Grief and risk of depression in context: the emotional outcomes of bereaved cancer caregivers.

We investigated the relationships of grief and depression to cancer caregiving in early bereavement. We began with three expectations: (a) each outcome would reflect different situational predictors, (b) grief would be more directly related to such predictors, and (c) components of grief would relate differently to the caregiving context and depressed mood. We conducted telephone interviews with family caregivers of incurable cancer patients from two hospitals. A total of 199 family caregivers were interviewed at the time of the patient's diagnosis and reinterviewed 3 months after the patient's death. Results showed grief severity was predicted by caregiving circumstances, but bereavement depressed mood was largely unrelated to caregiving. Grief was the main predictor of depressed mood and mediated almost all other effects. We conclude that while grief may trigger depression, the dissimilar connection to context means that the two emotional states should not be equated based purely on similarity of expression.

Relationships and emotional wellbeing among African American and White advanced cancer caregivers.

OBJECTIVE: Advanced cancer family caregivers who have good relationships with other family members and with patient's health care providers (PHCPs) have less emotional distress than caregivers with poor relationships. Given a history of different experiences in medical settings among Whites and African Americans, we examined moderation effects by race. METHODS: Baseline data from an ongoing study were collected via telephone interviews with 397 family caregivers of advanced cancer patients at two cancer clinics. Depressed mood and anxiety were measured with the 14-item Profile of Mood States. RESULTS: Caregivers reporting good relationships with family (p<.001) and PHCPs (p<.001) had lower anxiety and less depressed mood (family, p<.01; PHCP, p<.001). Caregiver race moderated relationship quality: Whites with good PHCP relationships felt less depressed mood (p<.01) and anxiety (p<.01). African Americans with good family relationships showed less depressed mood (p<.05), but no association with anxiety. CONCLUSION: Good relationships are important for caregivers, but PHCPs may have more influence on the wellbeing of White than of African American caregivers. PRACTICE IMPLICATIONS: Developing relationships with caregivers of advanced cancer patients may improve wellbeing for caregivers. In addition, creating strategies to support family relationships may be a useful intervention, especially for African American advanced cancer caregivers.

Primary care physicians' involvement in the cancer care of older long-term survivors.

OBJECTIVE: This study investigated survivors' reports of primary care physicians' (PCPs) involvement in three key cancer survivorship activities: discussing cancer history, whether the PCP initiated discussions, and whether discussions led to tests/procedures. METHOD: The sample included 215 older survivors whose health care was maintained in primary care. Logistic regression explored predictors of the three activities, including demographics, cancer characteristics, survivor/PCP association characteristics, health characteristics, and psychosocial well-being. RESULTS: Nearly two thirds of survivors indicated discussing cancer history; most said discussions were PCP initiated and nearly half said discussions resulted in tests/procedures. Predictors of discussing cancer history were African American race and more comorbid conditions. PCP-initiated discussions were related to older age, surviving breast cancer, more years in the PCP's practice, and having less general health worry. The tests/procedures model was not significant. CONCLUSIONS: As older survivors focused more on other health concerns, PCPs remained attentive to cancer issues, prompting discussions about history and ordering tests.

Patterns of adaptation in patients living long term with advanced cancer.

BACKGROUND: With improved treatment, increasing proportions of patients with advanced cancer are surviving longer with their disease: into a second year after diagnosis and beyond. These longer term survivors face continuing challenges in selecting and shifting personal life goals and goals of care over years (rather than months) of life with incurable cancer. Studies are needed to explore adaptation over time in patients who are living longer term with late-stage cancer, including anxiety, depression, and spiritual well being, which are conceptualized as indicators of psychospiritual well being in patients with advanced cancer. METHODS: Psychospiritual well being and adaptation were explored in a study of middle-aged and older patients with advanced cancer (N=142) who survived into a second year after diagnosis and were assessed in interviews across 4 time points. Examining patterns of adaptation over time called for in depth analytical techniques to identify variation in key outcome trajectories. General growth mixture modeling was used to explore heterogeneity in adaptation using a multivariate parallel model of anxiety, depression. and spiritual well being. RESULTS: Modeling revealed 3 distinct group trajectories of psychospiritual well being and adaptation (low-worsening, moderate-improving, and high-stable). Age and education were correlated with group membership. Advanced cancer survivors who were older and had more years of education were more likely to be members of the high-stable group in psychospiritual adaptation throughout the study. CONCLUSIONS: The current findings suggested that psychospiritual adaptation, as measured in this study, is not uniform but is characterized by heterogeneous trajectories. The results contribute to the development of better hypotheses regarding the processes of adaptation in longer term survivors with advanced cancer and to the identification of potential subgroups at greatest risk for poor outcomes.

Establishing treatment fidelity in a coping and communication support telephone intervention for aging patients with advanced cancer and their family caregivers.

A randomized controlled trial of a nurse-delivered coping and communication support (CCS) intervention tailored to the preferences of middle-aged and older patients with advanced cancer and their family caregivers is tested for its value in improving outcomes for quality cancer care. An intervention study must be reliably delivered to estimate the accuracy of findings or make valid conclusions about the outcomes of research. The purpose of this article was to describe methodology for ensuring treatment fidelity in this patient-centered CCS intervention. Fidelity is maximized by ensuring that the CCS intervention is congruent with relevant theory, standardizing training and interventionist competence, and monitoring intervention delivery and documentation. We address unique challenges arising from using individualized interventions that preserve autonomy of the individual and are responsive to shifts in patients' needs and preferences over time. The challenge of nursing research on patient preference and coping communication requires both rigorous measurement of interventionist adherence to the intervention protocol and flexibility to allow for changing needs of patients and family caregivers.

Health and well-being in older married female cancer survivors.

OBJECTIVES: To investigate differences between older married female cancer survivors and a matched comparison sample on physical health and on effects of health on depressive symptomatology. DESIGN AND SETTING: National survey data from the 1992 Health and Retirement Study. PARTICIPANTS: Married women who reported having been diagnosed with cancer (N=245) and married women who did not report a cancer diagnosis but who matched the survivors on age, race, and ethnicity (N=245). MEASUREMENTS: Outcome measure was depressive symptomatology (modified CES-D). Predictors were multiple indicators of health and demographic characteristics. RESULTS: Cancer survivors reported significantly worse health on all indicators but not higher depressive symptomatology after health and demographics were controlled. Predictors of higher depression were fatigue, pain, and lower education. These effects did not differ between groups. CONCLUSION: Health impairment in cancer survivors highlights the need for ongoing follow-up care. Survivorship was associated indirectly with higher depressive symptomatology through its relationship with health impairment.

Functioning of older, long-term cancer survivors: the role of cancer and comorbidities.

OBJECTIVES: To examine the relative effect of comorbidities, noncancer symptoms, and cancer-related factors on the functioning of older adult long-term survivors of breast, colorectal, and prostate cancers. DESIGN: Data from in-person interviews with survivors of a tumor registry-based stratified random sample were used to test a multivariate model using ordinary least-squares regression. SETTING: Survivors were identified in the tumor registry of a National Cancer Institute-designated Comprehensive Cancer Center in Cleveland, Ohio. PARTICIPANTS: Three hundred twenty-one older (>or=60), long-term (>or=5 years) cancer survivors. MEASUREMENTS: The primary outcome measure, functional difficulty, was measured using Nagi's Performance Limitations Index. Predictors included a number of indicators of survivors' personal characteristics, age-related health characteristics, and cancer-related characteristics. RESULTS: The model explained 44% of the variance in functional difficulties between the cancer survivors in this sample. The strongest predictors were symptoms not attributed to cancer (beta=0.28) and comorbidities (beta=0.22), although cancer-related factors explained an additional 8% of the variance over that explained by demographic and noncancer health factors, with current cancer-related symptoms being a significant predictor (beta=0.14). CONCLUSION: These findings indicate the importance of monitoring cancer-related characteristics along with comorbidities and noncancer symptoms in long-term survivors because they jointly affect overall physical functioning. Special attention needs to be given to women and minority cancer survivors as well.

Predictors of engagement in a coping and communication support intervention for older patients with advanced cancer.

OBJECTIVES: To examine patterns and predictors of engagement in a coping and communication support (CCS) intervention tailored to the preferences of middle-aged and older patients in the early treatment phase for late-stage cancer. DESIGN: Randomized controlled trial examining processes and outcomes of a CCS intervention for patients with late-stage cancer over time. SETTING: Two ambulatory cancer clinics providing care for underserved populations in Cleveland. PARTICIPANTS: One hundred nine middle-aged (MA: aged 40-60) and 101 young-old (YO: aged 61-80) patients randomized to the CCS intervention, surviving to 3 months after enrollment and averaging 2 months of 24/7 access to the intervention. MEASUREMENTS: Engagement was assessed in the average number of patient-CCS practitioner (CCSP) contacts per month during the initial 2 months of access to the intervention. Baseline data from patient interviews and chart reviews were used to test a model of prediction. RESULTS: MA patients averaged more patient-CCSP contacts per month than YO patients (mean 2.6 +/- 2.5 vs 2.0 +/- 1.2, P=.02), although both age groups were engaged. African-American patients (P=.007) and those with a higher blunting style (P<.01), reporting more family discord in cancer communication (P=.009), and receiving fewer active cancer treatments (P=.008) were more engaged in the CCS intervention in the initial months. CONCLUSIONS: Psychooncology interventions individualized to patient preferences can effectively reach older and underserved populations. Such interventions may be especially important to patients using more avoidant behaviors, experiencing more family discord communicating about cancer, or receiving fewer aggressive treatments in the early treatment phase for late-stage cancer.

Family caregiver engagement in a coping and communication support intervention tailored to advanced cancer patients and families.

We describe family caregiver (FCG) participation in a tailored coping and communication support intervention for advanced cancer patients and families. Preliminary descriptive data on characteristics and patterns of early engagement in the intervention for 132 FCGs are presented. Engagement assessed at an initial in-person meeting and the following 6 weeks includes problems raised, strategies used, and initiation, frequency, and mode of contact. A sizable proportion of FCGs were male, African American, and nonspouse. The FCGs had modest scores on a standard survey measure of burden yet volunteered caregiving demands as their primary problem. Other problems raised initially by more than 40% of the sample included psychological, practical, and communication with healthcare providers. Few reported physical and psychosocial difficulties. Engagement preferences expressed at the initial meeting largely mapped with actual engagement during the 6 weeks of intervention. Most FCGs were actively engaged during follow-up. Some (14%) did not opt for coping and communication support during this early treatment phase. This intervention is expected to affect quality of care and quality-of-life outcomes for FCGs over time from patient diagnosis to end of life. Findings will guide modification and dissemination of this intervention primarily in cancer clinics for the underserved.

The effects of cancer-related pain and fatigue on functioning of older adult, long-term cancer survivors.

This research examines the fatigue and pain reported by a sample of long-term (5 years), older adult (>or=60 years) survivors of breast, prostate, and colorectal cancer. It also examines the importance of cancer and age-related factors as correlates of pain and fatigue as well as the relationship between pain and fatigue and functional difficulty. Data were derived from 321 in-person interviews with a sample of survivors randomly selected from a tumor registry at a comprehensive cancer center. The results of multivariate analysis indicate that the pain, energy level, and weakness reported by older adult cancer survivors are more strongly related to age-related factors than they are to cancer-related factors. Age-related factors accounted for 14% of the variance in pain compared with 2% for cancer-related factors. For energy level, age-related factors explained 4% of the variance, whereas cancer-related factors account for 2%. Age-related factors accounted for 9% of the variance in weakness compared with 6% for cancer-related factors. Furthermore, pain, energy, and weakness are all statistically significant predictors of functional difficulties (beta = .20, -.16, and .11, respectively). Age-related factors explained 21% of the total variance, whereas cancer-related factors contributed 6%. This research points to the fact that both cancer and age-related factors contribute to the pain and fatigue of older adult survivors, although factors such as comorbidities and noncancer symptoms appear to be relatively more important. Because it is not unusual for those providing health care to older adults to be unaware of their cancer history and treatments, the role that cancer may play in symptoms such pain and fatigue may go unassessed and unadressed.

Cancer survivorship and identity among long-term survivors.

This article examines the concept of survivorship and the adoption of the "survivor identity" by those who have been treated for cancer. First, we review recent and growing theoretical and empirical literatures on cancer and identity and identity transformation. With that review as background, we present our own research findings from 2 separate studies on survivorship and identity. Our data suggest that most older adults who have survived cancer for at least 5 years, identify as cancer survivors and/or as ex-patients rather than as victims or patients. Most also view being a survivor as an important part of who they are, do not see themselves as less whole, and are not overly concerned about how others view them. To the degree that a survivor orientation is associated with better mental health outcomes and encourages health promotion and appropriate symptom monitoring, it can reinforce the effects of the quality medical care provided by clinical staff. The support of clinicians encouraging this orientation, where it is appropriate, may further enhance the quality of life of individuals who living with a history of cancer.

Functioning and activity participation restrictions among older adult, long-term cancer survivors.

This research examines how cancer and treatment sequelae combine with comorbidities to influence the physical functioning and activity participation restrictions reported by older adult (> or =60), long-term survivors (5+ years) of breast, prostate, and colorectal cancer. The number of current comorbidities was the best predictor of functional difficulties and also a significant predictor of participation restrictions. Cancer stage at diagnosis and continuing cancer symptoms had direct effects on functional difficulties, and indirect effects through functional difficulties on participation restrictions. Clinicians working with older adult survivors need to be aware of the interplay between cancer and other health problems as they affect quality of life after cancer.

Caregiver objective burden and assessments of patient-centered, family-focused care for frail elderly veterans.

PURPOSE: There is a growing consensus that quality of care for frail elders should include family and be evaluated in terms of patient-centered, family-focused care (PCFFC). Family caregivers are in a unique and sometimes sole position to evaluate such care. In the context of caring for physically frail elders, this study examined the extent to which objective burden was associated with caregiver perceptions of PCFFC and the extent to which it mediated the influence of other variables on perceptions of PCFFC. DESIGN AND METHODS: In a study of frail elderly veterans receiving care in U.S. Department of Veterans Affairs ambulatory primary care clinics, informal caregivers assessed quality of care with 13 questions. Factor analysis of these items revealed an eight-item scale that specifically assessed PCFFC (alpha =.90). Regression analysis identified variables associated with caregiver (N = 210) assessments of PCFFC and the potential mediating effect of objective burden. RESULTS: Caregiver assessments of PCFFC were positively associated with care recipient instrumental activity of daily living limitations (p =.04) and perspectives on the quality of their own patient care (p <.001). Greater objective burden was negatively associated with caregiver assessments of PCFFC (p <.001) and mediated (i.e., reduced) the relationship between care recipient perceptions of the quality of their own patient care and caregiver assessments of PCFFC (DeltaR(2) =.06). IMPLICATIONS: These findings support recommendations for conducting caregiver assessments as part of routine care and highlight the importance of measuring objective burden and expectations for PCFFC in assisting physically frail elders. Primary care providers will require additional training in order to effectively implement and translate such caregiver assessments into clinical practice improvement.

Appraisal of the cancer experience by family members and survivors in long-term survivorship.

This study assessed the appraisal of the stressfulness of the cancer experience and its correlates for family members and older survivors living in the long-term survivorship phase of the disease. On average, family members appraised the cancer experience as more stressful than their surviving relatives. Beliefs about the effect of the diagnosis and treatment on family members were important correlates for both family members and survivors in the appraisal process. Cancer characteristics were not related to appraisal for survivors, but stage at diagnosis was associated with a more stressful appraisal for family members. Demographic characteristics were unrelated to appraisal for family members, but being African-American was linked to a less stressful appraisal for survivors. These findings highlight the stressful impact of the cancer experience on family members and can help guide health care interventions which include family members from African-American and White ethnicities.

Cancer-related health worries and psychological distress among older adult, long-term cancer survivors.

While long-term survivors (5 years+) do not face the stressors of diagnosis and treatment, they continue to face the uncertainties that survivorship brings: recurrence, other cancers, late effects of treatment, and the potential of a shortened life expectancy. This research focuses on the cancer-related health worries of older adult, long-term cancer survivors, the factors that predict these worries, and their link to traditional measures of psychological distress. Specifically, a model is proposed that identifies the personal (including race and gender) and illness/treatment characteristics of survivors that are significantly associated with cancer-related health worries and their effects on anxiety and depression. Descriptive and multivariate analyses of a random sample of 321 long-term survivors in a major cancer center tumor registry are used to address these issues. About one-third of survivors continue to report worries about recurrence, worries about a second cancer, and worries that symptoms they experience may be from cancer. The regression analyses show that cancer-related health worries is a significant predictor of both depression (beta=0.36) and anxiety (beta=0.21). Race is a significant predictor; being African American is related to fewer cancer-related health worries (beta=-0.22). Having more symptoms during treatment is also a predictor of having more cancer-related health worries (beta=0.20). The most consistent predictor of psychosocial distress is dispositional optimism/pessimism, with more optimistic individuals reporting fewer cancer-related health worries (beta=-0.27), lower levels of both anxiety (beta=-0.16) and depression (beta=-0.23). Overall, for many older adult, long-term survivors, the legacy of cancer continues in terms of cancer-related health worries. In spite of these, for most survivors, their quality of life is not dramatically compromised either physically or psychologically.

Coping among older-adult, long-term cancer survivors.

This research focuses on the coping behavior of older adult, long-term cancer survivors. Specifically, it identifies the personal (including race and gender) and illness/treatment characteristics of survivors that are significantly associated with the use of specific coping styles: planning, acceptance, venting, denial and seeking social support. It also examines the mediating role that these forms of coping play in terms of psychological distress: anxiety, depression and cancer-related worries. Multivariate analysis of data from a random sample of 321 long-term survivors in a major cancer center tumor registry is used to address the above issues. The most prominent forms of coping used by long-term survivors were planning and acceptance; least used were venting and denial. Increased age was associated with lower use of all forms of coping, but cancer type was not. Denial as a form of coping was associated with higher anxiety, depression and cancer-related worries. While race was not found to be a significant predictor of coping style, it was a significant predictor of three dimensions of psychological distress, anxiety, depression and cancer-related worries, with African Americans exhibiting lower levels of distress than Whites. The relevance of these findings for health and social service practitioners is discussed.

Cancer in the elderly.

As the population expands, over the period from 2000 to 2050, the number and percentage of Americans over age 65 is expected to double. This population expansion will be accompanied by a marked increase in patients requiring care for disorders with high prevalence in the elderly. Since cancer incidence increases exponentially with advancing age, it is expected that there will be a surge in older cancer patients that will challenge both healthcare institutions and healthcare professionals. In anticipation of this challenge, researchers at the Case Comprehensive Cancer Center, Case Western Reserve University, Cleveland, Ohio are conducting a series of investigations focused on the intersection of aging and cancer. Studies will be addressed in the high priority research areas of 1) Treatment Efficacy and Tolerance, 2) Effects of Comorbidities, 3) Psychosocial Issues, and 4) Biology of Aging Cancer.

The health of older-adult, long-term cancer survivors.

Research indicates that cancer-related health problems persist for decades among survivors. The combination of late effects of cancer or its treatment and age-related health problems may add to the vulnerability of older survivors. This research reports on the health and functioning of a sample of long-term (5+ years), older-adult (>60 years) survivors of breast, prostate, and colorectal cancer. Data were derived from 321 in-person interviews with a sample randomly selected from a tumor registry at a comprehensive cancer center. Descriptive data analyzed comorbid health conditions and continued cancer symptoms reported by survivors. Correlational analysis examined the association among demographic cancer-related factors and a range of health quality-of-life outcomes, including functioning and illness impact. Nearly 40% of respondents have at least 1 symptom attributed to cancer/treatment. Pain was the most commonly reported symptom, with 21% attributing it to cancer. More than 40% of breast cancer survivors and nearly 20% of prostate cancer survivors reported pain. Being African American or female was significantly associated with more current symptoms and greater functional difficulty. Survivors who had chemotherapy and survivors with more types of treatment reported significantly more symptoms both during treatment and currently. Many older-adult survivors are more vulnerable due to both cancer-related symptoms and comorbid health conditions. Women and African Americans are at special risk. This combined vulnerability is an important factor for clinicians treating long-term survivors.

Families of long-term cancer survivors: health maintenance advocacy and practice.

Research on cancer and aging has addressed health maintenance issues for older adults in long-term cancer survivorship, but not their family members. The current study focused on two aspects of health maintenance for families: advocacy and practice. Regression analyses explored the effects of demographic characteristics and perceptions during diagnoses and treatments on family members' health maintenance in long-term survivorship. Family members were acting as health maintenance advocates for their surviving relatives. Advocacy was related to being a caregiver during diagnosis and treatment. In terms of their own health, family members were practicing a high number of health maintenance activities. Practice was associated with being a caregiver during diagnosis and treatment and with being older and White. Implications for interventions and future research with family members are discussed.

Appraisal of the cancer experience by older long-term survivors.

Cancer survivorship is best viewed as a process that continues across the life span. Appraisals of cancer change over time and may not be explicit until long after treatment completion. The current study, using the Lazarus and Folkman (1984) stress-appraisal-coping framework, explored factors related to both a stressful and an irrelevant appraisal of the cancer experience by older long-term survivors. Hierarchical regression analysis investigated the individual and cumulative effects of person factors (survivors' demographic characteristics, beliefs about the effect of cancer on family members) and situation factors (characteristics of cancer) on survivors' appraisals that cancer was a stressful life event. The strongest correlates of the stress appraisal were person factors. A more stressful appraisal was associated with: (1). the belief that diagnosis/treatment caused greater family distress, (2). being younger, and (3). being White. The irrelevant appraisal had a marginally significant correlate in bivariate analysis and was not included in regression analysis. Implications for health-care professionals and patient/family interventions are discussed.