Quality of Relationships and Caregiver Burden: A Longitudinal Study of Caregivers for Advanced Cancer Patients.

OBJECTIVES: In a longitudinal design, this study investigates the role of the quality of relationships in the well-being of caregivers for a family member with advanced cancer, specifically, the quality of relations among family members and the caregiver's commitment to caregiving. Following the stress process model, good quality of relations and caregiver's high commitment should be resources mitigating caregiver burden, even though overinvestment in the caregiver role may lead to the opposite outcome. METHODS: Data were drawn from a longitudinal study of 336 caregivers of advanced cancer patients in an urban community, who were interviewed shortly after patient diagnosis and again 3 months later. Caregiver burden is measured by 4 subscales (17 items) of the Caregiver Reaction Assessment. We used a random-effect model to investigate the association between caregiver burden and the 2 focused contributing factors-caregiver commitment and family relationship quality-when other covariates were controlled. A fixed-effect model then examines the association between the changes in caregiver burden and related time-varying factors, including caregiver commitment, when family relationship quality was used as a moderator. RESULTS: Both the random and fixed-effect models consistently show that a cancer caregiver's positive commitment to the patient reduces caregiver burden, and family relationship quality provides an overall moderating influence that reduces the felt burden. DISCUSSION: The quality of relations between the caregiver and patient and with others in the family network is critical in understanding caregiver burden in advanced cancer and should be viewed as part of long-term family dynamics.

Qualitative study of affective identities in dementia patients for the design of cognitive assistive technologies.

Our overall aim is to develop an emotionally intelligent cognitive assistant (ICA) to help older adults with Alzheimer's disease (AD) to complete activities of daily living more independently. For improved adoption, such a system should take into account how individuals feel about who they are. This paper investigates different affective identities found in older care home residents with AD, leading to a computational characterization of these aspects and, thus, tailored prompts to each specific individual's identity in a way that potentially ensures smoother and more effective uptake and response. We report on a set of qualitative interviews with 12 older adult care home residents and caregivers. The interview covered life domains (family, origin, occupation, etc.), and feelings related to the ICA. All interviews were transcribed and analyzed to extract a set of affective identities, coded according to the social-psychological principles of affect control theory (ACT). Preliminary results show that a set of identities can be extracted for each participant (e.g. father, husband). Furthermore, our results provide support for the proposition that, while identities grounded in memories fade as a person loses their memory, habitual aspects of identity that reflect the overall "persona" may persist longer, even without situational context.

Cancer patient age and family caregiver bereavement outcomes.

PURPOSE: This study drew on life course theory to argue that the strains of cancer caregiving and bereavement are modified by the age of the patient. We expected that caregivers of middle-aged patients would be more distressed than caregivers of older patients. METHODS: This panel study conducted 199 interviews with family caregivers of advanced cancer patients; first following diagnosis and again shortly after the patient's death. RESULTS: Among caregivers of middle-aged patients (40-59), grief mediated the relationship between baseline caregiving and bereavement depressed mood, with grief increasing risk of depression in bereavement. Among caregivers of young-old patients (60-79), grief had a suppressor effect on the relationship between caregiving and bereavement depressed mood, showing greater distress during caregiving than at bereavement. CONCLUSIONS: Caregiving for middle-aged cancer patients may increase the risk for severe grief and depression, whereas caregivers of young-old cancer patients appeared to experience relief at bereavement. After bereavement, continued observation may be warranted for caregivers of a middle-aged patient; grief, added to the ongoing demands of their lives (which may include those left behind by a middle-aged patient), may put such caregivers at risk for greater psychological and emotional distress.

Word on the Street: Engaging Local Leaders in a Dialogue About Prostate Cancer Among African Americans.

African American men face the highest rates of prostate cancer, yet with no consensus for screening and treatment, making informed health care decisions is difficult. This study aimed to identify approaches to empowering African American men as proactive participants in prostate cancer decision making using an established community-campus partnership employing elements of community-based participatory research methods. Community stakeholders with an interest in, and knowledge about, health care in two local African American communities were recruited and completed key informant interviews (N = 39). Grounded theory coding identified common themes related to prostate cancer knowledge, beliefs, attitudes, and responses to them. Common barriers such as gender roles, fear, and fatalism were identified as barriers to work-up and treatment, and both communities' inadequate and inaccurate prostate cancer information described as the key problem. To build on community strengths, participants said the change must come from inside these communities, not be imposed from the outside. To accomplish this, they suggested reaching men through women, connecting men to doctors they can trust, making men's cancer education part of broader health education initiatives designed as fun and inexpensive family entertainment events, and having churches bring community members in to speak on their experiences with cancer. This study demonstrated the success of community engagement to identify not only barriers but also local strengths and facilitators to prostate cancer care in two suburban/rural African American communities. Building collaboratively on community strengths may improve prostate cancer care specifically and health care in general.

The longitudinal relationship between quality of life and survival in advanced stage cancer.

OBJECTIVES: Quality of Life (QoL) at baseline is frequently found to be a prognostic factor in cancer studies. However, little is known about the relationship of the trajectory of QoL and survival in patients with advanced cancer. This study evaluates the effects of both level and change of QoL on survival to explore the potential of utilizing longitudinal information of QoL for prognosis. METHODS: A series of joint models were used in a sample (N = 512) of patients diagnosed with advanced cancer (sample consisted of nine different cancer sites) with assessments of QoL across six time points and with survival information recorded up to 28 months after diagnosis. We used FACT-G as the QoL measure, and we evaluated the effects of change in QoL controlling for the time-dependent effects of chemotherapy and radiation. RESULTS: The median survival for patients was 14.2 months, and 10% of the sample had survived beyond 28 months after the diagnosis of advanced cancer. The effect of change of QoL on survival was significant (hazard ratio = 0.98; p < 0.001) controlling for time-dependent treatment effects. Also, the slope of the trajectory in QoL was found to be a significant predictor of survival (hazard ratio = 0.18; p < 0.001). CONCLUSION: These preliminary findings suggest that the patient's longitudinal experience in QoL may be a significant prognostic factor of survival, a novel finding with potentially important implications in medical decision making. Longitudinal information on QoL can be used for updating the patient's prognosis of survival.

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.

Preferences for aggressive care in underserved populations with advanced-stage lung cancer: looking beyond race and resuscitation.

PURPOSE: This paper examines the relationship between race, religiousness, spiritual well-being, antitumor treatment and preference for aggressive care among Black and White patients with advanced stage lung cancer receiving ambulatory cancer care in an urban setting. METHODS: A cross-sectional exploration of patients enrolled in a Cleveland-based longitudinal study after initial diagnosis of advanced lung cancer were interviewed in Cleveland regarding religiousness, spiritual well-being, preferences for cardiopulmonary resuscitation (CPR), goals of aggressive care, and willingness to tolerate adverse health states. Receipt of antitumor treatment was identified from medical records. RESULTS: We analyzed data from 67 Black and 129 White patients (N=196). Regression analysis for CPR showed that race was not associated with preference for CPR (OR=1.12, CI 0.44-2.85). The odds of choosing CPR were three times higher among patients receiving antitumor treatment (OR=3.26, CI 1.12-9.44). Greater willingness to endure adverse health states was associated with higher spiritual well-being scores (b=0.12, CI 0.01-0.25). Choosing goals to extend life versus relieve pain was higher among persons with higher spiritual well-being as well (RRR=1.08, CI 1.01-1.16), yet the relationship with religiousness was negative (RRR=0.46, CI 0.22-0.98). CONCLUSIONS: After controlling for multiple factors, race was associated only with CPR, but not with other measures of preference for aggressive care. In addition, receipt of active antitumor treatment was positively associated with preference for CPR and spiritual well-being was important to setting end-of-life care goals and perspectives. Future directions for tailoring end-of-life care decision-making initiatives should move beyond race and discussions of CPR alone and focus on a full spectrum of patient beliefs and preferences at the end of life.

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.

Relationship quality and burden among caregivers for late-stage cancer patients.

OBJECTIVE: This study explores how caregiver relationship quality with family, patient, and patient's health care provider (HCP) is associated with subjective caregiver burden during the early treatment phase for late-stage cancer. METHOD: Burden and relationship quality were assessed in telephone interviews with family caregivers (FCGs) of advanced cancer patients. The five subscales of the Caregiver Reaction Assessment measured burden, while relationships were measured with the Family Relationship Index, the Family Inventory of Needs subscale of met needs, and a scale assessing family discord in cancer communication. RESULTS: Multiple linear regression analyses in SPSS (v16) of 420 FCGs showed that higher quality relationship with family was associated with lower burden in FCG abandonment, health, scheduling (p < 0.001) and finances (p < 0.01). Higher quality relationship with patients' HCPs was associated with lower burden in FCG abandonment (p < 0.05), health, and finances (p < 0.001). More discordant communication in patient relationship was associated with lower financial burden (p < 0.05). Relationship quality was not associated with caregiver self-esteem. CONCLUSIONS: Findings demonstrate that caregiver relationship quality with family and with HCP are important factors in understanding caregiver burden during the early treatment phase of late-stage cancer care.

Beneficence vs. obligation: challenges of the Americans with Disabilities Act for consumer employment in mental health services.

Involvement of mental health service consumers in the provision of mental health services is a growing model in community mental health. It is, however, a complicated issue, made ever more so by the passage of the Americans with Disabilities Act. In this ethnographic case study, we seek to explore the changes one social services agency has made to adjust to the requirements of the ADA and the impact of these changes on their consumer employees. Our results indicate potential for positive progress as a result of the ADA, but also unexpected pitfalls as organizational cultures change as well.