Knowledge, attitudes, and beliefs of Arab-American women regarding inherited cancer risk.

The increasing incidence of breast cancer in the Arab world, coupled with a relatively early age of onset, raises concern for the presence of hereditary risk factors in this population. However, due to potential structural and cultural barriers, Arab Americans make up the smallest percentage of individuals tested for Hereditary Breast and Ovarian Cancer Syndrome in the United States. The objectives of this qualitative pilot focus group of 13 Arab-American women were to explore attitudes, knowledge and beliefs regarding hereditary breast cancer in the Arab-American community in metropolitan Detroit, identify barriers that would prevent women from seeking hereditary cancer screening/testing and determine who women would talk to about inherited cancer. Results indicated that cultural beliefs and personal experiences with cancer influenced the women's perspectives on hereditary cancer risk. A high level of secrecy about cancer within Arab-American families was present, which may prevent accurate risk assessment and referral for genetic services. Other identified barriers that may influence hereditary risk assessment included stigma, fears and misconceptions of cancer. While these barriers were present, participants also expressed a strong need for education and tailored cancer risk information for their community.

Predictors of decision making in families at risk for inherited breast/ovarian cancer.

OBJECTIVE: The purpose of this study was to identify factors associated with decision making about inherited cancer risk information within families and determine the interdependence between survivors' and relatives' decision making. DESIGN: A descriptive, cross-sectional design using a population-based sample of 146 dyads (N = 292) was used. Analyses included multilevel modeling using the Actor-Partner-Interdependence Model. MAIN OUTCOME MEASURES: Decision making regarding inherited cancer risk information. RESULTS: Several individual and family factors contributed toward survivors' and female relatives' decision making about inherited cancer risk information. Individual factors included the individual's perceptions of their family communication and cancer history. Family factors included survivors' and family members' age, communication and coping style that influenced the decision making of the other member of the dyad. Cancer worries and a monitoring coping style affected both seeking and avoiding decision making for survivors and relatives. CONCLUSIONS: In view of the importance of genetic information upon family health outcomes, it is critical to address both individual and family factors that may influence decision making about cancer risk information and surveillance options for all members within the family.

Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer.

While families at increased risk for familial breast/ovarian cancer continue to overestimate their cancer risk with increased cancer worries about the future, few studies have examined factors that affect inherited cancer risk perception and cancer worries in both survivors and unaffected female relatives. The purpose of this study was to examine variables that may affect cancer worries and risk perceptions from a family-based perspective in a racially diverse, community-based, random sample of 146 dyads consisting of adult female breast and/or ovarian cancer survivors and their unaffected female relatives (N=292). Results indicated that coping style, self-efficacy, partner's income, family role relationship, and cancer risk perception were significant contributors to the survivors' and their unaffected relatives' cancer worries. Significant variables for perception of cancer risk for both survivors and relatives included income, race, family history of cancer, and cancer worries. Relatives had a higher perception of cancer risk, whereas survivors had more cancer worries. Additionally, the level of cancer worries reported by one member of the dyad was related to the amount of worries reported by the other. The results from this study underscore the importance of clinicians addressing concerns of both affected and unaffected members of families at increased risk of cancer to assist them in managing cancer worries and having realistic risk appraisals to make informed decisions about their own and their family's health surveillance options.

A population-based study of the quality of life of cancer survivors and their family caregivers.

Although survival rates for all cancers continue to increase, few studies have examined the quality of life of both cancer survivors and family caregivers during the survivorship period after treatment has ended. Information is lacking on the stressors, resources, meaning, and quality of life reported by survivors and family caregivers and the interrelationship between survivors' and family caregivers' quality of life. A stratified, random sample of 123 cancer survivors and 123 family caregivers (N = 246) were interviewed in an exploratory, cross-sectional design 1-6 years after cancer treatment had ended. Approximately half (N = 62) of the dyads were white and half (N = 61) were African American. Results indicated that cancer survivors reported significantly higher quality of life, less fear of cancer recurrence, and more support than their family caregivers. The strongest predictors for cancer survivors' quality of life were family stressors, social support, meaning of the illness, and employment status, whereas the strongest predictors for family caregivers' quality of life were fear of recurrence and social support. Both the survivor's and family caregiver's quality of life independently contributed to the other's quality of life. Findings from this study suggest the importance of including both survivors and family caregivers in programs of care.

Quality of life of women with recurrent breast cancer and their family members.

PURPOSE: Little information is available about the effects of recurrent breast cancer on the quality of life of women and their family members. The present study assessed patients' and family members' quality of life within 1 month after recurrence, and effects of multiple factors on quality-of-life scores. PATIENTS AND METHODS: Patient/family member dyads (N = 189) participated in this study. A stress-appraisal model guided selection of person factors, social/family factors, illness-related factors, appraisal factors, and quality of life, measured with psychometrically sound instruments. Quality of life was measured with both generic (Medical Outcomes Study SF-36) and cancer-specific (Functional Assessment of Cancer Therapy) scales. RESULTS: Patients reported significant impairments in physical, functional, and emotional well-being. Family members reported significant impairments in their own emotional well-being. Structural equation modeling revealed that self-efficacy, social support, and family hardiness had positive effects on quality of life, whereas symptom distress, concerns, hopelessness, and negative appraisal of illness or caregiving had detrimental effects. Study variables accounted for a sizable amount of variance in patients' and family members' physical and mental dimensions of quality of life (72% to 81%). Contrary to findings observed in studies of newly diagnosed breast cancer patients and spouses, little relationship was found between recurrent patients' and family members' quality of life. CONCLUSION: Women with recurrent breast cancer are in need of programs to assist them with the severe effects of the disease on their quality of life. Programs need to include family members to help counteract the negative effects of the recurrent disease on their mental health, and to enable them to continue as effective caregivers.

Predictors of adjustment and growth in women with recurrent ovarian cancer.

PURPOSE/OBJECTIVES: To analyze predictors of adjustment and growth in women who had experienced recurrent ovarian cancer using components of the Resiliency Model of Family Stress, Adjustment, and Adaptation as a conceptual framework. DESIGN: Cross-sectional. SETTING: Participants were recruited from national cancer advocacy groups. SAMPLE: 60 married or partnered women with recurrent ovarian cancer. METHODS: Participants completed an online or paper survey. MAIN RESEARCH VARIABLES: Independent variables included demographic and illness variables and meaning of illness. Outcome variables were psychological adjustment and post-traumatic growth. FINDINGS: A model of five predictor variables (younger age, fewer years in the relationship, poorer performance status, greater symptom distress, and more negative meaning) accounted for 64% of the variance in adjustment but did not predict post-traumatic growth. CONCLUSIONS: This study supports the use of a model of adjustment that includes demographic, illness, and appraisal variables for women with recurrent ovarian cancer. Symptom distress and poorer performance status were the most significant predictors of adjustment. Younger age and fewer years in the relationship also predicted poorer adjustment. IMPLICATIONS FOR NURSING: Nurses have the knowledge and skills to influence the predictors of adjustment to recurrent ovarian cancer, particularly symptom distress and poor performance status. Nurses who recognize the predictors of poorer adjustment can anticipate problems and intervene to improve adjustment for women.

Concerns and recommendations regarding inherited cancer risk: the perspectives of survivors and female relatives.

BACKGROUND: Little research is available comparing differences in cancer risk perceptions between cancer survivors and family members at risk for hereditary breast/ovarian cancer. METHODS: Qualitative focus groups with survivor-female relative dyads (N = 39) were conducted. RESULTS: Important differences exist between the concerns of survivors and family members relevant to their cancer risk. Survivors focused on their own concerns from a personal perspective, whereas family members focused on the survivors' health and tended to suppress their own fears of cancer. Specific recommendations for inclusion of family members in cancer risk education are provided. CONCLUSIONS: Addressing family member differences is critical to tailor specific risk information inclusive of the entire family.

A family-based model to predict fear of recurrence for cancer survivors and their caregivers.

Although fear of cancer recurrence is a great concern among survivors and their families, few studies have examined predictors of fear of recurrence. The purpose of this study was to identify factors associated with fear of recurrence in a population-based sample (N = 246) and determine if survivors and family caregivers influenced one another's fear of recurrence. A family framework guided the study and analyses included multilevel modeling using the Actor-Partner Interdependence Model. Results indicated that survivors and family caregivers influenced each other's fear of recurrence and that caregivers had significantly more fear of recurrence than survivors. More family stressors, less positive meaning of the illness, and age were related to elevated fear of cancer recurrence for both survivors and caregivers.

Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups.

Dramatic advances in cancer genetics and identification of germline mutations in cancer genes such as BRCA1 and BRCA2 have led to new options in genetic risk assessment for families with histories of breast and ovarian cancer. However, little research has been carried out with individuals and their families regarding how cancer risk information is communicated within families and factors that may affect individuals and family members making informed decisions about their health. This study explored participants' knowledge of cancer risk, their perceptions and concerns regarding inherited cancer risk information, family communication patterns, and factors that may affect their decision to learn about inherited cancer risk in their families. Nine focus groups of family dyads were conducted (N=39) consisting of breast or ovarian cancer patients and close female relatives. All transcribed interviews were analyzed using qualitative software. Key findings showed diversity in how families communicated and made decisions about their health, persistent worry for their families, lack of knowledge about inherited cancer, vigilance in watching their health, and barriers present in communicating about genetic risk. Results from this study support inclusion of family members in addressing inherited cancer risk information and contextual family factors critical to consider in potentially high risk families.

Comparisons between cancer survivors and family members on meaning of the illness and family quality of life.

PURPOSE/OBJECTIVES: To explore the meaning of the illness to the family and family quality of life (QOL) for survivors and family members and to describe similarities and differences between survivors' and family members' meaning of the illness and family QOL. RESEARCH APPROACH: Descriptive, qualitative. SETTING: Homes of survivors and family members in an urban metropolitan area in the midwestern United States. PARTICIPANTS: A sample of 123 Caucasian and African American cancer survivors, one to six years after treatment had ended, and their family members (N = 246). Four cancer diagnoses (i.e., breast, colon, prostate, and uterine) were represented. METHODOLOGIC APPROACH: Two open-ended questions derived from a family model of survivorship. Content analysis was used to analyze the responses. MAIN RESEARCH VARIABLES: Meaning of the illness and family QOL. FINDINGS: The positive dimensions of survivorship in meaning of the illness and family QOL were seen for patients and family members, although long-term stressors also were reported. More similarities than differences in meaning and QOL were noted between survivors and family members. CONCLUSIONS: Patients' and family members' perspectives of the meaning of the illness and family QOL are important to assess during survivorship to address both individual- and family-level perspectives in cancer care. IMPLICATIONS FOR NURSING: Nurses should offer opportunities for patients and family members to search for positive meaning in the cancer illness, develop strategies to handle stressors that are present during survivorship, and enhance family strengths and resources to promote family QOL.

A family-based program of care for women with recurrent breast cancer and their family members.

PURPOSE/OBJECTIVES: To evaluate the FOCUS Program (family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management), a family-based program of care for women with recurrent breast cancer and their family caregivers. DATA SOURCES: Randomized clinical trial. SETTING: Midwest region of the United States. DATA SYNTHESIS: The family-based program of care consisted of five components: family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. The program was delivered in three home visits and two follow-up phone calls over a five-month period of time. CONCLUSIONS: Patients with recurrent breast cancer and their family members reported high satisfaction with the FOCUS Program. Although the FOCUS Program had a number of strengths, limitations of the program also were identified that need to be addressed in future family-based interventions. IMPLICATIONS FOR NURSING: A need exists for family-based programs of care that enable both patients and their family members to manage the multiple demands associated with recurrent breast cancer.