Family Carers' Experiences of Goals of Care Conversations in Acute Hospital Settings.

End-of-life Goals of Care (GoC) discussions aim to support care that is consistent with patients' preferences and values. This study uses an exploratory qualitative design drawing upon a social constructivist epistemology to examine family carers' perspectives on GoC within acute Australian hospital settings. Twenty-five family carers of aging inpatients were recruited from six Australian hospitals to participate in recorded, semi-structured interviews. Data were transcribed and analyzed using reflexive thematic analysis. Three main themes were developed. Theme 1 explored carers' experiences of GoC discussions-identifying varying levels of preparedness and carers' hopes for open, two-way discussions initiated by empathic Health Care Professionals (HCPs). Theme 2 examined carers' unmet needs for time, space, consistency, and support to make careful decisions. Theme 3 identified carers advocating for patients' needs when they could not do it themselves. Preparing carers and normalizing GoC discussions relating to end-of-life care maximizes benefits for patients, carers, and HCPs involved.

Mindfulness-Based Compassion Training for Health Professionals Providing End-of-Life Care: Impact, Feasibility, and Acceptability.

Background: Health professionals who care for patients and their families at the end of life (EOL) may experience gratitude, and enhanced spirituality and meaning in life, yet they are also at increased risk of psychological distress, compassion fatigue, and occupational burnout given the stressors they encounter in their work. Objectives: This research evaluated the feasibility and acceptability of a novel six-week mindfulness-based compassion training intervention, which was tailored to health professionals involved in EOL care ("MBCT4HP"), and explored its impact on levels of psychological distress, compassion fatigue, compassion satisfaction, occupational burnout, self-compassion, and mindfulness. Design: We adopted an observational, repeated measures pilot study. Setting/Subjects: Thirty-one health professionals participated. The intervention comprised six, weekly sessions (totaling seven hours) designed to foster compassion for self and others, including formal and informal compassion and mindfulness practices, daily home practice, and a reflective experiential pedagogy. Measurements: Validated outcome measures for anxiety, depression, and stress; compassion satisfaction, compassion fatigue (burnout, secondary traumatic stress); occupational burnout (emotional exhaustion, personal accomplishment, and depersonalization), self-compassion, and mindfulness were administered at baseline, end of intervention, and eight weeks postintervention. The feasibility and acceptability of the intervention was assessed using attendance records, home practice logs, and self-report satisfaction items. Descriptive statistics and Generalized Linear Mixed Models were used to analyze the data. Results: Participants reported that the sessions were useful, relevant, easy to understand, and that they gave them sufficient knowledge to implement the strategies learned. Levels of anxiety, compassion fatigue (burnout only), and emotional exhaustion decreased over time with some decay in effects at follow up, and levels of compassion satisfaction and self-compassion increased with time. Conclusions: The intervention was feasible and acceptable to health professionals involved in EOL care and had a positive impact on levels of anxiety, compassion fatigue (burnout), emotional exhaustion, compassion satisfaction, and self-compassion.

A Qualitative Exploration of Seriously Ill Patients' Experiences of Goals of Care Discussions in Australian Hospital Settings.

BACKGROUND: Goals of care (GOC) is a communication and decision-making process that occurs between a clinician and a patient (or surrogate decision-maker) during an episode of care to facilitate a plan of care that is consistent with the patient's preferences and values. Little is known about patients' experiences of these discussions. OBJECTIVE: This study explored patients' perspectives of the GOC discussion in the hospital setting. DESIGN: An explorative qualitative design was used within a social constructionist framework. PARTICIPANTS: Adult patients were recruited from six Australian hospitals across two states. Eligible patients had had a GOC discussion and they were identified by the senior nurse or their doctor for informed consent and interview. APPROACH: Semi-structured individual or dyadic interviews (with the carer/family member present) were conducted at the bedside or at the patient's home (for recently discharged patients). Interviews were audio-recorded and transcribed verbatim. Data were analysed for themes. KEY RESULTS: Thirty-eight patient interviews were completed. The key themes identified were (1) values and expectations, and (2) communication (sub-themes: (i) facilitators of the conversation, (ii) barriers to the conversation, and (iii) influence of the environment). Most patients viewed the conversation as necessary and valued having their preferences heard. Effective communication strategies and a safe, private setting were facilitators of the GOC discussion. Deficits in any of these key elements functioned as a barrier to the process. CONCLUSIONS: Effective communication, and patients' values and expectations set the stage for goals of care discussions; however, the environment plays a significant role. Communication skills training and education designed to equip clinicians to negotiate GOC interactions effectively are essential. These interventions must also be accompanied by systemic changes including building a culture supportive of GOC, clear policies and guidelines, and champions who facilitate uptake of GOC discussions.

A Tripartite Model of Community Attitudes to Palliative Care.

BACKGROUND: Despite a growth in palliative care services, access and referral patterns are inconsistent and only a minority of people who would benefit from such care receive it. Use of palliative care is also affected by community attitudes toward palliative care. As such, determining community attitudes toward palliative care is crucial. We also need to determine what predicts attitudes in order to provide appropriate information and education. OBJECTIVES: The 2 research questions were: (1) What are community attitudes toward palliative care? and (2) what are the determinants of community attitudes toward palliative care? DESIGN: A tripartite model of attitudes was used, which articulates attitudes as comprising knowledge and experience, emotions, and beliefs. A cross-sectional descriptive survey was used. PARTICIPANTS: A community sample of 180 participants completed the survey. RESULTS: The average attitude and belief responses were very positive, the average emotions responses were somewhat positive. The sample had good knowledge of palliative care. Lowest knowledge scores were reported for the items: "Euthanasia is not part of palliative care," "Palliative care does not prolong or shorten life," and "Specialist palliative care is only available in hospitals." After controlling place of birth and age, it was found that beliefs, emotions, and knowledge each accounted for a significant proportion of unique variance in attitude toward palliative care. Each variable had a positive relationship with attitude. CONCLUSION: Beliefs, emotions, and knowledge all need to be incorporated into palliative care community education programs.

Psychological outcomes and surgical decisions after genetic testing in women newly diagnosed with breast cancer with and without a family history.

In patients with early breast cancer, personal and tumour characteristics other than family history are increasingly used to prompt genetic testing to guide women's cancer management (treatment-focused genetic testing, 'TFGT'). Women without a known strong family history of breast and/or ovarian may be more vulnerable to psychological sequelae arising from TFGT. We compared the impact of TFGT in women with (FH+) and without (FH-) a strong family history on psychological adjustment and surgical decisions. Women aged <50 years with high-risk features were offered TFGT before definitive breast cancer surgery and completed self-report questionnaires at four time points over 12 months. All 128 women opted for TFGT. TFGT identified 18 carriers of a disease-causing variant (50.0% FH+) and 110 non-carriers (59.1% FH+). There were no differences based on family history in bilateral mastectomy (BM) uptake, p = .190, or uptake of risk-reducing bilateral salpingo-oophorectomy (RRBSO), p = .093. FH- women had lower decreases in anxiety a year after diagnosis, p = .011, and regret regarding their decision whether to undergo BM, p = .022, or RRBSO, p = .016 than FH + women. FH- carriers reported significantly higher regret regarding their TFGT choice (p = .024) and test-related distress (p = .012) than FH + carriers, but this regret/distress could not be attributed to a concern regarding a possible worse prognosis. These findings indicate that FH- women may require additional counselling to facilitate informed decisions. Carriers without a family history may require additional follow-up counselling to facilitate psychological adjustment to their positive variant results, extra support in making surgical decisions, and counselling about how best to communicate results to family members.

Detecting Distress: Introducing Routine Screening in a Gynecologic Cancer Setting.

BACKGROUND: Cancer results in a wide range of challenges that contribute to patient distress. Detecting distress in patients can result in improved patient outcomes, and early intervention can avoid patients having unmet needs. OBJECTIVES: The aims were to determine the prevalence of distress in patients with gynecologic cancers, identify specific problems, and explore staff perceptions of distress screening. METHODS: A mixed-methods design was used. Quantitative data were collected on distress levels and problems. Qualitative interviews were conducted with healthcare professionals. FINDINGS: Sixty-six percent of women scored 4 or greater on the Distress Thermometer, which was used as the indicator for follow-up or referral. A third reported low distress, and the same proportion was highly distressed. The top five problems identified by participants were nervousness, worry, fears, fatigue, and sleep problems.

Communicating with patients from minority backgrounds: Individual challenges experienced by oncology health professionals.

PURPOSE: Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally diverse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses' and oncologists' individual experiences and challenges in communicating with patients from minority backgrounds. METHOD: Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed individually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically. RESULTS: The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques. CONCLUSIONS: Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs.

Streamlined genetic education is effective in preparing women newly diagnosed with breast cancer for decision making about treatment-focused genetic testing: a randomized controlled noninferiority trial.

PURPOSE: Increasingly, women newly diagnosed with breast cancer are being offered treatment-focused genetic testing (TFGT). As the demand for TFGT increases, streamlined methods of genetic education are needed. METHODS: In this noninferiority trial, women aged <50 years with either a strong family history (FH+) or other features suggestive of a germ-line mutation (FH-) were randomized before definitive breast cancer surgery to receive TFGT education either as brief written materials (intervention group (IG)) or during a genetic counseling session at a familial cancer clinic (usual-care group (UCG)). Women completed self-report questionnaires at four time points over 12 months. RESULTS: A total of 135 women were included in the analysis, all of whom opted for TFGT. Decisional conflict about TFGT choice (primary outcome) was not inferior in the IG compared with the UCG (noninferiority margin of -10; mean difference = 2.45; 95% confidence interval -2.87-7.76; P = 0.36). Costs per woman counseled in the IG were significantly lower (AUD$89) compared with the UCG (AUD$173; t(115) = 6.02; P < 0.001). CONCLUSION: A streamlined model of educating women newly diagnosed with breast cancer about TFGT seems to be a cost-effective way of delivering education while ensuring that women feel informed and supported in their decision making, thus freeing resources for other women to access TFGT.Genet Med 19 4, 448-456.

"Undressing" distress among cancer patients living in urban, regional, and remote locations in Western Australia.

PURPOSE: People diagnosed with cancer from rural and remote locations may experience heightened distress because of distance from cancer treatment and support services. We examined whether remoteness and other factors are associated with psychosocial distress and explored commonly reported problems among cancer patients in Western Australia (WA). METHODS: In a cross-sectional study, cancer patients newly referred to a Cancer Council WA Cancer Support Coordinator (CSC) were screened and assessed using the Distress Thermometer (DT) and Problem List (PL) and a standardized form, respectively. The index of remoteness was the Australian Standard Geographical Classification. The association between remoteness, demographic variables, and the frequency of problems endorsed on the PL was analyzed using bivariate analyses and a generalized linear mixed model (GLMM) regression. RESULTS: Of 1032 patients referred to a CSC, 466 were screened (45.2 %) with complete data available for 441 patients. Patients from remote areas reported fewer problems than patients from urban and regional locations. Increasing remoteness was not associated with higher distress (r = -0.04, p = 0.43). Concerns reported differed by remoteness category and included worry, sadness, fears, finances, transportation, and physical symptoms. More emotional problems were independently associated with higher distress (ß = 0.47, p < 0.001), explaining 17.31 % of the variance. CONCLUSIONS: There is no evidence that increasing remoteness is associated with higher distress. Emotional concerns and physical problems appear to be prevalent among cancer patients irrespective of urban or rural location. Specific concerns detected by distress screening, particularly emotional concerns, may warrant further assessment and targeted referrals.

Online prostate cancer screening decision aid for at-risk men: a randomized trial.

OBJECTIVE: This study examines the efficacy of an online screening decision aid (DA) for men with a family history of prostate cancer. METHODS: Unaffected Australian men (40-79 years) with at least one affected relative completed the first online questionnaire, were randomized to read either the tailored DA (intervention) or nontailored information about prostate cancer screening (control), then completed a questionnaire postreading and 12 months later. The primary outcome was decisional conflict regarding prostate specific antigen (PSA) testing. The impact of the DA on longitudinal outcomes was analyzed by using random intercept mixed effects models. Logistic and linear regressions were used to analyze the impact of the DA on screening behavior and decision regret. Stage of decision-making was tested as a moderator for decisional conflict and decision regret. The frequency of online material access was recorded. RESULTS: The DA had no effect on decisional conflict, knowledge, inclination toward PSA testing, accuracy of perceived risk, or screening behavior. However, among men considering PSA testing, those who read the DA had lower decision regret compared with men who read the control materials, ß = 0.34, p < .001, 95% confidence interval (CI) = [.22, .53]. CONCLUSIONS: This is the first study to our knowledge to evaluate the uptake and efficacy of an online screening DA among men with a family history of prostate cancer. Men who were undecided about screening at baseline benefitted from the DA, experiencing less regret 12 months later. In relation to decisional conflict, the control materials may have operated as a less complex and equally informative DA.

Communication and information needs of women diagnosed with ovarian cancer regarding treatment-focused genetic testing.

PURPOSE/OBJECTIVES: To identify women's information and communication preferences about treatment-focused genetic testing (TFGT) in the ovarian cancer context. RESEARCH APPROACH: A qualitative interview study. SETTING: Two familial cancer services and a gynecologic oncology clinic at a major teaching hospital in Australia. PARTICIPANTS: 22 women diagnosed with ovarian cancer who had either advanced disease and had previously undergone TFGT (n = 12) or had been diagnosed in the previous 6-20 weeks with ovarian cancer and had not undergone TFGT (n = 10). METHODOLOGIC APPROACH: Participants were interviewed individually about actual and hypothetical views of TFGT. The interviews were transcribed and organized into themes using qualitative analysis software. FINDINGS: Most women wanted to be informed about TFGT prior to their surgery for ovarian cancer. The majority preferred to receive the information verbally; slightly more women preferred their medical oncologist to deliver the information compared to a genetic specialist or oncology nurse. Women preferred the focus of pretest information to be on them and their treatment. CONCLUSIONS: Women diagnosed with ovarian cancer want information about genetic testing early with focus placed on the potential benefits of genetic testing on treatment. INTERPRETATION: The findings of this study provide much-needed guidance to oncology nurses and other oncology healthcare professionals about when, what, and how information about TFGT should be delivered to patients diagnosed with ovarian cancer. Supportive patient education materials now need to be developed to assist these women in making informed decisions about genetic testing. KNOWLEDGE TRANSLATION: Knowing that women do want TFGT, how they want it presented and by whom, and the content and level of detail that women want means that TFGT can now be presented as an option to women newly diagnosed with ovarian cancer, which may influence firstline treatment. The findings also provide the knowledge required to prepare education tools to assist oncology nurses involved in frontline care.

How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer.

BACKGROUND: Germline BRCA1 and BRCA2 mutation testing offered shortly after a breast cancer diagnosis to inform women's treatment choices - treatment-focused genetic testing 'TFGT' - has entered clinical practice in specialist centers and is likely to be soon commonplace in acute breast cancer management, especially for younger women. Yet the optimal way to deliver information about TFGT to younger women newly diagnosed with breast cancer is not known, particularly for those who were not suspected of having a hereditary breast cancer syndrome prior to their cancer diagnosis. Also, little is known about the behavioral and psychosocial impact or cost effectiveness of educating patients about TFGT. This trial aims to examine the impact and efficiency of two models of educating younger women newly diagnosed with breast cancer about genetic testing in order to provide evidence for a safe and effective future clinical pathway for this service. DESIGN/METHODS: In this non-inferiority randomized controlled trial, 140 women newly diagnosed with breast cancer (aged less than 50 years) are being recruited from nine cancer centers in Australia. Eligible women with either a significant family history of breast and/or ovarian cancer or with other high risk features suggestive of a mutation detection rate of > 10% are invited by their surgeon prior to mastectomy or radiotherapy. After completing the first questionnaire, participants are randomized to receive either: (a) an educational pamphlet about genetic testing (intervention) or (b) a genetic counseling appointment at a family cancer center (standard care). Each participant is offered genetic testing for germline BRCA mutations. Decision-related and psychosocial outcomes are assessed over 12 months and include decisional conflict (primary outcome);uptake of bilateral mastectomy and/or risk-reducing salpingo-oophorectomy; cancer-specific- and general distress; family involvement in decision making; and decision regret. A process-oriented retrospective online survey will examine health professionals' attitudes toward TFGT; a health economic analysis will determine the cost effectiveness of the intervention. DISCUSSION: This trial will provide crucial information about the impact, efficiency and cost effectiveness of an educational pamphlet designed to inform younger women newly diagnosed with breast cancer about genetic testing. Issues regarding implementation of the trial are discussed.

Development and pilot testing of an online screening decision aid for men with a family history of prostate cancer.

OBJECTIVE: This study aimed to develop and pilot test an online screening decision aid (DA) for men with a family history of prostate cancer. METHODS: Eligible men (with no previous prostate cancer diagnosis) were recruited through relatives attending a urology outpatient clinic. Men evaluated the DA in two stages. First, they appraised a paper-based version using a questionnaire (n=22). Second, the same men were asked to reflect on an interactive web-based version via a semi-structured telephone interview (n=20). RESULTS: Men evaluated both forms of the DA positively. Of the paper-based version, the majority of participants found the DA useful (91%), and that it contained enough information to make a screening decision (73%). All participants reported that the online DA was easy to use and navigate. Most participants reported that a website was their preferred mode of receiving prostate cancer screening information (70%). CONCLUSION: The developed DA may represent the first online decision-making tool designed specifically for men with a family history prostate cancer that presents age and risk specific information to the user. PRACTICE IMPLICATIONS: Comprehensive evaluations of the efficacy and impact of educational interventions such as this are crucial to improve services for individuals making informed screening decisions.

Automatic evaluation of body-related words among young women: an experimental study.

BACKGROUND: Previous research has demonstrated that exposure to images depicting the thin female ideal has negative effects on some females' levels of body dissatisfaction. Much of this research, however, has utilised relatively long stimulus exposure times; thereby focusing on effortful and conscious processing of body-related stimuli. Relatively little is known about the nature of females' affective responses to the textual components of body-related stimuli, especially when these stimuli are only briefly encountered. The primary aim of the current research was to determine whether young women automatically evaluate body-related words and whether these responses are associated with body image concerns, including self-reported levels of appearance schematicity, thin internalisation, body dissatisfaction, and dietary restraint. METHODS: An affective priming task was used to investigate whether females automatically evaluate body-related words, and whether this is associated with self-reported body image concerns. In a within-participants experimental design, the valence congruence of the prime and target pairs was manipulated. Participants selected body words as primes in Experiment 1 (N = 27), while normatively selected body words were primes in Experiment 2 (N = 50). Each prime was presented briefly, followed by a target word which participants judged as "good" or "bad". The dependent variable was response latency to the target. RESULTS: Automatic evaluation was evident: responding to congruent pairs was faster than responding to incongruent pairs. Body image concerns were unrelated to automaticity. CONCLUSIONS: The findings suggest that brief encounters with body words are likely to prompt automatic evaluation in all young women, and that this process proceeds unintentionally and efficiently, without conscious guidance.

Attitudes toward organ donation and donor behavior: a review of the international literature.

OBJECTIVE: To conduct a systematic review of published research that assessed the predictors of attitudes toward deceased organ donation, willingness to donate, and donor behavior. DATA SOURCES: MEDLINE, PreMEDLINE, PsycInfo, and the Cumulative Index to Nursing and Allied Health Literature were searched for the period from 1988 to 2009. STUDY SELECTION: Eligible studies included members of the general public (i.e., not transplant recipients, donor families, or health professionals) and used multivariate analyses for quantitative assessment of predictors. Data Extraction-The search identified 33 relevant studies. Owing to heterogeneity in populations and measures, results were summarized rather than subjected to meta-analysis. DATA SYNTHESIS: Research suggests that individuals who are younger, female, have higher education levels and socioeconomic status, hold fewer religious beliefs, have high knowledge levels, know others with positive attitudes, are more altruistic, and have fewer concerns about manipulation of the body of the deceased donor are more likely to have positive attitudes toward donation and are more willing to donate their organs. CONCLUSIONS: The review revealed the complexity of individuals' attitudes toward donation and the need for more sophisticated future studies of the interactions between the broader factors influencing donation (such as social norms and existing legislation in each country) and individual factors, such as attitudes and beliefs. (Progress in Transplantation.