An Educational Program to Help Patients Manage Androgen Deprivation Therapy Side Effects: Feasibility, Acceptability, and Preliminary Outcomes.

Androgen deprivation therapy (ADT), a common treatment for prostate cancer, is associated with physical, psychological, and sexual side effects that reduce patients' quality of life. The authors designed an educational program to prepare patients for managing these side effects. This paper describes an implementation model for national dissemination of the program, testing its feasibility and acceptability at the institutional and patient level. Postprogram changes in patients' self-efficacy to manage side effects and side effect bother are also explored. Patients on or anticipating ADT enrolled in the educational program. Pre and post intervention questionnaires measured patient satisfaction with the program, side effect bother, and self-efficacy to manage ADT side effects. The ADT Educational Program was deemed feasible and acceptable. Five of six targeted sites successfully launched the program with sufficient patient enrolment. Patient attendees were highly satisfied. Self-efficacy, bother, and use of management strategies were interrelated. Lower bother was associated with increased self-efficacy and more use of management strategies, and increased bother was associated with lower self-efficacy and less use of management strategies. Based on pre-post scores, improvements in patients' self-efficacy to manage ADT side effects were also observed. Results demonstrate that this brief educational program is feasible and acceptable to patients and cancer care institutions. The program appears to promote self-efficacy and the uptake of ADT management strategies for ADT side effects. The results of this study support the program implementation and suggest that improvements in self-efficacy after program participation may help patients adapt to ADT side effects.

Couplelinks - an online intervention for young women with breast cancer and their male partners: study protocol for a randomized controlled trial.

BACKGROUND: Young breast cancer survivors (aged 50 years and under) and their partners are at an elevated risk for relationship distress and poor psychological adjustment relative to older age couples. Limited availability of time and resources and the distance to travel are major barriers to engaging in evidence-based psychosocial support programs. This paper describes the study protocol of a novel, manualized online intervention called Couplelinks that was developed to improve relationship adjustment and psychological wellbeing of young couples affected by breast cancer. Couplelinks is a custom-designed website offering a professionally facilitated, couple-centered intervention that entails informational, experiential, and interactive components. METHODS/DESIGN: A total of 80 heterosexual couples from across Canada in which the female partner has been diagnosed with a primary breast cancer will be recruited and randomized to a treatment or waitlist control group. Six dyadic learning modules form the core of the program and will be undertaken on a weekly basis. The manualized online intervention involves psycho-education and experiential exercises to enhance communication, coping ability, mutual empathy, and perspective-taking in relation to cancer. An online facilitator who is a trained mental health professional will guide and support couples throughout the process. Data collection will occur at baseline, at post-treatment or eight weeks into the waiting period, and at the three-month follow-up assessment. Primary outcome measures include the Revised Dyadic Adjustment Survey (RDAS) and Dyadic Coping Inventory (DCI) scores, and secondary outcome measures include the Hospital Anxiety and Depression Survey (HADS) score. DISCUSSION: Couplelinks is one of the first internet-based psychological interventions to improve the psychosocial adjustment of couples coping with a life-threatening illness such as cancer. If successful, the design of this program as described in this paper makes a valuable contribution to the literature on the delivery of couple-focused psychosocial interventions, both within and outside of oncology. TRIAL REGISTRATION: This trial was registered with ClinicalTrials.gov (identifier: NCT01089764 ) on 17 March 2010.

What do Canadian uro-oncologists believe patients should know about androgen deprivation therapy?

INTRODUCTION: Patients prescribed luteinizing hormone-releasing hormone agonists for androgen deprivation therapy (ADT) have significant misconceptions about treatment side effects and how to manage them. We surveyed a subset of Canadian physicians about what they think is important information to tell patients starting on ADT to determine the degree to which there is consensus of opinion. METHOD: A questionnaire about ADT side effects and management strategies was distributed to physicians-urologists, radiation oncologists, and medical oncologists - actively practicing within cancer and urology centers in the Canadian provinces of British Columbia, Alberta, Ontario, and the Maritime Provinces. RESULT: A total of 75 physicians filled out the survey. Physicians agreed that osteoporosis, erectile dysfunction, hot flashes, loss of libido, and loss of muscle mass were drug responses that were essential or important to warn patients about. However, for six commonly reported side effects (i.e. depression, diabetes, elevated cholesterol, anemia, delayed or absent orgasm, and genital shrinkage), physicians showed great variance, with less than 60% agreeing on whether to discuss these topics or not. CONCLUSION: There is little consensus among physicians regarding what to tell patients when prescribing this treatment. The lack of agreement among physicians may partially explain the lack of awareness of ADT side effects by patients and partners. The current findings may help guide strategies for the design, evaluation, and implementation of educational interventions for both physicians and patients that will better prepare patients to recognize, adapt to, and overcome ADT side effects.

A pan-Canadian web-based education program to support screening for distress: evaluation of outcomes.

OBJECTIVE: Cancer-related distress has been endorsed as the sixth vital sign by many international cancer organizations, and some countries such as Canada have implemented national screening for distress programs. The completion of a screening tool is an important first step in improving responsiveness to cancer-related distress, but screening must be followed with skilled supportive care to make a difference in patient-reported outcomes. Our objective was to create a web-based education program to support nurses and other frontline staff in providing an initial response to screening results. METHOD: To address screening and supportive care learning needs, the Canadian Association of Psychosocial Oncology (CAPO), with support from the Canadian Partnership Against Cancer, created a web-based education program as one component of the national screening for distress agenda. The program provides clinically grounded and interactive learning through the use of PowerPoint presentations, video clips of clinical interactions with patients and family members, and test questions. Presentation topics include, for example, strategies for dealing with screening results, managing referrals, and supportive counseling. We employed a matched pairs, pre-post survey design to assess the effect of the education program on confidence in screening and in providing initial supportive care. RESULTS: Our analysis of the first 147 matched pairs to complete the course suggests that satisfaction with the course was high. Statistically significant increases in confidence in relation to screening for distress and assessing distress, and in providing initial supportive care, were evident. SIGNIFICANCE OF RESULTS: Our ongoing experience with CAPO's Interprofessional Psychosocial Oncology Distance Education (IPODE) project (www.ipode.ca) project suggests that healthcare professionals value web-based learning for its accessibility and convenience. Such programs appear to offer excellent opportunities for cost-effective education that supports practice change.

Sex talk and cancer: who is asking.

Estimates of sexual health problems after cancer treatment range from 40% to 100% across cancers, with almost half of cancer survivors reporting problems with sexual functioning. While many side effects of cancer treatment gradually resolve within the first year or two, many sexual health issues do not. These problems can remain severe and constant and can even become worse over time causing considerable distress. Although sexual health issues are common, they are not addressed often enough in cancer settings. There are a variety of barriers to addressing sexual health concerns. In this lecture, we discuss those challenges and offer some possible approaches nurses could use to improve sexual health care, including the BATHE and the PLISSIT models. Case examples highlighting the models are included.

Knowing the family: interpretations of family nursing in oncology and palliative care.

PURPOSE: Families are acknowledged as a focus of care in oncology nursing in many countries but the meaning of "family nursing" in this practice setting has received little attention from researchers and theorists. In this article, we report the findings of a study that explored family nursing practices in three adult cancer care settings: ambulatory care (medical and radiation oncology clinics), a palliative care service, and an in-patient unit. METHOD: Data included in-depth interviews with 30 nurses and 19 families, as well as participant observations in each practice setting. The interviews were transcribed verbatim and the analyses guided by philosophical hermeneutics. RESULTS: We identified several narratives related to family nursing practices, and in this article we offer the interpretations of two of these narratives: 1) knowing the family and being known; and 2) addressing family concerns and distress. In knowing the family and being known nurses opened relational space for families to become involved in the care of their loved ones and gained an understanding of the family by "reading" non-verbal and para-verbal cues. Knowing the family created opportunities for nurses to address family concerns and distress in meaningful ways. These included guiding families by being a bridge, helping families to conserve relationships, and negotiating competing family agendas. Nurses relied on questioning practices to create relational space with, and among, family members. CONCLUSIONS: Implications for the development of family nursing practice, theory, and education are discussed.

Living the as-yet unanswered: spiritual care practices in family systems nursing.

A serious illness often creates suffering and precipitates a search for spiritual meaning. The purpose of this hermeneutic inquiry was to explore the meaning of spirituality and spiritual care practices in family systems nursing. The videotapes of 12 therapeutic conversations with three families living with serious illness were the primary data for the inquiry. Findings suggest that suffering embodies an invitation to respond to the spiritual. Identified spiritual care practices included gathering stories of illness and faith, opening space to reinterpret experiences from a spiritual perspective, drawing on imagination and metaphor, and listening with an opening silence. The therapeutic work with one family is highlighted. This inquiry revealed that spiritual care requires literacy in reading the spiritual, a willingness to respond to the particular and the unpredictable, and a belief that good care demands a wise and thoughtful response to the suffering other.

Language and power: ascribing legitimacy to interpretive research.

More than merely describing what constitutes a good or truthful interpretation, all judgments about the legitimacy of knowledge claims can be understood as enacting relations of power. That is, our understanding of what it means to make a reasonable claim to knowledge is already caught up in relations of power that privilege some perspectives and marginalize others. Language, understood as productive rather than reflective of meaning, both enables and constrains the kinds of statements we are entitled to make. Competing discourses do not exist equally in the world but rather differ in terms of what they are held to explain and what effect they have. The authors explore these issues and suggest that evaluating interpretive research involves not only epistemological issues but also questions of value and power.