Keeping us all whole: Acknowledging the agency of African American breast cancer survivors and their systems of social support.

While all cancer patients face a bewildering array of treatments, side effects, and emotions, several researchers have shown that African American women with breast cancer experience greater stress and burdens because of unmet supportive needs associated with psychological distress, financial distress, and lower physical/functional well-being. Social support has been shown to improve health outcomes for African American breast cancer patients. The purpose of this paper is to understand the meaning of social support among African American women diagnosed with breast cancer. A total of 47 African American women with breast cancer participated in the in-depth qualitative interviews. Key findings indicate that social support was received in the context of the stability of the extended family network. Moreover, social support was received in the context of distributing the social support received among many members in their personal networks and that social support was only received on patient's own terms. The findings of this paper provide an understanding to the inter-relational and cultural meanings of receiving support by diverse cancer patients. In addition, the findings of this paper have implications for health care professionals working with African American breast cancer patients in understanding how social support can be received.

Qualitative Exploration of Sexual Health Among Diverse Breast Cancer Survivors.

Although the physical and emotional impact of surgical removal of partial or complete removal of the breast as well as effects of breast cancer treatment on the individual have been well documented, little research is available on sexuality and sexual health of breast cancer survivors in a relationship context. Sexual health concerns of breast cancer survivors remain an unmet need for many. The present study consisted of qualitative interviews with 135 racially diverse, female breast cancer survivors who completed treatment to better understand their perspectives on sexual health and management of sexual problems in their potential and existing relationships after breast cancer. Key thematic findings include that breast cancer survivors have to (1) adapt to the physical and emotional traumas of breast cancer surgery and treatment, (2) navigate complicated sexual communications with potential and existing partners, and (3) negotiate intimacy and closeness without sexual intercourse with existing partners. This study demonstrates the need for healthcare providers to discuss sexual health after breast cancer with all of their patients as it is a concern that faces single and partnered breast cancer survivors months and years after treatment.

Predictors of quality of life among ethnically diverse breast cancer survivors.

PURPOSE: Few studies have examined predictors of quality of life (QOL) of breast cancer survivors over time. METHODS: Breast cancer survivors (n=116) were asked to complete measures of QOL, mood, spirituality, and social support every 6 months from 2-4 years post treatment. RESULTS: Overall QOL at 4 years was predicted by previous physical and functional well-being, the breast cancer-specific items, and vigor and current levels of social support (Adj R2=.72, F=30.53, p<.001). Physical QOL was predicted by previous levels of physical and functional well- being and current levels of functional and social/family well-being (Adj R2=.84, F=44.30, p<.001). Functional well- being was predicted by prior levels of physical, functional, and social/family well-being and current levels of physical well-being and vigor (Adj R2=.72, F=3-.53, p<.001). Emotional well-being was predicted by previous levels of emotional well-being and current physical well-being, the breast cancer-specific items, and anxiety (Adj R2=.60, F=26.30, p<.001). Social/family well-being was predicted by previous levels of social/family well-being, social support, and confusion (Adj R2=.71, F=34.18, p<<000). The breast cancer-specific items were predicted by age, previous levels of the breast cancer-specific items, confusion and current levels of emotional and functional well-being and spirituality (Adj R2=.58, F=17.57, p<.001). CONCLUSIONS: Over all and specific dimensions of QOL at 4 years were predicted by different combinations of QOL, mood, and spirituality. Interventions should be tailored to which dimensions of QOL are affected and other types of QOL as well as social support, mood, and spirituality as coping mechanisms that influence the specific dimension of QOL affected.

Exploring Coping Strategies Among Young Asian American Women Breast Cancer Survivors.

In recent years, breast cancer rates among young Asian American women have been increasing. Despite increases in breast cancer among young Asian American women, little is known about how this population copes throughout diagnosis, treatment, and survivorship. This study was a qualitative exploration of how young Asian American women cope with breast cancer diagnosis, treatment, and survivorship. In-depth interviews with 22 young (under the age of 50) Asian American women diagnosed with early stage breast cancer were conducted. Through qualitative data analysis, three major themes emerged including moving from managing the emotions of others to expressing emotional vulnerability, moving from work and productivity to work-life balance, and moving beyond the family and reaching out to breast cancer survivors. At diagnosis, participants worked to maintain normalcy including caring for others and working during treatment. Once treatment was over, women worked to find ways to use their experience as a transformative one and also to develop more positive coping skills including expressing emotional vulnerability and reaching out to others. Further studies are needed to create and test culturally tailored supportive interventions that enhance positive coping tools among young Asian American women diagnosed by breast cancer.

Development and Initial Validation of a Spiritual Support Subscale for the MOS Social Support Survey.

While spirituality and religious practices are important in coping with illness or other crises, there are few ways of assessing support that people receive from members of their spiritual communities. The goal of this study was to validate a new spiritual support subscale for the Medical Outcomes Study Social Support Scale (MOS-SSS). Questions for the subscale were formed based on responses of 135 breast cancer survivors who were interviewed about their cancer experience. Exploratory factor analysis resulted in four specific factors for the MOS-SSS: emotional/informational, tangible, affectionate, and spiritual support. The new spiritual support subscale has adequate reliability and validity and may be useful in assessing an area of support that is not always addressed.

Breast cancer and coping among women of color: a systematic review of the literature.

Breast cancer is the most commonly diagnosed form of cancer for women regardless of race/ethnicity. Women of color are diagnosed at later stages and experience greater mortality than their White counterparts. However, there has been comparatively little research on coping with breast among racial/ethnic minorities at time of diagnosis, during treatment, or in the course of survivorship. This is despite the fact that research has repeatedly shown that distress can impact disease progression and survival. The questions asked of this systematic literature review include: (1) What is known about coping with breast cancer among major racial/ethnic groups? (2) What are the strengths and gaps in research to date? Over 120 peer-reviewed published studies (1980-2012) were reviewed. A total of 33 met criteria for inclusion including 15 quantitative, 17 qualitative, and 1 mixed methods study. The majority of studies were small sample cross-sectional studies. Only five studies were longitudinal, and two randomized-controlled intervention trials sought to improve coping among survivors. The most common topic in both quantitative and qualitative studies was spirituality and coping among African American breast cancer patients. Thirteen studies included Latinas only or in combination with other groups. Only one quantitative and one qualitative study solely addressed the Asian American population exploring coping and adjustment. In the course of this systematic literature review, we elucidate what is known about coping with breast cancer among racial/ethnic minority women and identify priorities for future research.

"Leaving it to God" religion and spirituality among Filipina immigrant breast cancer survivors.

Many Filipinos have a powerful adherence to Catholicism. However, little is known about spirituality and religious involvement of Filipina Americans who have been diagnosed with breast cancer. Ten (n = 10) in-depth qualitative interviews with Filipina immigrant breast cancer survivors identified prayer to be the most common religious practice, followed by prayers by others and spiritual support from the Catholic Church. These findings can help clinicians and researchers understand the role of spirituality and religion in providing comfort and support for Filipina immigrant breast cancer patient as they face the stress of diagnosis and treatment.

"Trust in the Lord": religious and spiritual practices of African American breast cancer survivors.

Few studies have examined the role of religion and spirituality among African American breast cancer patients. This study explored how African American women cope with breast cancer through religious and spiritual practices. Forty-seven African American women who had completed treatment for breast cancer participated in in-depth interviews about their experiences. The majority of the women mentioned using both individual and communal religious and spiritual practices to cope with their breast cancer diagnosis and treatment. The main themes that emerged in terms of the types of religious and spiritual practices included: (1) attendance at religious services, (2) comfort through prayers of others, and (3) encouragement through reading Biblical scriptures. These practices helped women "trust in the Lord" throughout the many challenges of cancer from diagnosis through survivorship. Although this study is exploratory, the findings illustrate how African American women with breast cancer use religious and spiritual practices to cope with their diagnosis and treatment. For clinicians, the findings provides an understanding of spiritual and religious needs in diverse populations and the importance of referring patients onto spiritual and religious resources and support.

Close relatives find meaning to cope with cancer diagnosis and treatment of family members.

Pediatric palliative care has recently become a priority in the health care field and is implemented at the time of diagnosis rather than days or weeks before the child's death. Social constructivism theory in which humans generate meaning from their experiences was utilized as a general framework to determine the impact of pediatric palliative care on close relatives. The purpose of this grounded theory study was to generate a substantive theory that explains how close relatives such as grandparents, aunts, and uncles of a child with cancer experience palliative care. The participants of the study included close relatives of children in palliative care. Semistructured interviews and journaling were used to collect data. Initial, focused, and axial coding procedures were used to manage the data and a content analysis of the textual data was performed. Findings from the data suggested a process of finding meaning which helps close relatives to let go of what they cannot control while holding on to what they can control. Social change implications of this study may include improving health care programming for close relatives utilizing supportive-expressive measures. This programming may promote mental health of the close relatives who will learn to deal with their adjustment difficulties and improve their coping skills.

Older women, breast cancer, and social support.

INTRODUCTION: One in ten women over the age of 65 will develop breast cancer. Despite this high incidence of breast cancer among older women, social support for them is often inadequate. This paper describes a qualitative study of the impact of a breast cancer diagnosis on older women from racially/ethnically diverse populations and their subsequent need for social support. METHODS: Forty-seven older African American, Asian American, Caucasian and Latina women between the ages of 65 to 83 participated in a larger study examining the impact of breast cancer on women from racially/ethnically diverse populations and the meaning and nature of social support. The women completed an in-depth qualitative interview on the psychosocial impact of breast cancer and the meaning and nature of social support. RESULTS AND CONCLUSION: The results indicate that there are variations in reactions to a breast cancer diagnosis among older women, and that these reactions impact their experiences with seeking social support at diagnosis and during treatment. Respondents were concerned about their aging bodies, potential dependency on others, and loss of autonomy. At the same time, the severity of cancer treatment and existing co-morbidities often meant they needed to learn to receive support, and to reach out if they had no support. The implications of these findings underscore the older cancer patient's need to strengthen her supportive networks at the time of diagnosis, during treatment, and post-treatment.

Emotion work: disclosing cancer.

INTRODUCTION: Breast cancer remains one of the leading causes of morbidity and mortality for all women in the US. Current research has focused on the psychological relationship and not the sociological relationship between emotions and the experience of breast cancer survivors. This paper focuses on the emotion work involved in self-disclosing a breast cancer diagnosis in a racially or ethnically diverse population. METHODS: The participants (n = 176) selected for this study were African American, Asian American, Latina, and Caucasian women who had been diagnosed with stages 0, I, or II breast cancer within the past 4 years. They completed an in-depth qualitative interview on self-disclosure and social support. FINDINGS: The results indicate self-disclosing was done at a time when important decisions about treatment needed to be made. Different strategies for disclosure were used, all of which entailed emotion work. Respondents talked about the various elements of emotion work in the disclosure process including: managing others' worry, protecting and soothing others, and educating and instructing others. For many respondents, disclosure without calculating emotional management meant opening up to others which meant support and an increase in emotional resources. CONCLUSIONS: The findings in this paper have implications for women with breast cancer and demonstrate the need for women to be involved in honest disclosure and less emotional management of others' feelings. There is also a need for education about the nature of the cancer experience among people who are not well educated about the treatment and consequences of cancer. This need may be even stronger among racial and ethnic minorities.

Web-based hazard and near-miss reporting as part of a patient safety curriculum.

As part of a patient safety curriculum, we developed a Web-based hazard and near-miss reporting system for postbaccalaureate nursing students to use during their clinical experiences in the first year of their combined BS-MS advanced practice nurse program. The 25-week clinical rotations included 2 days per week for 5 weeks each in community, medical-surgical, obstetrics, pediatrics, and psychiatric settings. During a 3-year period, 453 students made 21,276 reports. Of the 10,206 positive (yes) responses to a hazard or near miss, 6,005 hazards (59%) and 4,200 near misses (41%) were reported. The most common reports were related to infection, medication, environmental, fall, and equipment issues. Of the near misses, 1,996 (48%) had planned interceptions and 2,240 (52%) had unplanned interceptions. Types of hazards and near misses varied by rotation. Incorporating hazard and near-miss reporting into the patient safety curriculum was an innovative strategy to promote mindfulness among nursing students.

The benefits of prayer on mood and well-being of breast cancer survivors.

OBJECTIVES: Prayer is becoming more widely acknowledged as a way to cope with cancer. The goal of this study was to compare differences in use of prayer between breast cancer survivors from different ethnic groups and examine how use of prayer is related to mood and quality of life. METHODS: This study used a mixed methods design. One hundred and seventy-five breast cancer survivors participated in a longitudinal study of survivorship. Women completed in-depth qualitative interviews and a battery of measures including quality of life, spirituality, social support, and mood. RESULTS: Eighty-one percent of the women prayed. There were no significant differences between the groups for any of the psychological, social support, or quality of life variables with the exception of higher benefit finding and spiritual well-being among those who prayed. The data did show that women who prayed were able to find more positive contributions from their cancer experience than women who did not pray. The interviews showed that those who prayed tended to be African American or Asian, Catholic or Protestant. The prayers were for petitioning, comfort, or praise. Some of the women stated that they had difficulty praying for themselves. CONCLUSIONS: While there seems to be few differences in terms of standardized measures of quality of life, social support, and mood between those who prayed and those who did not, the interviews showed that certain ethnic minority groups seem to find more comfort in prayer, felt closer to God, and felt more compassion and forgiveness than Caucasian women.

A randomized study of the effectiveness of a brief psychosocial intervention for women attending a gynecologic cancer clinic.

OBJECTIVES: While there are many psychosocial interventions for cancer patients, few are brief in nature. The aim of this study was to investigate the usefulness of a single-visit psychosocial intervention for gynecologic cancer patients. METHODS: One hundred women attending a gynecologic cancer clinic as new patients were randomized to receive no intervention or a one-time meeting with a psychologist who discussed issues and concerns the woman might have about her cancer diagnosis. Thirty-eight of the women had a current or previous cancer. The women were given questionnaires measuring mood and quality of life at baseline, two weeks and three months after the intervention. RESULTS: At baseline, 43 of the women in the control group completed questionnaires, as did 45 women randomized to the intervention. 21 of these women received the intervention. Women who received the intervention had greater decreases in anxiety, depression and overall distress over time. The control group also had decreases in anxiety and overall distress over time, but had an increase in depression. The women in the intervention group increased in physical, emotional, functional, and overall well being, while the control group only had a slight increase in overall well being over time. The difference between the groups in emotional well being at Time 2 approached significance (p=.08). The intervention group had increases in positive coping at Time 2, while the control group decreased (p's ranged from .02-.10). Three month follow-up data were available for 23 women in the control group and 15 in the intervention group. At Time 3 functional well being was significantly higher in the intervention group (p=.04). Information seeking and affect regulation remained higher in the intervention than the control group (p's=.002 and .02, respectively). When the women with cancer or previous cancer were examined, significant differences were seen for affect regulation at baseline (p=.0007), and anger two weeks later (p=.04), with the women in the control group being more angry. Utilization of other cancer resources was low with 12% of the women reporting that they used the Cancer Resource Center. CONCLUSIONS: The results of this study show that there was a positive effect towards coping and quality of life for a one-time psychosocial intervention after the first visit to a gynecologic oncology practice. Women who were randomized to the intervention but did not go were more distressed at baseline than the women who did go. This suggests that incorporating psychosocial services as an integrated part of the new patient consultation may be very important to address patient's distress. Future studies with larger sample sizes may reveal more significant differences. Strategies to overcome the poor utilization of the cancer resource center are also clearly needed to improve awareness of these resources.

Compassionate intention as a therapeutic intervention by partners of cancer patients: effects of distant intention on the patients' autonomic nervous system.

OBJECTIVE: This double-blind study investigated the effects of intention on the autonomic nervous system of a human "sender" and distant "receiver" of those intentions, and it explored the roles that motivation and training might have in modulating these effects. DESIGN: Skin conductance level was measured in each member of a couple, both of whom were asked to feel the presence of the other. While the receiving person relaxed in a distant shielded room for 30 minutes, the sending person directed intention toward the receiver during repeated 10-second epochs separated by random interepoch periods. Thirty-six couples participated in 38 test sessions. In 22 couples, one of the pair was a cancer patient. In 12 of those couples, the healthy person was trained to direct intention toward the patient and asked to practice that intention daily for three months prior to the experiment (trained group). In the other 10 couples, the pair was tested before the partner was trained (wait group). Fourteen healthy couples received no training (control group). OUTCOME MEASURES: Using nonparametric bootstrap procedures, normalized skin conductance means recorded during the intention epochs were compared with the same measures recorded during randomly selected interepoch periods, used as controls. The preplanned difference examined the intention versus control means at the end of the intention epoch. RESULTS: Overall, receivers' skin conductance increased during the intention epochs (z = 3.9; P = .00009, two-tailed). Planned differences in skin conductance among the three groups were not significant, but a post hoc analysis showed that peak deviations were largest and most sustained in the trained group, followed by more moderate effects in the wait group, and still smaller effects in the control group. CONCLUSIONS: Directing intention toward a distant person is correlated with activation of that person's autonomic nervous system. Strong motivation to heal and to be healed, and training on how to cultivate and direct compassionate intention, may further enhance this effect.

Ethnicity and spirituality in breast cancer survivors.

INTRODUCTION: Many women are incorporating spirituality as a way of coping with cancer. However, few studies have examined the role of spirituality in mood and quality of life among breast cancer survivors from different ethnic groups. METHODS: One hundred and seventy-five women who had completed treatment for breast cancer participated in in-depth interviews about their experiences. Transcripts were available for 161 women. RESULTS: The majority (83%) of the women talked about their spirituality. The main themes were: (1) God as a Comforting Presence; (2) Questioning Faith; (3) Anger at God; (4) Spiritual Transformation of Self and Attitude Towards Others/Recognition of Own Mortality; (5) Deepening of Faith; (6) Acceptance; and (7) Prayer by Self. A higher percentage of African-Americans, Latinas, and Christians felt comforted by God than the other groups. CONCLUSIONS: These results are consistent with the common assumption that more African-American and Latinas engage in spiritual activities and that African-Americans are more fatalistic than the other groups. IMPLICATIONS FOR CANCER SURVIVORS: The present findings suggest that there are several dimensions of spirituality experienced among cancer survivors. For many the trauma of a cancer diagnosis might deepen their faith and appreciation of life as well as changing the way they view at themselves, their lives, and how they relate to those around them, including God.

A pilot study: evaluation of a psychosocial program for women with gynecological cancers.

Ovarian cancer is the fourth highest cause of cancer deaths in the US. Psychosocial issues may be prevalent among these women. This study examined the efficacy of a gynecological cancer resource program. Fifty-three women completed questionnaires over a year's time. The women felt positively about the program, and used several of the services. The most used services were that of the center coordinator/nurse practitioner, the GYN support group, the hair consultant, and the imagery sessions. The social worker, massage therapist, and the nutritionist seemed to be important at the beginning of the cancer experience but not so much at later stages. Having a nurse practitioner who could talk about treatment side effects, menopause, body image, sexuality, etc., was helpful to at least half of the women. Psychological distress decreased over time, as did quality of life.

Helping patients make decisions about complementary and alternative treatments: the social work role.

Increasingly people are using complementary and alternative modalities (CAM) to cope with and manage cancer. Many patients, however, do not know how to access credible information and make informed treatment decisions. Social workers are in a unique position in the healthcare team to facilitate patients' decision-making about CAM. Skills and techniques to educate patients and to help them communicate with their healthcare practitioners about CAM are described. The authors introduce questions patients should ask to make better-informed treatment decisions, and describe social work interventions to help patients explore their choices in the context of personal history, meaning, beliefs and lifestyle. Lastly, the position of the social worker vis à vis the institution and its stance on CAM is explored.

Change in post-traumatic stress symptoms following psychosocial treatment for breast cancer.

The diagnosis of cancer is a traumatic experience, which may result in post-traumatic stress symptoms, such as arousal, re-experiencing the diagnostic process and avoidance. Changes in post-traumatic symptoms were assessed in 181 women with breast cancer who participated in either a standard support group or complementary/alternative (CAM) oriented intervention. At baseline 26 women were classified as having significant PTSD symptoms. After the 12-week sessions, significant decreases in the number of women with PTSD was seen in both interventions, however it was more evident in the Standard group where there was a 91% reduction in the number of women with PTSD versus an 80% reduction in the CAM group. For women with PTSD both groups showed significant decreases in overall PTSD symptoms and arousal. However, only the women in the Standard support group showed significant decreases in re-experiencing and avoidance symptoms. For the entire sample only women in the Standard group had significant decreases in overall PTSD, re-experiencing, and arousal. These results indicate that PTSD symptoms can be prevalent among women with breast cancer, and that while psychosocial interventions can be effective in reducing this type of distress, a support group might be more effective than a more complementary/alternative oriented intervention.