Understanding breast cancer survivors’ information-seeking behaviours and overall experiences: a comparison of themes derived from social media posts and focus groups

The Commission on Cancer’s standard 3.3 represents a paradigm shift in the care of cancer survivors, recommending that survivors receive a treatment summary and survivorship care plan (SCPs). A focus on older breast cancer survivors is needed, as they are the majority of the breast cancer population and their experiences and perspectives of SCPs is limited in the literature. This pilot study utilized a mixed methods approach (focus groups and self-report questionnaire data) to gather information on older (≥65 years) breast cancer survivors’ perspectives of their SCPs, cancer survivorship, and communication with their health-care providers. The questionnaire was completed individually by the participants prior to the focus group and contained items on basic demographics and their health status following cancer treatment. The focus groups indicated that only a minority of women actually developed a SCP. Those who developed a SCP in collaboration with their providers valued the personal care and attention received. However, some participants reported poor communication with their providers and within their health-care team, resulting in frustration and confusion. Participants’ suggestions for ideal SCPs included better education and personalization, particularly in appropriate nutrition and exercise, and managing side effects and comorbidities. Lastly, the women believed that additional long-term care resources, such as health coaches, were important in improving their survivorship. These findings provide insight into enhancing the content, communication, and application of SCPs to improve the survivorship experience of older breast cancer survivors.

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P140: Permanent dark ink radiotherapy tattoos and its psychological impact on breast cancer survivors - Novel approach using social media platforms

European Journal of Surgical Oncology ◽

10.1016/j.ejso.2020.03.179 ◽

2020 ◽

Vol 46 (6) ◽

pp. e48

Author(s):

Jajini Varghese ◽

Hyun Jeon ◽

Alex Woollard ◽

Jennifer Hu

Keyword(s):

Breast Cancer ◽

Social Media ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Psychological Impact ◽

Novel Approach ◽

Social Media Platforms

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Assessing Breast Cancer Survivors’ Perceptions of Using Voice-Activated Technology to Address Insomnia: Feasibility Study Featuring Focus Groups and In-Depth Interviews

JMIR Cancer ◽

10.2196/15859 ◽

2020 ◽

Vol 6 (1) ◽

pp. e15859

Author(s):

Hannah Arem ◽

Remle Scott ◽

Daniel Greenberg ◽

Rebecca Kaltman ◽

Daniel Lieberman ◽

...

Keyword(s):

Breast Cancer ◽

Focus Groups ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Lifestyle Modification ◽

Behavioral Therapy ◽

Hot Flashes ◽

Educational Potential ◽

Relaxation Exercises ◽

Depth Interviews

Background Breast cancer survivors (BCSs) are a growing population with a higher prevalence of insomnia than women of the same age without a history of cancer. Cognitive behavioral therapy for insomnia (CBT-I) has been shown to be effective in this population, but it is not widely available to those who need it. Objective This study aimed to better understand BCSs’ experiences with insomnia and to explore the feasibility and acceptability of delivering CBT-I using a virtual assistant (Amazon Alexa). Methods We first conducted a formative phase with 2 focus groups and 3 in-depth interviews to understand BCSs’ perceptions of insomnia as well as their interest in and comfort with using a virtual assistant to learn about CBT-I. We then developed a prototype incorporating participant preferences and CBT-I components and demonstrated it in group and individual settings to BCSs to evaluate acceptability, interest, perceived feasibility, educational potential, and usability of the prototype. We also collected open-ended feedback on the content and used frequencies to describe the quantitative data. Results We recruited 11 BCSs with insomnia in the formative phase and 14 BCSs in the prototype demonstration. In formative work, anxiety, fear, and hot flashes were identified as causes of insomnia. After prototype demonstration, nearly 79% (11/14) of participants reported an interest in and perceived feasibility of using the virtual assistant to record sleep patterns. Approximately two-thirds of the participants thought lifestyle modification (9/14, 64%) and sleep restriction (9/14, 64%) would be feasible and were interested in this feature of the program (10/14, 71% and 9/14, 64%, respectively). Relaxation exercises were rated as interesting and feasible using the virtual assistant by 71% (10/14) of the participants. Usability was rated as better than average, and all women reported that they would recommend the program to friends and family. Conclusions This virtual assistant prototype delivering CBT-I components by using a smart speaker was rated as feasible and acceptable, suggesting that this prototype should be fully developed and tested for efficacy in the BCS population. If efficacy is shown in this population, the prototype should also be adapted for other high-risk populations.

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Feasibility of Synchronous Online Focus Groups of Rural Breast Cancer Survivors on Web-Based Distress Self-Management

10.1188/18.onf.e111-e124 ◽

2018 ◽

Cited By ~ 6

Keyword(s):

Breast Cancer ◽

Focus Groups ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Self Management ◽

Web Based ◽

Online Focus Groups ◽

Synchronous Online

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Communicating Risks of Adjuvant Chemotherapy for Breast Cancer: Getting Beyond the Laundry List

Journal of Oncology Practice ◽

10.1200/jop.18.00162 ◽

2019 ◽

Vol 15 (2) ◽

pp. e98-e109 ◽

Cited By ~ 2

Author(s):

Eden R. Brauer ◽

Elisa F. Long ◽

Joy Melnikow ◽

Peter M. Ravdin ◽

Patricia A. Ganz

Keyword(s):

Breast Cancer ◽

Adjuvant Chemotherapy ◽

Focus Groups ◽

Cancer Survivors ◽

Late Effects ◽

Breast Cancer Survivors ◽

Theoretical Domains Framework ◽

Long Term Effects ◽

Medical Oncologists

PURPOSE: According to the Institute of Medicine, high-quality cancer care should include effective communication between clinicians and patients about the risks and benefits, expected response, and impact on quality of life of a recommended therapy. In the delivery of oncology care, the barriers to and facilitators of communication about potential long-term and late effects, post-treatment expectations, and transition to survivorship care have not been fully defined. PATIENTS AND METHODS: We collected qualitative data through semistructured interviews with medical oncologists and focus groups with breast cancer survivors and applied the Theoretical Domains Framework to systematically analyze and identify the factors that may influence oncologists’ communication with patients with breast cancer about the long-term and late effects of adjuvant therapy. RESULTS: Eight key informant interviews with medical oncologists and two focus groups with breast cancer survivors provided data. Both oncologists and patients perceived information on long-term effects as valuable in terms of improved clinical communication but had concerns about the feasibility of inclusion before treatment. They described the current approaches to communication of therapy risks as a brief laundry list that emphasized acute adverse effects and minimized more long-term issues. We describe the barriers to communication about potential long-term effects from the perspectives of both groups. CONCLUSION: This study provides insight into oncologists’ communication with patients with breast cancer regarding the potential long-term and late effects of adjuvant chemotherapy and about setting realistic expectations for life after treatment. Opportunities to improve oncologists’ communication about the potential toxicities of therapy, particularly regarding long-term and late effects, should be examined further.

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Social media for breast cancer survivors: a literature review

Journal of Cancer Survivorship ◽

10.1007/s11764-017-0620-5 ◽

2017 ◽

Vol 11 (6) ◽

pp. 808-821 ◽

Cited By ~ 25

Author(s):

Angela L. Falisi ◽

Kara P. Wiseman ◽

Anna Gaysynsky ◽

Jennifer K. Scheideler ◽

Daniel A. Ramin ◽

...

Keyword(s):

Breast Cancer ◽

Social Media ◽

Literature Review ◽

Cancer Survivors ◽

Breast Cancer Survivors

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Underserved community-based walking program for breast cancer survivors.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.e288 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. e288-e288

Author(s):

Judy Angela Tjoe ◽

Linda B. Piacentine ◽

Karen M. Robinson ◽

Alexander V. Ng ◽

Leslie J. Waltke ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Focus Groups ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Well Being ◽

Community Based ◽

Convenience Sample ◽

Walking Program

e288 Background: Advancements in early detection and new treatment options have improved outcomes for breast cancer survivors (BCS). With increased survivorship, improving quality of life (QOL) may be a challenge for some women. Exercise improves QOL for BCS and decreases recurrence, but, despite this many women do not routinely exercise. Underserved areas are at particular risk. Few studies have examined factors influencing exercise initiation and maintenance in underserved areas among minority overweight women. The purpose of this mixed methods study was to examine physiological outcomes and motivational factors in a community-based goal oriented walking program for BCS. Methods: A convenience sample of female BCS was recruited from an inner-city community center 12-week walking program. Women participated in physiological testing and focus groups before and after the program. Data was collected regarding strength, fitness, quality of life, and motivation of the women. Quantitative data was analyzed with paired t-tests. Two researchers independently analyzed focus groups’ transcriptions and like statements and phrases were coded. Themes emerged after discussions between the researchers. Results: The 13 participants [overweight BMI (n = 2), and obese BMI (n = 11)] had a mean survivorship of 5.4 years (range .25-14.5) years. Only 7 participants completed both pre and post physiological testing. Functional endurance significantly improved as indicated by the 6 Minute Walk Test (pre = 503(56), post = 570 (63) meters, mean(sd)), p = 0.02). While overall QOL did not improve, functional well-being showed significant improvement. Two focus group sessions were held at the beginning (n = 13) and end (n = 11) of the program. Themes emerged identifying 1) Treatment Weight Gain, 2) Familial Support, 3) Not Wanting to Go it Alone, 4) The Team Made the Difference Conclusions: Female BCS spoke of interpersonal and environmental factors involved in the decision to engage and maintain exercise with the walking program. Further research is needed to examine exercise motivation in underserved, overweight and obese breast cancer survivors.

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A Partnership in Health-Related Social Media for Young Breast Cancer Survivors

Health Promotion Practice ◽

10.1177/1524839918797620 ◽

2018 ◽

Vol 21 (2) ◽

pp. 219-227

Author(s):

Donna L. Williams ◽

Timiya S. Nolan ◽

Yu-wen Chiu ◽

Laura Ricks ◽

Silvia Gisiger Camata ◽

...

Keyword(s):

Breast Cancer ◽

Social Media ◽

Cancer Survivors ◽

Young Women ◽

Breast Cancer Survivors ◽

The United States ◽

Health Related ◽

Gulf States ◽

Young Breast Cancer

In the United States, about 11% (26,393) of those diagnosed with breast cancer in 2016 will be young or less than 45 years old. Young breast cancer survivors, compared to older cancer survivors, are a disparate group that experience higher incidence of advanced disease, greater mortality, and poorer quality of life, and are often faced with difficulty locating support that meet the unique needs of young women. The Gulf States Young Breast Cancer Survivor Network, composed of three sister networks, formed a partnership aimed at harnessing the power of social media to reach and impact the lives of young women with breast cancer. The collaborative partnership framework and the power of synergy are shown in merging two existing programs and incorporating a third new program.

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