-being, 0.235 for physical well-being and 0.25 for disease/symptom distress. These variances do not reflect the contribution of age, time since diagnosis, metastasis and stage of cancer which were forced to enter the regression equation first. The latter set of variables accounted for a smaller portion of the variance in health-related quality of life (R2 = 0.03-0.195). Coping strategy did not predict health-related quality of life. These findings provide beginning support for conceptualizing health-related quality of life as the outcome of an adaptation process explained by the uncertainty in illness theory. However, uncertainty in illness theory may not be sufficient to predict quality of life outcomes. Future research should consider the addition of discrepancy theory to guide the selection or development of a health-related quality of life measure, to account for the perceived discrepancy between actual experience and expected well-being.

Depression assessment and management: evaluating a community-based mental health training program for nurses.

This mental health training program was designed to increase primary care nurses' knowledge and skills about depression. The program emphasized criteria for assessing depression, presented psychopharmacologic and psychotherapeutic content, discussed care coordination among several agencies and providers, and addressed referral resources. Cultural and developmental issues were highlighted. The 237 participants had significant knowledge gains after the program on comparison of pretest and posttest measures. Client record audit found significant increases in the assessment of and intervention with depression. The training program successfully increased primary care nurses' abilities to use knowledge about depression in clinical practice.

Uncertainty in illness theory: a replication of the mediating effects of mastery and coping.

The purpose of this investigation was to replicate a test of the mediating functions of mastery and coping and to determine whether the relationships found in the initial test of the model would hold with a sample more heterogenous than the original sample. One hundred women receiving treatment for gynecological cancer participated in the investigation. Of the 14 relationships in the model, only 5 replicated significant paths and had overlapping confidence intervals. Two moderators were proposed to explain the differences between the initial and replication tests of the model and to improve the specificity of the theory.

Uncertainty in gynecological cancer: a test of the mediating functions of mastery and coping.

The purpose of this study was to test a portion of the uncertainty in illness model to determine whether mastery would be strengthened or weakened under conditions of uncertainty, and to test the ability of mastery and coping to function as mediators in the model. Mastery was proposed to mediate the relationship between uncertainty and the appraisal of danger and opportunity. Coping was proposed to mediate the relationships between danger or opportunity and emotional distress. Data were collected on a sample of 131 women receiving treatment for gynecological cancer. Findings support mastery as weakened under conditions of uncertainty and functioning as a situationally specific personality factor. Mastery was a significant mediator of the relationship between uncertainty and the appraisal of danger and opportunity; although the mediation effect for the relationship between uncertainty and danger was stronger. While two coping strategies were found to function as significant mediators between danger or opportunity and emotional distress, the mediation effect was very small.

Assessment and management of depression: an imperative for community-based practice.

The purpose of this mental health training program was to increase primary care nurses' knowledge and skills about depression. The program emphasized criteria for assessing depression, presented psychopharmacological and psychotherapeutic content, discussed care coordination among multiple agencies and providers, and addressed referral resources. Highlighted were cultural and developmental issues for Native Americans, Mexican-Americans, the elderly, and adolescents. The training program successfully increased primary care nurses' knowledge about depression and their abilities to use this knowledge in clinical practice.

Reconceptualization of the uncertainty in illness theory.

The theory of uncertainty in illness has its strongest support among subjects who are experiencing the acute phase of illness or are in a downward illness trajectory (mishel, 1988a). The theory has not addressed the experience of living with continual, constant uncertainty in either a chronic illness or in an illness with a treatable acute phase and possible eventual recurrence. Since uncertainty characterizes many, most prevalent, long-term illness conditions, there is a need to reconceptualize the theory of uncertainty to include the experience of living with continual uncertainty. A close examination of the theoretical statements and the empirical data reported by Mishel resulted in the identification of areas of the theory that could be expanded and reconceptualized. The reconceptualization effort was primarily fueled by questions about the outcome portion of the uncertainty theory. To provide a contest for the expansion and reconceptualization of uncertainty, applicable parts of the theory are summarized below.

Finding meaning: antecedents of uncertainty in illness.

In this study a portion of the uncertainty in illness model was tested. Antecedents to uncertainty tested were the stimuli frame variables of symptom pattern and event familiarity and the structure provider variables of education, social support, and credible authority. Data were collected on a convenience sample of 61 women with gynecological cancer at the time of major treatment effect. Findings supported the proposed model with an empirically generated revised model presenting the influence of antecedents on specific areas of uncertainty. Divergent paths for reducing uncertainty were found. Social support, credible authority, and event familiarity had the greatest influence on lowering the level of uncertainty. Event familiarity and credible authority were primarily effective in reducing the complexity surrounding treatment and the system of care. Social support functioned to decrease the level of ambiguity concerning the state of the illness. Findings generally support the proposed explantation for uncertainty arousal and have substantive significance in identifying the sources of stimuli leading to uncertainty arousal and modification.

Family adjustment to heart transplantation: redesigning the dream.

The processes family members of heart transplant recipients use to manage the unpredictability evoked by the need for and receipt of heart transplantation were explored. Twenty family members were theoretically sampled using the grounded theory approach. Three separate family support groups, each of 12 weeks duration, provided data for constant comparative analysis. Redesigning the dream was identified as the integrative theme in the substantive theory that described how family members gradually modify their beliefs about organ transplantation and develop attitudes and beliefs to meet the challenge of living with continual unpredictability. The theory consists of three concepts--immersion, passage, and negotiation--which parallel the stages of waiting for a donor, hospitalization, and recovery.