Change in need for psychosocial support for women with early stage breast cancer

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.     

ABSTRACTS AND BIBLIOGRAPHY

Abstract

This article describes a study in which a systematic classification of cancer patients was produced on the basis of their needs. A series of 380 cancer patients from four hospitals in the North West of England responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. Four patterns of need were identified. The groups differed in both quantityand qualityof patients' expressed needs. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals domains. Because the four groups differed by demographic and socioeconomic characteristics, there is scope for developing risk scores to predict these patterns of psychosocial needs in patients with cancer. The dangers and limitations of this approach are discussed.     

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.     

Online support groups offer low‐threshold backing for family and friends of patients with prostate cancer

A prostate cancer diagnosis affects not only the patients but also their family and friends. We performed a secondary analysis of a survey of users of the largest German online support group (OSG) for prostate cancer. We collected socio‐demographic, psychological and disease‐related data over a three‐month period in 2013. Among 769 participants with a complete questionnaire, 686 were patients, and 83 were family members and friends of other patients. The family and friends group comprised 33% spouses, 31% children and 36% people with other relationships to the patient (“others”). Compared to the patient group, the family and friends group showed higher scores for anxiety and depression and described a higher rate of metastatic disease in the patients with whom they had a relationship. The children of patients showed the highest psychological burden based on their scores for anxiety and depression. Only 7% of spouses and none of the children attended face‐to‐face support groups, compared to 70% of people in the “others” group. OSGs offer low‐threshold support for family members and friends; specifically, they meet the needs of spouses and children who do not attend face‐to‐face support groups. To improve counselling efforts, physicians should be aware of this online resource.     

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.     

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.     

Can trained volunteers provide psychosocial support to patients undergoing radiotherapy? The perspective of patients and volunteers

PurposeClinic-based psychosocial interventions, including volunteer-based ones, may be a cost-efficient and acceptable means of integrating psychosocial support into cancer care during radiotherapy. The present study evaluated a new psychosocial volunteer support program in a large radiotherapy clinic.Methods and MaterialsPatients were asked to complete a demographic and satisfaction with care questionnaire. Clinic volunteers were asked to report their interactions with patients on shift logs.ResultsOf the 182 participating patients, 93 (51%) recalled meeting a volunteer in the clinic, with the 2 most common support types provided being the following: “listening and caring,” and “information on services.” Analysis of 224 volunteers' shift logs indicated that almost all interactions (94%) were initiated by the volunteers, and almost half (47%) involved the patients' companions in the clinic. The most common support type documented was “information and navigation” (71%), followed by “emotional” (47%), “diversional” (21%), and “physical/practical” (17%) support.ConclusionsTrained volunteers can effectively provide clinic-based psychosocial support and information to a high proportion of radiotherapy patients. These findings demonstrate that volunteer support is a feasible means of meeting the psychosocial needs of patients with cancer attending outpatient radiotherapy clinics, who may not require or want professional psychosocial support.     

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.     

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.     

Visualizing the Invisible—The Needs and Wishes of Childhood Cancer Survivors for Digitally Mediated Emotional Peer Support

This study aims to identify the needs and wishes of childhood cancer long-term survivors for digitally mediated emotional peer support. Survivors of childhood cancer (six men, seven women) aged 19–33, participated in semi-structured interviews (November–December 2020). Age of diagnosis ranged from 1 to 13 years. The interviews lasted between 45 and 85 min. A thematic analysis was used to identify three themes for needs: processing long-term complications of cancer treatment, processing psychosocial health and meeting others who share similar experiences; and another three themes reflecting wishes: digital tools for connecting with people who had had similar experiences, different modes of communication and a safe place with varying degrees of anonymity. The findings emphasized the needs and wishes of childhood cancer survivors to meet others who had had similar experiences using a digital tool that offered a secure place, with options for a variety of communication methods and levels of anonymity. Peer support can serve as an important complement to professional psychosocial support.     

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.     

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.     

High Risk Breast Cancer Screening is a Double Edged Sword: A Qualitative Study of Patient Perspectives on the Ontario High Risk Breast Cancer Screening Program

BackgroundMRI-based breast cancer screening for high-risk women has been associated with false positives. This study explored the benefits and drawbacks of MRI-based screening using in-depth patient interviews.MethodsThis was a qualitative study of interviews with women participating in the High Risk Ontario Breast Screening Program. Women enrolled at two centers who had completed at least one round of screening were invited to participate. Recruitment was suspended when thematic saturation was reached. Semi-structured telephone interviews were conducted and transcribed verbatim. Emergent themes were identified and a coding framework established.Results21 women (median age 41 years) participated in telephone interviews. Women had been in the program a median of 4 years (IQR 1-5), and 71% had experienced at least one abnormal screen. Eight participants (38%) had undergone biopsies. Six women (29%) were BRCA mutation carriers. MRIs were described as intimidating, uncomfortable, and claustrophobic. Participants were concerned about long-term exposure to gadolinium contrast. Compared to MRI, mammography alone was viewed as painful, less sensitive, and a “useless…waste of time.” MRI provided a “psychological safety net” that outweighed the distress associated with abnormal screens. Many women accepted this trade-off as a “two-edged sword” that was “worth it” and provided a sense of control. Suggestions for improvement included more information regarding the risks of MRI, and access to counselling.ConclusionsWomen participating in MRI-based screening strongly value reassurance from a highly sensitive screening test. This outweighed the distress of abnormal screens. There are areas for improvement around patient communication and psychosocial support.     

Cancer patient perspectives regarding preparedness for end-of-life care: A qualitative study

Purpose: The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of “preparedness,” however, there is insufficient information about what cancer patients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development. Design: This qualitative study examined patient perspectives regarding preparedness for EOL care. Participants and methods: In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data. Findings: Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning). Conclusions: Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.     

Retrospective Analysis of Emotional Burden and the Need for Support of Patients and Their Informal Caregivers after Palliative Radiation Treatment for Brain Metastases

Cancer burdens not only the patients themselves but also their personal environment. A few studies have already focused on the mental health and personal needs of caregivers of patients. The purpose of this retrospective analysis was to further assess the emotional burden and unmet needs for support of caregivers in a population of brain metastasis patients. In the time period 2013–2020, we identified 42 informal caregivers of their respective patients after palliative radiation treatment for brain metastases. The caregivers completed two standardized questionnaires about different treatment aspects, their emotional burden, and unmet needs for support. Involvement of psycho-oncology and palliative care was examined in a chart review. The majority of the caregivers (71.4%, n = 30) suffered from high emotional burden during cancer treatment of their relatives and showed unmet needs for emotional and psychosocial support, mostly referring to information needs and the involvement in the patient’s treatment decisions. Other unmet needs referred to handling personal needs and fears of dealing with the sick cancer patient in terms of practical care tasks and appropriate communication. Palliative care was involved in 30 cases and psycho-oncology in 12 cases. There is a high need for emotional and psychosocial support in informal caregivers of cancer patients. There might still be room for an improvement of psychosocial and psycho-oncological support. Care planning should cater to the emotional burden and unmet needs of informal caregivers as well. Further prospective studies in larger samples should be performed in order to confirm this analysis.     

Use of health-related and cancer-specific support groups among adult cancer survivors

BACKGROUND: Data from the National Health Interview Survey suggest that the utilization of mental health services among cancer survivors is low and unmet needs are high for some. However, to the authors' knowledge little is known regarding the prevalence and predictors of participation in health-related support groups. METHODS: A total of 9187 participants in the California Health Interview Survey Complementary and Alternative Medicine (CHIS-CAM) study completed a telephone interview in 2003 (1844 participants with cancer and 4951 participants with other chronic health problems). Participants were asked to describe previous/ current support group use, benefits of support group use, and physician involvement in decisions regarding support groups. Weighted logistic regression analyses were conducted using SUDAAN software to examine patterns of support group use. RESULTS: The prevalence of support group use was found to be higher among cancer survivors (23.7%) than those with another chronic health condition (14.5%). Predictors of support group use were found to be similar across groups and included female gender, greater education, use of complementary and alternative medicine (CAM), depression, and anxiety. Age, health insurance, and presence of depression predicted support group use differently for cancer survivors and those with other conditions. The percentages of those perceiving support groups to be beneficial varied from 35.1% for those with skin cancer to 96% for those with cervical cancer. The percentage of participants reporting that their physician recommended a support group was low (10.2%). CONCLUSIONS: Health-related support groups are used by nearly 1 in 4 cancer survivors, but levels of utilization differ across subgroups. An understanding of how cancer survivors use support groups highlights shortcomings in psychosocial care and suggests that additional efforts to overcome barriers to care are needed.