Lessons Learned from the Young Breast Cancer Survivorship Network.

The Young Breast Cancer Survivors Network (Network) is an academic and community-based partnership dedicated to education, support, and networking. The Network used a multi-pronged approach via monthly support and networking, annual education seminars, website networking, and individual survivor consultation. Formative and summative evaluations were conducted using group survey and individual survivor interviews for monthly gatherings, annual education meetings, and individual consultation. Google Analytics was applied to evaluate website use. The Network began with 4 initial partnerships and grew to 38 in the period from 2011 to 2017. During this 5-year period, 5 annual meetings (598 attendees), 23 support and networking meetings (373), and 115 individual survivor consultations were conducted. The Network website had nearly 12,000 individual users and more than 25,000 page views. Lessons learned include active community engagement, survivor empowerment, capacity building, social media outreach, and network sustainability. The 5-year experiences with the Network demonstrated that a regional program dedicated to the education, support, networking, and needs of young breast cancer survivors and their families can become a vital part of cancer survivorship services in a community. Strong community support, engagement, and encouragement were vital components to sustain the program.

Cognitive Changes: Educating Breast Cancer Survivors With the Think Well: Healthy Living to Improve Cognitive Function Program.

Cognitive changes may occur after cancer treatment and interfere with day-to-day activities of breast cancer survivors. Current guidelines recommend validating cognitive concerns, increasing patient education, and suggesting appropriate interventions. Educational programs, including Think Well: Healthy Living to Improve Cognitive Function, can increase the awareness of cognitive changes and provide strategies for self-management to breast cancer survivors and their family and friends.

Telehealth intervention for Latina breast cancer survivors: A pilot.

AIM: This study was a pilot test of the Latina Breast Cancer Survivorship Intervention, a survivorship self-management intervention delivered via telephone. MATERIALS AND METHODS: This study used a wait-list control design with random assignment to either (1) support and early education or (2) support and delayed education. Latina breast cancer survivors were recruited through the Florida Cancer Data System Registry. Latinas with stage I-III breast cancer who completed primary cancer treatment 3 years prior to study enrollment were eligible. The Latina Breast Cancer Survivorship Intervention consisted of three education sessions delivered weekly via telephone and six telephone support calls, both delivered by a native Spanish speaker. Primary outcome variables included physical well-being, emotional well-being, fatigue, pain, and depressive symptoms. Data collection occurred at baseline, 3 months, and 6 months. RESULTS: In total, 40 Latina breast cancer survivors who were middle-aged to older, married, with health insurance, and Spanish as preferred language enrolled in the Latina Breast Cancer Survivorship Intervention. Data were analyzed using mean change scores. Overall, physical and emotional well-being remained similar over time with well-being scores poorer compared with the general population. Pain levels improved over 6 months and showed a high effect size. Fatigue scores improved at 3 months and showed a moderate effect size. Depressive symptoms remained elevated but were not clinically significant. CONCLUSION: Telephone-based Latina Breast Cancer Survivorship Intervention reached Latina breast cancer survivors for survivorship education and support. Self-management of pain and fatigue showed improvement over time.

An Integrative Review of Psychosocial Concerns Among Young African American Breast Cancer Survivors.

BACKGROUND: African American (AA) women are more likely to be given a diagnosis of breast cancer at an early age, experience morbidity after treatment, and exhibit disparities in survivorship. Although psychosocial well-being is largely studied among breast cancer survivors, data are sparse regarding young AA survivors. OBJECTIVE: This integrative review examined psychosocial concerns in survivorship among young AA survivors using a quality-of-life framework. METHODS: PubMed, CINHAL, EMBASE, PsychINFO, and Scopus were searched for articles exploring psychosocial well-being in young AA survivors. RESULTS: The search yielded 237 articles that were retrieved and reviewed for relevance. Of these, 16 articles were selected based on inclusion/exclusion criteria. Data were evaluated and synthesized based on the quality-of-life model. Selected articles omitted the study of several psychological subconstructs and identified existing psychosocial concerns that require mitigation. CONCLUSIONS: The review revealed key areas of psychosocial concerns among young AA survivors including ongoing anxiety/depression, cognitive changes, and relationships. Identified gaps include paucity of research with young AA survivors and their residual psychosocial concerns. IMPLICATIONS FOR PRACTICE: Review findings indicate a need to increase survivorship research on young AA survivors. Researchers, clinicians, and young AA survivors must partner in efforts to understand psychosocial concerns and translate findings into clinical practice (ie, use of psychosocial distress tools, distress de-escalation protocols, and individualized survivorship care plans) toward reduction of quality-of-life health disparities among young AA survivors.

Engaging an Urban African American Community to Deliver Cognitive Health Education to Breast Cancer Survivors.

Little is known about cognitive changes among African American (AA) breast cancer survivors (BCS). Here, we report our experience with engagement of leaders of urban AA churches in Birmingham, Alabama to deliver and evaluate Think Well: Healthy Living to Improve Cognitive Function, an educational cognitive health program for BCS. The Think Well team engaged leaders of urban AA churches using a 7-step process: 1) identify leaders, 2) develop connection with leaders, 3) assess AA community preferences, 4) tailor for cultural relevance, 5) plan seminars, 6) deliver seminars, and 7) evaluate cultural relevance and overall program quality. Program evaluation was via a 22-item survey and sociodemographic questionnaire. Data from AA participants were analyzed using SPSS. The engagement process resulted in sustained partnerships with three urban AA churches and delivery of three Think Well seminars to 172 participants. Of the 172 participants, 138 (80%) AA participants (40 BCS, 98 co-survivors) returned the program survey. Respondents reported Think Well to be culturally relevant (90%) and of high quality (94%). Think Well was developed and evaluated with the collaboration of urban AA church leaders. Engaging church leaders facilitated reach of AA BCS. Partnership facilitated a culturally relevant, high quality program for AA BCS and co-survivors.

Evaluating Survivorship Experiences and Needs Among Rural African American Breast Cancer Survivors.

Disparities in cancer survivorship exist among specific populations of breast cancer survivors, specifically rural African American breast cancer survivors (AA-BCS). While effective survivorship interventions are available to address and improve quality of life, interventions must be culturally tailored for relevance to survivors. Here, we report the results of our formative research using focus groups and in-depth interview to better understand unique rural AA-BCS survivorship experiences and needs in the Alabama Black Belt. Surveys were used to gather sociodemographic and cancer treatment data. Fifteen rural AA-BCS shared their experiences and concerns about keeping their cancer a secret, lack of knowledge about survivorship, lingering symptoms, religion and spirituality, cancer surveillance, and general lack of survivorship education and support. Rural AA-BCS were unwilling to share their cancer diagnosis, preferring to keep it a secret to protect family and friends. Quality-of-life issues like lymphedema body image and sexuality were not well understood. They viewed spirituality and religion as essential in coping and accepting cancer. Participants also discussed the importance of and barriers to maintaining health through regular check-ups. They needed social support from family and friends and health care providers. Overall, rural AA-BCS expressed their need for knowledge about survivorship self-management by providing a vivid picture of the realities of cancer survival based on shared concerns for survivorship support and education within the context of culture.

Adapting an evidence-based survivorship intervention for Latina breast cancer survivors.

AIM: About 120,000 Latina breast cancer survivors (LBCS) live in the USA with the numbers expected to increase. LBCS experience survivorship disparities and report poor quality of life outcomes. Despite poor outcomes, few survivorship interventions for LBCS are available. Adapting evidence-based interventions for Latinas may be one strategy to reduce disparities. MATERIALS & METHODS: An evidence-based intervention called the Breast Cancer Education Intervention was adapted for Latinas. First, certified translation and cognitive interview to assess cultural relevance were conducted. Next, a pilot sample of 40 Latinas who participated in the intervention were asked to provide follow-up evaluation of their satisfaction with and usefulness of the translated education manual and intervention. RESULTS: Thirty LBCS completed the intervention, and 14 LBCS submitted an evaluation summary expressing satisfaction with usefulness, readability and relevance. CONCLUSION: The process by which translation and cultural adaptation of an evidence-based intervention provides beginning foundation to support and reduce disparities among LBCS.