Enhancing care: evaluating the impact of True North Sexual Health and Rehabilitation eTraining for healthcare providers working with prostate cancer patients and partners.

Background: Educational programs that enhance healthcare providers' competence in managing the care of patients with sexual dysfunction following prostate cancer treatments are needed to facilitate comprehensive sexual health treatments for patients and their partners. Aim: In this study we evaluated the impact of a real-world online sexual health educational intervention called the True North Sexual Health and Rehabilitation eTraining Program. This program is designed to increase healthcare providers' knowledge and self-efficacy in providing sexual healthcare to prostate cancer patients and their partners. Methods: Healthcare providers were invited to join a 12-week virtual training program. Participants completed precourse surveys (n = 89), retrospective prepost surveys (n = 58), and a 3-month follow-up survey (subset n = 18) to assess retention of relevant outcomes. Additionally, a course satisfaction survey was administered to participants (n = 57) at the end of the course. Outcomes: The main outcomes focused on participants' perceived knowledge and self-efficacy in conducting assessments and providing interventions for various relevant physical, functional, psychological, and relational domains of sexual dysfunction in prostate cancer patients and their partners. Results: According to the retrospective analysis of post-then-pre-survey results, graduates perceived that their knowledge of and self-efficacy in providing sexual health counseling improved after completing the course. The 3-month follow-up survey indicated that the course graduate self-efficacy remained high 3 months after the course. Furthermore, the satisfaction survey indicated that a vast majority (98.2%) of participants were satisfied with the educational intervention. Clinical Implications: This real-world sexual health educational intervention can increase self-efficacy and knowledge in healthcare providers who are supporting prostate cancer patients dealing with sexual dysfunction. Strengths and Limitations: The use of a retrospective post-then-pre-survey helped to mitigate response shift bias while minimizing data gaps. However, it is important to note that this investigation was not a traditional research study and lacked a control group, thus limiting causal attributions. Conclusion: The True North Sexual Health and Rehabilitation eTraining program acts as an accessible and effective resource for healthcare providers seeking specialized training in providing sexual healthcare for prostate cancer patients and their partners.

Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel.

BACKGROUND: Patients with prostate cancer suffer significant sexual dysfunction after treatment which negatively affects them and their partners psychologically, and strain their relationships. AIM: We convened an international panel with the aim of developing guidelines that will inform clinicians, patients and partners about the impact of prostate cancer therapies (PCT) on patients' and partners' sexual health, their relationships, and about biopsychosocial rehabilitation in prostate cancer (PC) survivorship. METHODS: The guidelines panel included international expert researchers and clinicians, and a guideline methodologist. A systematic review of the literature, using the Ovid MEDLINE, Scopus, CINAHL, PsychINFO, LGBT Life, and Embase databases was conducted (1995-2022) according to the Cochrane Handbook for Systematic Reviews of Interventions. Study selection was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Each statement was assigned an evidence strength (A-C) and a recommendation level (strong, moderate, conditional) based on benefit/risk assessment, according to the nomenclature of the American Urological Association (AUA). Data synthesis included meta-analyses of studies deemed of sufficient quality (3), using A Measurement Tool to Assess Systematic Reviews (AMSTAR). OUTCOMES: Guidelines for sexual health care for patients with prostate cancer were developed, based on available evidence and the expertise of the international panel. RESULTS: The guidelines account for patients' cultural, ethnic, and racial diversity. They attend to the unique needs of individuals with diverse sexual orientations and gender identities. The guidelines are based on literature review, a theoretical model of sexual recovery after PCT, and 6 principles that promote clinician-initiated discussion of realistic expectations of sexual outcomes and mitigation of sexual side-effects through biopsychosocial rehabilitation. Forty-seven statements address the psychosexual, relationship, and functional domains in addition to statements on lifestyle modification, assessment, provider education, and systemic challenges to providing sexual health care in PC survivorship. CLINICAL IMPLICATIONS: The guidelines provide clinicians with a comprehensive approach to sexual health care for patients with prostate cancer. STRENGTHS & LIMITATIONS: The strength of the study is the comprehensive evaluation of existing evidence on sexual dysfunction and rehabilitation in prostate cancer that can, along with available expert knowledge, best undergird clinical practice. Limitation is the variation in the evidence supporting interventions and the lack of research on issues facing patients with prostate cancer in low and middle-income countries. CONCLUSION: The guidelines document the distressing sexual sequelae of PCT, provide evidence-based recommendations for sexual rehabilitation and outline areas for future research. Wittmann D, Mehta A, McCaughan E, et al. Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel. J Sex Med 2022;19:1655-1669.

Treatment Satisfaction With Couplelinks Online Intervention to Promote Dyadic Coping in Young Couples Affected by Breast Cancer.

Background: This study evaluated participant satisfaction with "Couplelinks," an online psychological intervention designed for younger couples coping with breast cancer. The program included six experiential learning exercises (plus one optional module), psychoeducational information, and support from a personal mental health professional. Objective: The primary objectives were to examine participants' perceptions of: the online intervention's structure and content; the value of including a professional facilitator; and benefits and drawbacks of the program. Methods: A treatment satisfaction questionnaire comprised of Likert indices and open-ended questions pertaining to treatment satisfaction was completed by 26 patients and 27 male partners (N = 53) approximately 1-2 weeks following the intervention which occurred in the context of a randomized controlled trial. Descriptive statistics were used to summarize satisfaction ratings and generalized linear models with fixed effect for gender were used to test for differences in male-female outcomes. A thematic analysis was undertaken in order to understand, organize and summarize the qualitative textual feedback. Results: Participants reported an overall satisfaction rating of 4.3 out of 5 (SD = 0.54) with patient satisfaction ratings being higher than that of male partners' (p = 0.01). The majority of participants considered the facilitator's role to be necessary 4.6 (SD = 0.60), and found the program to be convenient 4.1 (SD = 0.81) despite some participants struggling to keep up with the modules. Subjective data revealed participants valued the convenience and flexibility of the online intervention and appreciated the program's involvement of both partners. Participants also reported that including a professional facilitator humanized the intervention, served as motivation to progress through the program, facilitated insight into their relationship, and was reassuring. Experiential gains noted by participants included that the program: helped couples to open channels of communication; prompted them to designate quality time for one another; evoked feelings of unity and togetherness; and inspired new insight in the relationship. Conclusion: Such feedback supports the feasibility and acceptability of the Couplelinks program while offering directions for improvement of online couple-based interventions in cancer.

Couplelinks online intervention for young couples facing breast cancer: A randomised controlled trial.

OBJECTIVE: Young women with breast cancer and their partners are more distressed than couples who are affected later in life. While dyadic interventions in the context of cancer are promising, there are access barriers, particularly for younger couples. This study evaluated Couplelinks, a professionally facilitated, web-based program designed to help couples improve their conjoint coping. METHOD: This randomised controlled trial employed a waitlist control evaluation of the program. Outcomes included dyadic coping, relationship adjustment, depression, and anxiety. RESULTS: Seventy-five couples consented to participate and were randomised. The final analysis included 31 couples in the treatment group and 36 couples in the waitlist group. Modest improvements were found in positive dyadic coping but effects were not maintained at 3-month follow-up. No effect was seen on overall relationship adjustment. CONCLUSIONS: Our findings inform the rapidly expanding field of online programming for couples in general, and those affected by BC in particular. Intervention timing, 'dose', low overall relational distress, and the mainly enrichment rather than problem-focus of Couplelinks may help explain the lack of change on relationship adjustment.

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.

Feasibility and acceptability of i-Restoring Body Image after Cancer (i-ReBIC): A pilot trial for female cancer survivors.

OBJECTIVE: This pilot study aimed to evaluate the feasibility, acceptability, and psychosocial outcomes of a text-based online group therapy intervention, i-Restoring Body Image after Cancer (i-ReBIC). i-ReBIC was developed to reduce body image distress and psychosexual dysfunction among women diagnosed and treated for breast or gynecological cancer. METHODS: i-ReBIC was adapted from an empirically tested face-to-face group therapy intervention, ReBIC. Over the 8-week intervention, participants engaged in 90-minute weekly text-based online discussions. Each week, a new topic associated with reconnecting to the body, adjusting to a postcancer identity, and improving psychosexual functioning was addressed. Homework assignments included readings, guided imagery exercises, and journaling. RESULTS: Sixty women with cancer enrolled in the pilot study. Among them, 47 completed the intervention, and 44 filled out all prestudy and poststudy questionnaires. Ninety-three percent of participants (n = 41) were satisfied and reported that it met their expectations. Eighty percent of participants (n = 35) reported no technical difficulties during the intervention. Preoutcome and postoutcome measures on body image distress and experience of embodiment showed statistically significant improvements. Psychosexual distress and quality of life also showed improvements but were not statistically significant. CONCLUSIONS: This study suggests that i-ReBIC is feasible, well accepted, and effective in addressing persistent body image concerns experienced by women treated for breast or gynecological cancer. As an online group therapy, i-ReBIC can expand the reach of its original face-to-face intervention by mitigating barriers and improving access to care in a cost-effective manner.

How Are Patients With Prostate Cancer Managing Androgen Deprivation Therapy Side Effects?

BACKGROUND: Androgen deprivation therapy (ADT) for prostate cancer has numerous side effects. Clinical guidelines for side effect management exist; however, these are not always integrated into routine practice. What remains undocumented and therefore the objective of this study, is to describe patients' willingness to employ established strategies. PATIENTS AND METHODS: Study participants were 91 men who had attended an educational program (ie, attend a class plus read a book), designed to prepare patients for managing ADT side effects. Three months later, patients completed the ADT Management Strategies Inventory, to determine use of strategies. Descriptive analyses were conducted. RESULTS: At the time of class attendance, the average ADT duration was 133 days. Patient preferences for a variety of strategies for each side effect are presented. Highlights include: a high degree (> 65%) of patients using or willing to use exercise to manage medical risks and physical side effects. Forty percent of patients continued to engage in non-penetrative sexual activities, despite reduced sexual desire and erectile dysfunction. CONCLUSIONS: When educated about options, patients are willing to use a wide array of ADT management strategies. Consequently, health care providers should ensure that patients know about side effects and how to manage them. Exercise appears to be the single best strategy to encourage, because it is helpful in managing many side effects (eg, weight gain, muscle weakening, fatigue) and reducing medical risks of ADT (eg, cardiovascular disease, type II diabetes, and osteoporosis). A general trend was patient's preference for behavioral and lifestyle strategies over pharmacologic interventions.

Enhancing clinical practice in the management of distress: The Therapeutic Practices for Distress Management (TPDM) project.

OBJECTIVE: The Therapeutic Practices for Distress Management (TPDM) project was carried out to support clinicians in integrating recommendations from four clinical practice guidelines (CPGs) in routine care at five Pan Canadian cancer care sites. METHODS: Using a concurrent, mixed-method study design and knowledge translation (KT) activities, this project included two phases: phase I-a baseline/preparation phase and phase II-an intervention phase plus evaluation. The intervention phase (the focus of this report) included a one-year education and supervision program (24 hours in virtual class; 12-hour group supervision). Primary outcomes were knowledge and self-efficacy in practicing CPGs as measured by a Knowledge and Self-Efficacy Survey (KSES). A secondary outcome was observer-rated performances with standardized patients (objective structured clinical exams). Participants included 80 (90%) nurses, and 9 (10%) social workers (N = 89). RESULTS: The TPDM program was effective in accomplishing change in knowledge, self-efficacy, and performance. All measures demonstrated significant change pre and post module, with evidence of increasing knowledge (P < .01) and confidence (P < .01) over time. Further, there was evidence of a shift in barriers and enablers to practicing in alignment with the CPGs. CONCLUSIONS: A tailored education program using case-based learning and supervision over time improves knowledge and practice among front line clinicians. The findings have implications for quality improvement in cancer care.

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.

Defining the Role of the Online Therapeutic Facilitator: Principles and Guidelines Developed for Couplelinks, an Online Support Program for Couples Affected by Breast Cancer.

Development of psychological interventions delivered via the Internet is a rapidly growing field with the potential to make vital services more accessible. However, there is a corresponding need for careful examination of factors that contribute to effectiveness of Internet-delivered interventions, especially given the observed high dropout rates relative to traditional in-person (IP) interventions. Research has found that the involvement of an online therapist in a Web-based intervention reduces treatment dropout. However, the role of such online therapists is seldom well articulated and varies considerably across programs making it difficult to discern processes that are important for online therapist involvement.In this paper, we introduce the concept of "therapeutic facilitation" to describe the role of the online therapist that was developed and further refined in the context of a Web-based, asynchronous psychosocial intervention for couples affected by breast cancer called Couplelinks. Couplelinks is structured into 6 dyadic learning modules designed to be completed on a weekly basis in consultation with a facilitator through regular, asynchronous, online text-based communication.Principles of therapeutic facilitation derived from a combination of theory underlying the intervention and pilot-testing of the first iteration of the program are described. Case examples to illustrate these principles as well as commonly encountered challenges to online facilitation are presented. Guidelines and principles for therapeutic facilitation hold relevance for professionally delivered online programs more broadly, beyond interventions for couples and cancer.

Talking with text: communication in therapist-led, live chat cancer support groups.

CancerChatCanada is a pan-Canadian initiative with a mandate to make professionally led cancer support groups available to more people in Canada. Although online support groups are becoming increasingly popular, little is known about therapist-led, synchronous groups using live chat. The purpose of this study was to generate a rich descriptive account of communication experiences in CancerChatCanada groups and to gain an understanding of processes associated with previously-reported benefits. We used interpretive description to analyze interview segments from 102 patients, survivors and family caregivers who participated in CancerChatCanada groups between 2007 and 2011. The analysis yielded four inter-related process themes (Reaching Out From Home, Feeling Safe, Emotional Release, and Talking With Text) and one outcome theme (Resonance and Kinship). The findings extend previous research about text-only online support groups and provide novel insights into features of facilitated, live chat communication that are valued by group members.

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.

The Interprofessional Psychosocial Oncology Distance Education (IPODE) project: perceived outcomes of an approach to healthcare professional education.

The Interprofessional Psychosocial Oncology Distance Education (IPODE) project was designed as an approach to the problems of feasibility and accessibility in specialty health professional education, in this case, psychosocial oncology (PSO). In this article, we report the evaluation findings from the first three years of the project in relation to one IPODE course, which was offered as a graduate level university elective in nine Canadian universities and as a continuing education (CE) option to health professionals between January 2008 and May 2010. The evaluation included a pre and post questionnaire that explored how an interprofessional (IP), web-based, PSO course influenced participants' knowledge, attitudes and beliefs about IP, person-centered PSO care. It also examined what attributes of a web-based platform were most effective in delivering an IP PSO course. The study yielded two key findings. First, web-based learning in a pan-Canadian and cross-university collaboration is a viable alternative to providing specialty education and significantly improves knowledge, attitudes and beliefs about IP, person-centered PSO care. Second, a web-based platform with real-time seminars, discussion boards and multiple audio visual resources that privilege first person illness narratives were important elements in expanding knowledge and shifting attitudes about IP practice and person-centered care in regards to PSO. In their evaluation, course participants highlighted a variety of ways in which the course expanded their vision about what constitutes an IP team and increased their confidence in interacting with healthcare professionals from professions other than their own.

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.

The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: opening Pandora's box.

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is a major treatment option for patients with hematological malignancies. Spouses are frequently asked to provide physical, psychological, and emotional support in both the acute care and outpatient settings, yet few studies have explored the nature and implications of their caring work beyond the acute care phase. OBJECTIVE: The aims of this exploratory study were to (1) highlight the effect of caregiving on the psychosocial health and well-being of spouses of HSCT recipients; (2) highlight the level of caregiver burden, depression, and/or secondary trauma experienced by spousal caregivers of HSCT recipients; and (3) identify when spouses are most vulnerable to caregiver burden, depression, and/or secondary trauma. METHOD/METHODOLOGICAL APPROACH: A mixed-method exploratory study was undertaken. Participants were followed over 1 year from immediately before transplantation to 1 year after transplantation. Descriptive statistics and thematic analysis highlighted the effect of spousal caregiving on psychosocial health and well-being. RESULTS: Eleven spouses participated in the study. Caregivers experienced caregiver burden, psychological distress (depression), and risk for secondary traumatic stress at 3 points in time over 1 year from before transplantation to 1 year after transplantation. CONCLUSIONS: Findings suggest that spouses may be at risk for adverse psychological effects as a result of their role in providing care for a partner undergoing HSCT. IMPLICATIONS FOR PRACTICE: Nurses need to integrate regular psychosocial assessments of caregivers to recognize the early signs of distress and intervene to support and promote psychosocial health and well-being.

Screening for distress: responding is a critical function for oncology nurses.

The practice of routine screening for distress in cancer populations has been gaining worldwide support over the past several years with the conceptualization of distress as the sixth vital sign. Across Canada, experience with screening for distress is growing, as cancer facilities implement screening programs. Early learning from these efforts has emphasized the need for a programmatic approach and the importance of oncology nurses in screening and providing the initial response to distress. To date, little has been written from the nursing perspective about the oncology nursing role in a program screening for distress and responding to the identified patient concerns. This article describes the current thinking about distress; explores how screening for and responding to distress is integral to oncology nursing practice; and shares the early learning and experiences of cancer nurses in implementing screening for distress initiatives.

Lived experiences of nurses as family caregivers in advanced cancer.

Research regarding experiences of nurses caring for family members with a cancer diagnosis is limited. To address this gap, a hermeneutic phenomenology approach was used to explore lived experiences of five nurses caring for family members living with advanced cancer. Their experiences were fraught with tensions and conflicts as they balanced the roles of nurse and caregiver. At the heart of their experiences was a sense of being caught in a web of conflicting expectations. Their struggles of expectations stemmed from anticipating the illness trajectory, expectations from family, expectations from other health professionals, and expectations from the nurse caregivers of themselves. Conflict between their professional and personal lives was most challenging. Implications of this care-giving situation are described.

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.

Evaluating an organized palliative care approach in patients with severe stroke.

BACKGROUND: A recent survey found few guidelines on the provision of palliative care following stroke; none examined the efficacy or results of any such process. The role of the patient's family in decision making and in conflicts with staff has not been evaluated. We sought to formally evaluate the use of locally-developed palliative care guidelines on our Acute Stroke Unit (ASU). METHODS: We retrospectively examined records of 104 patients who died on our ASU over a two-year period to determine if our existing palliative guidelines were reflected in clinical practice, and to identify conflicts that arose. Data on medical and nursing care, palliative decisions, and medication use were compared to the ASU's existing palliative care guidelines. Family concerns about the palliative process were also reviewed. RESULTS: Of patients admitted to the stroke unit, 104 (16% of total admissions) died. Ninety-four (90.4%) of these were palliated; all received routine nursing and comfort care prior to death. Median time from admission to palliation was 3.6 days; median time from admission to death was 8.5 days. Most had vital signs (98.9%), investigations (100%) and non-palliative medications (95.7%) stopped, and had nasogastric feeding (96.8%) and intravenous fluids (87.2%) withdrawn or never begun. Most were treated with morphine (93.6%) and scopolamine (81.9%). Concerns raised by family members centered around hydration and feeding (45.7%), doubts about palliative care (27.8%) and patient comfort (18.2%). CONCLUSIONS: A formal approach to palliation results in timely decisions regarding end of life care with relatively few conflicts. Further work to address the specific concerns of families is needed.