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Biomedical subjects

Lesley F Degner

Publications and source records attributed to Lesley F Degner.

At least 19 recordsLinked to original sources

Impact of providing audiotapes of primary treatment consultations to men with prostate cancer: a multi-site, randomized, controlled trial.

BACKGROUND: The purpose of this investigation was to systematically examine the efficacy of providing men with prostate cancer with an audiotape of their primary treatment consultation. METHOD: Participants included 425 men newly diagnosed with prostate cancer and 15 radiation oncologists from 4 cancer centers in Canada. Patients were block randomized to one of four consultation groups: 1. Standard care control--not audio-taped; 2. Audio-taped--no audiotape given; 3. Audio-taped--patient given audiotape; and 4. Audio-taped--patient offered choice of receiving audiotape or not (4 patients declined; 94 accepted). Patient outcomes were measured at 12 weeks post-consultation: perceived degree of information provision; audiotape satisfaction and use; communication satisfaction with oncologist; mood state; and cancer-specific quality of life. RESULTS: Patients receiving the consultation audiotape reported having been provided with significantly more disease and treatment information in general (p=0.04), and more information about treatment alternatives (p=0.04) and treatment side effects (p=0.01) in particular, than patients who did not receive the audiotape. Audiotape benefit was not significantly related to patient satisfaction with communication, mood state or quality of life at 12 weeks post-consultation, and was not significantly affected by choice of receiving the audiotape. Patients rated the audiotape intervention positively, with an average score of 83.0 out of 100. CONCLUSION: Consultation audiotapes are rated highly by men with prostate cancer, and these audiotapes help to enhance their perception of having been provided with critical disease- and treatment-related information.

Adaptation, Psychological↗

Promoting enhanced patient and family caregiver congruence on lung cancer symptom experiences.

PURPOSE/OBJECTIVES: To test the effects of different perspective-taking instructional sets, gender, caregivers' personal histories with cancer, and caregiving relationship factors on family caregiver and patient perceptual agreement of symptom experiences of patients with lung cancer. DESIGN: Counterbalanced. SETTING: Thoracic oncology outpatient clinical setting in Canada. SAMPLE: 98 dyads consisting of patients with lung cancer and their family caregivers. METHODS: Data were collected on a one-time basis by employing an abbreviated version of the Memorial Symptom Assessment Scale targeting lack of energy and worrying. Caregivers were randomized to one of six counterbalanced conditions of perspective-taking instructions. MAIN RESEARCH VARIABLES: Caregiver discrepancy scores, instructional sets (i.e., neutral, self-report, and imagine-self and imagine-patient perspective-taking), order effects, gender, caregivers' personal history with cancer, and caregiving relationship factors. FINDINGS: No order effects were found for the instructional sets. Instructions to imagine the patient's perspective over imagining how the caregiver would feel if he or she had cancer were most effective in enhancing the caregiver's ability to estimate the patient's lack of energy and worrying. Gender had no significant effects. The amount of patient-caregiver communication had a positive impact on the accuracy of caregivers' perspectives. CONCLUSIONS: The patient-oriented instructions had a limited impact on enhancing patient-caregiver congruence on patient symptoms. This likely is related to the study's convenience sample of caregivers who appear to naturally engage in empathic processes of patient-oriented perspective-taking when they assessed and reported on patient symptom conditions. IMPLICATIONS FOR NURSING: Further exploratory work should identify interpersonal conditions that negatively hamper the effects of caregiver perspective-taking on their reasonable understanding of patient symptoms.

Adaptation, Psychological↗

Do patients benefit from participating in medical decision making? Longitudinal follow-up of women with breast cancer.

This study sought to examine the relationships between decisional role (preferred and assumed) at time of surgical treatment (baseline), congruence between assumed role at baseline and preferred role 3 years later (follow-up), and quality of life at follow-up. Two hundred and five women diagnosed with breast cancer completed the decisional role preference scale at baseline and follow-up, and the EORTC QLQ-C30 at follow-up. A statistically significant number of women had decisional role regret, with most of these women preferring greater involvement in treatment planning than was afforded them. Women who indicated at baseline that they were actively involved in choosing their surgical treatment had significantly higher overall quality of life at follow-up than women who indicated passive involvement. These actively involved women had significantly higher physical and social functioning and significantly less fatigue than women who assumed a passive role. Quality of life was significantly related to reports of experienced involvement in treatment decision making, but not to reports of preferred involvement, or congruence between preferred and experienced involvement.

Aged↗

Parents of children with cancer: factors influencing their treatment decision making roles.

This study examined the factors that parents identified as influencing their role in treatment decision making (TDM) for their child with cancer. Content analysis of qualitative data from semistructured interviews with 36 parents as part of a mixed-methods study revealed numerous themes related to parents' TDM roles. Factors that were frequently identified included: relationship with the physician, nature of communication, trust in the physician, parents' and physician's knowledge and experience, and importance of parental role. Parents acknowledged a strong sense of responsibility and feeling of "ownership" of their child. Parents initially lacked knowledge and experience, but acquiring these over time contributed to a more active participation in TDM.

Adult↗

Clarifying the concepts in knowledge transfer: a literature review.

AIM: The aim of this paper is to examine the concepts of opinion leaders, facilitators, champions, linking agents and change agents as described in health, education and management literature in order to determine the conceptual underpinnings of each. BACKGROUND: The knowledge utilization and diffusion of innovation literature encompasses many different disciplines, from management to education to nursing. Due to the involvement of multiple specialties, concepts are often borrowed or used interchangeably and may lack standard definition. This contributes to confusion and ambiguity in the exactness of concepts. METHODS: A critical analysis of the literature was undertaken of the concepts opinion leaders, facilitators, champions, linking agents and change agents. A literature search using the concepts as keywords was conducted using Medline, CINAHL, Proquest and ERIC from 1990 to March 2003. All papers that gave sufficient detail describing the various concepts were included in the review. Several 'older' papers were included as they were identified as seminal work or were frequently cited by other authors. In addition, reference lists were reviewed to identify books seen by authors as essential to the field. FINDINGS: Two similarities cut across each of the five roles: the underlying assumption that increasing the availability of knowledge will lead to behaviour change, and that in essence each role is a form of change agent. There are, however, many differences that suggest that these concepts are conceptually unique. CONCLUSIONS: There is inconsistency in the use of the various terms, and this has implications for comparisons of intervention studies within the knowledge diffusion literature. From these comparisons, we concluded that considerable confusion and overlap continues to exist and these concepts may indeed be similar phenomena with different labels. All concepts appear to be based on the premise that interpersonal contact improves the likelihood of behavioural change when introducing new innovations into the health sector.

Concept Formation↗

Symptoms in patients with lung carcinoma: distinguishing distress from intensity.

BACKGROUND: The patient perspective on distress associated with lung carcinoma is important, yet understudied. Previous research on symptom experience generally had not differentiated the dimension symptom intensity/frequency from which symptoms are associated with most distress. The objective of the current study was to determine whether patterns of symptom intensity were similar to patterns of symptom distress, whether patterns were consistent at different time points, whether patterns varied by subgroups, and whether high symptom intensity was equivalent to distress. METHODS: Four hundred adults who were newly diagnosed with inoperable lung carcinoma completed a measure of symptom intensity/frequency and a new measure of distress associated with symptoms at six time points during the first year after diagnosis. These data were supplemented by field notes by research nurses and by less structured, qualitative interviews. RESULTS: The mean ranking of distress in the total group and in all subgroups remained constant at all time points, with breathing, pain, and fatigue associated with the most distress. In contrast, the pattern of mean rank order of symptom intensity showed little consistency; however, fatigue had the highest intensity scores at all time points. CONCLUSIONS: The current data challenged the uncritical use of summated scores of different symptom items in the context of lung carcinoma. Breathing and pain appeared to function as icons representing threats associated with lung carcinoma, with distress described as related to the past and the present and to expectations for the future. One of the most promising implications of these data was in fostering a preventive paradigm for symptom palliation.

Aged↗

The communication goals and needs of cancer patients: a review.

The aim of this review paper is to critique the empirical literature pertaining to the communication needs and goals of cancer patients, and to provide direction for research in this area. According to the conceptual framework of Feldman-Stewart et al., patient-physician communication occurs for the fundamental purpose of addressing each participant's goal(s). This review is divided into two categories of goals: (a) optimal medical management of the cancer, and (b) optimal attention to the patient's psychosocial response to cancer. Optimal medical management includes discussions about disease status and the treatment plan, and the effectiveness of these discussions is frequently determined by assessing patient understanding, satisfaction, and well-being. The literature suggests that cancer patients continue to have unmet communication needs, and communication outcomes are enhanced when physicians attend to the emotional needs of patients. Research gaps in communication research are highlighted, including the need for additional study of several external factors affecting the patient and provider.

Communication↗

Coping responses following breast cancer diagnosis predict psychological adjustment three years later.

The relationship between coping responses and psychological adjustment to a breast cancer diagnosis is well documented for time periods close to diagnosis. The purpose of the present study was to assess the long term association between these two variables. Fifty-five women completed measures of coping response, decisional control, frustration expression, and psychological adjustment within six months of receiving their breast cancer diagnosis. These women were contacted three years later and their psychological adjustment-as measured by the profile of mood states (POMS)-was reassessed. Univariate and multivariate analyses were performed. The results showed that women who were depressed at time of treatment planning, and who responded to their cancer diagnosis with cognitive avoidance, i.e. acceptance/resignation, had significantly worse psychological adjustment three years later. Poor adjustment was significantly associated with cognitive avoidance and minimal use of approach-based coping responses. The findings suggest that women who respond to their breast cancer diagnosis with passive acceptance and resignation are at significant risk for poor long term psychological adjustment. Psychological interventions for these women should address cognitive avoidance, with the aim of fostering approach-based coping and positive well-being.

Adaptation, Psychological↗

Family responses to declining intake and weight loss in a terminally ill relative. Part 1: fighting back.

We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of "fighting back: it's best to eat." The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.

Adult↗

Impact of providing audiotapes of primary adjuvant treatment consultations to women with breast cancer: a multisite, randomized, controlled trial.

PURPOSE: Women with breast cancer were provided with an audiotape of their primary adjuvant treatment consultation, and the following patient outcomes were measured at 12 weeks postconsultation: perceived degree of information provision, audiotape satisfaction and use, communication satisfaction with oncologist, mood state, and cancer-specific quality of life. PATIENTS AND METHODS: Participants included 628 women newly diagnosed with breast cancer and 40 oncologists from six cancer centers in Canada. The patients were block randomized to one of four consultation groups: standard care control, not audiotaped; audiotaped, no audiotape given; audiotaped, patient given audiotape; and audiotaped, patient offered choice of receiving audiotape or not. RESULTS: Patients receiving the consultation audiotape had significantly better recall of having discussed side effects of treatment than patients who did not receive the audiotape. Audiotape benefit was not significantly related to patient satisfaction with communication, mood state, or quality of life at 12 weeks postconsultation, and was not significantly affected by choice of receiving the audiotape. Patients rated the audiotape intervention positively, with an average score of 83.9 of 100. CONCLUSION: Audiotape provision benefits patients by facilitating their perception of being informed about treatment side effects, but does not significantly influence patient satisfaction with communication, mood state, or quality of life.

Aged↗

A new approach to eliciting meaning in the context of breast cancer.

A semistructured measure was developed from early descriptive work by Lipowski to elicit the meaning of breast cancer using eight preset categories: challenge, enemy, punishment, weakness, relief, strategy, irreparable loss, and value. This measure was applied in two studies: a cross-sectional survey of 1012 Canadian women at various points after diagnosis and a follow-up study 3 years later of 205 women from the previous study who were close to the time of diagnosis at the first testing. The majority of the 1012 women chose "challenge" (57.4%) or "value" (27.6%) to describe the meaning of breast cancer, whereas fewer chose the more negative "enemy" (7.8%) or "irreparable loss" (3.9%). At the 3-year follow-up assessment, 78.9% of the women who had indicated positive meaning by their choices of "challenge" or "value" did so again. Verbal descriptions provided by the women were congruent with those reported in previous qualitative studies of meaning in breast cancer with respect to the two most prevalent categories: challenge and value. At follow-up assessment, women who ascribed a negative meaning of illness with choices such as "enemy," "loss," or "punishment" had significantly higher levels of depression and anxiety and poorer quality of life than women who indicated a more positive meaning. The meaning-of-illness measure provides an approach that can be applied in large surveys to detect women who ascribe less positive meaning to the breast cancer experience, women who may be difficult to identify in the context of small, qualitative studies.

Adaptation, Psychological↗

Symptom experiences: perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting.

PURPOSE: This study used a comparative descriptive design to compare family caregivers' and advanced-stage cancer patients' perceptions of patients' multidimensional symptom experiences on presence, frequency, severity, and distress. PATIENTS AND METHODS: A convenience sample of 98 dyads, composed of advanced-stage heterogeneous cancer patients and their caregivers, completed the Memorial Symptom Assessment Scale in the home care setting on a one-time basis. This scale is a 32-item Likert-type scale for assessing the presence, frequency, severity, and distress arising from symptoms in cancer patients. RESULTS: There was confirmation of trends previously described in related studies where, for example, caregivers tend to overreport on symptom experiences. However, the degree of absolute difference between patient and caregiver responses was normally around 1 unit (on a theoretical range of 0 to 4 units). Levels of patient-caregiver agreement were better on more concrete questions related to symptom frequency, severity, and distress than on broad questions related to the presence of a symptom. Patients and caregivers achieved better levels of agreement on physical versus psychological symptoms. CONCLUSION: The findings indicated that family caregivers can provide reasonable proxy or complementary reports on patient symptom experiences of frequency, severity, and distress. However, family caregivers have greater difficulty in achieving high levels of accuracy on psychological versus physical symptoms.

Adult↗

Assessing information and decision preferences of men with prostate cancer and their partners.

The purpose of this study was to identify and compare information and decision preferences of men with prostate cancer and their partners at the time of diagnosis. A convenience sample of 80 couples was recruited from The Prostate Centre in Vancouver, Canada. Participants used a computerized version of two previously used measures with this population: Control Preferences Scale and Information Survey Questionnaire. Results showed that men had a preference to play either an active or a collaborative role in decision making with their physician (92.5%) and partners (100%). The majority (55%) of partners wanted to play a collaborative role in treatment decision making. Couples identified prognosis, stage of disease, treatment options, and side effects as the top 4 information preferences. Men ranked information on sexuality more important than partners, and partners ranked information on home self-care higher than men. Men who had sons, a positive family history, and lower levels of education ranked heredity risk significantly higher. Profiles of information categories did not differ according to role preferences of either men or partners. The computer program has been shown to be a reliable and acceptable method of assessing information and decision preferences of these couples. An individualized approach is suggested, given the high reliability of individual's profiles.

Adult↗

Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: trends and measurement issues.

Next of kin (NOK) play an integral role in fostering optimal quality of life in symptomatic patients who are coping with cancer in the home setting. Often when patients in advanced stages of cancer are no longer able to meaningfully communicate their illness and symptom needs, healthcare professionals turn to NOK to provide sound estimates of patients' symptom experiences. This overview is based on 37 research studies written between 1987 and 2002 and updates an earlier overview of 13 studies on patient-NOK response comparability. The purpose is to, first, promote a better comprehension of methodologies and statistical techniques commonly employed to measure patterns of response comparability (or levels of agreement) between patient self-reports and NOK estimates on patient quality-of-life experiences of physical or symptom and emotional or psychological well-being. The second aim is to identify conditions where NOK may pose as reasonably accurate judges of patients' health-related quality of life, particularly symptom experiences arising from various diagnoses, including cancer. Third, subsequent to identifying the gaps in current research knowledge and limitations in study designs, recommendations for statistical and methodological techniques are outlined.

Bias↗

Feasibility of using a computer-assisted intervention to enhance the way women with breast cancer communicate with their physicians.

This study was conducted to evaluate the feasibility of using a computer intervention to enhance communication between healthcare professionals and women with breast cancer. Additional aims were to measure the extent to which women achieved their preferred decisional roles and satisfaction with the clinical medical appointment. This two-arm randomized clinical trial design included a convenience sample of 749 women with breast cancer attending 3 urban Canadian outpatient oncology clinics. Most women were older than 50 years and had a high school diploma or greater (57%). Women in the control group completed measures of decision preference before their clinic appointments. Women in the intervention group were encouraged to use the information and decision preference profiles generated by the computer program at their clinic appointments. Levels of involvement in decision making and satisfaction were measured after the clinic appointments. Results showed that although the majority of women in both groups did assume their preferred roles in decision making, a significantly higher proportion of women in the intervention group reported playing a more passive role than originally planned. Both groups reported high satisfaction levels. Future research is required to study how this computer intervention could be used by clinicians to provide information and decision support to these women.

Adaptation, Psychological↗