Development of a psychosocial oncology core curriculum for multidisciplinary education and training: Initial content validation using the modified Delphi Method.

OBJECTIVE: Despite its four decade history, the multidisciplinary specialty of psychosocial oncology (PSO) has no official consensus on core content. In 2014, the American Psychosocial Oncology Society (APOS) Board charged the APOS Professional Education Committee with outlining curricular content needed for core competence. METHODS: Content validation was completed using a four-phase modified Delphi Method. During Phase I, a Professional Education Committee subgroup proposed domains and items, which were rated by the APOS Fellows and Board via online survey. During Phase II, Fellows completed a second, revised survey. Phase III incorporated early career members. Developmental and diversity items were integrated into each domain. In Phase IV, a larger group of subject matter experts were surveyed, with feedback incorporated. Validation across phases involved average rating thresholds, intraclass correlations, and final percent agreement. RESULTS: The Delphi Method supported 12 content domains: Cancer Basics, Psychosocial Oncology, Professional Development, Ethics, Emotional/Psychological Concerns, Sexuality and Relationship Concerns, Spiritual/Religious Concerns, Healthcare Communication and Decision Making, Social/Practical Problems, Caregiver Concerns, Cognitive Concerns, Physical Symptoms and Psychosocial Assessment/Treatment. High levels of agreement were achieved across domains (86%-100%) and items, with no significant rating differences by discipline. CONCLUSIONS: This proposed core content can enhance and standardize education and training in PSO including APOS' Virtual Psychosocial Oncology Core Curriculum, focused on broadly expanding the PSO workforce, particularly in underserved areas. Next steps include development of core competencies and establishment of online training modules based on this content validation.

Using the distress thermometer to guide electronic referrals to psychosocial services.

Purpose: Evaluate a new administration protocol of the distress thermometer (DT) and assess its use in guiding electronic referrals within the medical record.Design: Data were gathered as part of a quality improvement project.Sample: Any patient within Saint Luke's Cancer Institute from March of 2016 to December of 2017.Methods: The DT was administered at every appointment with surgical and medical oncology and on Mondays while completing radiation. A referral to supportive services was offered to any patient scoring a 4 or above.Findings: Referrals to all supportive services increased by 69%. Staff adherence to distress screening guidelines increased to 95.42% and patient refusal to accept referrals fell to 2.72%.Conclusion: Administering the DT on a more regular basis and utilizing the DT to guide electronic referrals is achievable and results in increased referrals to supportive services.Implications for psychosocial providers or policy: Utilizing the DT in this manner can increase the number of patients identified and treated for distress.

Cognitive function during and six months following chemotherapy for front-line treatment of ovarian, primary peritoneal or fallopian tube cancer: An NRG oncology/gynecologic oncology group study.

OBJECTIVES: Changes in cognitive function have been identified in and reported by many cancer survivors. These changes have the potential to impact patient quality of life and functional ability. This prospective longitudinal study was designed to quantify the incidence of change in cognitive function in newly diagnosed ovarian cancer patients throughout and following primary chemotherapy. METHODS: Eligible patients had newly diagnosed, untreated ovarian cancer and had planned to receive chemotherapy. Web-based and patient reported cognitive assessments and quality of life questionnaires were conducted prior to chemotherapy, prior to cycle four, after cycle six, and six months after completion of primary therapy. RESULTS: Two-hundred-thirty-one evaluable patients entered this study between May 2010 and October 2011. At the cycle 4 time point, 25.2% (55/218) of patients exhibited cognitive impairment in at least one domain. At the post-cycle 6 and 6-month follow up time points, 21.1% (44/208) and 17.8% (30/169) of patients, respectively, demonstrated impairment in at least one domain of cognitive function. There were statistically significant, but clinically small, improvements in processing speed (p<0.001) and attention (p<0.001) but not in motor response time (p=0.066), from baseline through the six-month follow up time period. CONCLUSIONS: This was a large, prospective study designed to measure cognitive function in ovarian cancer. A subset of patients had evidence of cognitive decline from baseline during chemotherapy treatment in this study as measured by the web-based assessment; however, changes were generally limited to no more than one domain.

An analysis of the distress thermometer problem list and distress in patients with cancer.

PURPOSE: Patients with a cancer diagnosis experience complex issues that can cause distress. The purpose of this study is to identify factors associated with overall distress for a diverse population of cancer survivors. METHODS: Researchers conducted a secondary data analysis of distress ratings (n = 1205) for people receiving outpatient care at a Midwestern US cancer center from 2005 to 2009 to describe the relationships between distress factors and need for assessment of distress. The screening tool was based on the distress thermometer (DT) scale and a modified problem list. Odds ratios and 95 % confidence intervals from this multivariable model were computed. RESULTS: Statistical analysis revealed that the items on the problem list that most contribute to being at risk for distress include financial, worry, nervousness, getting around, and sleep. The most highly associated risk factor for distress was worry. Those that were at risk for high distress were 5.57 times more likely to endorse problems related to worry. CONCLUSIONS: This research identifies which factors may be especially salient to the patient's perception of distress and help guide clinicians in developing targeted screening strategies and specific interventions based on patient response to the DT. It also points to the need for future research to more clearly characterize distress from the patient perspective and determine when interventions may be indicated.

Consuming untreated water in four southwestern Alaska Native communities: reasons revealed and recommendations for change.

In this article, the authors provide the first in-depth account of why some Alaska Native people drink untreated water when treated water is available. Their qualitative research was conducted in four Alaska Native village communities that have treated water available from a centralized distribution point. Most respondents (n = 172; 82%) reported that some of their household's drinking water came from an untreated source. Motives for drinking untreated water emerged from analysis of open-ended questions about drinking water practice and could be categorized into six themes: chemicals, taste, health, access, tradition, and cost. Importantly, some residents reported consuming untreated water because they both liked untreated water and disliked treated water. As such, interventions to increase safe water consumption should address this dichotomy by providing education about the benefits of treated water alongside the risks involved with drinking untreated water. Based on the findings, the authors provide specific recommendations for developing behavior change interventions that address influences at multiple social-ecological levels.

Breaking the chains: examining the endorsement of modern Jezebel images and racial-ethnic esteem among African American women.

The historical image of the Black Jezebel - a hypersexual, seductive and manipulative slave woman - has been one of the most pervasive and evolving images influencing the sexual socialization and perceptions of African American women today. This preliminary study examined generational differences in the endorsement of modern depictions of the Jezebel, as well as the relationship between racial-ethnic esteem and endorsement of this sexualised image. A total of 249 African American women completed an online, self-report questionnaire assessing study variables. Results suggested that younger women (aged 18-34) may exhibit higher endorsement of the modern Jezebel depictions. Additionally, aspects of racial-ethnic esteem may be linked to lower endorsement of modern Jezebel depictions among younger and older (55 years and older) African American women. Implications for future research and clinical practice are discussed.

Recommendations for evolving a doctor of nursing practice program.

As Doctor of Nursing Practice (DNP) programs have evolved within the nursing profession and nursing academia over the last 20 years, pedagogy and curriculum in DNP education have also continued to evolve. Educational innovation requires continuous assessment to ensure quality and efficacy are maintained. Using the Knowledge to Action (KTA) framework, we adapted the knowledge regarding best practices in a DNP program to fit our College of Nursing needs, our community of learners, and sustain this process improvement by implementing programmatic changes that enhanced the quality and rigor of the DNP program. A newly formed task force identified barriers and opportunities including lack of DNP-prepared faculty, changes needed to the scholarly project paper, revision of the DNP curricula, and a need for a mentor group model to replace the traditional committee structure. Recommendations to strengthen DNP programs include choosing a process model or framework to serve as a guideline for program evaluation and improvement, create a faculty-led task force that continuously monitors program elements, and conduct annual mini retreats to facilitate faculty discussion and review of program elements.

Developing a university-workforce partnership to address rural and frontier MCH training needs: the Rocky Mountain Public Health Education Consortium (RMPHEC).

The objective of the article is to provide the socio-cultural, political, economic, and geographic conditions that justified a regional effort for training maternal and child health (MCH) professionals in the Rocky Mountain region, describe a historical account of factors that led to the development of the Rocky Mountain Public Health Education Consortium (RMPHEC), and present RMPHEC as a replicable model developed to enhance practice/academic partnerships among state, tribal, and public health agencies and universities to enhance public health capacity and MCH outcomes. This article provides a description of the development of the RMPHEC, the impetus that drove the Consortium's development, the process used to create it, and its management and programs. Beginning in 1997, local, regional, and federal efforts encouraged stronger MCH training and continuing education in the Rocky Mountain Region. By 1998, the RMPHEC was established to respond to the growing needs of MCH professionals in the region by enhancing workforce development through various programs, including the MCH Certificate Program, MCH Institutes, and distance learning products as well as establishing a place for professionals and MCH agencies to discuss new ideas and opportunities for the region. Finally over the last decade local, state, regional, and federal efforts have encouraged a synergy of MCH resources, opportunities, and training within the region because of the health disparities among MCH populations in the region. The RMPHEC was founded to provide training and continuing education to MCH professionals in the region and as a venue to bring regional MCH organizations together to discuss current opportunities and challenges. RMPHEC is a consortium model that can be replicated in other underserved regions, looking to strengthen MCH training and continuing education.

Ethical considerations for community-based participatory research with Sami communities in North Finland.

This study examines the perspectives of Sami community members and university researchers regarding the ethical considerations for engagement in Community-Based Participatory Research (CBPR) with Sami communities in northern Finland. Key informant interviews were conducted with Sami people from Finland who were exposed to or participated in research in their communities as well as with researchers who have conducted research with the Sami in Finland across diverse topics. Five themes were identified: establishing trust, research preparation, research comprehension, research ethics, and inclusion in research. The differences in participant perspectives were compared based on their community versus researcher roles. Our findings emphasize the need for (1) strategies to develop and maintain trust between Sami communities and researchers; (2) methods to bridge concepts of bias projected onto Sami communities and researchers by the others' differing world views and beliefs about research; and (3) increased education in community-engaged methods for social and natural scientists working with Sami communities. This study supports the need for the development of formalized ethical protocols for conducting community-based engaged research with and for Sami people in Finland that ensure mutually beneficial research for all involved.

Adaptation of the barriers to help-seeking for trauma (BHS-TR) scale: a cross-cultural cognitive interview study with female intimate partner violence survivors in Iceland.

BACKGROUND: Even though traumatization is linked to substantially reduced health-related quality of life, help-seeking and service utilization among trauma survivors are very low. To date, there has not been available in Iceland a culturally attuned, self-reported measure on help-seeking barriers after trauma. This study aimed to translate and cross-culturally adapt the English version of Barriers to Help-Seeking for Trauma (BHS-TR) scale into the Icelandic language and context. METHODS: The BHS-TR was culturally adapted following well-established and rigorous guidelines, including forward-backward translation, expert committee review, and pretesting through cognitive interviews. Two rounds of interviews with 17 female survivors of intimate partner violence were conducted using a think-aloud technique and verbal probing. Data were analyzed using qualitative content analysis, a combination of deductive and inductive approaches. RESULTS: Issues with the BHS-TR that were uncovered in the study were classified into four categories related to general design, translation, cultural aspects, and post-trauma context. The trauma-specific issues emerged as a new category identified in this study and included concepts specific to trauma experiences. Therefore, modifications were of great importance-resulting in the scale becoming more trauma-informed. Revisions made to address identified issues improved the scale, and the process led to an Icelandic version, which appears to be semantically and conceptually equivalent to the original version; additionally, the results provided evidence of content validity. CONCLUSIONS: As a cognitive interview study, it adds to the growing cognitive interviewing methodology literature. Furthermore, the results provide essential insights into the self-report response process of trauma survivors, highlighting the significance of making health-related research instruments trauma-informed.

Effect of Advance Care Planning on Surrogate Decision Makers' Preparedness for Decision Making: Results of a Mixed-Methods Randomized Controlled Trial.

Background: Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role. Objective: To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP. Design: Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012-2017). Setting/Participants: Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses. Main Outcomes and Measures: Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: Very Prepared, Very Unprepared, or In Between Prepared and Unprepared. Themes and categories were compared across arms. Results: About 72.72% of spokespersons (144/198) reported being Very Prepared and 27.28% (54/198) reported being Very Unprepared or In Between with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions. Conclusions: Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions. Trial Registration: NCT02429479.

Distress in women with gynecologic cancer.

OBJECTIVE: The NCCN Distress Thermometer (DT) was administered to 143 women undergoing chemotherapy for gynecologic cancer over a two-year period. This report describes the frequency and character of psychological distress in this population and examines the effect of disease, treatment, and demographic variables on levels of distress. METHOD: The DT is a self-administered scale for patients to rate their level of distress from 0 to 10, where 0 represents no distress and 10 represents extreme distress. Further, patients are asked to choose from among 34 items that constitute sources of distress within the last week. All women who were undergoing their first chemotherapy treatment at the outpatient clinic at the University of Oklahoma Cancer Institute for either primary disease or recurrent disease were asked by the clinical nurses to complete the assessment prior to that first infusion. RESULTS: Over half (57%) of women reported a score of 4 or greater on the DT and were then assessed by the oncology psychologist. Women who were younger than age 60 and single were more likely to be distressed. There were no associations between the type of cancer, stage of cancer, or insurance status. CONCLUSIONS: A significant percentage (57%) of these women experienced distress at levels that indicate further evaluation is indicated. This study suggests that early screening and evaluation are essential in this group of cancer patients.

Effect of methylphenidate on fatigue in women with recurrent gynecologic cancer.

OBJECTIVE: Fatigue is the most common and often the most bothersome complaint of individuals who are treated for cancer. One intervention now commonly suggested to treat fatigue is the use of psychostimulant medication. Early studies indicate some success in individuals with a mixed cancer diagnoses. This study evaluates the effect of methylphenidate on fatigue in women with recurrent gynecologic cancer. METHOD: Thirty-two women treated for recurrent gynecologic cancer were prescribed methylphenidate at morning and noon over a 8-week period. Participants completed the Fatigue Symptom Inventory (FSI) along with assessments of quality of life and mood at baseline, week 2, 4 and 8 to determine changes in levels of fatigue experienced. RESULTS: Patients reported significant declines in fatigue (p=0.0001), and improvement in both mood (p=0.0020) and quality of life (p=0.0351) when comparing baseline scores to study end. CONCLUSIONS: This study provides support for the use of a psychostimulant to treat fatigue in women who have recurrent gynecologic cancer. It is particularly relevant for these patients with incurable disease who are facing the end of life.

Parental racial socialization profiles: Association with demographic factors, racial discrimination, childhood socialization, and racial identity.

The authors examined patterns of racial socialization practices in a sample of 212 African American mothers. They investigated the relation between parent profiles of racial socialization messages with child and parent demographic factors and race-related experiences, as well as parent racial identity attitudes. Using latent class analyses, the authors identified 3 patterns of parent-reported racial socialization experiences: multifaceted, low race salience, and unengaged. In general, findings indicate that mothers in the multifaceted profile were more educated, experienced more racial discrimination, and talked about race during their childhood more than mothers in the unengaged profile. The multifaceted profile also differed from the low race salience and unengaged profiles on several racial identity dimensions. Although the patterned approach used in this study lends itself to a more complex study of racial socialization in future research, it also highlights the associations between parent's race-relevant experiences and the messages they communicate to their children about race.

Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial.

CONTEXT: Spokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP. OBJECTIVES: To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress. METHODS: Secondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm). RESULTS: ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment. CONCLUSION: Identifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons.

The Development of a Measure of Alaska Native Community Resilience Factors through Knowledge Co-production.

BACKGROUND: The Alaska Native Community Resilience Study (ANCRS) is the central research project of the Alaska Native Collaborative Hub for Research on Resilience (ANCHRR), one of three American Indian and Alaska Native (AIAN) suicide prevention hubs funded by the National Institute of Mental Health. OBJECTIVE: This paper describes the development of a structured interview to identify and measure community-level protective factors that may reduce suicide risk among youth in rural Alaska Native communities. METHODS: Multilevel, iterative collaborative processes resulted in: a) expanded and refined constructs of community-level protection, b) clearer and broadly relevant item wording, c) respectful data collection procedures, and d) Alaska Native people from rural Alaska as primary knowledge-gathering interviewers. LESSONS LEARNED: Moving beyond engagement to knowledge co-production in Alaska Native research requires flexibility, shared decision-making and commitment to diverse knowledge systems; this can result in culturally attuned methods, greater tool validity, new ways to understand complex issues and innovations that support community health.

Traditional Food Practices, Attitudes, and Beliefs in Urban Alaska Native Women Receiving WIC Assistance.

OBJECTIVE: To identify practices, attitudes, and beliefs associated with intake of traditional foods among Alaska Native women. DESIGN: Cross-sectional study that measured traditional food intake; participation in food-sharing networks; presence of a hunter or fisherman in the home; the preference, healthfulness, and economic value of traditional foods; and financial barriers to obtaining these foods. PARTICIPANTS: Purposive sample of 71 low-income Alaska Native women receiving Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) assistance in Anchorage, AK. ANALYSIS: Bivariate and multivariate regression analyses. RESULTS: Traditional foods contributed 4% of total daily calories. Given a choice, 63% of participants indicated that they would prefer half or more of the foods they ate to be traditional (ie, not store-bought). The majority of participants (64%) believed that traditional foods were healthier than store-bought foods. Of all participants, 72% relied on food-sharing networks for traditional foods; only 21% acquired traditional foods themselves. Participants who ate more traditional foods preferred traditional foods (B = .011 P = .02). IMPLICATIONS FOR RESEARCH AND PRACTICE: Traditional food intake was low and findings suggested that Alaska Native women living in an urban setting prefer to consume more but are unable to do so. Future research might examine the effect of enhancing social networks and implementing policies that support traditional food intake.

A Novel Approach to Improve Health Literacy in Immigrant Communities.

BACKGROUND: Anchorage, Alaska, has a large immigrant and refugee population. In fact, it is one of the most ethnically diverse cities in the United States with almost 100 languages spoken by children in the public school system. The city's immigrant and refugee population speaks limited English, and most of these residents are unfamiliar with where or how to obtain health care services through the American health care system. BRIEF DESCRIPTION OF ACTIVITY: We developed a peer language navigator (PLN) program. IMPLEMENTATION: The Anchorage Health Literacy Collaborative developed a community-wide program to address the health literacy needs of the city's immigrant and refugee population. Select people who attended Anchorage's adult literacy program (the Alaska Literacy Program) were chosen to learn about health and wellness topics as well as how to obtain health information from reliable online sources. These people, initially known as PLNs, were then trained to share health information resources with their respective communities. RESULTS: A recent evaluation of the program using ripple effects mapping showed that the program has demonstrated wide success, providing understandable health information to hundreds of new English learners throughout the area and guiding them to reliable health and wellness information they can use for themselves, their families, and their community. PLNs have become leaders in their communities and have been renamed peer leader navigators. LESSONS LEARNED: For similar programs to be successful, PLNs should be trained using adult learning principles, allowing them to focus on topics and issues of interest to them. The program should link with community organizations to extend the reach of the program. Care must be exercised to avoid overextending or overwhelming PLNs because after they become leaders in their communities, they will receive many requests to provide guidance and education. Finally, when possible, PLNs should be compensated so they can more fully devote their efforts to serving the community. [HLRP: Health Literacy Research and Practice. 2019;3(Suppl.):S15-S24.]. PLAIN LANGUAGE SUMMARY: The Anchorage Health Literacy Collaborative in Alaska developed a program in which immigrant and refugees attending the city's adult education program to learn beginning English are chosen to serve as peer language navigators (PLNs). The PLNs learn how to obtain credible and easy-to-understand health information and then share it with their respective cultural communities. Lessons learned over time are shared.

Community mobilization for rural suicide prevention: Process, learning and behavioral outcomes from Promoting Community Conversations About Research to End Suicide (PC CARES) in Northwest Alaska.

RATIONALE: This study evaluates the process and preliminary outcomes of Promoting Community Conversations About Research to End Suicide (PC CARES), an intervention that brings key stakeholders together so they can discuss suicide prevention research and find ways to put it into practice. Originally piloted in remote and rural Alaskan communities, the approach shows promise. METHOD: Using a multi-method design, the study describes a series of locally-facilitated "learning circles" over 15 months and their preliminary results. Sign-in sheets documented participation. Transcriptions of audio-recorded sessions captured facilitator fidelity, accuracy, and the dominant themes of community discussions. Linked participant surveys (n=83) compared attendees' perceived knowledge, skills, attitudes, and their 'community of practice' at baseline and follow-up. A cross-sectional design compared 112 participants' with 335 non-participants' scores on knowledge and prevention behaviors, and considered the social impact with social network analyses. RESULTS: Demonstrating feasibility in small rural communities, local PC CARES facilitators hosted 59 two to three hour learning circles with 535 participants (376 unique). Local facilitators achieved acceptable fidelity to the model (80%), and interpreted the research accurately 81% of the time. Discussions reflected participants' understanding of the research content and its use in their lives. Participants showed positive changes in perceived knowledge, skills, and attitudes and strengthened their 'community of practice' from baseline to follow-up. Social network analyses indicate PC CARES had social impact, sustaining and enhancing prevention activities of non-participants who were 'close to' participants. These close associates were more likely take preventive actions than other non-participants after the intervention. CONCLUSION: PC CARES offers a practical, scalable method for community-based translation of research evidence into selfdetermined, culturally-responsive suicide prevention practice.