Influences on breast cancer screening behaviors in Tamil immigrant women 50 years old and over.

OBJECTIVE: To investigate, using the Health Belief Model as a theoretical framework, the incentives and barriers to breast cancer screening in a recent immigrant group, older Tamil women from Sri Lanka. METHOD: Tamil women who had had a mammogram and Tamil women who had never had a mammogram were compared on the following variables: socio-demographics, personal risk estimates for breast cancer, risk-reduction expectancies, beliefs and knowledge about breast cancer and screening recommendations, and acculturation. RESULTS: Groups differed significantly in terms of education, years living in North America, acculturation, and beliefs/knowledge about breast cancer. When education and acculturation were controlled, perceived barriers to mammography were most predictive of mammography utilization. DISCUSSION: Results are discussed with a view to developing culture-appropriate educational campaigns.

Long-term breast cancer survivors: confidentiality, disclosure, effects on work and insurance.

UNLABELLED: As more women are diagnosed with breast cancer, more will survive the illness from a few years to a lifetime. This study sought to determine the experience of Canadian breast cancer survivors with respect to the impact of cancer on confidentiality, work and insurance. METHOD: Women who had survived breast cancer without recurrence for at least 2 years completed a mail survey about the effect of their illness on confidentiality, disclosure, work and insurance. RESULTS: 378 (75.6%) women breast cancer survivors responded to the survey. Their mean age was 61.0+/-10.9 years, and 67.6% had been recurrence free for more than 5 years. The majority of women rated hospital staff, family doctors, family, friends, and support groups at the highest possible level of confidentiality. Over 70% of survivors disclosed their diagnosis to friends, children, siblings, and partners, while over 50% disclosed to work colleagues and supervisors. However, over 40% felt cancer had altered their priorities or progress at work, and 5% were afraid to change jobs in case they became ill again. There was a lack of knowledge about insurance but, of the types of insurance identified, life insurance (17.9%), extended health insurance (7.7%), and private disability insurance (4.4%) were reported to have been refused or offered only with higher premiums as a result of a past diagnosis of breast cancer. DISCUSSION: A substantial minority of women perceived that cancer had substantially affected their personal and work lives. Although most felt their illness confidentiality was well protected and they disclosed freely to family, friends, and work, over 40% of women survivors reported that cancer had affected their work in various ways, and nearly 20% identified insurance problems. It appears that disclosure sometimes results in negative work and insurance experiences. CONCLUSIONS: Health professionals and cancer survivors should engage in education about the potential positive and negative effects of disclosure, and advocacy against cancer-based work and insurance discrimination.

Attributions of cause and recurrence in long-term breast cancer survivors.

UNLABELLED: Women are bombarded with information about the purported causes and the prevention of breast cancer. This survey sought to determine to what women survivors of breast cancer attributed the cause and lack of recurrence of their breast cancer, and whether these views were associated with specific health behaviors. METHODS: Women who had survived breast cancer without recurrence for at least 2 years were surveyed by mail about their views on the cause and lack of recurrence of their breast cancer. They were also asked to estimate their personal risk of cancer recurrence, report on their health behaviors, describe what advice they would give to women newly diagnosed with breast cancer, and what they would change if they had to relive their breast cancer experience. RESULTS: 378 (75.6%) women breast cancer survivors responded who had been recurrence free for a mean of 8.6+/-11.8 years. Women (n=322) who responded to the question about the cause of breast cancer attributed it to stress (42.2%), genetics (26.7%), environment (25.5%), hormones (23.9%), don't know (16.5%), diet (15.5%), and breast trauma (2.8%). Women (n=330) who responded to the question about what prevented cancer recurrence attributed it to positive attitude (60.0%), diet (50.0%), healthy lifestyle (40.3%), exercise (39.4%), stress reduction (27.9%), prayer (26.4%), complementary therapies (11.2%), don't know (5.1 %), luck (3.9%), and tamoxifen (3.9%). Most women felt their recurrence risk was average (44.8%), or below average (35.8%). Some attributions of breast cancer cause or lack of recurrence were associated with specific health behaviors. The majority of women survivors would advise other women with breast cancer to be positive, and if they had to relive their cancer experience they would take more control of their treatment. DISCUSSION: Despite lack of evidence substantiating stress as a cause of breast cancer, many breast cancer survivors believed stress caused their cancer. An even higher percentage of survivors believed their positive attitude had prevented breast cancer recurrence and they would advise other women with breast cancer accordingly. Attribution beliefs clearly affected survivors' health behaviors. CONCLUSION: Healthcare providers should consider the personal beliefs of patients about cancer cause and recurrence, which may be at variance with scientific evidence. This may assist in framing the management of patients in personally meaningful ways, which may increase health behaviors, adherence, satisfaction and quality of life. Whether it will increase survival remains unknown.

Older immigrant Tamil women and their doctors: attitudes toward breast cancer screening.

Cultural beliefs have been hypothesized to be powerful barriers to breast cancer screening in minority women and physician recommendation is consistently reported to be the strongest incentive. This study investigated (1) beliefs regarding breast cancer and (2) the perception of barriers to mammography and clinical breast examination in a sample of immigrant Tamil women, as well as in a sample of primary care physicians. Three focus groups, each consisting of 10 immigrant Tamil women from Sri Lanka aged 50 years or over were conducted and 52 primary care physicians who serve this population completed mailed surveys. The most common barriers to screening reported by the women were (1) lack of understanding of the role of early detection in medical care, (2) religious beliefs and, (3) fear of social stigmatization. Physicians reported the most common barriers to their screening recommendations for this group of women to be (1) women's episodic care, (2) unrelated presenting problems and, (3) women refusing to be screened. Interventions to increase screening in this and other minority groups requires an elaborated understanding of utilization barriers for both women and their doctors.

Men with prostate cancer: influence of psychological factors on informational needs and decision making.

OBJECTIVES: Studies indicate that men with prostate cancer (MPC) adopt passive roles in cancer management; however, increasing public awareness of prostate cancer and advocacy by MPC and their allies suggest otherwise. This study looks at the information that is important to MPC; their preferred participation in decision making; and the influence of sociodemographic, disease, and psychological factors on information needs and decision preferences. METHOD: Consecutive men diagnosed with prostate cancer and attending two tertiary care cancer clinics completed questionnaires on information needs and decision preferences. Questions included demographic information, health and disease status, psychosocial functioning, optimism, and decisional preferences and information preferences for content, type, focus, format, and amount. RESULTS: Questionnaires were completed by 101 MPC. Their mean age was 70 years and most were married and well-educated. Over 70% wanted detailed information at all illness stages focusing on their disease, treatment, survival, self-care, and empowerment. Over 60% of MPC wanted shared decision making with their physician. Psychological variables were found to influence information needs but not involvement in decision making. CONCLUSION: These results represent a challenge to health-care providers for accomodating the informational needs and decision preferences of individual MPC.

Cognitive function in breast cancer patients receiving adjuvant chemotherapy.

PURPOSE: Breast cancer patients receiving chemotherapy have complained of difficulties in their ability to remember, think, and concentrate. This study assessed whether there are differences in cognitive function between breast cancer patients treated with standard-dose adjuvant chemotherapy compared with healthy controls. PATIENTS AND METHODS: The High Sensitivity Cognitive Screen and the Profile of Mood States (POMS) were used to assess cognitive function and mood in a group of 107 women. The women consisted of 31 breast cancer patients receiving adjuvant chemotherapy (group A), 40 breast cancer patients who had completed adjuvant chemotherapy a median of 2 years earlier (group B), and 36 healthy controls (group C). RESULTS: Univariate analysis showed statistically significant differences (P =.009) in overall cognitive function scores between groups A and C, with poorer function in patients receiving adjuvant chemotherapy. These differences remained significant (P =.046) when controlling for age, education level, and menopausal status. More patients had moderate or severe cognitive impairment in groups A and B than in controls (P

Information needs and decisional preferences among women with ovarian cancer.

OBJECTIVES: Studies show that women with cancer want more information about and participation in all aspects of their healthcare including decision-making. However, most studies have been done on women with breast cancer, which often runs a lengthy course and has strong patient-advocacy groups. Little is known about the preferences of women with ovarian cancer, the fifth leading cause of cancer death in women, which often has a more rapidly fatal course. METHODS: This study of women with ovarian cancer investigates what information is most vital for women with ovarian cancer, their preferred role in decision-making, and the influence of sociodemographic, disease-related, and psychological factors. RESULTS: Questionnaires were completed by 105 women with ovarian cancer in two Canadian university hospital oncology clinics. Their mean age was 55.8 +/- 14. 9 years. Most were married, well-educated, and considered their health status to be excellent or good, even though over 60% had metastatic disease. Over 80% of these women wanted detailed information about ovarian cancer during the diagnosis, treatment, and posttreatment stages of their disease. In particular, they wanted information pertaining to the disease, treatment, and self-care issues. Approximately 60% of women preferred to share decision-making with their doctors at every stage of the illness. Psychological variables and disease severity were found to influence information needs and decisional preferences. In general, the more psychologically distressed the women, the more information they wanted about coping strategies and the more serious the illness, the more shared decision-making was desired. CONCLUSION: These results present a challenge to health care providers in more adequately meeting the individual information needs of women with ovarian cancer and involving them to the extent that they wish in the decision-making process.

Development and testing of a visit-specific patient satisfaction questionnaire: the Princess Margaret Hospital Satisfaction With Doctor Questionnaire.

PURPOSE: To develop a psychometrically sound patient-satisfaction-with-physician questionnaire that can be used in an outpatient oncology setting. PATIENTS AND METHODS: The questionnaire was developed by a four-step process involving a total of 277 cancer patients. The item-generation process utilized input from 95 oncology outpatients, three medical researchers, and the relevant literature. Items were tested by 70 of the above patients. Initial item reduction was achieved by input from another eight patients. Factor analysis and validity testing used data derived from a different group of 174 oncology outpatients. Convergent validity was tested by correlating the Princess Margaret Hospital Patient Satisfaction with Doctor Questionnaire (PMH/PSQ-MD) with Rubin et al's Physician subscale of the Patient's Viewpoint Questionnaire (PS-PVQ) and Smith et al's Patient-Doctor Interaction Scale (PDIS). Divergent validity was tested by comparing these questionnaires with Spitzer's quality of life (QOL) questionnaire. RESULTS: The final PMH/PSQ-MD is a 29-item self-administered questionnaire with four response categories and a "does not apply" category. Four domains were confirmed by factor analysis: (1) information exchange, (2) interpersonal skills, (3) empathy, and (4) quality of time. The questionnaire has an overall Cronbach's alpha of 0.97; the values for each domain are, respectively, 0.92, 0.90, 0. 88, and 0.88. The PMH/PSQ-MD correlated well with both the PDIS and the PS-PVQ (P <.001 for both). Divergent validity was confirmed with Spitzer's QOL questionnaire. CONCLUSION: The PMH/PSQ-MD is an outpatient satisfaction questionnaire specific to the patient-physician interaction that has shown excellent internal consistency, is feasible, and has strong support for validity in this oncology population.

When mom's sick: changes in a mother's role and in the family after her diagnosis of cancer.

As social entities, individuals enact roles and carry out responsibilities. Roles are learned and influenced by many social forces. They give meaning and value to life and foster a sense of belonging and contribution. Roles can undergo profound transformation during and after a diagnosis of cancer. In most family situations, the role of mother is a significant caretaking role. However, little research has focused on understanding the alterations that can occur in the mother's role when a woman faces cancer. The purpose of this study was to explore, from a woman's perspective, the experience of being a mother living with life-threatening illness. In-depth interviews were held with 47 mothers diagnosed as having cancer. Their children ranged in age from 1 to 18 years. Content and theme analyses were performed on the transcribed texts. The findings describe the impact of the cancer on the women and their families and how they felt about any changes in their roles as mothers.

Planning psychosocial care for cancer patients: if at first you don't succeed, shift your paradigm.

Concerned with our capacity to bridge the gap between patients' and families' psychosocial needs and the services provided, we developed a psychosocial intake and referral service. This paper will describe the lessons learned in trying to introduce an innovation whose time had not yet come and, after analyzing the outcome, to present a new approach to planning. The service was not approved and, on reflection, eight factors were identified as contributing to the failure of the service to reach fruition. In light of what we learned, we developed a new planning model that reflects planning as a circular, iterative process rather than as a linear process.

The impact of psychosocial need and needs resolution on quality of life in patients with brain tumors.

The diagnosis of cancer of the central nervous system (CNS) is often the diagnosis of an incurable, progressive disease with devastating effects on the physical, psychosocial, and cognitive functioning of patients. Because many of the treatment options are noncurative in nature, issues related to quality and quantity of life become paramount. The purpose of the authors' research was to explore the prevalence of psychosocial needs in this cancer population and to determine whether these needs and their resolution impact on quality of life (QOL). Telephone interviews were conducted with 75 patients in whom primary CNS cancer was diagnosed and who were able to pass the Mini-Mental Health Status Examination. Analysis of results indicated that the majority of patients (97.3%) had at least one concern; concerns over treatment side effects, controlling uncertainty, having a meaningful existence, self and body image, and family concerns were among the five most frequently cited need domains. Most patients (91.8%) received help. However, 75.3% reported needing additional help. The number of needs reported and the severity of fatigue most significantly impacted QOL. The study identified the needs and experiences of the patient with CNS cancer. Quality of life and needs assessment information can be used to screen patients for distress and to measure the outcome of medical and psychosocial care and ultimately to ease the burden of illness.

Identifying the psychosocial needs of individuals with cancer.

The diagnosis and treatment of cancer creates psychosocial needs that patients often find difficult to resolve. Because most need assessments do not reach beyond enumerating needs to examine barriers to needs resolution, existing social supports or patients' service preferences, we set out to develop a needs assessment inventory to meet these objectives. The first step was to identify need categories using a qualitative methodology. The aims of the research presented in this paper are to: (a) compare patients' and professional caregivers' identification of patients' psychosocial needs, (b) establish categories of psychosocial needs, and (c) verify the categories resulting from the analysis of the data. Twenty-seven need categories were identified. There was a lack of congruency between patients and hospital caregivers and between caregivers at the two cancer centres in the frequencies with which the need categories were cited. The incongruence underscores the importance of gathering information from more than one perspective.

Identifying the nonmedical concerns of patients with ocular melanoma.

1. The task of enhancing patients' quality of life begins with identifying their needs and concerns. This process requires a knowledge base of the needs, problems, and barriers patients face as they struggle with the physical, psychological, and social sequelae of cancer. 2. To enhance knowledge of the psychosocial consequences of ocular melanoma and to facilitate supportive care planning, a study was initiated to identify patients' needs arising from the symptom management and nonmedical concerns of these patients, barriers to resolving these needs, and patients' service preferences. 3. The results indicate that the expressed needs inventory and the scales measuring unexpressed needs represent a valid and reliable approach to needs assessment, and that this approach is able to identify the needs resulting from patients' symptom management and nonmedical concerns.

A psychosocial summary flow sheet: facilitating the coordination of care, enhancing the quality of care.

To improve the continuity of care and to better coordinate psychosocial care, the Psychosocial Oncology Program at the Ontario Cancer Institute/Princess Margaret Hospital developed a psychosocial summary flow sheet. The objectives of the pilot project evaluation were: (a) to examine preparation to use the flow sheet prior to its implementation, (b) to gather information on how staff used the flow sheet, and (c) to determine how its design and implementation could be improved. The charts of all the patients on the units participating in the pilot project were examined and a questionnaire was sent to all staff involved with patient care on these units. The results of the evaluation indicated that the psychosocial summary flow sheet was perceived to be an asset to psychosocial care and could be implemented hospital-wide. Based on the evaluation, a number of changes were made in its design and a strategy for hospital-wide implementation was planned.

The eating patterns and problems of homeless women.

While inadequate nutrition has been identified as a factor affecting the health of the homeless, there has been little research to identify the extent to which inadequate nutrition is a problem. The goal of this paper is to document the eating patterns and problems of single homeless women and to locate the determinants of nutritional adequacy in their diets. Our findings are based on a random sample of 84 single homeless women using hostels and drop-in centers. For 85.5% of the women food was provided primarily by hostels and supplemented by the drop-ins. When their daily food intake was compared to the Canada's Food Guide recommendations, the average number of servings in each of the four food groups was below the recommended. The women in our sample indicated that their problems with food consumption were rooted in their poverty and further analysis indicated that the provision of food by social agencies was an important factor in the nutritional adequacy of their diets. Hostels and drop-in centers not only provide shelter, they have also assumed most of the responsibility for feeding the homeless. It is their poverty which burdens these women and structures their eating patterns.

Mapping practice: problem solving in clinical social work.

This working guide to solving problems uses diagrams to illustrate a five-phase process that social workers can employ to structure and monitor their practice. It specifies the stages and tasks of the process yet allows for flexibility in choosing interventions.