African American Women Breast Cancer Survivors: Coping with the COVID-19 Pandemic.

African American women breast cancer survivors are among those with the greater burden of cancer. Breast cancer is the second leading cause of death among black women, and this death rate is 40% higher than that of white women. The COVID-19 pandemic increased the burden of morbidity and mortality among this population of cancer survivors. In this report, we explore the ways in which the COVID-19 pandemic was a source of stress for African American women breast cancer survivors and their subsequent responses to these stressors. This is a qualitative descriptive study with content analysis of data from the narratives of 18 African American breast cancer survivors. Participants were interviewed via phone and video conferencing platform and asked questions related to their experiences with the COVID-19 pandemic. The findings suggest stressors associated with (1) potential COVID-19 spreaders in their immediate environments; (2) closures and restricted access to social- and faith-based activities; (3) televised news broadcasts of COVID-19; and (4) disruptions to planned cancer prevention and control healthcare. Three categories emerged that captured the ways in which these women responded to stressors during the early phase of this pandemic: (1) seeking control in their social environments; (2) following the rules; and (3) seeking support from God, family, and friends. These findings can be used to better support breast cancer patients during the early phases of a pandemic.

Development and Psychometric Evaluation of Healthcare Access Measures among Women with Ovarian Cancer.

Several proposed theoretical frameworks have defined the complex nature of healthcare access (HCA) [...].

Community collaboration to improve access and outcomes in breast cancer reconstruction: protocol for a mixed-methods qualitative research study.

INTRODUCTION: Breast reconstruction plays an important role for many in restoring form and function of the breast after mastectomy. However, rates of breast reconstruction in the USA vary significantly by race, ethnicity and socioeconomic status. The lower rates of breast reconstruction in non-white women and in women of lower socioeconomic status may reflect a complex interplay between patient and physician factors and access to care. It remains unknown what community-specific barriers may be impacting receipt of breast reconstruction. METHODS AND ANALYSIS: This is a mixed-methods study combining qualitative patient interview data with quantitative practice patterns to develop an actionable plan to address disparities in breast reconstruction in the local community. The primary aims are to (1) capture barriers to breast reconstruction for patients in the local community, (2) quantitatively evaluate practice patterns at the host institution and (3) identify issues and prioritise interventions for change using community-based engagement. ETHICS AND DISSEMINATION: Ethics approval was obtained at the investigators' institution. Results from both the quantitative and qualitative portions of the study will be circulated via peer-review publication. These findings will also serve as pilot data for extramural funding to implement and evaluate these proposed solutions.

Using Spirituality to Cope with COVID-19: the Experiences of African American Breast Cancer Survivors.

African American women with breast cancer generally rely on their spirituality to cope with psychosocial issues encountered during survivorship. However, in order to mitigate the risk of contracting COVID-19, a potentially deadly disease, it is imperative that community-dwelling older adults physically distance themselves from supportive family, friends, and even traditional faith-based activities. In this report, we explore the ways in which spirituality was used to manage stressors during this pandemic. This is a qualitative descriptive study with content analysis of data from the narratives from 18 African American breast cancer survivors. Participants were interviewed via phone and video conferencing platform and asked to respond to questions of strategies used to manage stressors encountered during this COVID-19 pandemic. Spirituality enabled African American breast cancer survivors to better manage their psychological distress through (1) increased engagement in religious activities; (2) reliance on God for protection when fearful, feeling isolated, and in need of assistance to pay household bills; (3) finding joy and courage from listening to gospel music and reading scripture; and (4) finding meaning through spirituality. These findings suggest that in spite of physical distancing requirements that impose limited access to faith-based institutions during this COVID-19 pandemic, spirituality continues to be a supportive resource to manage emotional stressors.

The Durham Initiative for Stomach Health (DISH): a pilot community-based Helicobacter pylori education and screening study.

BACKGROUND: Approximately 15% of all cancers are due to infection. The bacteria Helicobacter pylori is the single leading carcinogenic infectious agent and the main cause of stomach cancer. Prevalence of H. pylori, and, correspondingly, stomach cancer incidence and mortality, is significantly greater among African Americans than whites in the United States. In the present study, we conducted a pilot community-engaged H. pylori education and screening study in partnership with a predominantly African American church in Durham, North Carolina. METHODS: Initially, we consulted with community advisory boards and convened stakeholder meetings with local community members and primary care physicians. We then developed this pilot study through an iterative collaboration with church partners. Our main outcomes were feasibility and acceptability as measured by participation in a one-day H. pylori screening initiative, and participation in follow-up for those who tested positive. We also sought to determine prevalence and determinants of active H. pylori infection in this population. RESULTS: Community engagement informed the event logistics, messaging, educational materials provided, and follow-up plans. A total of 92 individuals participated in the primary study event, 25% of whom had a current H. pylori infection. Of those, 87% returned for the follow-up events, among whom 70% had successfully cleared their infection. CONCLUSIONS: Through community engagement, community-based H. pylori screening and stomach cancer prevention is feasible and acceptable. This is a necessary step in order to move stomach cancer prevention forward to population-based precision H. pylori screening and eradication.

Evolution of a longitudinal, multidisciplinary, and scalable patient navigation matrix model.

This Longitudinal patient navigation Matrix Model was developed to overcome barriers across the cancer care continuum by offering prepatients, patients, and their families with support services. The extraordinary heterogeneity of patient needs during cancer screening, risk assessment, treatment, and survivorship as well as the vast heterogeneity of oncology care settings make it nearly impossible to follow a static navigation model. Our model of patient cancer navigation is unique as it enhances the traditional model by being highly adaptable based on both patient and family needs and scalable based on institutional needs and resources (eg, clinical volumes, financial resources, and community-based resources). This relatively new operational model for system-wide and systematic navigation incorporates a carefully cultivated supportive care program that evolved over the last decade from a bottom up approach that identified patient and family needs and developed appropriate resources. A core component of this model includes shifting away from department-centric operations. This model does not require a patient to opt in or independently be able to report their needs or ask for services-it is an opt out model. The multidisciplinary "cross-training" model can also facilitate reimbursement and sustainability by clarifying the differentiating actions that define navigation services: identification of barriers to quality care and specific actions taken to overcome those barriers, across the full continue of cancer care from community engagement to survivorship or end-of-life care.

Perspectives on Inflammatory Breast Cancer (IBC) Research, Clinical Management and Community Engagement from the Duke IBC Consortium.

Inflammatory breast cancer (IBC) is an understudied and aggressive form of breast cancer with a poor prognosis, accounting for 2-6% of new breast cancer diagnoses but 10% of all breast cancer-related deaths in the United States. Currently there are no therapeutic regimens developed specifically for IBC, and it is critical to recognize that all aspects of treating IBC - including staging, diagnosis, and therapy - are vastly different than other breast cancers. In December 2014, under the umbrella of an interdisciplinary initiative supported by the Duke School of Medicine, researchers, clinicians, research administrators, and patient advocates formed the Duke Consortium for IBC to address the needs of patients in North Carolina (an ethnically and economically diverse state with 100 counties) and across the Southeastern United States. The primary goal of this group is to translate research into action and improve both awareness and patient care through collaborations with local, national and international IBC programs. The consortium held its inaugural meeting on Feb 28, 2018, which also marked Rare Disease Day and convened national research experts, clinicians, patients, advocates, government representatives, foundation leaders, staff, and trainees. The meeting focused on new developments and challenges in the clinical management of IBC, research challenges and opportunities, and an interactive session to garner input from patients, advocates, and community partners that would inform a strategic plan toward continuing improvements in IBC patient care, research, and education.

Making sense of loss through spirituality: Perspectives of African American family members who have experienced the death of a close family member to cancer.

OBJECTIVE: Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient. METHOD: Data in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis. RESULTS: Participants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.Significance of resultsOur findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.

Messages of Hope: Helping Family Members to Overcome Fears and Fatalistic Attitudes Toward Cancer.

This qualitative study explored strategies family members of African-American cancer patients used to overcome their fears and fatalistic attitudes toward cancer. Twenty-four family members were recruited through criterion purposeful sampling. Data were collected and analyzed using open-ended interviews and thematic analysis. Fears and fatalistic attitudes could be traced to personal experiences with cancer and information being communicated within their networks. Strategies used to overcome fears and fatalistic attitudes toward cancer included an awareness of advances in cancer treatments, information obtained from their health-care providers, and faith in God. Family members supported the patient through efforts of encouraging them to talk about what they were going through, to be strong, to maintain a positive environment and normalcy, and to use spirituality as a source of strength. Family members also suggested that health-care providers and researchers tailor intervention studies to consider that the patient is a part of a larger family system and that the entire family needs support to overcome long-held fears and fatalistic attitudes toward cancer. These findings suggest that despite advances in cancer care and widespread media coverage to change perceptions about cancer, fears and fatalistic attitudes toward cancer persist and likely influence the family members' ability to optimally support the cancer patient. At the time of diagnosis, both patient and the entire family unit should be educated of advances in cancer care, that cancer is no longer a death sentence, and supported to overcome fears and fatalistic attitudes.

Using Religious Songs as an Integrative and Complementary Therapy for the Management of Psychological Symptoms Among African American Cancer Survivors.

BACKGROUND: Acupuncture, acupressure, yoga, meditation, cognitive-behavioral techniques, and, to a lesser extent, music are among those integrative and complementary therapies with known beneficial effects on psychological symptoms. However, noticeably absent from this research is the use of religious song as a type of integrative and complementary therapy. OBJECTIVE: The aim of this study was to explore how religious songs were used to alleviate psychological symptoms associated with a cancer diagnosis among a sample of older African American cancer survivors. DESIGN AND METHODS: Thirty-one older African American cancer survivors residing in the Southeastern US participated in a qualitative descriptive study involving criterion sampling, open-ended semistructured interviews, and qualitative content analysis. RESULTS: Participants used religious songs in response to feeling depressed, low, or sad; feeling weak and seeking strength to endure treatment; and feeling worried, anxious, or fearful. Religious songs were also a source of support and hope. Types of religious songs included instructive, thanksgiving and praise, memory of forefathers, communication with God, and life after death. CONCLUSION: Religious songs appear to be an important form of religious expression in this population and used to manage psychological symptoms. IMPLICATIONS FOR PRACTICE: Integrative and complementary oncology therapy has generally focused on yoga, meditation, acupuncture, and cognitive-behavioral techniques. However, religious songs are an important strategy used among older African American cancer patients. Religious songs can be readily integrated into cancer care. The incorporation of religious songs into spiritually based support groups and other integrative and complementary therapies might enhance health outcomes among this medically underserved cancer population.

African-American Cancer Survivors' Use of Religious Beliefs to Positively Influence the Utilization of Cancer Care.

Among African-Americans, religion impacts health-seeking behaviors. This qualitative study used criterion purposeful sampling and thematic analysis in analysis of data from 31 African-American cancer patients to understand the influence of religion on the utilization of cancer care services. Our findings suggest that religious beliefs and practices positively influenced attitudes toward their illness and ability to endure treatment. God's ability to heal and cure, God's control over survival, God's will over their lives, and God's promise for health and prosperity were examples of survivor's religious beliefs. Religious practices such as prayer promoted a trusting relationship with healthcare providers and were a source of strength and encouragement.

Strategies African-American Cancer Survivors Use to Overcome Fears and Fatalistic Attitudes.

This qualitative study explored strategies African-American cancer survivors use to overcome their fears and fatalistic attitudes toward cancer at the point of diagnosis through completion of treatment. Thirty-one African-American cancer survivors who had completed or nearly completed treatment were recruited through criterion purposeful sampling. In-depth, open-ended interviews were used to collect data. The data were analyzed using thematic analysis. Of the 31 survivors interviewed, 26 reported being fearful of cancer and believed that cancer would result in death. These cancer survivors were particularly fearful of having a cancer had spread, of being isolated, and performing less effectively at work. Strategies used to overcome these fears included increasing their own awareness about cancer, using positive self-talk, and avoiding negative people. The findings suggest that past experiences continue to influence fears and fatalistic perspectives about cancer and that educational resources to inform the public about cancer may be ignored until there is a confirmed diagnosis of cancer. Televised news broadcasts of high-profile personalities who had died from cancer were also anxiety provoking, particularly if the cancer survivor died of a recurrence from cancer. Prevalent sources of information and support for these survivors were family members or close friends they trusted with personal information, perceived as strong, or experienced in the care of other cancer survivors.