Online interaction. Effects of storytelling in an internet breast cancer support group

The internet provides new ways of forming social relationships among people with breast cancer and is increasingly used for this purpose. This qualitative study, using ethnographic case-study method, aimed to explore how support groups on the internet can break the social isolation that follows cancer and chronic pain, by analysing the storytelling emerging on the Scandinavian Breast Cancer Mailing list. Using participant observation and face-to-face or online interviews of participants, we investigated the motivations of 15 women who chose the internet to counteract social isolation after breast cancer. The results showed that the women were empowered by the exchanges of knowledge and experience within the support group. The internet was considered a means for finding ways of living with breast cancer. Our study suggests that internet support groups have important potential for the rehabilitation of cancer patients.     

Cognitive-existential group psychotherapy for women with primary breast cancer: a randomised controlled trial

BACKGROUND: We conducted a randomised, controlled trial of cognitive-existential group therapy (CEGT) for women with early stage breast cancer receiving adjuvant chemotherapy with the aim of improving mood and mental attitude to cancer. METHODS: Women were randomised to 20 sessions of weekly group therapy plus 3 relaxation classes or to a control arm receiving 3 relaxation classes. Assessments, independently done at baseline, 6 and 12 months, included a structured psychiatric interview and validated questionnaires covering mood, attitudes to cancer, family relationships, and satisfaction with therapy. RESULTS: Three hundred and three of 491 (62%) eligible patients participated over 3 years. Distress was high pre-intervention: 10% were diagnosed as suffering from major depression, 27% from minor depression and 9% from anxiety disorders. On an intention-to-treat analysis, there was a trend for those receiving group therapy (n=154) to have reduced anxiety (p=0.05, 2-sided) compared to controls (n=149). Women in group therapy also showed a trend towards improved family functioning compared to controls (p=0.07, 2-sided). The women in the groups reported greater satisfaction with their therapy (p<0.001, 2-sided), appreciating the support and citing better coping, self-growth and increased knowledge about cancer and its treatment. They valued the CEGT therapy. Overall effect size for the group intervention was small (d=0.25), with cancer recurrence having a deleterious effect in three of the 19 therapy groups. Psychologists as a discipline achieved a moderate mean effect size (d=0.52). CONCLUSION: CEGT is a useful adjuvant psychological therapy for women with early stage breast cancer. Interaction effects between group members and therapists are relevant to outcome. Group-as-a-whole effects are powerful, but the training and experience of the therapist is especially critical to an efficacious outcome.     

Family support for native Hawaiian women with breast cancer

BACKGROUND: A cancer diagnosis affects not only the individual but the entire family. Despite the growing body of literature on family support as a resource in cancer care, there is very little research on how cancer affects families in non-Western cultures. A minority population that experiences a disproportionate burden from cancer is Native Hawaiian women. METHODS: In this study, 8 Native Hawaiian women with breast cancer and 17 family members of other Native Hawaiian women with breast cancer participated in focus groups examining family support. Specifically, types of support provided by the family (eg, informational, emotional, and tangible), changing dynamics of family roles, and recommendations for health care providers, with attention paid to the influence of culture on family support, were topics that were examined. RESULTS: Similarly to other populations, Native Hawaiians viewed the family as the most important source of emotional and tangible support for women with cancer, and identified a need for increased informational support for both patients and families in the face of cancer. However, their reference to specific cultural values and practices within the 'ohana (family) [eg, haku (family liaison) and ho'omana (spirituality)] reflects a uniqueness that has implications for clinical work with this population. CONCLUSIONS: Consideration of cultural values and practices may enhance health care services for this population.     

Measurement in group interventions for women with breast cancer

Instrumentation is a critical component of intervention research. This article discusses a review of measurement tools used in research on group interventions for women with breast cancer. The wide variety of instruments used in research studies is listed. The criteria for instrument selection are compared with the most commonly used instrument, the Profile of Mood States. The authors summarize directions for future research related to instrumentation use.     

Defining a high mortality risk group among women with primary breast cancer.

Increasing interest has been focused on DNA ploidy, hormone receptor status and tumour size as prognostic factors in node-negative breast cancer. We analysed these factors in patients operated on for primary invasive breast cancer between January 1981 and December 1987 in a prospective study of 248 women with no involved axillary nodes and 188 women with positive nodes followed until 15 April 1989. Oestrogen or progesterone receptor negativity, aneuploidy and tumour diameter exceeding 20 mm were studied as negative prognostic signs in life table analyses and Cox proportional hazards models of corrected survival. Corrected survival decreased with increasing number of negative signs. Three to four signs yielded a statistically significant, two- to threefold higher risk than the others. Survival estimates by life table analyses differed by 20% at 5 years. In the whole group, women with three or four negative factors had a relative risk of dying from their disease more than twice that of the others. Women with no involved nodes and with three or four negative factors had a risk of dying from breast cancer similar to that of node-positive women with fewer than three.     

A psychosocial group intervention for Japanese women with primary breast carcinoma

BACKGROUND: To the authors' knowledge, there had been no evidence for the efficacy of psychosocial intervention among Japanese cancer patients. The objective of this study was to determine the effect of a psychosocial group intervention in reducing psychologic distress and enhancing coping in this population in a randomized controlled trial. METHODS: The patient selection criteria were age younger than 65 years, lymph node metastasis positive and/or histologic or nuclear Grade 2-3, and surgery undergone within the previous 4-18 months as of the start of the study. We conducted a 6-week, structured, psychosocial group intervention. The intervention consisted of health education, coping skills training, stress management, and psychologic support. Subjects were assessed for psychologic distress and coping by administering the Profile of Mood States (POMS), Mental Adjustment to Cancer (MAC) scale, and Hospital Anxiety and Depression (HADS) scale at the baseline, at 6 weeks, and at 6 months. RESULTS: Fifty (33%) of the 151 patients participated and were randomized, and 46 (30%) completed the study. The experimental group had significantly lower scores than the controls for total mood disturbance and significantly higher scores for vigor on the POMS, and significantly higher scores for fighting spirit on the MAC at the end of the 6-week intervention. These improvements were sustained over 6 months of follow-up. CONCLUSIONS: The results of this study suggest that a short term psychosocial group intervention produces significant long term improvement in the quality of life of Japanese patients with primary breast carcinoma.     

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).     

Effectiveness of group psychotherapy compared to social support groups in patients with primary, non-metastatic breast cancer

The aim of the present study is to compare the effectiveness of experiential-existential group psychotherapy with a social support group for women with a primary breast cancer on psychosocial adjustment. A total of 67 well-adjusted women, who had been operated not earlier than 4 months before start of the study, were randomized into one of the two conditions: participating in the group psychotherapy or in the support group. They were questioned at the start of the study, at the end of the intervention, and 1 year after completion of the intervention. Results at follow-up were mixed: Positive changes were reported for Body Image and Recreation, regardless of type of intervention. Other psychosocial adjustment indicators did not change. In general, we may conclude that well-adjusted women diagnosed with breast cancer do not specifically benefit from these types of interventions.     

Evaluation of a community-based cancer support group

Stimulated by patient need and encouraged by results from randomized studies in academic centers, many community organizations have initiated cancer support groups in order to improve the psychosocial adjustment of people coping with cancer. For a variety of reasons, little research has been done to evaluate these community support groups. The efficacy of cancer support groups, which has been demonstrated in academic centers, therefore awaits demonstration in community settings. This paper provides process and outcome data from 77 people with cancer who completed an 8-week support group facilitated by licensed and trained mental health professionals in a local community cancer support organization. Similar to the experience of others, participants were primarily female, of European descent, well-educated, and relatively young (mean age 50 years, S.D. = 12). As predicted, their self-reported quality of life (as measured by the Functional Living Index—Cancer) improved significantly, paired t = ? 2.06, p < 0.05. Five-point ratings (poor, fair, good, very good, excellent) were assigned either ‘very good’ or ‘excellent’ for the overall group (90%) and facilitator (87%). More detailed ratings of group and facilitator qualities were consistently and strikingly positive. While facilitators were rated positively and appreciated for their presence, peer support exceeded facilitator skill/input as the primary ingredient noted by participants to be the most helpful aspect of the group. Community-based cancer support groups appear to provide measurable benefit to participants who complete the group. The benefit is consistent with that demonstrated in randomized studies and emphasizes improvement in coping stimulated by mutual support in a safe environment.     

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.     

Participation in psychosocial group intervention among Japanese women with primary breast cancer and its associated factors

Though psychosocial group intervention is considered in the West to be an important source of support for reducing psychosocial distress in cancer patients, in Asian countries, there has been no research as yet on the needs for such intervention. This study investigated the level of participation and interest in psychosocial group intervention plus any associated factors in 151 primary breast cancer patients. All were less than 65 years old at 4-18 months post-surgery. Of the 126 subjects who responded (response rate 83%), 53 (42%) participated (participants) and 73 (58%) did not (non-participants). Participation was greater among those with a high level of anxiety measured by the Hospital Anxiety and Depression Scale (HADS) (odds ratio [OR], 3.25; 95% confidence interval [CI], 1.07-10.42), those who had undergone surgery within the last 12 months (OR, 3.10; 95% CI, 1.35-7.55), and those who were 50-65 years old (OR, 3.08; 95% CI, 1.33-7.66). Among the non-participants, 53 (73%) were interested in the intervention while 20 (27%) were not. Non-participants without any interest in the psychosocial group intervention had significantly higher anxiety levels than those with interest (t=-2.08; df=71; p=0.03). These results suggest that most Japanese breast cancer patients who need psychological support can be sought out by asking whether they are willing to participate in a psychosocial group intervention. However, the minority not interested in any psychological group intervention might need other supports such as medication or individual psychotherapy.     

Development of decision‐support intervention for Black women with breast cancer

Background: Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision‐support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black women's adjuvant therapy decisions, use these formative data to develop messages for a treatment decision‐support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women. Methods: Thirty‐four in‐depth interviews were conducted with breast cancer patients in active treatment, survivors and cancer providers to gather qualitative data. Participant ages ranged from 38 to 69 years. A cultural framework was used to analyze the data and to inform intervention messages. Most women relied on their providers for treatment recommendations. Several women reported problems communicating with providers and felt unprepared to ask questions and discuss adjuvant treatment options. Other factors related to treatment experiences were: spiritual coping, collectivism and sharing breast cancer experiences with other Black survivors. Results: Using these formative data, we developed an intervention that is survivor‐based and includes an in‐person session which incorporates sharing personal stories, communication skills training and decision support. Intervention materials were reviewed by community members, researchers/clinicians and patients newly diagnosed with breast cancer. Conclusion: Patients reported satisfaction with the intervention and felt better prepared to talk with providers. The intervention will be tested in a randomized trial to enhance decision support and increase use of indicated adjuvant treatment. Copyright © 2009 John Wiley & Sons Ltd.     

Development and evaluation of a culturally sensitive support group programme for Chinese-Australian women with breast cancer: a pilot study

Cancer support groups are an important vehicle for providing informational and psychosocial support to cancer survivors. Studies suggest that people from minority cultures are underrepresented in cancer support groups. The aims of this study were to report the development and evaluation of a culturally sensitive support group programme for Chinese-Australian women with breast cancer and to evaluate the informational and psychosocial impact of the programme. In collaboration with a Chinese cancer support organisation, 29 women were enrolled in the programme which was evaluated by a combination of quantitative and qualitative approaches. The results indicated that the programme was well received by the participants who suggested that the content was useful and relevant. In addition, the findings indicated that the programme, designed to be culturally sensitive and linguistically appropriate, was effective in providing informational support and psychosocial support for the participants. A methodology for giving breast cancer survivors a sense of interconnectedness and thus minimising their feelings of isolation and helplessness, were also among the chief outcomes of this study. The study provided some insight into the development of supportive cancer survivorship care for women being treated for breast cancer in the Australian-Chinese community.     

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.