Cancer Support Organizations Research Articles

Abstract B004: Reaching the Community: Collaborating with Black/African American Metastatic Breast Cancer Patients and Advocates

Abstract Background: In America, Black metastatic breast cancer (MBC) patients are disproportionately underrepresented in clinical research, of which the majority of participants are white - leaving research less representative of Black patients. Interventions: To increase the sustainable participation of Black MBC patients in clinical research, Count Me In (CMI)—a cancer research initiative based at the Broad Institute of MIT and Harvard—partnered with the Tigerlily Foundation (TLF), a patient advocacy organization, to develop an equitable, collaborative approach connecting CMI researchers with Black MBC patients to create culturally relevant educational materials for the Black MBC community. Findings: Participating Black MBC patients developed the following materials: a tri-fold brochure, two types of informational postcards, and a social media digital toolbox. The patients co-developed and approved the materials' content and design elements. Materials were also translated into Spanish. Three iterations were drafted until materials were submitted to CMI’s IRB at Dana-Farber Cancer Institute (DFCI) for approval. The distribution strategy for materials to the larger Black MBC community was designed collaboratively with patients. This included sharing information and resources with their local oncology nurse navigators, placing printed materials in community practices, enclosing materials in folders distributed at initial diagnosis, and further connecting with other community-based breast cancer support groups and organizations. During the pilot distribution period - from August 2023 to February 2024 - CMI sent informational packages with materials to 8 different community contacts across the United States. Participating patients had shared contact information of those in their own social network. By the end of the pilot period, 38 new patients registered in CMI identified as having MBC, with 18% self-identifying as Black/African American and 24% self-identifying as Hispanic/Latino - both of which are overrepresentative when compared to the general population of those who self-identify as Black/African American and Hispanic/Latino. Conclusion: CMI and TLF utilized an equitable approach that included patients at the initial planning of a project to the final production and distribution of the materials. Two recommendations could be provided to researchers and organizations from this successful collaborative partnership and pilot. First, patient advocates desire to be involved in creating and sharing resources with their communities. Organizations can honor their commitment with financial and non-financial opportunities. Second, partnering appropriately with patient advocates will increase clinical study representation. The success of this pilot demonstrates how researchers and patients can collectively close the inequities gap and pave the path forward for more equitable cancer research. Citation Format: Colleen M. Nguyen, Eboney D. Thompson, Juanita Miller, Shanette Caywood, Tiana Russell, Sue Steele, Virginia Leach, Lizzie Wittig, Taisha Hendrickson, Kolbe Phelps, Priyanka Bhakhri. Reaching the Community: Collaborating with Black/African American Metastatic Breast Cancer Patients and Advocates [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B004.

Experiences in Recruitment for Hispanic, Non-Hispanic Black, and Other Non-White Cancer Survivors Through Community Outreach and Other Targeted Approaches

ObjectivesRecruitment of racial/ethnic underserved populations in oncology research is essential to address health disparities. This article presents strategies and lessons learned from community outreach and other approaches for recruiting non-Hispanic Black, Hispanic, and other non-White survivors of cancer into a pilot study that investigated biopsychosocial determinants of health behaviors. MethodsWe critically examined the participant recruitment approaches to explore challenges and successful strategies and develop recommendations for future studies. Direct recruitment strategies included engaging with research staff members’ personal community contacts/liaisons and participating in community outreach events (eg, farmers’ markets, block parties, library events, cancer awareness events). Indirect recruitment strategies included posting and distribution of study flyers in community centers (eg, LIVESTRONG® at the YMCA, churches, libraries), online platforms (eg, FORCE, Survivor Journey website), and invitation letters sent to individuals identified as eligible through a single state cancer registry. ResultsBetween April 2022 and May 2023, among the 64 individuals recruited, 36 were non-Hispanic Black, 25 were Hispanic, and three were American Indian/Alaska Native people. The use of a state cancer registry (64.1%), snowballing/word of mouth (7.8%), and advertisement through an established cancer support organization (ie, FORCE) website (7.8%) were the most effective strategies in this study. ConclusionRecruitment of non-Hispanic Black, Hispanic, and other non-White people into biobehavioral studies through community-engaged research is challenging and requires long-term commitment and engagement with partners from target communities and affiliated organizations. Implication for Nursing PracticeRegistries and community outreach events can build trust for successful enrollment. Using multiple strategies can provide the best opportunities to reach diverse populations and enroll them in cancer-related research studies.

The Impact of Chemotherapy-Related Cognitive Impairment on Social Roles and Well-Being in Breast Cancer Survivors.

To explore the impact of disruptions in information processing (DIPs) on social roles, well-being, and quality of life (QOL) in breast cancer survivors after chemotherapy. Experiences of DIPs were explored in eight breast cancer survivors aged 53-70 years, 12-60 months post-treatment, referred from a National Cancer Institute-designated cancer center and a nonprofit breast cancer support organization from January 6 to August 31, 2020. This study used a mixed-methods approach. Participants journaled and answered questionnaires sent via mail that asked them about changes in their cognition, QOL, and social roles. Qualitative data were thematically analyzed using constant comparative analysis, and questionnaire scores were compared with qualitative data. Journals revealed problems with functioning in occupational roles and increased stress, anxiety, and frustration. Women with more DIPs tended to have lower role satisfaction and QOL. Greater role satisfaction was associated with higher QOL and social role participation. Mitigating the effects of DIPs on social function may allow women to continue in important roles, which has the potential to affect QOL.

African American and Hispanic Cancer Survivors' and Caregivers' Experiences in Nebraska.

Racial and ethnic minority populations experience poorer cancer outcomes compared to non-Hispanic White populations, but qualitative studies have typically focused on single subpopulations. We explored experiences, perceptions, and attitudes toward cancer care services across the care continuum from screening through treatment among African American and Hispanic residents of Nebraska to identify unique needs for education, community outreach, and quality improvement.We conducted four focus groups (N = 19), April-August 2021 with people who were aged 30 or older and who self-identified as African American or Hispanic and as cancer survivors or caregivers. Sessions followed a structured facilitation guide, were audio recorded and transcribed, and were analyzed with a directed content analysis approach.Historical, cultural, and socioeconomic factors often led to delayed cancer care, such as general disuse of healthcare until symptoms were severe due to mistrust and cost of missing work. Obstacles to care included financial barriers, transportation, lack of support groups, and language-appropriate services (for Hispanic groups). Knowledge of cancer and cancer prevention varied widely; we identified a need for better community education about cancer within the urban Hispanic community. Participants had positive experiences and a sense of hope from the cancer care team.African American and Hispanic participants shared many similar perspectives about cancer care. Our results are being used in collaboration with national and regional cancer support organizations to expand their reach in communities of color, but structural and cultural barriers still need to be addressed.

Adolescents and Young Adults with Cancer and the Desire for Parenthood-A Legal View from a Swiss Perspective in Consideration of the Relevance of Cancer Support Organizations.

This commentary focuses on the challenges and possibilities that adolescents and young adults with cancer (AYA) desiring parenthood face under Swiss law. The regulation of reproductive medicine procedures is stricter in Switzerland than in some other countries. Health insurance is compulsory, but the interventions that are covered are in constant flux. Recent changes pertain to the possibilities of future AYA parenthood and keeping up to date with practical and legal ramifications is taxing even for health professionals. AYA facing treatment decisions are uniquely vulnerable and dependent on comprehensive, clear, current, and country-specific information regarding risks and options pertaining to their fertility. This commentary provides a short overview of the Swiss legal framework related to reproductive medicine, highlighting its access restrictions and prohibitions, as well as recent changes. While the importance of patient, peer, caregiver, and interest groups supporting people affected by health conditions has long been recognized in many countries, an AYA organization was only recently established in Switzerland. Such organizations are vital for providing accurate, country-specific information and support, while individualized medical guidance, informed by the most current legal framework and its consequences, remains essential in addressing AYAs' specific needs in connection with the desire to have children.

Breast cancer survivors’ experiences of pet ownership: A qualitative analysis

Abstract Research suggests that the emotional bond shared with a pet can be particularly significant for those with declining physical health, yet little is known about breast cancer survivors’ experiences with pet ownership. The purpose of this study was to explore breast cancer survivors’ pet-related experiences including the benefits, challenges, and unmet needs. Adults (ages 18 and older), diagnosed with stages 0 ( in situ )-IV breast cancer and currently the primary owner of at least one dog or cat for at least 6 months were recruited through cancer treatment and support organizations and pet and breast cancer social media outlets. An online, anonymous, cross-sectional, mixed method survey was developed that included seven open-ended prompts to explore the stressors and benefits breast cancer survivors encountered in caring for a pet during cancer treatment and survivorship, as well as their advice for medical providers and other breast cancer survivors. Breast cancer survivors ( n = 221) responded to the online survey between July and November 2022. Researchers used the thematic analysis method to analyze salient themes in the data and descriptive statistics to summarize participants’ sociodemographic variables. The seven open-ended prompts resulted in four key themes: my furry reason to keep fighting; seeking quality care resources; my pets are my family; and someone special is waiting for you . Findings from this study suggest practical ways that medical and mental health providers and communities can enhance the well-being of survivors and support the invaluable relationships with their pets.

Cancer Peer Support Groups in Australia: A Review of Consumer Resources

Cancer patients and carers have a recognized need for ongoing social support outside the confines of the healthcare setting in which they have received their diagnosis and treatment. Peer support groups have come to be recognized as a crucial part of the cancer support domain. While psychosocial support for patients was always considered an important part of cancer survivorship, the significance of community self-help and peer-to-peer support, rooted in principles of patient empowerment, has gained increased recognition. This article reviews information available online on cancer peer support groups in Australia, focusing on the presentation of the relevant information on the websites of cancer support organizations. It provides a snapshot of cancer peer support group activity in Australia. It aims to serve the information needs of cancer support navigators, coordinators and advocates who may be working in roles that involve sharing information about cancer peer support groups with patients and carers, as well as the information needs of patients and carers themselves. It offers a representative overview of cancer peer support group activity in Australia with the aim of facilitating further exploration of this domain.

Abstract P6-05-59A: Developing a Community Standard of Care for Individuals Diagnosed with Breast Cancer Patients Across Oregon

Abstract Early in the pandemic, cancer centers across the nation and Oregon canceled their cancer support programs as non-essential medical care. Breast cancer patients were forced to look elsewhere for essential assistance and community support to move along their cancer journeys. Pink Lemonade Project (PLP), a Vancouver, WA based community based nonprofit, helped fill the gaps and expanded its local support for breast cancer patients. A virtual format allowed PLP to serve more individuals with our psychological, emotional and financial support programs. Next, PLP convened an informal coalition of all the local breast cancer support organizations including those that offer breast cancer support programs, community including dragon boating and rowing, and others that serve broader communities and more people of color. Then, as Komen National announced its restructuring, and closed the Oregon-Southwest Washington affiliate in Spring 2021, Pink Lemonade Project stepped up again to maintain two locally-grown Komen programs that met critical community need–the MBC Dinner Series and the Treatment Access Program (TAP), a transportation assistance program that served all of Oregon and reduced the geographic barrier to care. Through the coalition, PLP heard patients express concern that they were receiving outdated information and were struggling more to find needed support and resources from their providers. Understandably, nurse navigators and social workers could not maintain and/or update patient resources while they assisted COVID patients. The goal of the coalition was to increase communication across the organizations and to share more event schedules for the ease of patients to understand what support programs are available. This session, delivered by an all breast cancer patient panel, will give an overview of Pink Lemonade Project; its programs that helps with psychological, emotional, community and financial support for breast cancer patients, survivors and those living with metastatic breast cancer; and will highlight the results from the patient point of view of the systematic review of the contents of 6 regional health systems new patient binders and present recommendations for consistent, community-wide content for all future breast cancer patients. The project’s main strength was that Pink Lemonade Project could draw upon on an existing coalition of local, community-based breast cancer organizations to help update and standardize breast cancer support information from the patient point of view. Then by acting as a neutral convener, PLP could request and receive the binders from all the region’s healthcare providers to help standardize and update the community resources across all the region’s cancer centers. The result is that any new breast cancer patient, regardless of where their access to care is, can receive consistent community-based information and resources. Another result of this project showed the importance of the partnership of healthcare and human service agencies, especially in a post-pandemic world. As the pandemic continues to strain healthcare, community-based nonprofits have a unique role to help coordinate community resources and improve the quality of life for those affected by breast cancer. Developing a Community Standard of Care for Individuals Diagnosed with Breast Cancer Across Oregon Developing a Community Standard of Care for Individuals Diagnosed with Breast Cancer Across Oregon Citation Format: Susan Stearns, Thalia Williams, Lisa Peters, Sonja Trytko. Developing a Community Standard of Care for Individuals Diagnosed with Breast Cancer Patients Across Oregon [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-59A.

Motives for Physical Activity in Prostate Cancer Survivors: A Qualitative Exploration

Physical activity (PA) is beneficial for both the physical and psychological health of prostate cancer (PCa) survivors. This study identified and examined motives for PA in a cross-section of PCa survivors, including both men in remission and those receiving treatment in the form of androgen deprivation therapy (ADT). Sixteen PCa survivors from Auckland, New Zealand were individually interviewed. Data were analyzed using an inductive thematic approach. Both groups of men were motivated to engage in PA post-diagnosis to obtain and experience the physical, mental, and cognitive health-related benefits associated with regular PA engagement. Past history of PA was also identified as a motive for current PA for men in remission. These findings provide important insight into how PCa survivors perceive the benefits of PA as a part of their cancer survivorship. Healthcare practitioners, exercise physiologists, and cancer support organizations can use this information to further improve PCa survivors’ quality of life and overall cancer survivorship by better promoting PA to these individuals.

An Investigation of Virtual Reality Nature Experiences in Patients With Metastatic Breast Cancer: Secondary Analysis of a Randomized Controlled Trial.

BackgroundConnection with nature has well-established physical and psychological benefits. However, women with metastatic breast cancer (MBC) are often unable to access nature because of physical limitations, psychological barriers, and treatment demands. Virtual reality (VR) nature experiences offer an alternative means of connecting with nature and may be of particular benefit to patients with cancer who are house- or hospital-bound.ObjectiveThis study aims to explore whether VR nature experiences are associated with physical and psychological benefits for women with MBC who are disconnected with nature.MethodsThis secondary analysis of a previous randomized controlled crossover trial recruited participants from the emailing lists of breast cancer support organizations. Participants were provided VR headsets for daily use in their homes for over 3 weeks. In the first week, participants used 1 of 2 VR nature experiences (Ripple or Happy Place) daily, followed by a 1-week washout period, before using the other VR experience every day for the final week. Outcomes assessed changes between baseline and postintervention scores in quality of life (EQ-5D-5L), pain (Brief Pain Inventory Short Form), fatigue (Functional Assessment of Chronic Illness Therapy-fatigue), depression (Depression, Anxiety, and Stress Scale-depression), anxiety (Depression, Anxiety, and Stress Scale-anxiety), and spiritual well-being (Functional Assessment of Chronic Illness Therapy- Spiritual Well-being) and investigated whether benefits were greater in participants who were not strongly connected with nature at baseline.ResultsA total of 38 women with MBC completed the VR interventions and were included in the analyses. Participants reported significantly less fatigue (P=.001), less depression (P<.001), and greater quality of life (P=.02) following the interventions than at baseline. Women with a weaker connection to nature reported greater fatigue (P=.03), depression (P=.006), and anxiety (P=.001), and poorer spirituality (P=.004) than their strongly connected counterparts. Only those with a weaker baseline connection with nature showed improvements in depression following the intervention (P=.03), with similar trends observed in fatigue (P=.07) and quality of life (P=.10).ConclusionsThis study provides preliminary evidence that feeling connected with nature is associated with better physical and psychological status in patients with MBC and that VR nature interventions might be beneficial for this clinical population. Future studies should focus on activities that encourage connection with nature (rather than simply exposure to nature) and investigate the aspects of VR nature interventions that have the greatest therapeutic potential.Trial RegistrationAustralian New Zealand Clinical Trials Registry ACTRN12619001480178; https://tinyurl.com/et6z3vac

Action for Increasing Diversity, Market Access, and Capacity in Oncology Registration Trials-Is Africa the Answer? Report From a Satellite Session of the Accelerating Anti-Cancer Agent Development and Validation Workshop.

Patients of African ancestry are not well-represented in cancer clinical trials despite bearing a disproportionate share of mortality both in United States and Africa. We describe key stakeholder perspectives and priorities related to bringing early-stage cancer clinical trials to Africa and outline essential action steps. Increasing Diversity, Market Access, and Capacity in Oncology Registration Trials—Is Africa the Answer? satellite session was organized at 2021 Accelerating Anti-Cancer Agent Development and Validation Workshop. Panelists included representatives of African Organization for Research and Training in Cancer, Uganda Cancer Institute, Uganda Women's Cancer Support Organization, BIO Ventures for Global Health, Bill & Melinda Gates Foundation, the US Food and Drug Administration, Nigeria's National Agency for Food and Drug Administration and Control, Bayer, and Genentech, with moderators from ASCO and American Cancer Society. Key discussion themes and resulting action steps were agreed upon by all participants. Panelists agreed that increasing diversity in cancer clinical trials by including African patients is key to ensuring novel drugs are safe and effective across populations. They underscored the importance of equity in clinical trial access for patients in Africa. Panelists discussed their values related to access and barriers to opening clinical trials in Africa and described innovative solutions from their work aimed at overcoming these obstacles. Multisectoral collaboration efforts that allow leveraging of limited resources and result in sustainable capacity building and mutually beneficial long-term partnerships were discussed as key to outlined action steps. The panel discussion resulted in valuable insights about key stakeholder values and priorities related to bringing early-stage clinical trials to Africa, as well as specific actions for each stakeholder group.

Qualitative analysis of cancer care experiences among rural cancer survivors and caregivers.

Rural (vs urban) patients experience poorer cancer outcomes and are less likely to be engaged in cancer prevention, such as screening. As part of a community needs assessment, we explored rural cancer survivors' and caregivers' experiences, perceptions, and attitudes toward cancer care services. We conducted 3 focus groups (N = 20) in Spring 2021 in rural Nebraska. Three patterns of cancer diagnosis were regular care/screening without noticeable symptoms, treatment for symptoms not initially identified as cancer related, and symptom self-identification. Most participants, regardless of how diagnosis was made, had positive experiences with timely referral for testing (imaging and biopsy) and specialist care. Physician interpersonal skills set the tone for patient-provider communication, which colored the perception of overall care. Participants with physicians and care teams that were perceived as "considerate," "compassionate," and "caring" had positive experiences. Participants identified specific obstacles to care, including financial barriers, transportation, and lack of support groups, as well as more general cultural barriers. Survivors and caregivers identified organization-based supports that helped them address such barriers. Rural populations have unique perspectives about cancer care. Our results are being used by the state cancer coalition, state cancer control program, and the National Cancer Institute-designated cancer center to prioritize outreach and interventions aimed to reduce rural cancer disparities, such as revitalizing lay cancer navigator programs, conducting webinars for primary care and cancer specialty providers to discuss these findings and identify potential interventions, and collaborating with national and regional cancer support organizations to expand reach in rural communities.

Abstract P5-15-07: Let's talk about it: Communicating about risk of recurrence in early-stage breast cancer

Abstract Introduction: Risk of recurrence underlies virtually all decision-making in early-stage breast cancer (EBC). Yet, patients and physicians (HCPs) express challenges, limitations, and unmet needs related to HCP-patient communication about recurrence risk. Methods: This qualitative study included: (A) 16 individual interviews with patients diagnosed with EBC in the last 2 years, for their ability to draw on their experience and (B) 2 focus groups with consumers who have never had a cancer diagnosis, for their ability to provide the “cancer-naïve” perspective that may more closely match newly diagnosed patients. Prior to and after the qualitative research, several breast cancer HCP thought leaders were consulted regarding questions and takeaways. Patients were identified via Wellness House, a cancer support organization, whose staff provided counseling support in case the topic was distressing to interviewees. Consumers were identified via a nationwide market research panel. Research took place online in 02/2021. Within the domain of HCP-patient communication about risk of recurrence, questions differed a bit for patients vs consumers but focused on: Experience, Desires, Objectives, and Reactions to methods of explaining risk. Discussion guides, recruiting/screening materials, informed consent documents, and processes were submitted to Advarra IRB and received exempt status. Results: A total of 32 women (16 patients; 16 consumers) participated, with a mix of ages, educational attainment, and racial and ethnic social identities. Information needs were high with objectives centered on being part of treatment decision-making and being motivated to adhere to treatment, screening, and follow-up. Respondents noted that communication about hard topics is central to building a trusting HCP relationship. Many patients felt they had not heard much about their risk, with some admitting they did not want to hear about it. HCPs face a mix of attitudes, but no patients thought they were told too much. Communication timing was a central theme. Many described the information overload that occurs at/near diagnosis and felt they might need a general understanding of recurrence risk at that time, with intentional revisiting of recurrence risk at each decision or transition point (most often connected to changes in modalities or treatments). Within ER+/HER2- disease, patients discussed the transition to oral (endocrine) therapies and specifically noted that time with physicians was limited at that point. In such cases, recurrence risk was insufficiently linked to the recommendation to take a long course of oral therapy that often has significant side effects. Some interviewees were reticent to continue oral therapy, particularly without knowing why it mattered. Communication methods garnered a wide mix of reactions and revealed misinterpretations, underscoring the need to simplify and individually tailor tools. Some group-level tailoring is also possible with degree of risk over time differing by subtype and stage. From a “misunderstanding” standpoint, it seemed time horizons were even less likely to be recalled or understood by patients with ER+/HER2- disease. Respondents focused on wanting information on how they could reduce risk (e.g., diet, exercise, alcohol) and many felt they received inadequate information from HCPs. This led them to search elsewhere for such information. Conclusions: Improving HCP-patient communication about risk of recurrence appears very likely to contribute to shared decision-making and adherence. In particular, the timing of communication may offer a key opportunity to achieve these objectives. In addition, providing tips and tools to oncologists to enhance two-way communication may be helpful, particularly to simplify and tailor by subtype and patient need. Citation Format: Mary L Smith, Elda M Railey, Carol B White. Let's talk about it: Communicating about risk of recurrence in early-stage breast cancer [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P5-15-07.

Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.

Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors' reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors' and relatives' respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.

Tailoring nutrition and cancer education materials for breast cancer patients

ObjectiveMany breast cancer patients are vulnerable to poor nutritional status and may benefit from nutrition education, but existing materials are not generally tailored to the needs of low-literacy immigrant and minority patients. MethodsWith nutritionist guidance, we developed a nutrition presentation for breast cancer patients. English- (n = 29) and Spanish-speaking (n = 19) patients were recruited from 5 safety-net hospitals, an academic cancer center, and a Latina cancer support organization. Materials were tested using multiple rounds of cognitive interviewing (with an adapted USDA interview guide), followed by study team reviews and modifications, until saturation. ResultsSeven rounds of interviews per language were needed. Approximately 25% of interviewees had less than a high school education. Changes included adapting to regional lexicons and resolving vague/confusing phrasing. Specific food examples needed cultural tailoring. Text color coding (red/bad, green/good) was requested. Labeled images enhanced participants’ understanding of concepts. Spanish speakers expressed a desire to understand nutrition labeling, and this was emphasized in the Spanish slides. ConclusionCognitive interviews were an important tool for creating a nutrition curriculum tailored to the needs of low-literacy, mostly immigrant patients. Practice implicationsCultural and linguistic factors should be considered for nutritional education materials in diverse patient populations.

Enhancing equitable access to cancer information for culturally and linguistically diverse (CALD) communities to complement beliefs about cancer prognosis and treatment.

Populations affected by cancer from culturally and linguistically diverse (CALD) backgrounds with low English proficiency have poorer health outcomes than the Australian population. They also have limited access to cancer information and may hold health beliefs that affect health-seeking behaviour. A leading cancer support organisation in Australia conducted research with the largest language groups in Australia with the lowest English proficiency to guide the development of appropriate translated resources. Six focus groups were conducted with Arabic, Chinese (Mandarin and Cantonese) and Vietnamese speaking cancer survivors, carers and those significantly affected by cancer to understand their health beliefs, information needs and preferred modes of access. Thirteen interviews were also conducted with service providers supporting these communities. Communities lacked access to, and knowledge of, cancer information in their language on Australian cancer-related websites. They had easier access to information in their language from overseas health and local ethnic organisations, and from family and friends. Participants trusted health professionals but were dissatisfied with the information and care provided. Cultural beliefs, combined with a lack of information in their language, were not conducive to accessing appropriate information. The impact of beliefs about fate was significant, but they did not rule out using Western treatment or actively seeking cancer information. The results reinforce the need to fully explore the cultural beliefs and the structural barriers to accessing cancer information. They also demonstrate that religious-based fatalistic beliefs need not prevent access to information but can co-exist with Western medical treatments.

“It takes a village to get through cancer,” A photo-elicitation study exploring lived experiences of community cancer survivors

Introduction Cancer survivors continue to experience complications that last months to years following diagnosis and treatment, which can impact daily life. The purpose of this study was to explore the lived experiences of adult community cancer survivors related to daily activities and occupational performance. Method Phenomenology study design and photo-elicitation were utilized to blend photos and words. Thirteen adult survivors were recruited from a community-based cancer support organization. Open coding, axial and in vivo coding, and constant comparative analysis were utilized to analyze data and achieve conceptual saturation. Results Participants experienced a shift in cultural context, wherein they took on a new context defined by their cancer survivorship. This context shift is dynamic and interconnected to the sub-themes of distress, changes in perspectives, and side effects that all ultimately influence occupational performance and engagement. The cultural context shift supported participants’ ability to engage in new, meaningful occupations, supported their new identity, and ultimately created a sense of support and belonging. Conclusion Occupational therapists have a unique position to assist with the adjustment process during this cultural context shift and provide interventions in cancer support communities to assure cancer survivors’ continued performance and engagement in meaningful activities.

Abstract C014: Questions I'd Wished I'd Asked: Cervical Cancer Survivors' Perceptions about Provider Education on Impact of Treatment on Sexual Health

Abstract This poster shares perspectives of cervical cancer (CC) survivors related to the information they received about how their diagnosis and treatment may impact their sexual health. Mick, Hughes, &amp; Cohen’s (2004) BETTER model was modified into an electronic survey format. The study (n = 89) had 15 variables and two open ended questions. Independent variables were: Age (current and at diagnosis); CC stage; Race; Ethnicity; Insurance status at diagnosis; Educational completion; and Urbanicity. Participants also reported independent variables related to provider gender and type. Dependent variables were five modified BETTER model questions and a question regarding the offer of fertility options following treatment. Open ended questions on the social/cultural impact of diagnosis and the opportunity to share any questions they wished they had asked were included adding depth to the closed ended questions. Outcomes revealed three significant findings. 1) Of respondents reporting that their provider did not explain that they could discuss any concerns during their treatment more than half, of respondents, fell at the lower end of the educational level. 2) There was an association between provider gender and offers of information about fertility preservation. 3) Female providers were 31% more likely to offer fertility information. Although not statistically significant, nearly 50% of the CC survivors reported that issues in the sexual domain were not introduced during discussion of treatment options. This study supports use of the BETTER model as a teaching tool in oncology practices facilitating quality patient centered care by reducing gaps in addressing sexual domain issues related to treatment options. Ultimately, participant perspectives’ will be used to modify public domain educational materials used in oncology practices and cancer support organizations to reflect a more patient centered approach to health in the sexual domain. Citation Format: Gail Petersen Hock. Questions I'd Wished I'd Asked: Cervical Cancer Survivors' Perceptions about Provider Education on Impact of Treatment on Sexual Health [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr C014.

Influence of family income and medical insurance coverage on health-related quality of life and optimism in cancer patients at a Hong Kong private hospital: A cross-sectional study.

Health-related quality of life (HRQL) and optimism are important health domains that express the physical, emotional, and psychological well-being of cancer patients. Previous studies have explored income and medical insurance coverage as predictors of their well-being with the aim to better understand their financial needs. The primary objective of this study was to examine the associations in the private health sector in Hong Kong. The study was conducted cross-sectionally with a structured questionnaire in traditional Chinese. HRQL was assessed with the RAND 12-item Health Survey, and optimism was assessed with the Life Orientation Test. The two primary predictors were family income and medical insurance coverage. The associations were tested using logistic regression, controlling for other sociodemographic and clinical covariates. A total of 428 questionnaires were used in the regression model. After adjusting for other covariates, no significant association was observed with family income as the predictor. Medical insurance coverage was a significant and positive predictor of optimism with odds ratio of 2.30 and 95% confidence interval of 1.30 to 4.05 for the group with the most coverage with little to no coverage as the reference group. The significant association between medical insurance coverage and optimism might be an indication that the medical cost was a financial burden to many cancer patients in Hong Kong. In addition to their medical needs, cancer support organization and health care practitioners must be able to recognize and assist with the financial needs of the cancer patients.

Greater support and resources needed for cancer survivors returning to work.

Greater support and resources needed for cancer survivors returning to work.