Cancer Survivor Stories Research Articles

Development of a communication platform for patients with head and neck cancer for effective information delivery and improvement of doctor–patient relationship: application of treatment journey-based service blueprint

BackgroundEffective communication and information delivery enhance doctor–patient relationships, improves adherence to treatment, reduces work burden, and supports decision-making. The study developed a head and neck cancer (HNC) communication platform to support effective delivery of information about HNC treatment and improve the doctor-patient relationship.MethodsThis study was structured in three main phases: 1) The requirement elicitation phase sought an understanding of the HNC treatment journey and service failure points (FPs) obtained through patient/medical staff interviews and observations, along with a review of the electronic health record system; 2) The development phase involved core needs analysis, solutions development through a co-creation workshop, and validation of the solutions through focus groups; and 3) the proposed HNC communication platform was integrated with the current treatment system, and the flow and mechanism of the interacting services were structured using a service blueprint (SB).ResultsTwenty-two service FPs identified through interviews and observations were consolidated into four core needs, and solutions were proposed to address each need: an HNC treatment journey map, cancer survivor stories, operation consent redesign with surgical illustrations, and a non-verbal communication toolkit. The communication platform was designed through the SB in terms of the stage at which the solution was applied and the actions and interactions of the service providers.ConclusionsThe developed platform has practical significance, reflecting a tangible service improvement for both patients and medical staff, making it applicable in hospital settings.

Randomized controlled trial of a breast cancer Survivor Stories intervention for African American women.

Video-based interventions hold promise for improving quality of life (QoL) among African American breast cancer patients. An interactive, cancer-communication intervention using African American breast cancer survivors' narratives was tested in a randomized controlled trial to determine whether viewing survivor stories improved newly diagnosed African American breast cancer patients' QoL. Participants were 228 African American women with non-metastatic breast cancer interviewed five times over two years; 120 controls received standard medical care, and 108 intervention-arm participants also received a tablet-computer with survivor stories three times in 12 months. Growth curve models were used to analyze differences between arms in change in eight RAND 36-Item Health Survey subscales, depressive symptoms, and concerns about recurrence. Additional models explored the effects of intervention usage and other intervention-related variables on QoL among patients in the intervention arm. Models showed no effect of study arm on QoL, depressive symptoms, or concerns about recurrence. Longer use of the intervention was associated with an increase in concerns about recurrence and decline in three QoL subscales: emotional wellbeing, energy/fatigue, and role limitations due to physical health. Although no significant impact of the intervention on QoL was observed when comparing the two study arms, in the intervention arm longer intervention use was associated with declines in three QoL subscales and increased concerns about recurrence. Women with improving QoL may have interacted with the tablet less because they felt less in need of information; it is also possible that encouraging patients to compare themselves to survivors who had already recovered from breast cancer led some patients to report lower QoL. Future work is warranted to examine whether adding different stories to this cancer-communication intervention or using stories in conjunction with additional health promotion strategies (e.g., patient navigation) might improve QoL for African American breast cancer patients.

Feasibility and Acceptability of an Interactive Cancer-Communication Video Program Using African American Breast Cancer Survivor Stories

To examine the feasibility and acceptability of an interactive video program of African American breast cancer survivor stories, we explored story reactions among African American women with newly diagnosed breast cancer and associations between patient factors and intervention use. During a randomized controlled trial, patients in the intervention arm completed a baseline/pre-intervention interview, received the video intervention, and completed a post-intervention 1-month follow-up interview. Additional video exposures and post-exposure interviews occurred at 6- and 12-month follow-ups. Multivariable linear mixed-effects models examined interview and clinical data in association with changes in minutes and actions using the program. After Exposure1, 104 of 108 patients allocated to the intervention reported moderate-to-high levels of positive emotional reactions to stories and identification with storytellers. Exposure1 mean usage was high (139 minutes) but declined over time (p <.0001). Patients receiving surgery plus radiation logged about 50 more minutes and actions over 12-month follow-up than patients receiving surgery only (p <.05); patients reporting greater trust in storytellers logged 18.6 fewer actions over time (p =.04). Patients’ topical interests evolved, with patients watching more follow-up care and survivorship videos at Exposure3. The intervention was feasible and evaluated favorably. New videos might satisfy patients’ changing interests.

Improving Lifestyle Behaviors After Breast Cancer Treatment Among African American Women With and Without Diabetes: Role of Health Care Professionals.

Little is known about the effect of health professionals' advice on promoting healthy lifestyle behaviors (diet and exercise) among breast cancer patients. To identify predictors of receiving lifestyle advice from health professionals and its impact on healthy lifestyle behaviors. We used data from a randomized controlled trial of an interactive, cancer-communication video program using African American breast cancer survivor stories for newly diagnosed African American breast cancer patients (Stages 0-III). Participants completed five interviews over 2 years. This intervention did not significantly affect changes in quality-of-life outcomes. In secondary analysis, we examined differences in baseline variables between women with and without diabetes. Logistic regression models identified independent predictors of receiving advice from "a doctor or other health professional" to improve diet and exercise and of self-reported change in diet and exercise habits at 2 year follow-up. Of 193 patients included (85% of 228 enrolled), 53 (28%) had diabetes. At 2 year follow-up, a greater proportion of women with (vs. without) diabetes reported receiving advice by a doctor/health professional to improve their diet (73% vs. 57%, p = .04,). Predictors of receiving dietary advice were obesity, diabetes, and breast-conserving surgery (each p < .05). Women receiving dietary advice were 2.75 times more likely to report improving their diet (95% confidence interval: 1.17, 6.46) at follow-up, but receiving physical activity advice was not significantly associated with patients reporting an increase in exercise. Although receiving dietary advice predicted dietary improvements, receiving exercise advice did not lead to an increase in physical activity. Trial Number NCT00929084.

Narrating the nadir: examining personal and vicarious stories of cancer-related low points among survivors and romantic partners

Objective: To investigate low point autobiographical narratives among cancer survivors and romantic partners.Design: Cancer survivors (Study 1) and romantic partners (Study 2) narrated the low points of their cancer experiences. Partners also narrated stories of cancer survivors’ low points. Narratives were coded for their manifest content, as well as redemption (negative-to-positive arc), contamination (positive-to-negative arc), and tone (positive or negative valence).Main Outcome Measures: Self-reported measures of health and well-being (life satisfaction, cancer-related worry, impact of cancer).Results: The diagnosis moment was the most frequently recognised low point among survivors and partners. Survivors who narrated contaminated low points reported marginally less somatisation, salience of cancer recurrence, and that cancer had a marginally less positive impact, relative to survivors whose narratives did not contain contamination. Tone in partners’ low points predicted marginally less worry and more somatisation. The tone of their vicarious low points negatively correlated with anxiety.Conclusion: This research contributes to the growing body of work examining, and giving voice to, the experiences of cancer survivors and those close to them. As such, it informs applied health researchers of potentially challenging cancer-related experiences, and the way(s) in which the storying of these experiences align with psychological flourishing.

Improving Breast Cancer Patients Survival and Quality of Life by Targeting Traditional and Religious Leaders in Northern Nigeria

Background and context: Breast cancer is the most common cancer among Nigerian women, mostly aged 35 years and older. The survival rate of breast cancer patient in northern Nigeria is 40% and below as compared with that of developed countries at 95% and above. The rising incidence of breast cancer in northern Nigeria is complicated, mainly due to cultural beliefs for incision by traditional rulers, poverty, illiteracy and fear of high cost of treatment. Aim: Breast cancer is the most common cancer among Nigerian women, mostly aged 35 years and older. The survival rate of breast cancer patient in northern Nigeria is 40% and below as compared with that of developed countries at 95% and above. The rising incidence of breast cancer in northern Nigeria is complicated, mainly due to cultural beliefs for incision by traditional rulers, poverty, illiteracy and fear of high cost of treatment. Strategy/Tactics: We made contact with two tertiary health facilities in Kebbi state to determine the baseline prevalence of stage 3 and 4 breast cancer in the hospitals. Organized cancer sensitization workshops for religious bodies to incorporate breast cancer awareness into sermons and also capacity building for nurses and traditional healers. Engaged the media through delivery of radio and television jingles on dangers of refusing medical care and also telling the stories of cancer survivors to enable the populace to be strong and brave to take charge of their health and quality of life. Program/Policy process: The entire communities were carried along. Tertiary health facilities provided support in giving access to relevant data. Permission from local government chairmen were sorted to interact with members of the communities. The general public were engaged through media. Outcomes: There was 30% increase in percentage of male participation especially spouses in encouraging women to seek appropriate help for breast cancer. Traditional healers and religious leaders had a positive impact in sensitizing women on need to attend hospitals for any breast changes early so as to reduce the incidence of late detected cases. They also alleviated avenues of stigmatization among the populace. Survivors were able to tell their stories via various media channels. What was learned: Majority of the target population lack access to basic health care. They patronize unorthodox medicine rather than clinical medicine. Cancer education and advocacy made a huge difference in health care perspective of this population. There is great need for continued cancer education and awareness to improve patients' survival and quality of life.

Scars of survivorship.

Let me show you my scar,” the twenty-something woman said to her fellow cancer survivor friend, as she pulled the top of her v-neck shirt diagonally to show the scar where her Hickman catheter had been.“This is where I had my PICC line,” the other survivor said, straightening her arm to show the remnant of a former IV site. And their conversation went on. They were engrossed in each other’s cancer survivor stories.

Response to Bell, K., The breast-cancer-ization of cancer survivorship: Implications for experiences of the disease, Social Science & Medicine (2014)

While there are multiple reasons for the prominence of breast cancer survivorship experience including high incidence, high numbers of cancer survivors and success of breast cancer treatments which may give the impression of the superior standing of breast cancer in the “hierarchy of cancer suffering “, the common way the breast cancer is depicted focuses on the positive, sanitised image of cancer survivor that is more acceptable to society and more commonly seen in popular media and occurs at the exclusion of experiences common to many other breast cancer patients. That polarisation within breast cancer is an example of “hierarchy of cancer suffering” in itself that warrants examination. One of the potential reasons for the positive bias and separation in the stories of cancer survivors may be the terminology of survivorship which implies special standing and distinct status that can lead to exclusion and polarisation between, as well as within, cancer types.

Understanding Narrative Effects: The Role of Discrete Negative Emotions on Message Processing and Attitudes Among Low-Income African American Women

This study tests the processes through which breast cancer narrative messages are effective by taking a functional approach. We explore how discrete negative emotions (i.e., sadness, fear, and anger) induced by breast cancer survivor stories affect African American women’s message processing, recall of message content, and attitudinal outcomes. Structural equation modeling was performed for narrative and informational versions of a breast cancer screening video shown to 489 low-income African American women ages 40 years and older. The model was well fitted. Sadness enhanced the persuasive process, while fear inhibited it. Sadness also helped participants recall more message-relevant content, while fear inhibited recall. Anger was not related to the persuasive process. Implications of these findings for narrative research and application are discussed.

A novel intervention using interactive technology and personal narratives to reduce cancer disparities: African American breast cancer survivor stories

There has been a paucity of interventions developed for African American women to address persistent health disparities between African American and Caucasian breast cancer patients. We developed and piloted a technologically innovative, culturally targeted, cancer-communication intervention for African American breast cancer patients using African American breast cancer survivor stories. We rated 917 clips from a video library of survivors' stories for likability, clarity and length, and emotional impact (scaled responses) and categorized each clip by theme (Coping, Support and Relationships, Healthcare Experiences, Follow-up Care, Quality of Life, and Treatment Side Effects). We selected 207 clips told by 35 survivors (32-68 years old; 4-30 years after diagnosis), fitting one of 12 story topics, for inclusion in the interactive video program loaded onto a touch-screen computer. Videos can be searched by storyteller or story topics; stories with the strongest emotional impact were displayed first in the video program. We pilot tested the video program with ten African American breast cancer survivors (mean age, 54; range 39-68 years), who, after training, watched videos and then evaluated the stories and video-program usability. Survivor stories were found to be "interesting and informative," and usability was rated highly. Participants identified with storytellers (e.g., they "think a lot like me," "have values like mine") and agreed that the stories convinced them to receive recommended surveillance mammograms. This novel, cancer-communication technology using survivor stories was very favorably evaluated by breast cancer survivors and is now being tested in a randomized controlled clinical trial. Breast cancer survivors can draw support and information from a variety of sources, including from other breast cancer survivors. We developed the survivor stories video program specifically for African American survivors to help improve their quality of life and adherence to follow-up care. Breast cancer survivors' experiences with treatment and living with cancer make them especially credible messengers of cancer information. Our novel, interactive technology is being tested in a randomized controlled trial and will be more broadly disseminated to reach a wider audience.

Understanding narrative effects: The impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women.

Examine the longitudinal effects of personal narratives about mammography and breast cancer compared with a traditional informational approach. African American women (n = 489) ages 40 and older were recruited from low-income neighborhoods in St. Louis, Missouri, and randomized to watch a narrative video comprised of stories from African American breast cancer survivors or a content-equivalent informational video. Effects were measured immediately postexposure (T2) and at 3- (T3) and 6-month (T4) follow-up. T2 measures of initial reaction included positive and negative affect, trust, identification, and engagement. T3 message-processing variables included arguing against the messages (counterarguing) and talking to family members about the information (cognitive rehearsal). T4 behavioral correlates included perceived breast cancer risk, cancer fear, cancer fatalism, perceived barriers to mammography, and recall of core messages. Structural equation modeling examined interrelations among constructs. Women who watched the narrative video (n = 244) compared to the informational video (n = 245) experienced more positive and negative affect, identified more with the message source, and were more engaged with the video. Narratives, negative affect, identification, and engagement influenced counterarguing, which, in turn, influenced perceived barriers and cancer fatalism. More engaged women talked with family members more, which increased message recall. Narratives also increased risk perceptions and fear via increased negative affect. Narratives produced stronger cognitive and affective responses immediately, which, in turn, influenced message processing and behavioral correlates. Narratives reduced counterarguing and increased cognitive rehearsal, which may increase acceptance and motivation to act on health information in populations most adversely affected by cancer disparities.

Women's cognitive and affective reactions to breast cancer survivor stories: A structural equation analysis

Objective Compare the immediate affective and cognitive reactions to cancer survivor stories about mammography and breast cancer vs. a didactic, informational approach. Methods Participants ( N = 489) were African American women age 40 years and older (mean = 61). Most had ≤high school education (67%), annual household income ≤$20,000 (77%), and a prior mammogram (89%). Participants completed surveys before and after watching the narrative or informational video. We used structural equation modeling to examine the large number of inter-related latent constructs. Results Women who watched the narrative video experienced more positive and negative emotions, found it easier to understand the video, had more positive evaluations of the video, reported stronger identification with the message source (i.e., perceived similarity, trust, liking), and were more engaged with the video. Conclusion Narratives elicited immediate reactions consistent with theorized pathways of how communication affects behavior. Future studies should examine whether and how these immediate outcomes act as mediators of the longer term effects of narratives on affect, cognitions, and behavior. Practice implications Stories of other women's experiences may be more powerful than a didactic presentation when encouraging African American women to get a mammogram.

Disparities by Race and Ethnicity in Cancer Survivor Stories Available on the Web

Background The rapid growth of eHealth could have the unintended effect of deepening health disparities between population subgroups. Most concerns to date have focused on population differences in access to technology, but differences may also exist in the appropriateness of online health content for diverse populations.Objective This paper reports findings from the first descriptive study of online cancer survivor stories by race and ethnicity of the survivor.Methods Using the five highest-rated Internet search engines and a set of search terms that a layperson would use to find cancer survivor stories online, we identified 3738 distinct sites. Of these, 106 met study criteria and contained 7995 total stories, including 1670 with an accompanying photo or video image of the survivor. Characteristics of both websites and survivor stories were coded.Results All racial minority groups combined accounted for 9.8% of online cancer survivor stories, despite making up at least 16.3% of prevalent cancer cases. Also notably underrepresented were stories from people of Hispanic ethnicity (4.1%), men (35.7%), survivors of colon cancer (3.5%), and older adults.Conclusions Because racial/ethnic minority cancer survivors are underrepresented in survivor stories available online, it is unlikely that this eHealth resource in its current form will help eliminate the disproportionate burden of cancer experienced by these groups.

What makes cancer survivor stories work? An empirical study among African American women.

Cancer survivors play a vital role in cancer control as messengers of hope and information, and advocates for prevention and screening. Understanding what makes survivor stories effective can enhance survivor-delivered programs and interventions. By random assignment and using a cross-classified design, 200 African American women viewed videotaped stories (n = 300) from 36 African American breast cancer survivors. Analyses examined effects of story attributes (narrative quality, health message strength), participant characteristics (ways of knowing, experience with breast cancer) and identification with the survivor on women's: (1) level of engagement in the story; (2) positive thoughts about the story; and, (3) remembering key messages about breast cancer and mammography in the story. Participant characteristics were significant predictors of all three study outcomes, accounting for 27.8, 2.6 and 22.2% of their total variance, respectively. In comparison, the variability in these outcomes that could be attributed to differences in the stories was small (0.6, 1.1 and 2%, respectively). The effects of participant characteristics on level of engagement and positive thoughts were mediated by identification with the survivor. The best predictor of a woman becoming engaged in a breast cancer survivor's story and having positive thoughts about the story was whether she liked the survivor and viewed her as similar to herself (i.e., identification). Survivor stories may be most effective when audience members identify with the survivor. Finding key characteristics that can reliably match the two will advance cancer communication science and practice.

Fatal sequence: The killer within

Fatal sequence: The killer within

Stories of breast cancer through art.

To describe the use of an art exhibit, created in response to breast cancer survivor stories, and additional supplementary activities to increase cancer awareness and provide support to those with cancer. Published articles and books, personal experiences. Art has been used to educate and promote the expression of emotions. Using an art exhibit as the central feature, a planning committee composed of staff members and volunteers developed a repertoire of activities to improve cancer awareness and provide support to cancer survivors. Visitor and staff reactions to the event were profound. Art can capture the most intimate and personal aspects of the cancer experience. This event was a novel and effective way to increase awareness about the cancer experience. The event brought together patients, family members, friends, staff members, and the community and facilitated new partnerships to help people with cancer. Nurses are well equipped to direct the therapeutic use of art and support the potential reactions of viewers. Nurses can promote the benefit of art exhibits for cancer education, support, and awareness and use their knowledge and skills in planning and implementing supplementary activities.