Latina breast cancer survivors' lived experiences: diagnosis, treatment, and beyond

Latina breast cancer survivors are not benefiting from advances in psychosocial interventions. Despite their greater breast cancer burden, there is a dearth of information about this population. This qualitative study examined the experiences of 18 immigrant Latina breast cancer survivors along the survivorship continuum, from diagnosis to long-term survivorship. The authors conducted separate focus groups with women in the acute, reentry, and long-term survivorship stages. Through grounded theory analysis, the authors uncovered 5 themes of experience: perceptions of psychological well-being, impact of diagnosis, impact of treatment, need for social support, and development of new attitudes. Some themes were applicable across all survivorship stages, whereas others were more salient at a particular stage. Within themes, the authors identified experiences reported in the general literature (i.e., the debilitating effect of chemotherapy) and distinct cultural experiences (i.e., fear that a cancer diagnosis leads to certain death). Results suggest that treatments tailored for each survivorship stage are more likely to be effective than generic interventions. These findings have the potential to lessen health disparities in utilization of psychosocial treatments by Latina breast cancer survivors.     

Addressing women's breast cancer risk and perceptions of control in medical settings

Many women with family histories of breast cancer deal with two distinct but related issues: their objective physical risk and the emotions this risk engenders. Studies indicate that approximately 70% of African American and white women are concerned about their chances of developing breast cancer someday and perceive themselves to be at risk. Health care providers, including psychologists, need to be aware of the special needs and psychosocial concerns of high-risk women with family histories of breast cancer, since perceptions of breast cancer risk influence screening practices. Providers need training in understanding the significance of specific family patterns of breast cancer, screening guidelines appropriate for women at risk, and the benefits and risks of available prevention options, including genetic screening. Delivering accurate information about both established risk factors known to elevate personal risk, such as age and family history, and factors which women associate with breast cancer, such as bumping and bruising a breast, smoking, and oral contraceptive use, is essential for promoting accurate risk perceptions and appropriate screening schedules.     

Psychological Adjustment to Breast Cancer

Breast cancer remains a highly prevalent and extraordinarily stressful experience for hundreds of thousands of women each year in the United States and around the world. Psychological research has provided a picture of the emotional and social impact of breast cancer on patients' lives, and of factors associated with better versus worse adjustment. Psychosocial interventions have been beneficial in decreasing patients' distress and enhancing their quality of life. Recent research also suggests that psychological factors may be related to potentially important biological disease-related processes. In addition to providing an understanding of the psychological factors in breast cancer, research in this area has provided a framework for research on adaptation to health-related stress in general.     

Breast Cancer Risk Assessment at the Time of Screening Mammography: Perceptions and Clinical Management Outcomes for Women at High Risk

The purpose of this study was to evaluate the utility of a breast cancer risk assessment (BCRA) at the time of screening mammogram. Women whose BCRA indicated a high risk for cancer received a letter with instructions for breast health care and genetic counseling if appropriate. After 6 months this group received surveys to evaluate their risk perception and their recall of, and compliance with, recommendations. We also explored the impact of other variables such as a recommendation for genetic counseling and physician communication with the women. After the BCRA, the majority of high risk women reported no change in their perceived risk of cancer. A woman’s perceived risk of cancer after a BCRA was significantly associated with her recall of recommendations for breast health care, but not with compliance. A recommendation for genetic counseling was not significantly related to women’s perceived risk of cancer after the BCRA. Ten percent of women who should have obtained genetic counseling actually completed an appointment. Women who discussed their BCRA results with their physicians were more compliant with a six month breast exam with a doctor (53% vs 17%, p = 0.018). Overall, women felt that the BCRA was helpful and did not cause undue stress or anxiety. Although the cohort’s compliance with recommendations was suboptimal, physicians’ interactions with their patients may have a positive influence on their compliance.     

Testing Theoretical Explanations of Intention to Seek Care for a Breast Cancer Symptom1

The purpose of this research was to test theoretical explanations of intention to seek care promptly for a breast cancer symptom. Psychosocial variables (affect, expectations, values, and norms), habit, and facilitating conditions (e.g., insurance) regarding care seeking were proposed to influence intention to seek care promptly. Whether psychosocial variables and habit influenced intention directly or in interaction with facilitating conditions remained unclear. Other variables (i.e., clinical and demographic) were proposed to influence intention by mediation through the theoretical variables. Community-dwelling women without history of breast cancer (N= 99) responded to a questionnaire to assess study variables. In a hierarchical set regression, intention was first regressed on psychosocial variables, habit, and full insurance coverage for care, then on terms representing interactions of insurance coverage with psychosocial variables and habit, and lastly on clinical and demographic variables. Findings revealed that (a) anxiety (measure of affect), utility, (the product of expectations and values), and habit were related to intention, (b) having full insurance coverage did not moderate these relationships, and (c) after controlling for theoretical variables, family history of breast cancer was related inversely to intention. Implications for theory, research, and practice are delineated.     

Psychosocial Factors and Disease Progression in Cancer

ABSTRACT— Psychosocial factors such as stress, personality, and social support relate to differences in disease progression in cancer patients. Neuroendocrine substances associated with psychosocial factors may regulate immune responses to cancer, as well as regulate the activity of oncogenic (cancer-causing) viruses, DNA-repair processes, and the expression in tumor cells of genes that may affect the tumor's growth and metastasis. Biobehavioral oncology research seeks to understand how these psychosocial factors, and interventions designed to modify them, become neurohormonal changes that alter cell signaling and tumor growth, viral oncogenesis, and immune responses. We review the empirical basis for psychosocial factors and biobehavioral processes in cancer progression and suggest future research.     

Psychosocial responses associated with perceived risk of cancer in an African-American community

This epidemiologic health survey study examined the association between health risk perceptions and psychosocial factors in 145 African Americans in East Montgomery, Alabama. The survey gathered information on demographics, population dynamics, health risk perceptions, and coping behaviors. Psychosocial variables measured were worries, concern, stress, and trauma associated with perceived risk of cancer. Results indicated that women were more concerned about the environmental health risks in their community than men. Compared to men, women were highly concerned about the economic effect of perceived environmental health risk. The findings indicate that an individual's health status and educational level were significant predictors of psychosocial responses.     

ARE ALL LATINAS THE SAME? PERCEIVED BREAST CANCER SCREENING BARRIERS AND FACILITATIVE CONDITIONS

In this article, we examine perceived breast cancer screening barriers and facilitative conditions for immigrant women from Mexico, Puerto Rico, Cuba, El Salvador, and South America ( N = 58). Focus groups conducted separately with women of each ancestry were analyzed using grounded theory methods. Identified barriers comprise secrecy, lack of information, embarrassment, fear, and distrust of health care providers. Perceived facilitative conditions include knowing the importance of early detection and noticing a symptom. We compare and contrast findings across ancestries and discuss how psychosocial and cultural factors could be better integrated into early detection programs. The women's high screening rates also suggest that breast cancer screening can be facilitated in this population by addressing institutional factors (e.g., access to health care, transportation).     

Mismatches in social support and psychosocial adjustment to breast cancer.

Emotional support is known to provide psychosocial benefits for women with breast cancer, but women can experience a mismatch between support that is wanted and support that is received from their personal supporter. The role of wanted and unwanted support in psychosocial adjustment was examined in 79 women recovering from breast cancer. Four distinct patterns of desired support actions were found using cluster analysis. Patterns of wanted support were not related to better or worse psychosocial adjustment. However, a misalignment of support between the provider and the receiver significantly influenced psychosocial adjustment, and unwanted but received support (support commission) was uniquely associated with poor psychosocial adjustment. Clinical interventions using the support instrument could help match support providers' actions to receivers' preferences.     

Women’s Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings

Women with a personal or family history of breast or ovarian cancer are increasingly presenting for genetic cancer risk assessment (GCRA). To explore the personal and family impact of GCRA, four focus groups were conducted of women seen for risk assessment. Participants were 22 primarily non-Latina White women with a personal or family history of breast or ovarian cancer. Analysis of the data identified new themes related to balancing time to assimilate risk information with the need to make timely healthcare decisions, physicians’ lack of sufficient genetic knowledge, and concern for daughters regardless of the daughters’ age. Other themes related to protecting others, knowledge as empowerment, reassessing personal attribution of cancer risk, managing uncertainty, reappraising body image, and experiencing divergent family responses to communication of cancer risk and healthcare decisions. Understanding the personal and family impact of GCRA may enable genetics professionals to tailor their counseling efforts to better meet the needs of these women. Additional research is needed to extend these findings and identify interventions to support positive outcomes of GCRA.     

Experiences and Decisions that Motivate Women at Increased Risk of Breast Cancer to Participate in an Experimental Screening Program

Although the discovery of mutations on BRCA1 and BRCA2 genes associated with high breast cancer risk has given rise to screening and surveillance initiatives, there is little documentation on why high-risk women choose to enter screening programs. The objective of this qualitative study was to develop a detailed understanding of the experiences and decisions that motivate women with increased risk of hereditary breast cancer to participate in the multicentered Quebec experimental breast screening program. Our study involved 21 participants who were either BRCA carriers or at risk and untested. These women were interviewed while participating in the screening program. Our study demonstrates that intensive screening programs may provide valuable reassurance for women with increased familial risk of hereditary breast cancer, who count on early detection and rapid response from professionals if and when a problem arises. Health professionals must take these and others concerns into account to ensure their interventions are most consistent with women’s needs.     

Psychoonkologie

Changes in the spectrum of illnesses have led to a predominance of chronic diseases, including oncological disorders, that are connected with substantial mental health problems. The needs of people with cancer are increasingly attracting the attention of psychosocial and psychosomatic disciplines as far as patient-oriented health care research and counselling practice are concerned. Psychosocial work in oncology appears to be becoming increasingly professionalized. Theories of the psychosocial origin of cancer are gradually losing ground in the scientific community, giving way to a rational attitude towards oncological diseases that counters the stigma of cancer. At the same time, the demand for psycho-oncological services is becoming more important if we take into account the high rate of psychiatric co-morbidity and the fact that these patients are poorly diagnosed and inadequately treated. This is all the more regrettable in that a broad range of evidence-based interventions are available which are gradually being implemented in the guidelines of rehabilitation facilities and oncological centres of excellence. The transfer of knowledge in the everyday care of cancer patients, however, has yet not been accomplished.     

Measurement of psychosocial adjustment to breast cancer: a unidimensional or multidimensional construct?

Using data from a longitudinal study of Hoskins' 'Patterns of Adjustment to Breast Cancer among Women and their Partners', a conceptually derived multidimensional formulation of psychosocial adjustment was empirically tested. The Psychosocial Adjustment to Illness Scale was administered to both patients and partners at six times post-definitive surgery, i.e., 7-10 days, 30 days, 60 days, 90 days, 180 days, and one year. Extensive factor analytic studies were performed on data from the Psychosocial Adjustment to Illness Scale at four of the collection times when complete data sets were available for 128 patients and 121 partners. Results of the principal components analysis with varimax rotation were compared to factor analyses reported by the developers of the scale. The seven-factor matrix reported by Derogatis was not reproduced; instead, one factor was consistently identified at each of the four time periods as the best solution. Although items from all seven domains of the scale loaded on the single factor, items pertaining to psychological distress and role performance in the domestic and social environments were most prominent. These data support the need to validate empirically hypothesized separate dimensions of psychosocial adjustment to breast cancer in both patients and partners as proposed in a number of widely used tests.     

Neue Medien für die gesundheitliche Versorgung

The rapid development of information and communication technologies and their broad availability open up new opportunities for psychosocial service provision. Information materials provided via the internet have the potential to improve users’ competences and thus influence their health care utilisation by allowing for more active participation. Furthermore, a great variety of e-health interventions have been developed to improve care. These interventions are not limited to specific areas of service provision but span the whole range from prevention to aftercare programs. It has been shown that such technology-enhanced interventions can help to bridge gaps in health care services in an effective way.     

Women’s Experience of Telehealth Cancer Genetic Counseling

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.     

Effects of group prenatal care on psychosocial risk in pregnancy: results from a randomised controlled trial

Few interventions have succeeded in reducing psychosocial risk among pregnant women. The objective of this study was to determine whether an integrated group prenatal care intervention already shown to improve perinatal and sexual risk outcomes can also improve psychosocial outcomes compared to standard individual care. This randomised controlled trial included pregnant women ages 14-25 from two public hospitals (N = 1047) who were randomly assigned to standard individual care, group prenatal care or integrated group prenatal care intervention (CenteringPregnancy Plus, CP+). Timing and content of visits followed obstetrical guidelines, from 18-week gestation through birth. Each 2-h group prenatal care session included physical assessment, education/skills building and support via facilitated discussion. Using intention-to-treat models, there were no significant differences in psychosocial function; yet, women in the top tertile of psychosocial stress at study entry did benefit from integrated group care. High-stress women randomly assigned to CP+ reported significantly increased self-esteem, decreased stress and social conflict in the third trimester of pregnancy; social conflict and depression were significantly lower 1-year postpartum (all p-values < 0.02). CP+ improved psychosocial outcomes for high-stress women. This 'bundled' intervention has promise for improving psychosocial outcomes, especially for young pregnant women who are traditionally more vulnerable and underserved.     

Ethical and Professional Challenges of Genetic Counseling – the Case of Austria

Genetic counseling is gaining in importance with the increasing application of genetic testing for diagnosis and clinical treatment. Genetic counseling often raises ethical and professional challenges and prior research has categorized them into 16 domains. The purpose of this study was to analyze the situation in Austria on the basis of these challenges and discuss it in the national and international context. While in some countries there is a special profession for genetic counseling, in Austria it is provided by medical geneticists or other physicians in the context of their specialization. Psychosocial professionals might be consulted or brought in if necessary. Results from 95 survey respondents (including physicians and psychosocial professionals) revealed a greater interest in the topic of genetic counseling by medical specialists other than medical geneticists. The most frequently encountered challenges among physicians were informed consent, organizational constraints, withholding information, and attaining/maintaining proficiency. The psychosocial professionals experienced maintaining proficiency and organizational constraints as the prevalent challenges. Additional findings and practice implications are presented.     

Psychosocial Conditions of Women Awaiting Genetic Counseling: A Population-based Study

The decision whether to undergo genetic counseling for hereditary breast and ovarian cancer is complex. Knowledge about the psychosocial conditions of women who are awaiting counseling is sparse. We aimed to compare the psychosocial conditions of women awaiting genetic counseling with those of women in two reference groups. We included 567 women referred to genetic counseling for hereditary risk of breast or ovarian cancer (Genetic Group), 689 women referred to mammography (Mammography Group) and a random sample of 2,000 women from the general population (Population Group). One to 4 weeks before the first counseling session or mammography, data were collected by questionnaires. Both women affected with cancer and unaffected women in the Genetic Group appeared to have a somewhat higher prevalence of cancer-specific-distress than the corresponding reference groups. Further research on the effect of pre- counseling interventions appear warranted in addition with exploring a potential association between waiting time and cancer-specific distress.     

Psychological adjustment among African American breast cancer patients: one-year follow-up results of a randomized psychoeducational group intervention.

The effectiveness of support group interventions for cancer patients has been established among White patients but has been virtually unstudied among minority patients. The current study represents the 1st randomized support group intervention targeted to African American women with breast cancer. Participants (N = 73) with nonmetastatic breast cancer were randomly assigned to an 8-week group intervention or an assessment-only control condition At 12 months, the intervention resulted in improved mood as well as improved general and cancer-specific psychological functioning among women with greater baseline distress or lower income. Subsequent research is needed to address effective methods of enrolling and following women with fewer psychosocial and financial resources, as they were the most likely to benefit from this particular intervention.     

Anxiety and the blues after breast cancer: how common are they?

A number of myths exist concerning the psychological impact of breast cancer. Primary among these is the belief that women with breast cancer have greater emotional disability than individuals with other diseases or the population at large. While research has shown that women cope remarkably well with a diagnosis of breast cancer, an understanding of the key periods of anxiety and primary stressors is crucial to the overall psychological and medical management plan. While psychopharmacologic therapy may be indicated for women with breast cancer, it is rarely sufficient and should be combined with effective psychosocial interventions such as group therapy.