Psychosocial Characteristics of Adult Daughters of Breast Cancer Patients: Comparison of Clinic and Community Caregivers Samples.

OBJECTIVE: The long-term psychosocial impact of adult daughters caring for their mothers with breast cancer has been recognized but understudied. The objectives of this study were to characterize the psychosocial functioning of women who served as informal caregivers during their mothers. treatment for breast cancer in two distinct samples, community and high risk clinic, and to determine differences in psychosocial functioning between the two samples. METHODS: Using a cross-sectional design, a sample of mostly married, Caucasian and college educated women (N = 59) were administered a battery of questionnaires assessing socio-demographic and psychosocial factors (i.e. coping, caregiving tasks and difficulty, social support, spirituality, mental distress, depressive symptoms). RESULTS: Using descriptive analysis, chi-square and T tests, results demonstrated significant differences between the two samples in time since caregiving, with the community sample reporting few years since the caregiving episode (e.g. 2.1 versus 15.1 years); coping strategies, with the clinic sample reporting higher scores on active coping, behavioral disengagement, planning, and self-blame; support type care tasks difficulty, with the clinic sample reporting higher scores on emotional support and tangible support, and all domains of spirituality (e.g. peace, meaning, faith), with higher levels being reported by the community sample. Although participants did not exhibit clinically significant levels of emotional distress, almost 25% of the community sample and 10% of the clinic sample had clinically significant depressive symptoms. CONCLUSIONS: Findings underscore the need for interventions tailored for caregivers to consider the unique psychosocial characteristics of caregivers across settings.

Quality of life of family caregivers 5 years after a relative's cancer diagnosis: follow-up of the national quality of life survey for caregivers.

BACKGROUND: Although cancer has been considered as a chronic disease for those diagnosed, the long-term impact of cancer on the family caregivers' quality of life (QOL) remains unknown. Thus, the current study aimed: (a) to characterize family caregivers of cancer survivors, (b) to describe the multidimensional aspects of QOL of family caregivers of cancer survivors, and (c) to identify demographic and caregiving experience factors that may play significant roles in the caregivers' QOL around 5 years after the relative's initial diagnosis. Methods. A total of 1218 caregivers participated in the 5-year follow-up nationwide QOL Survey for Caregivers. Demographics and caregiving experiences were measured 2 years post-diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at 5 years post-diagnosis. RESULTS: Three groups of caregivers were identified: former caregivers due to the recipients being in remission, former caregivers whose recipients were deceased, and current caregivers. Current caregivers reported worst levels of QOL. Bereaved caregivers reported lower levels of psychological and spiritual adjustment than former caregivers whose recipients were in remission. In addition, caregivers' age and stress were consistent predictors of QOL across three caregiver groups at 5 years post-diagnosis. CONCLUSIONS: The findings help to increase evidence-based awareness of the long-term impact of cancer on the family caregivers' QOL. Findings also have implications for developing programs, whereby family caregivers in the various phases of caregivership will benefit by improving their QOL.

Dyadic effects of fear of recurrence on the quality of life of cancer survivors and their caregivers.

BACKGROUND: Although the 5 years cancer survival rate has increased to 66%, fear of cancer recurrence (FOR) continues to be a major concern for both cancer survivors and their family caregivers. It remains unknown, however, to what extent cancer severity is associated with the level of FOR reported by each individual in the survivor-caregiver dyad, which, in turn, is also associated with their quality of life (QOL). METHOD: A total of 455 cancer survivor-caregiver dyads, who participated in national surveys targeting 2 years post-diagnosis, provided complete data for variables studied. RESULTS: Results of the Actor Partner Interdependence Model suggested that higher cancer severity was related to greater levels of FOR among both survivors and caregivers, which, in turn, was related to poorer QOL. Caregivers' FOR was related to survivors' poorer physical health. The associations between FOR and QOL were significant, above and beyond those of general anxiety. CONCLUSION: Findings suggest that as expected, cancer severity was significantly related to individuals' FOR, which, in turn, played a key role in their mental health. Caregivers' FOR was also related to survivors' physical health, which suggests that programs aimed to manage FOR effectively should be provided not only to survivors but also caregivers, thereby improving the QOL of each person.

Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers.

OBJECTIVES: There is evidence that cancer generates existential and spiritual concerns for both survivors and caregivers, and that the survivor's spiritual well-being (SWB) is related to his/her own quality of life (QOL). Yet the degree to which the SWB of each member of the couple has an independent association with the partner's QOL is unknown. Thus, this study examined individual and dyadic associations of SWB with the QOL of couples dealing with cancer. METHODS: A total of 361 married survivor-caregiver dyads participating in the American Cancer Society's Study of Cancer Survivors-I and Quality of Life Survey for Caregivers provided complete data for the study variables. SWB was measured using 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (assessing faith, meaning, and peace) and QOL was measured using Medical Outcomes Study 36-Item Short Form Health Survey. RESULTS: Actor and Partner Interdependence Model analyses revealed that each person's SWB was the strongest correlate of his or her own mental health (higher SWB, better mental health). Each person's SWB was also positively related to his or her partner's physical health. CONCLUSIONS: Results suggest that the ability to find meaning and peace may be an important part of overall well-being during the cancer experience for both survivors and caregivers. Interventions designed to assist survivors and caregivers to enhance their ability to find meaning and peace in the cancer experience may help them improve mental health of their own and the physical health of partners when they are dealing with cancer beyond the initial phase of the illness trajectory.

Quality of life of family caregivers at 2 years after a relative's cancer diagnosis.

PURPOSE: Although a growing body of research has documented the quality of life (QOL) of cancer survivors beyond the initial phase of the survivorship, similar knowledge about family caregivers of cancer survivors remains limited. Thus, the current study aimed: (a) to characterize the multidimensional aspects of the QOL of family caregivers of cancer survivors at 2 years after the diagnosis and (b) to predict certain aspects of caregivers' QOL by their demographic and caregiving characteristics. METHODS: A total of 1635 caregivers of cancer survivors participated in the nationwide Quality of Life Survey for Caregivers. Multidimensional aspects of QOL were assessed, including mental and physical health, as well as psychological adjustment and spirituality at 2 years post-diagnosis of their relatives' cancer. RESULTS: Family caregivers reported normal levels of QOL after 2 years post-diagnosis, except that they were more likely to experience increased awareness of spirituality than do individuals who personally experience a chronic illness. In addition, caregivers' age and income and care-recipients' poor mental and physical functioning were significant predictors of their QOL at 2 years post-diagnosis. CONCLUSIONS: The findings suggest that younger, relatively poor caregivers who are providing care to relatives with poor mental and physical functioning may benefit from interventions to help in their spirituality and psychological and physical adjustment, 2 years after the initial cancer diagnosis. In addition, older, relatively poor caregivers may benefit from programs to reduce the physical burden of caregiving. These findings have implications for advancing public health research and practice.

Needs assessment of family caregivers of cancer survivors: three cohorts comparison.

PURPOSE/BACKGROUND: Caregivers' quality of life (QOL) may be maximized when the caregivers' needs in the context of cancer care are met. Therefore, determining what needs are not being satisfied for family caregivers should be the first step in the development of programs designed to enhance caregivers' QOL. METHOD: The 28-item Needs Assessment of Family Caregivers-Cancer (NAFC-C) scale was developed and validated with caregivers at three different survivorship phases: at 2 months (n=162), 2 years (n=896), and 5 years (n=608) post-diagnosis. RESULTS: The NAFC-C helped to identify caregivers whose needs were less likely to be met, based on their age and ethnicity. Furthermore, the extent to which caregivers' psychosocial needs were not being met was a consistent and strong predictor of poor mental health across all phases of survivorship, beyond the effects of a host of demographic characteristics. CONCLUSION: Findings suggest that interventions designed to help caregivers manage their own emotional distress as well as the survivors' distress, find meaning in the cancer caregiving experience, and foster supportive familial relationship will benefit caregivers by improving their QOL, not only during the time of diagnosis and treatment but years after.

Sampling in population-based cancer caregivers research.

BACKGROUND: Awareness that cancer impacts not only the person with the disease but also the family has increased, yet existing data provide limited information, primarily because of reliance on small geographically restricted samples. The current study used population-based sampling to develop a formula to compute the probability of survivors completing a survivor survey and nominating their family caregivers. METHODS: Eleven SEER/NPCR state cancer registries participated in the American Cancer Society Study of Cancer Survivors survey, providing information about the survivors, including their age, race/ethnicity, gender, type of cancer, and stage of cancer. A total of 19,294 cancer survivors met the inclusion criteria (>/=18 years old and diagnosed with one of the 10 common cancers). RESULTS: Approximately 30% of survivors identified from state cancer registries completed the survivor survey, of whom 42% nominated a caregiver. Logistic regression analysis revealed that middle-aged, female, or non-black survivors and survivors diagnosed with breast or ovarian cancer were more likely to complete the survey and nominate a caregiver, whereas survivors with bladder or lung cancer and survivors with advanced-stage cancer were less likely to complete the survey and nominate a caregiver. CONCLUSIONS: Using the formula based on the logistic regression analysis results, a number of certain groups of survivors to be recruited from state registry can be calculated in order to have a present number of caregivers to contact for participation into a caregiver study. This is practical and valuable information, which fosters research that uses state cancer registries and increases the generalizability of findings to multiple types of cancer and different stages of cancer.

Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers.

BACKGROUND AND PURPOSE: Although evidence suggests that survivors and spousal caregivers tend to experience somewhat similar levels of distress and that the survivor's distress affects his/her own quality of life, the degree to which each person's distress has an independent effect on their partner's quality of life is unknown. Thus, this study aimed to examine the dyadic effects of psychological distress on the quality of life of couples dealing with cancer. METHODS: A total of 168 married survivor-caregiver dyads participating in the American Cancer Society's Study of Cancer Survivors-I and Quality of Life Survey for Caregivers provided complete data for study variables. Participating survivors were diagnosed with either breast or prostate cancer approximately 2 years prior to participating in the study. RESULTS: Using the Actor Partner Interdependence Model, results revealed that although each person's psychological distress is the strongest predictor of their own quality of life, partner's distress and (dis)similarity in distress of the couple also play significant roles in one's quality of life. In addition, the adverse effect of having a partner who is less emotionally resourceful was especially pronounced on men's physical health. CONCLUSIONS: Our systematic investigation provided valuable evidence for identifying the subgroup of cancer survivors and their spouses who are vulnerable to poor quality of life due to their mutual psychological distress. These findings suggest that couples may benefit from interventions that enhance their ability to manage psychological distress, particularly the wife's, which may improve the mental and physical health of both partners when they are dealing with cancer.

Effects of psychological distress on quality of life of adult daughters and their mothers with cancer.

INTRODUCTION: As the population continues to age, adult daughters are more likely to be involved in caregiving. Given the fact that sharing emotional experiences is common in female relationships, (dis)similarity between mothers with cancer and their adult caregiving daughters is expected. However, the extent to which the (dis)similarity in psychological distress influences the quality of life of each person remains unknown. METHOD: This study aims at addressing this concern, using a total of 98 mother-daughter dyads participating in the American Cancer Society's Study of Cancer Survivors-I and Quality of Life Survey for Caregivers. RESULTS: Using the Actor Partner Interdependence Model, the results showed that although each person's psychological distress is the strongest predictor of their own quality of life, a mother's distress also plays a significant role in the daughter's quality of life. Specifically, when mothers experienced greater levels of psychological distress, the daughters reported better mental health but poorer physical health. CONCLUSIONS: Our findings on the disproportionately strong association between psychological distress of mothers with cancer and their adult caregiving daughters' quality of life suggest that caregiving daughters may benefit from programs designed to assist them to cope better with their mothers' psychological distress when both are living with cancer.

Family caregivers and guilt in the context of cancer care.

BACKGROUND: Guilt as a key emotional phenomenon in the cancer-caregiving experience is an understudied issue. OBJECTIVE: The purpose of this study is to identify demographic characteristics of cancer caregivers and care-related stress factors that are associated with their feelings of caregiver guilt, as well as to explore the effect of caregiver guilt on their adjustment outcomes. METHOD: A total of 739 caregivers of cancer survivors completed a survey (66.7% response rate), of which 635 provided complete data for the measures in this study. RESULTS: Hierarchical regression analyses revealed that certain caregiver demographics (i.e., younger age, adult offspring, employed) and care-related stress factors (i.e., greater impact on schedule, less perceived caregiving competence, poorer overall health of the care-recipient) were significantly related to caregiver guilt. Higher levels of psychological distress and poorer mental, social, and physical functioning were significantly associated with caregiver guilt, above and beyond the variance accounted for by the covariates. CONCLUSION: Results suggest that caregiver guilt compromises the psychosocial and somatic adjustment of cancer caregivers. Guilt may be a cardinal feature of the caregiving experience, and to fully understand the implications of this complex phenomenon, more research is needed.

Cancer caregivers' quality of life: effects of gender, relationship, and appraisal.

The objective of this study was to examine caregivers' gender and relationship to the cancer survivor as plausible predictors of their appraisals of providing care, and to further examine the association of the caregivers' appraisal with their own quality of life. Of the 739 caregivers who participated in the American Cancer Society's Quality of Life Survey for Caregivers, 627 were either the spouse or the offspring of a cancer survivor. Of those, 448 who provided complete information on study variables were included in this study. Multivariate analyses revealed that male caregivers were more likely to appraise the caregiving experience as boosting their self-esteem (positive) than female caregivers, whereas adult daughters appraised the experience as stressful (negative), and sons appraised the experience as the least stressful. More importantly, caregivers' esteem and caregiving stress were strong predictors of the caregivers' quality of life. These effects were significant after controlling for potentially confounding variables. The findings suggest that cancer caregivers may benefit from programs designed to assist them in viewing their involvement in cancer care as meaningful and as a personal growth experience, as well as helping them to seek support to minimize their caregiving stress.

Psychological distress of female cancer caregivers: effects of type of cancer and caregivers' spirituality.

INTRODUCTION: This study examined the effects of the survivor's cancer type (gender-specific vs nongender-specific) and the female caregiver's spirituality and caregiving stress on the caregiver's psychological distress. Cancer caregivers, who were nominated by cancer survivors, participated in a nationwide quality-of-life survey with 252 caregivers providing complete data for the variables. PATIENTS AND METHODS: Breast and ovarian cancer were categorized as gender-specific types of cancer (GTC+), whereas kidney, lung, non-Hodgkin's lymphoma (NHL), and skin melanoma cancers were GTC-. Spirituality, caregiving stress, and psychological distress were measured using the functional assessment of chronic illness therapy--spiritual well-being, stress overload subscale, and profile of mood states--short form, respectively. RESULTS AND DISCUSSION: Hierarchical regression analyses revealed that female caregivers whose care recipient was diagnosed with a nongender specific type of cancer (GTC- group) reported higher psychological distress than did the GTC+ group. The GTC- group also reported lower spirituality and higher caregiving stress related to higher psychological distress than did the GTC+ group. In addition, the beneficial effect of spirituality on reducing psychological distress was more pronounced among the GTC- group or when caregiving stress increased. CONCLUSIONS: Our findings suggest that female caregivers of survivors with a nongender-specific cancer may benefit from programs designed to reduce their psychological distress, and caregivers who are low in spirituality need help to derive faith and meaning in the context of cancer care.

Gender differences in caregiving stress among caregivers of cancer survivors.

Despite a growing body of research on male caregivers, limited information is available on male caregivers of cancer survivors. Furthermore, few studies have examined the unique contribution of caregiver esteem as well as care-recipient's functional status as potential mediators of the link between gender and caregiving stress. Thus, the present study examines how the caregiver's perception of providing care to a spouse with cancer differs by gender. The proposed mediators, caregiver's esteem and care-recipient's psychosocial and physical functioning, were tested simultaneously, utilizing structural equation modeling. Results revealed that both caregiver's esteem and care-recipient's psychosocial functioning were significant mediators, but in different directions. Specifically, husband caregivers reported higher caregiver's esteem, which resulted in reporting less stress from providing care to their wife with cancer. On the other hand, when husband caregivers provided care to their wife with poorer psychosocial functioning, they reported greater stress from caregiving. Husband caregivers will benefit from programs designed to educate them to effectively assist their wife's psychosocial adjustment to cancer by reducing their stress from providing care.

Psychological adjustment of cancer caregivers with multiple roles.

Guided by the role strain and the role enhancement theories, this study examined the effect of caregivers' multiple roles, such as being employed and taking care of minors in their household, on their psychological adjustment. Of the caregivers who completed the American Cancer Society's Quality of Life Survey for Caregivers, 457 caregivers who were middle-aged (18-64) and provided complete data for the study variables were included in the analyses. The indicators of the outcome variables, namely, the levels of the caregivers' psychological adjustment, were cancer caregiving stress, management of meaning out of providing care, and negative and positive affect. Multivariate general linear modeling analyses revealed that employed caregivers who were also taking care of children reported higher levels of caregiving stress and negative affect. In contrast, employed caregivers who were not taking care of children reported greater levels of managing meaning of caregiving experience. The findings provide partial support for the role strain theory, that the more social roles a caregiver carries out, the more likely the caregiver is to experience stress and negative affect. The findings also suggest that when providing care for cancer survivors, caregivers may benefit from being employed. These findings have significant implications for developing targeted programs to reduce the psychological distress of cancer caregivers with multiple roles and to assist them in recognizing their caregiving experience as meaningful.

Oncology professionals and patient requests for cancer support services.

OBJECTIVE: To examine the kinds of psychosocial support services that cancer patients most often request across a multidisciplinary sample of currently practicing U.S. oncological health care professionals (OHCPs) representative of a typical cancer care team. PARTICIPANTS: Primary data collection. A randomly selected sample of 1,180 OHCPs (44% physicians, 24% nurses, 32% social workers) who were active members of their respective oncological associations completed a brief four-page mailed survey during the spring of 2001. METHODS: Cross-sectional, descriptive study. Descriptive statistics were computed for all study variables. ANOVA procedures were used to examine demographic difference between respondents and non-respondents. Frequencies were calculated for patient inquires for cancer support services inquiries, and logistic regression was used to evaluate professional group differences on inquiries. Chi-square statistics were used to test for significant differences between professional groups. RESULTS: Approximately 94% of OHCPs were asked about cancer-related support services by their patients. Quantitative data indicated that information and education about cancer (72%), support groups (65%), and hospice referral (52%) were paramount among patient concerns. Qualitatively, comments about transportation, lodging during treatment, and alternative medicine reflected the general sentiment that basic needs and opportunities for options may still be unmet. Patient inquiries for services varied significantly by professional group (p<.001). CONCLUSION: This information reflects the need for a multidisciplinary perspective and will be useful for planning patient-based cancer education and support initiatives, refining existing programs, and targeting materials to specific oncological professionals.

Healthcare professionals' awareness of cancer support services.

PURPOSE: This study was conducted to provide baseline information about the awareness, attitude, and willingness of oncology healthcare providers (HCPs) to recommend quality-of-life cancer education and support services to their patients. DESCRIPTION OF STUDY: A brief survey questionnaire was mailed to a random sample of 2000 physicians, nurses, and social workers who were active members of their respective oncology associations. RESULTS: A total of 1241 questionnaires were returned (62% reply rate), resulting in a final sample of 1180 HCPs (61% response rate). Among HCPs who referred patients to cancer organizations, the American Cancer Society (ACS; 83%), the National Cancer Institute (NCI; 55%), and the Leukemia and Lymphoma Society ([formerly Leukemia Society of America] 42%) ranked at the top. More than 70% of HCPs indicated that they had heard about specific ACS programs and services or the NCI information hotline. Less than 60% of HCPs recommended or thought these same services were helpful to patients. Awareness, referrals, and attitudes toward cancer support services among HCPs were significantly related (P <.001). Qualitative comments qualified quantitative results. CLINICAL IMPLICATIONS: Although a surprising number of HCPs were aware of support services, fewer recommended or reported satisfaction with these services. HCPs' referrals and attitudes toward cancer psychosocial support services may be improved by assembling a concise directory of locally available resources, directing this information to HCPs who refer directly to cancer organizations, improving collaboration between agencies, increasing staff support, and targeting particular services in specific areas of the country for program monitoring and development.