"The Materials Didn't Really Seem to Apply to Me": A Focus-Group Study on Young Women's Needs and Perspectives on Breast Cancer Educational Material.

Young women breast cancer survivors face unique challenges in navigating diagnosis and treatment information while also navigating their own life demands (i.e., fertility, childcare, careers). Special consideration to printed and online cancer educational materials distributed to young women should be evaluated for their suitability, but few studies have investigated the educational preferences and needs of young women cancer survivors. We sought to explore young women breast cancer survivors' needs and preferences regarding cancer educational material from diagnosis to survivorship. We used a qualitative design with convenience sampling of young women breast cancer survivors who completed active treatment at a medical center within the last 5 years to participate in semi-structured online focus groups from November 2020 to May 2021. Thirty-three young women (75.8% White, 12.1% Black, 12.1% other) participated in one of seven online focus groups, each lasting approximately 2 h. Four dominant themes emerged from the data: (1) initial interaction with online materials; (2) reasons for seeking printed and online materials; (3) disconnection of visuals; and (4) recommendations. Our findings revealed that young women were initially hesitant to seek online information, but later sought printed and online information after specific endorsement of materials. Current breast cancer materials lack content specific to young women's needs (i.e., reconstruction options), and graphics have little age and racial diversity. Oncology nurses may consider novel methods of education delivery, such as short videos to be shared easily on social media for specific content like scarring results and reconstruction options.

"I'm Not Fighting Anymore So What Do I Do Now?" Young Women's Challenges While Transitioning Out of Active Breast Cancer Treatment and into Survivorship.

Young women (18-45 years of age) with breast cancer often view the end of active treatment as a significant milestone. While completing treatment is largely celebrated, little is known about the immediate time after completing active treatment. The purpose of this qualitative, descriptive study was to explore the needs of young women survivors transitioning out of active breast cancer treatment and into survivorship. We used a qualitative design with convenience sampling of young women who completed active breast cancer treatment within the last 5 years to participate in semi-structured online focus groups from November 2020 to May 2021. Thematic analysis was used to reveal the needs as women transitioned out of active treatment and into survivorship. Thirty-three young women breast cancer survivors (75.8% White, 12.1% Black, 12.1% other) participated in 7 online focus groups each lasting approximately 90 min. Three dominant themes with accompanying subthemes emerged from the data: (1) "feeling like a different kind of woman" (physical [cognitive, weight, sexual] changes, emotional changes [defining normal, loss of purpose]); (2) lingering emotional trauma (active treatment, survivorship); and (3) recommendations (services needed, content needed). Participants in this study did not feel prepared for the physical and emotional changes associated with the transition from active treatment and into survivorship as identified in our 2 main themes of "feeling like a different kind of woman" and lingering emotional trauma. Participants recommended more thorough communication about expectations in survivorship focusing on physical aspects like cognitive, weight, and sexual changes as well emotional challenges like loss of identity in survivorship. More communication specific to young women could assist in the transition to survivorship.

An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit.

BACKGROUND: Occurring in up to 40% of all patients with cancer, the incidence of brain tumors has caused limited survival, a high psychosocial burden, and an increase in the loss of decision-making capability for the unique population. Although specific symptoms depend on the type of brain tumor, a clinical team of physicians, nurses, and other individuals commonly assist patients and their caregivers with how to tackle the upcoming challenges of their diagnosis. Despite the support from clinical team members, many patients and caregivers may still seek outside support through social media to process their emotions and seek comfort outside of the clinical setting. Specifically, online resources such as Reddit are used where users are provided with the anonymity they need to show their true behavior without fear of judgment. In this study, we aimed to examine trends from Reddit discussion threads on brain tumors to identify areas of need in patient care. OBJECTIVE: Our primary aims were to determine the type of Reddit user posting, classify the specific brain tumors that were the subject of the posts, and examine the content of the original posts. METHODS: We used a qualitative descriptive design to understand patients' and caregivers' unmet and met needs. We selected posts from the top-rated 100 posts from the r/braincancer subreddit from February 2017 to June 2020 to identify common themes using content analysis. RESULTS: The qualitative content analysis revealed how Reddit users primarily used the forum as a method to understand and process the emotions surrounding a brain tumor diagnosis. Three major topic areas from content analysis emerged as prominent themes, including (1) harnessing hope, (2) moving through the grief process, and (3) expressing gratitude toward other Reddit users. Most of the authors of the posts were patients with brain tumors (32/88, 36%) who used Reddit as a reflective journaling tool to process the associated emotions of a challenging diagnosis. CONCLUSIONS: This study shows the potential of Reddit to serve as a unique group therapy platform for patients affected by brain tumors. Our results highlight the support provided by the Reddit community members as a unique mechanism to assist cancer survivors and caregivers with the emotional processing of living with brain tumors. Additionally, the results highlight the importance of recommending Reddit as a therapeutic virtual community and the need for implementing online resources as a part of a health care professional's repertoire to understand the level of support they can give their patients.

Revising Recruitment for Focus Groups to Meet Shifting Needs During COVID-19.

BACKGROUND: The COVID-19 pandemic forced researchers to modify recruitment strategies to meet accrual goals for qualitative studies. Traditional methods of in-person recruiting and using paper marketing material were eliminated almost overnight at the onset of the pandemic. Researchers quickly adapted their recruitment strategies, but researchers had to shift local, in-person recruitment efforts to solely using online platforms. The shifting recruitment strategies were accompanied with unexpected challenges, but we were able to meet our accrual goal for focus groups. OBJECTIVES: The objective of this brief report is to explore new recruitment strategies that developed during the COVID-19 pandemic and offer suggestions for future online-based qualitative studies. RESULTS: Prior to COVID-19, we designed four main strategies (research registry, marketing material, social media, and provider endorsement) to recruit potential participants for focus groups as part of a qualitative, descriptive study involving young women breast cancer survivors. After the onset of COVID-19, we successfully adapted each of our initial four strategies to recruit potential participants in an incremental process. Using these adapted strategies, a total of 62 young women completed the first part of the data collection process prior to participating in a focus group. Thirty-three women participated in the focus groups, and the remaining 29 participants were lost to follow-up. The vast majority of participants were recruited through marketing material and social media after making strategic changes to recruitment. DISCUSSION: The most effective method of recruitment was the strategic use of marketing material and social media, and we offer suggestions for researchers considering online recruitment methods. We recommend that researchers use various social media platforms and specific hashtags and target their sample population at the onset of the study. The data collection changes initiated by the effects of COVID-19 may remain, and researchers can consider implementing permanent recruitment strategies to best meet the needs of this new landscape of conducing online focus groups.

Assessing COVID-19 Health Information on Google Using the Quality Evaluation Scoring Tool (QUEST): Cross-sectional and Readability Analysis.

BACKGROUND: The COVID-19 pandemic spurred an increase in online information regarding disease spread and symptomatology. OBJECTIVE: Our purpose is to systematically assess the quality and readability of articles resulting from frequently Google-searched COVID-19 terms in the United States. METHODS: We used Google Trends to determine the 25 most commonly searched health-related phrases between February 29 and April 30, 2020. The first 30 search results for each term were collected, and articles were analyzed using the Quality Evaluation Scoring Tool (QUEST). Three raters scored each article in authorship, attribution, conflict of interest, currency, complementarity, and tone. A readability analysis was conducted. RESULTS: Exactly 709 articles were screened, and 195 fulfilled inclusion criteria. The mean article score was 18.4 (SD 2.6) of 28, with 7% (14/189) scoring in the top quartile. National news outlets published the largest share (70/189, 36%) of articles. Peer-reviewed journals attained the highest average QUEST score compared to national/regional news outlets, national/state government sites, and global health organizations (all P<.05). The average reading level was 11.7 (SD 1.9, range 5.4-16.9). Only 3 (1.6%) articles were written at the recommended sixth grade level. CONCLUSIONS: COVID-19-related articles are vastly varied in their attributes and levels of bias, and would benefit from revisions for increased readability.

What's in Between the Lines: Assessing the Readability, Understandability, and Actionability in Breast Cancer Survivorship Print Materials.

Educational print materials for young women breast cancer survivors (YBCS) are supplemental tools used in patient teaching. However, the readability of the text coupled with how well YBCS understand or act upon the material are rarely explored. The purpose of this study was to assess the readability, understandability, and actionability of commonly distributed breast cancer survivorship print materials. We used an environmental scan approach to obtain a sample of breast cancer survivorship print materials available in outpatient oncology clinics in the central region of a largely rural Southern state. The readability analyses were completed using the Flesch-Kincaid (F-K), Fry Graph Readability Formula (Fry), and Simple Measure of Gobbledygook (SMOG). Understandability and actionability were analyzed using Patient Education Materials Assessment Tool for Printable Materials (PEMAT-P). The environmental scan resulted in a final sample of 14 materials. The mean readability of the majority of survivorship materials was "difficult," but the majority scored above the recommended 70% in both understandability and actionability. The importance of understandability and actionability may outweigh readability results in cancer education survivorship material. While reading grade level cannot be dismissed all together, we surmise that patient behavior may hinge more on other factors such as understandability and actionability. Personalized teaching accompanying print material may help YBCS comprehend key messages and promote acting upon specific tasks.

The Experience of Chemotherapy Teaching and Readability of Chemotherapy Educational Materials for Women with Breast Cancer.

Chemotherapy is one of the most common forms of treatment for women with breast cancer. While chemotherapy is often effective, managing side effects can be challenging. Chemotherapy education is critical in assisting patients to manage side effects and to improve the treatment experience. However, materials are often not thoroughly assessed for readability and format which could be problematic for patients learning self-care while in treatment. We used a mixed-method design to illuminate chemotherapy teaching and focused on readability and format of education materials. We scored the materials using three readability assessments: (1) Flesch Reading Ease (FRE), (2) Flesch-Kincaid (F-K), and (3) a Simple Measure of Gobbledygook (SMOG). We evaluated the format of the materials using Suitability Assessment of Materials (SAM) guidelines. Lastly, we used thematic analysis to describe the experience of 37 women with breast cancer undergoing chemotherapy education. The mean readability of the materials ranged from "difficult" to "fairly difficult" based on the FRE scoring, and the material was written on a 9th- to 13th-grade reading level. Most of the materials scored as "adequate" using SAM guidelines but lacked incorporation of graphics or illustrations. The thematic analysis revealed three major findings: (1) finding control in learning, (2) receiving unexpected support, and (3) learning in unforeseen ways. Nurses need to supplement chemotherapy education materials with individualized teaching to ensure comprehension. Additionally, nurses and website developers may want to consider implementing culturally appropriate information and use videos to combat challenging readability.

Factors influencing chemotherapy knowledge in women with breast cancer.

BACKGROUND: Chemotherapy knowledge is linked to managing side effects, reducing exposure to potential infection, and adjusting lifestyle behaviors while going through treatment. However, no research exists regarding the influence of patients' personal attributes on chemotherapy knowledge. Aim The aim of this study was to describe the relationships of health literacy and demographics on chemotherapy knowledge among women with breast cancer undergoing treatment. METHOD: We used a descriptive, exploratory design with convenience sampling of women with breast cancer receiving intravenous chemotherapy who completed one mandatory education session. Participants completed a demographic questionnaire and three instruments: 1) Rapid Estimate of Adult Literacy - Short Form (REALM-SF); 2) Shortened Test of Functional Health Literacy in Adults (S-TOFHLA); and 3) Leuven Questionnaire on Patient Knowledge of Chemotherapy (L-PaKC). We used univariate linear regression and ANOVA to identify how health literacy and demographics influenced chemotherapy knowledge. RESULTS: The REALM-SF (p = .022) and S-TOFHLA (p = .023) scores were significantly associated with chemotherapy knowledge. Chemotherapy knowledge scores were affected by marital status (p = .018) and income (p < .001) where married women had significantly higher chemotherapy knowledge scores (M = 92.6, SD = 6.6) than women who were divorced (M = 83.3, SD = 16.7) with a knowledge score difference of -9.3 between the groups (p = .02). Comparisons showed significant differences of chemotherapy knowledge between women with differing income levels. CONCLUSIONS: This study highlights the relevance of considering patients' health literacy and personal attributes such as marital status and income when teaching about chemotherapy.

A Smartphone App for Self-Management of Heart Failure in Older African Americans: Feasibility and Usability Study.

BACKGROUND: Mobile health (mHealth) apps are dramatically changing how patients and providers manage and monitor chronic health conditions, especially in the area of self-monitoring. African Americans have higher mortality rates from heart failure than other racial groups in the United States. Therefore, self-management of heart failure may improve health outcomes for African American patients. OBJECTIVE: The aim of the present study was to determine the feasibility of using an mHealth app, and explore the outcomes of quality of life, including self-care maintenance, management, and confidence, among African American patients managing their condition after discharge with a diagnosis of heart failure. METHODS: Prior to development of the app, we conducted qualitative interviews with 7 African American patients diagnosed with heart failure, 3 African American patients diagnosed with cardiovascular disease, and 6 health care providers (cardiologists, nurse practitioners, and a geriatrician) who worked with heart failure patients. In addition, we asked 6 hospital chaplains to provide positive spiritual messages for the patients, since spirituality is an important coping method for many African Americans. These formative data were then used for creating a prototype of the app, named Healthy Heart. Specifically, the Healthy Heart app incorporated the following evidence-based features to promote self-management: one-way messages, journaling (ie, weight and symptoms), graphical display of data, and customized feedback (ie, clinical decision support) based on daily or weekly weight. The educational messages about heart failure self-management were derived from the teaching materials provided to the patients diagnosed with heart failure, and included information on diet, sleep, stress, and medication adherence. The information was condensed and simplified to be appropriate for text messages and to meet health literacy standards. Other messages were derived from interviews conducted during the formative stage of app development, including interviews with African American chaplains. Usability testing was conducted over a series of meetings between nurses, social workers, and computer engineers. A pilot one-group pretest-posttest design was employed with participants using the mHealth app for 4 weeks. Descriptive statistics were computed for each of the demographic variables, overall and subscales for Health Related Quality of Life Scale 14 (HQOL14) and subscales for the Self-Care of Heart Failure Index (SCHFI) Version 6 using frequencies for categorical measures and means with standard deviations for continuous measures. Baseline and postintervention comparisons were computed using the Fisher exact test for overall health and paired t tests for HQOL14 and SCHFI questionnaire subscales. RESULTS: A total of 12 African American participants (7 men, 5 women; aged 51-69 years) diagnosed with heart failure were recruited for the study. There was no significant increase in quality of life (P=.15), but clinically relevant changes in self-care maintenance, management, and confidence were observed. CONCLUSIONS: An mHealth app to assist with the self-management of heart failure is feasible in patients with low literacy, low health literacy, and limited smartphone experience. Based on the clinically relevant changes observed in this feasibility study of the Healthy Heart app, further research should explore effectiveness in this vulnerable population.

Learning never stops: Evaluation of peer teachers in high fidelity simulation.

BACKGROUND: Nurse educators have used peer teaching as a means of providing effective learning to peer learners and enhancing peer teachers' comfort with teaching. There is a lack of evidence related to providing feedback to peer teachers. Receiving feedback may enhance peer teachers' knowledge synthesis and understanding of the teaching process. METHODS: We utilized a mixed methods approach to determine if an evaluation instrument was valid and helpful to peer teachers. Both peer learners and educators completed evaluations of peer teachers, which were then compared. After receiving summarized feedback, peer teachers completed a survey regarding their experience. RESULTS: There were no statistical differences between peer learner and educator ratings of peer teachers. Peer learners indicated they found peer teachers to be helpful in the high fidelity simulation setting. Peer teachers indicated satisfaction with the experience. Analysis of qualitative comments on peer-teacher surveys resulted in the identification of three themes: (a) validation of knowledge growth; (b) increased comfort with teaching; and (c) enhanced appreciation of teaching. CONCLUSIONS: Peer teaching may enhance knowledge gain and synthesis for both peer teachers and peer learners. Enhanced comfort with teaching may lead to enhanced comfort in teaching both patients and peers in future practice.

Expectations and reality: perceptions of support among African American breast cancer survivors.

Objective: The experience of an illness such as breast cancer is not a static event. Just as physiological needs change as a patient transitions through diagnosis, treatment, to long-term survivorship, so too will their needs for social support. We applied a transitions theory framework to explore how African American women with breast cancer conceptualized and experienced support along their breast cancer journey. Design: We recruited 16 African American women with breast cancer from a regional cancer center in South Carolina to complete qualitative, semi-structured interviews. We iteratively examined verbatim transcripts using thematic analysis. Results: Three core themes emerged: 'I guess she was supposed to': When support meets patient expectations; 'I wasn't expecting that and that just made me feel so good': When reality exceeds expectations; and 'Don't try to make an invalid out of me': When support given wasn't what was desired. Survivors shared how their family, friends and clergy met their needs for emotional (e.g. prayer, sharing affirmations about God) and instrumental support (e.g. cooking meals, house cleaning). They emphasized how receiving emotional support from their healthcare providers was a pleasant surprise. However, survivors also described unexpected disappointments when family members offered support that was un-needed or un-desired. Conclusions: Applying transitions theory, we found that social support is a process of bidirectional negotiation where African American women with breast cancer perceive support as helpful and acceptable depending on who offers support, what type of support is offered, and when it is offered. Members of their social support network (e.g. family, friends, providers) should periodically assess the survivor's evolving needs to ensure the social support harmonizes with the needs and expectations of the survivor.

A systematic review of interventions to improve adherence to endocrine therapy.

PURPOSE: Adherence to endocrine therapy for hormone positive breast cancer is a significant problem, especially in minority populations. Further, endocrine therapy reduces recurrence and thus mortality. However, little data are available on interventions to improve adherence. The authors conducted a systematic review to examine the impact of interventions, strategies, or approaches aimed to improve endocrine therapy adherence among women with breast cancer. A secondary aim was to determine if interventions had any cultural modifications. METHODS: Two of the authors examined articles published between 2006 and 2017 from a wide variety of databases using Covidence systematic review platform. RESULTS: In total, 16 eligible studies met criteria for review including 4 randomized controlled trials, 4 retrospective studies, and 8 with various observational designs. Eligible studies used a broad range of definitions for adherence and measured adherence by self-report, medical records, claims data, and combinations of these. All used 80% medication possession ratio as a standard for adherence. Patient information/education was the most frequent intervention strategy but did not demonstrate a significant effect except in one study. Significant results were noted when education was combined with communication strategies. CONCLUSIONS: Researchers need a standard definition for adherence and a reliable measure that is feasible to use in a variety of studies. While education may be a necessary component of an intervention, when used alone, it is not a sufficient approach to change behavior.

How are health literacy principles incorporated into breast cancer chemotherapy education? A review of the literature.

BACKGROUND: Chemotherapy is commonly used in combination with other treatments for breast cancer. However, low adherence to chemotherapy is a growing concern, particularly among breast cancer patients. Side effects such as nausea and vomiting, fatigue, and arthralgia can contribute to reduced adherence. Other factors such as provider communication and limited insurance coverage can affect adherence. Studies have shown that as much as 28% of patients with breast cancer did not continue with their prescribed dose of chemotherapy. Research suggests that chemotherapy education materials can be critical to addressing problems with non-adherence, and may include written materials, verbal instruction, and multimedia programs. Despite this wide variety, the effectiveness and benefit of chemotherapy education hinges on the patients' health literacy. Breast cancer patients with low health literacy may be unclear about chemotherapy or face difficulty adhering to treatment if they do not understand the information provided to them. Thus, this scoping review summarizes the existing research on how health literacy principles are incorporated into breast cancer chemotherapy education materials. METHODS: Using a combination of keywords (e.g. chemotherapy, education) and Medical subject headings (MeSH) terms (e.g., drug therapy, antineoplastic agents), we searched five databases (1977-2017): CINAHL, PubMed, PsycINFO, Cochrane Library, and Web of Science. RESULTS: Eight of 4,624 articles met the inclusion criteria. Five articles incorporated health literacy principles (e.g., plain language, maintaining an active voice, using white space) into the development of written materials. Few articles used a theoretical framework to guide education material development (n = 3). Of the three articles that described pilot-testing of educational materials, two used post-tests only and one used a pre/post-test design. CONCLUSIONS: Findings indicated that limited research exists regarding the use of health literacy principles in chemotherapy education materials. Much of the development of chemotherapy education is not grounded in theory and the application of health literacy principles is limited. Implementing health literacy principles may improve overall comprehension of education thereby increasing adherence.