Biomedical subjects
Publications and source records attributed to L F Degner.
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Nurses can play a key role in patient education, including providing patients with useful and appropriate information. Rather than focusing on the process of education or information giving by nurses, this study places emphasis on the content of that information by taking the patients' perspective and asking the patients themselves what particular types of information are perceived as important at a specific point in time. The aim of the study was to explore what particular types of information were important to women newly diagnosed with breast cancer; to enable nurses and other health care professionals to utilize their time as effectively as possible and provide a high-quality service to individuals in their care. Women with breast cancer (a mean of 2.5 weeks from diagnosis) were interviewed and asked to compare items of information. The items of information were presented in pairs and the women stated a preference for one item in that pair. Thirty-six pairs were presented in total. The analysis involved the use of a Thurstone scaling model, which allowed rank orderings, or profiles of information needs, to be developed, reflecting the perceived importance of each item. Information about the likelihood of cure, the spread of the disease and treatment options were perceived as the most important items of information at the time of diagnosis. Other information needs, in order of descending priority, included information about the risk to family, side-effects of treatments, impact on family, self-care, effect on social life and sexual attractiveness. Profiles of information needs were produced to take account of differences in age, level of education and social class.(ABSTRACT TRUNCATED AT 250 WORDS)
PURPOSE/OBJECTIVES: To determine whether a relationship exists between preferences for involvement in decision making and type of information in patients with cancer. DESIGN: Survey, correlational. SETTING: Community urology clinic in Winnipeg, Manitoba, Canada. SAMPLE: Convenience sample of 57 men (mean age of 71 years). METHODS: Subjects completed a card sort to elicit their preferred role in treatment decision making. A two-part questionnaire measured the type and amount of information preferred. FINDINGS: The majority (57.9%) of men preferred a passive decision-making role. Information on disease advancement, likelihood of cure, and types of treatment available were the three preferred categories of information. Men in the collaborative group and those who wanted their physician to make treatment decisions-only after seriously considering their opinions-also wanted significantly more information in these three categories. Married men ranked self-care information as significantly less important than did single men. Information preferences were similar regardless of preferred decision-making role. CONCLUSIONS: Although the majority of men in this sample wanted their physician to make final treatment decisions, they did want to be informed. Information preferences were similar to other groups of patients with cancer. Future clinical studies are required to determine if providing these men with more information will enable them to assume a more active decision-making role. IMPLICATIONS FOR NURSING PRACTICE: Given the small variance in decision-making and information preferences accounted for by sociodemographic and treatment/disease-related factors, individual assessment of these preferences remains the best clinical approach.
Two studies balanced qualitative and quantitative data to provide evidence of satisfactory validity and reliability of the Family Inventory of Needs (FIN). The FIN is designed to measure the importance of care needs of families of advanced cancer patients (FIN-Importance of Care Needs subscale) and the extent to which families perceive that their care needs have been met (FIN-Fulfillment of Care Needs subscale). The first study involved development of the instrument and testing for clarity, apparent internal consistency (non-quantitative assessment of homogeneity of content), and content validity using a panel of six experts (family members of advanced cancer patients). The FIN met or exceeded the preset criteria specified used in this phase of testing. The second study of the project used 109 family members of advanced cancer patients from three hospice programs to test the FIN for internal consistency and construct validity. Internal consistency of the FIN-Importance of Care Needs subscale as measured by Cronbach's alpha coefficient was .83 without redundancy. Construct analysis was assessed using factor analysis techniques. An inability to extract a substantively meaningful minimum number of factors, together with the fact that a theta reliability coefficient of .85 was obtained (only .02 higher than the alpha coefficient), suggested that the items were parallel supporting the conclusion that the subscale is unidimensional. Support for the construct validity of the FIN-Importance of Care Needs subscale was also obtained using predictive modeling. The internal structure of the FIN-Fulfillment of Care Needs subscale was assessed using cluster analysis. Results suggested that the subscale is a unidimensional one. Overall, the FIN met the preset reliability and validity criteria providing promising evidence for the instrument's sound psychometric properties for use in research and clinical settings.
This study examined relationships between cancer patients' preferences for involvement in making treatment decisions and preferences for information about diagnosis, treatment, side effects, and prognosis. Participants were 35 women with stage I and II breast cancer recruited from two medical oncology and radiation oncology clinics. Following administration of card sort measures of preference for involvement in treatment decision making and information needs, a semi-structured interview was conducted to provide patients with an opportunity to elaborate on their role preferences and health care experiences. Results showed that patients who desired an active role in treatment decision making also desired detailed information. This relationship was not as clear for passive patients. Relative to passive patients, active patients desired significantly more detailed explanations of their diagnosis, treatment alternatives, and treatment procedures. Active patients also preferred that their physicians use the words 'cancer' or 'malignancy' when referring to their illness while passive patients preferred that their physicians use a eupheumism. Further research is needed to critically detail the advantages and disadvantages of the active and passive roles and their impact on disease progression and psychological well-being.
This article describes an intervention strategy designed to provide decisional support for patients with cancer who want to participate in medical-treatment decisions. This strategy is based on the concepts of commitment and control and on a simple technique for determining the degree of involvement the patient desires. It has been tested on women with a confirmed diagnosis of breast or gynecologic cancer and on women referred for a second opinion and diagnostic workup for suspicious lesions. The emphasis is on the patient's agenda, including assessing to what extent she wants to participate, helping her to identify questions, and supporting her in obtaining the information she wants and needs. The strategy has been incorporated successfully into a busy oncology clinic schedule. The next challenge is to conduct research to evaluate the effect of providing decisional support on quality of life.
Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.
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A beginning list of seven critical nursing behaviors in care for the dying was identified in a qualitative study. Ten experienced palliative care nurses and 10 nurse educators were asked to describe situations in which a student or graduate nurse had displayed very positive or very negative attitudes to care for the dying. Behaviors identified after content analysis of transcribed interviews were responding during death scene, providing comfort, responding to anger, enhancing personal growth, responding to colleagues, enhancing quality of life during dying, and responding to the family. Three of these behaviors were not well described in the nursing literature.
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The preferences of adults with cancer about alternative roles they might play in treatment decision making was examined. The hypothesis was that people with cancer have ideal points along the psychological dimension of keeping, sharing, or giving away control over decision making. A theoretical sample of 60 ambulatory oncology patients was tested using two card-sort procedures with a total of eight vignettes describing various patterns of control over treatment decision making. Results indicated that preference orders of 59/60 patients were consistent with the existence of an underlying psychological dimension, "preferences for control over treatment decision making"; that most patients preferred the pattern of shared control; and that patients preferred to give control to the physician rather than a family member.
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