Change in Need for Psychosocial Support for Women with Early Stage Breast Cancer

Abstract

To simulate the longitudinal needs of patients treated for breast cancer, 2 groups of women were recruited. Patients within 6 months of diagnosis were considered in the “early” group and those 6–12 months after diagnosis were categorized as the “late” group. Participants were asked to identify effective and ineffective methods of psychosocial support and how those needs changed. Thirty-one women participated in the focus groups. Women in the early group identified problems related to their surgery and chemotherapy; those in the late group focused on symptoms associated with menopause. An exaggerated fear of disease recurrence and death were common to both groups. Most women found it difficult to strike a balance between wanting emotional support and wanting to be treated as “normal.” The provision of concrete medical information in the form of pathology and laboratory reports and information from health care professionals provided comfort and control. Spouses and partners were helpful in providing tangible assistance with transportation and childcare while female friends were more likely to share emotions. Organized support groups were helpful to only 13%. Participants acknowledged a need to learn how to identify their psychosocial needs and to ask for support from friends and family. Medical information provided patients with a sense of control and comfort. Women with breast cancer need to identify effective sources of emotional support and should be taught how to communicate those needs to their families and friends.     

Breast cancer and problems with medical interactions: relationships with traumatic stress, emotional self-efficacy, and social support

This investigation examined relationships between breast cancer patients' psychosocial characteristics (impact of the illness, traumatic stress symptoms, emotional self-efficacy, and social support) and problems they perceived in their medical interactions and their satisfaction with their physicians. Participants were 352 women enrolled in a multicenter trial of the effects of group therapy for women with recently diagnosed primary breast cancer. The findings reported here are from a cross-sectional analysis of baseline data gathered prior to randomization. Problems interacting with physicians and nurses were associated with greater levels of cancer-related traumatic stress (p < 0.01), less emotional self-efficacy for cancer (p < 0.05), less satisfaction with informational support from family, friends, and spouse, and a tendency to perceive those sources of support as more aversive (p < 0.05). Women who were less satisfied with emotional support from their family, friends and spouse were less likely to feel satisfied with their physicians (p < 0.05). These patient characteristics identify women with primary breast cancer who are likely to experience difficulty in their interactions with nurses and physicians and to be less satisfied with their physicians.     

Racial/ethnic differences in adequacy of information and support for women with breast cancer

BACKGROUND: Providing breast cancer patients with needed information and support is an essential component of quality care. This study investigated racial/ethnic variations in the information received and in the availability of peer support. METHODS: In total, 1766 women who were diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results registry from June 2005 to May 2006 were mailed a survey after initial treatment. Among accrued cases, 96.2% met eligibility criteria (n = 1698), and 72% completed the survey. Race/ethnicity categories were white, African American, and Latinas (2 categories indicating low or high acculturation, which was determined by using the Short Acculturation Scale for Hispanics). Outcomes included receipt and need for treatment-related and survivorship-related information, difficulty understanding information, and support from women with breast cancer. RESULTS: More women reported receiving treatment-related information than survivorship-related information. After adjusting for sociodemographic, clinical, and treatment factors, a higher percentage of low acculturated Latina women desired more information on treatment-related and survivorship-related issues (P < .001). Significantly more Latina low acculturated women than white women reported difficulty understanding written materials, with 74.5% requiring help from others. A higher percentage of all minority groups compared with whites reported no contact with other women with breast cancer (P < .05) and reported less contact through family/friends (P < .05). Women rated the benefit of talking to other women high, particularly with emotional issues. CONCLUSIONS: Continued efforts to provide culturally appropriate information and support needs to women with breast cancer are necessary to achieve quality care. Latinas with low acculturation reported more unmet information and care support needs than women in other racial/ethnic groups.     

Videoconferencing for delivery of breast cancer support groups to women living in rural communities: a pilot study

Women with breast cancer in rural areas are likely to exhaust their usual sources of psychosocial support while still facing challenges posed by breast cancer, but are unlikely to have access to professionally led support groups. In this community-based project, we assessed the feasibility and acceptability of providing support groups to women with breast cancer in a large rural area using videoconferencing and a workbook journal, and we assessed the intervention's potential to reduce distress and increase emotional expression and self-efficacy for coping with cancer. Twenty-seven women in the Intermountain Region of northeastern California participated in eight-session support groups led by an oncology social worker by going to nearby videoconferencing sites. Feasibility and acceptability were demonstrated. Older as well as younger women were comfortable using videoconferencing and said the groups were valuable because they promoted information sharing and emotional bonds with other women with breast cancer. They emphasized the importance of a professional facilitator and identified advantages of using videoconferencing for support groups. Pretest and posttest comparisons showed significant decreases in depression and posttraumatic stress disorder symptoms. The results suggest that the intervention has the potential to provide a valuable service that is not readily available in rural communities.     

A randomized controlled trial of psychosocial interventions using the psychophysiological framework for Chinese breast cancer patients

This study aimed to investigate the psychophysiological outcomes of different psychosocial interventions for breast cancer patients. Participants were randomly assigned into 3 intervention groups, namely, Body-Mind-Spirit (BMS), Supportive-Expressive (SE), and Social Support Self-Help (SS) groups; a no-intervention group was used as control. Salivary cortisol was used as the physiological stress marker. Distress level, mental adjustment, emotional control, and social support were measured. Data were collected at baseline, 4 month, and 8 month. Preliminary results indicated that BMS intervention produced the greatest and the most sustained effects. It enhanced positive social support, reduced psychological distress, emotional control, and negative mental adjustment. Total salivary cortisol was lowered after 8 months. Most participants in SE groups indicated the treatment helpful, but changes in psychophysiological outcomes were not statistically significant. Participants in SS groups seemed less likely to benefit from the intervention. The no intervention control group indicated a reduction in social support. These outcomes suggest that active professional intervention is more likely to yield therapeutic effects. In particular, psychosocial intervention attending to the spiritual dimension contributes to positive outcomes.     

Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach

CHARLIER C., PAUWELS E., LECHNER L., SPITTAELS H., BOURGOIS J., DE BOURDEAUDHUIJ I. & VAN HOOF E. (2012) European Journal of Cancer Care Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach The transition from breast cancer patient to survivor is associated with many treatment‐related and psychosocial factors, which can influence health behaviour and associated needs. First, this study aimed to identify clusters of treatment‐related and psychosocial factors among breast cancer survivors. Second, clusters' physical activity levels and care needs for physical activity were evaluated. Breast cancer survivors (n= 440; 52 ± 8 years) (3 weeks to 6 months post treatment) completed self‐reports on physical and psychological symptoms; illness representations; social support and coping; physical activity and care needs for physical activity. Analyses identified four clusters: (1) a low distress‐active approach group; (2) a low distress‐resigned approach group; (3) a high distress‐active approach group; and (4) a high distress‐emotional approach group. Physical activity levels were higher in the low distress groups than in the high distress‐emotional approach group. However, women with low distress and an active approach reported equal care needs for physical activity than women with high distress and an emotional approach. These findings suggest that care needs for physical activity are unrelated to distress and actual physical activity levels. The results emphasise the importance of screening for needs and provide a framework supporting the referral of breast cancer survivors to tailored interventions.     

Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer

We evaluated the helpfulness of informational, emotional, and decision-making support received by women newly diagnosed with breast cancer from their family, friends, and health care providers. Data were collected at two time points via patient surveys: baseline on an average 2 months post-diagnosis and follow-up at 5 months post-baseline. In the period closer to diagnosis, majority of the women received helpful informational support from health care providers (84.0%); helpful emotional support from family (85%), friends (80.4%), and providers (67.1%); and helpful decision-making support from providers (75.2%) and family (71.0%). Emotional support at baseline and emotional and informational support at 5-month follow-up were significantly associated with patients' health-related quality of life and self-efficacy outcomes (p<0.01). Perceived helpfulness of informational, emotional, and decision-making support provided by family, friends, and providers however significantly decreased over time (p<0.001). Cancer patients' desire significant amount of support throughout their cancer journey. Our results show that while patients receive a lot of support during the period closer to diagnosis, receipt of helpful support drops significantly within the first year itself. In order to facilitate cancer patients' adjustment to their illness, efforts need to be made to understand and address their support needs throughout the cancer experience.     

Are patient assistance programmes able to meet the needs of New York City women with breast cancer? Women's perspectives

Women with breast cancer report needs that may interfere with their ability to obtain necessary treatments. High-quality community-based patient assistance programmes exist; however, their ability to identify and meet women's needs is unknown. We surveyed women with breast cancer attending such programmes to assess programmes' ability to identify and meet their needs. We surveyed 117 (42% minority) women utilizing nine programmes in the New York City area about expectations, needs and experiences. Ninety-two (89%) women wanted information, 102 (95%) psychosocial support and 15 (20%) practical assistance. Seventy-three per cent had all or most of their needs identified, and 74% had all or most of their needs met. Seventy per cent stated programmes met needs they were not previously aware they had. Needs identified and met were lower among minority women (57% vs. 84%; P  = 0.003), those with lower income (46% vs. 79%; P  = 0.02) and those in poor physical health (56% vs. 78%; P  = 0.04), independent of the type of need. High-quality community-based patient assistance programmes effectively identify and meet the needs of women with breast cancer but traditionally at-risk women appear less likely to have needs identified and met. Programmes should enhance the systemization and sensitivity of needs assessments to improve women's experience with cancer.     

Consumer participation in the development of psychosocial clinical practice guidelines: opinions of women with breast cancer

Clinical practice guidelines are playing an increasingly important role in defining quality care and consumers have a considerable interest in participating in the development of guidelines. The objective of this study was to explore consumer's perceptions of guideline items relating to psychosocial care of women with breast cancer, developed by Australia's National Health and Medical Research Council National Breast Cancer Centre. Women diagnosed with breast cancer in the previous 2 years ( n  = 313) received a letter about the study via their radiation oncologist. Consenting women were contacted by the researchers to complete a telephone survey. The survey asked women to rate the importance of draft guidelines items, including discussing prognosis, providing information and choice, doctor-patient communication, preparation for surgery, providing emotional support, providing social support, dealing with practical and cultural issues and continuity of care. One hundred and forty women (45%) completed the survey. The results indicated that at least 50% of respondents rated 28 of the 52 items as 'essential' components, with respondents identifying providing information and choice, and doctor-patient communication as the most important aspects of psychosocial care. The findings suggest the guidelines adequately reflect consumer opinions and identify priority areas for clinicians to address in providing psychosocial support to women with breast cancer.     

Providing psychosocial group support for young women with breast cancer: findings from a wellness-based community collaboration

This article describes our experience offering a collaborative, wellness-based group support program for young women with breast cancer. Goals were (1) to identify needs and priorities of young women with breast cancer; (2) to test the feasibility of a collaboration between an academic medical center, a regional cancer center, and a community-based agency; and (3) to positively influence participants' overall quality of life (QOL), emotional distress, and psychological well-being. The group intervention consisted of presentation of various topics, group discussion, and relaxation exercises. No significant changes on QOL or emotional measures were seen. Participants rated the session on symptom management as most useful and identified two areas for potential improvement (more homogeneity of participants, suggestions for additional topics).     

Appraising the self-assessed support needs of Turkish women with breast cancer

The purposes of this study were to establish the range of needs of women with breast cancer and to examine how women's needs might form clusters that could provide the basis for developing a standardized scale of needs for use by local breast care nurses in the evaluation of care. The sample consisted of 143 women with breast cancer who were admitted to the outpatient and inpatient oncology clinics in a university hospital in Erzurum, Turkey. The data were collected by questionnaire, and included demographic characteristics and the self-assessed support needs of women with breast cancer. Statistical analyses have shown that the standardized scale of needs has statistically acceptable levels of reliability and validity. The women's support needs mostly clustered in Family and Friends (79%) and After Care (78.3%). The most frequently required support category was Family and Friend; however, the women were in need of support of all categories. In terms of age ranges, there are statistically significant differences in relation to Femininity and Body Image, and Family and Friends of the seven categories. Women experienced a high level of needs associated with a diagnosis of breast cancer. The results in this study should increase awareness among cancer care professionals about a range of psychosocial needs and may help them target particular patient groups for particular support interventions.     

Perceived Partner Adaptation and Psychosocial Outcomes for Newly Diagnosed Stage I and Stage II Breast Cancer Patients

The current study examines the relationship between a woman's perception of her partner's emotional, behavioral, and intimate adaptation to her breast cancer and her levels of distress, well-being, and social support. Sixty-six women diagnosed with Stage I or II breast cancer within the previous year completed distress, well-being and social support measures and answered open-ended questions describing their partners’ adaptation to their cancer. Women whose partners’ intimate adaptation is positive had significantly lower distress, and positive emotional and intimate adaptation was related to higher well-being and social support. These results suggest that efforts to address women's psychosocial needs during their initial treatment of breast cancer should include a focus on their relationships and, possibly, interventions aimed at assisting the adjustment of their spouse or significant other.     

Psychosocial intervention for lesbians with primary breast cancer

This study examined the effects of a Supportive-Expressive group therapy intervention offered to lesbians with early stage breast cancer. Twenty lesbians diagnosed with breast cancer in the previous 12-months were recruited and assessed at baseline, and at 3, 6, and 12 months after the group intervention. During the 12-week intervention, group members focused on the problems of a new diagnosis, coping with the illness and treatment, mood changes, coping responses and self-efficacy, improving relationships with family, friends and physicians, the impact of the illness on life, pain and sleep, and changes in body image and sexuality. A within-subject slopes analysis was conducted on data collected for each woman over the first year. As predicted, women reported reduced emotional distress, intrusiveness, and avoidance, and improved coping. There were significant changes in their social support, but in the unexpected direction. Instrumental support and informational support declined. However, conflict in family relations also declined, while trends were found towards more cohesiveness and expressiveness. Participants reported less pain and better sleep. There were no changes in body image, sexuality, or attitudes toward health-care providers. These results suggest that Supportive/Expressive group intervention appears to be helpful for lesbians with breast cancer.     

A Qualitative Study of an Internet-Based Support Group for Women with Sexual Distress Due to Gynecologic Cancer

Internet-based support groups for cancer patients have been studied extensively; very few have focused on gynecologic cancer. We pilot-tested a web-based support group for gynecologic cancer patients and assessed women’s perceptions of the intervention. Twenty-seven gynecologic cancer patients were randomized to an immediate intervention or a waitlist control group. Women participated in a 12-week, web-based support group focusing on sexuality-related topics. Semi-structured interviews were conducted to investigate the feasibility and efficacy of the intervention. Women reported benefits to participating in the intervention, including receiving support from group members and moderators, increased emotional well-being, improved feelings of body image and sexuality, and comfort in discussing sexuality online. Web-based support groups are both feasible and accepted by gynecologic cancer patients with psychosexual distress. The online format provided women with easy access to the support group and anonymity in discussing psychosexual concerns. Women with gynecologic cancer may benefit from participating in online support groups which provide an environment of relative anonymity to discuss psychosexual concerns.     

The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors

Due to improvements in medical treatment and survival following breast cancer, researchers have turned their attention to investigating the needs of breast cancer survivors. There is disagreement about the extent to which survivors continue to experience psychological morbidity after treatment ends. Whilst the majority of women adjust well to breast cancer, some may have continued psychosocial needs. Available research suggests that younger pre-menopausal women are at increased risk of psychological morbidity following breast cancer. The present study aimed to gather preliminary qualitative data on the psychosocial needs of breast cancer survivors and to identify the shared and unique needs of younger versus older survivors. A qualitative methodology was chosen as this was a relatively unexplored area of enquiry. Patients treated for early-stage breast cancer who had completed their hospital-based treatment 6-24 months prior to participation were recruited. Sampling was discontinued when informational redundancy was achieved. Eighteen telephone interviews were conducted. A wide variety of on-going psychosocial and information needs were reported by breast cancer survivors including support needs, psychological needs, practical needs, physical needs and information needs. Younger women reported more needs than their older counterparts. Several needs reported by younger women were directly related to being of younger age or pre-menopausal at the time of diagnosis. Clinical implications are discussed.     

Evaluation of an internet support group for women with primary breast cancer

BACKGROUND: Women with breast carcinoma commonly experience psychologic distress following their diagnosis. Women who participate in breast cancer support groups have reported significant reduction in their psychologic distress and pain and improvement in the quality of their lives. Web-based breast cancer social support groups are widely used, but little is known of their effectiveness. Preliminary evidence suggests that women benefit from their participation in web-based support groups. METHODS: Seventy-two women with primary breast carcinoma were assigned randomly to a 12-week, web-based, social support group (Bosom Buddies). The group was semistructured, moderated by a health care professional, and delivered in an asynchronous newsgroup format. RESULTS: The results indicate that a web-based support group can be useful in reducing depression and cancer-related trauma, as well as perceived stress, among women with primary breast carcinoma. The effect sizes ranged from 0.38 to 0.54. Participants perceived a variety of benefits and high satisfaction from their participation in the intervention CONCLUSIONS: This study demonstrated that the web-based program, Bosom Buddies, was effective in reducing participants' scores on depression, perceived stress, and cancer-related trauma measures. The effect size of the intervention was in the moderate range. Although web-based social support groups offer many advantages, this delivery mechanism presents a number of ethical issues that need to be addressed.     

Correlates of depressive symptomatology in African-American breast cancer patients

Purpose

This study assessed the levels of depressive symptomatology in African-American women with breast cancer compared to those of women without breast cancer and examined demographic, psychosocial, and clinical factors correlated with depression.

Methods

A total of 152 African-American women were recruited from Washington, DC and surrounding suburbs. Breast cancer patients (n?=?76 cases) were recruited from a health care center and women without cancer were recruited from health fairs (n?=?76 comparison). We assessed depression, psychosocial variables (ego strength and social support), and sociodemographic factors from in-person interviews. Stage and clinical factors were abstracted from medical records. Independent sample t test, chi square test, analyses of variance, and multiple regression models were used to identify differences in depression and correlates of depression among the cases and comparison groups.

Results

Women with breast cancer reported significantly greater levels of depression (m?=?11.5, SD?=?5.0) than women without breast cancer (m?=?3.9, SD?=?3.8) (p?<?0.001). Higher cancer stage (beta?=?0.91) and higher age (beta?=?0.11) were associated with depression in the breast patients, explaining 84 % of the variance. In the comparison group, ego strength and tangible support were inversely associated with depressive symptoms, accounting for 32 % of the variance.

Conclusions

Women with more advanced disease may require interdisciplinary approaches to cancer care (i.e., caring for the whole person).

Implications for Cancer Survivors

Depression is often underrecognized and undertreated in African-American breast cancer patients. Understanding the factors related to depression is necessary to integrate psychosocial needs to routine cancer care to improve survivors’ quality of life.     

The role of psychosocial factors in the development of breast carcinoma: Part II. Life event stressors, social support, defense style, and emotional control and their interactions

BACKGROUND: The evidence supporting an association between life event stress and breast carcinoma development is inconsistent. METHODS: Five hundred fourteen women requiring biopsy after routine mammographic breast screening were interviewed using the Brown and Harris Life Event and Difficulties Schedule. Other psychosocial variables assessed included social support, emotional control, and defense style. Biopsy results identified 239 women with breast carcinoma and 275 women with benign breast disease. Multiple logistic regression analysis was used to distinguish between breast carcinoma subjects and benign breast disease controls based on these psychosocial variables and their interactions. RESULTS: The findings of the current study revealed a significant interaction between highly threatening life stressors and social support. Women experiencing a stressor objectively rated as highly threatening and who were without intimate emotional social support had a ninefold increase in risk of developing breast carcinoma. CONCLUSIONS: Although there was no evidence of an independent association between life event stress and breast carcinoma, the findings of the current study provided strong evidence that social support interacts with highly threatening life stressors to increase the risk of breast carcinoma significantly. [See also accompanying article on pages 679-85, this issue.] Copyright 2001 American Cancer Society.