OBJECTIVES To determine whether age or stage of cancer can be used to identify caregivers at high risk for excessive burden or distress. DESIGN Descriptive data collected as part of a psychosocial research registry, comparing younger caregivers with older and caregivers of early-stage patients with those of later stage. PARTICIPANTS Caregivers of newly diagnosed adult cancer patients. MEASUREMENTS Caregiver Reaction Assessment (CRA), the Profile of Mood States (POMS), single-item indicators from the Patient Reported Outcome Measurement Information System set, and the Medical Outcomes Study Social Support (MOS-SS) Scale. Patient information was obtained from the medical record. RESULTS Younger caregivers and caregivers of patients with Stage I and II cancer identified a greater lack of family support than older caregivers and caregivers of patients with Stage III and IV cancer. Significant regression models were found for three CRA subscales (Disrupted Schedule, Lack of Family Support, and Health Problems), as well as for the POMS depression and fatigue scales. Caregiver social support (MOS-SS) made the only significant contribution to the models. There were significant differences between caregivers with high and low levels of social support on almost all measures of well-being. CONCLUSION Incorporating formal assessment of social support may be useful in identifying at-risk caregivers. In addition, there is a need to further investigate which dimensions of social support are most strongly related to measures of well-being.

Research focused on the psychosocial aspects of the experience of persons with cancer and their family caregivers is hampered by the methodological challenges inherent in quality of life research. A data registry offers a potential solution to many of these problems in providing a large, comprehensive database, using standardized instruments. We report here our preliminary experience with establishing a Psychosocial Registry designed to advance research in the psychological, social, and spiritual aspects of quality of life of newly diagnosed cancer patients and their family caregivers. The first six months of enrollment demonstrated that the majority of newly diagnosed patients approached for consent (68%) and their primary family caregiver (92%) were willing to participate in the registry; of these, 80% also agreed to be contacted in the future for additional studies. Face-to-face interview was the preferred method of data collection. Our preliminary experience suggests that continuation of the registry with the current modest level of resources would generate a sample of approximately 1000 patients in three years. The long-range goal is to establish a national psychosocial data registry that will enroll patients at diagnosis and follow them through the entire cancer experience, including end of life or survivorship.

It is estimated that 11.1 million people in the United States are living with serious illness, and most people with serious illness need palliative care. Quality palliative care incorporates culturally sensitive care, and with the increasing diversity in the United States, it has become even more critical that nurses and health care professionals be prepared to meet the unique needs of those living within the diverse and underserved populations of this country. Advocating for access to palliative care for the seriously ill, culturally respectful care at the end of life, and honoring values, practices, and beliefs are essential roles of the nurse. This article presents 4 examples of individuals from diverse and potentially vulnerable US populations who face unique challenges as they deal with their life-limiting diseases and face end of life.

This chapter defines culturally respectful palliative care and discusses how the advanced practice registered nurse can integrate principles into clinical practice. The chapter emphasizes the importance of first reflecting on one’s own values, practices, and beliefs and recognizing their influence on the delivery of culturally appropriate care. Communication strategies for performing a cultural assessment of the patient and family are presented. Cultural communication considerations such as language differences, health literacy, and access to technology are addressed, and strategies to deal with these issues are offered. Special considerations in the delivery of culturally respectful palliative care (addressing disparities in quality palliative care, supporting beliefs regarding disclosure of prognosis and medical decision-making, recognizing cultural implications of pain and symptom management, integrating cultural rituals and practices into clinical care, and dealing with cultural clashes) are reviewed.

Pearson correlations and Cronbach's Alpha reliabilities to demonstrate evidence of content and construct validity. Intra-Class Correlations (ICC) were performed to evaluate interjudge reliability. Results. We found internal consistency across the checklist items on the FMBS instrument (a reliability¼0.855). Moreover, the number of skills performed (captured by the checklist) and the level of skill (captured by rating the subsets of skills) were strongly correlated (r¼+0.827, P<0.01). There was also a statistically significant correlation between the SECURE and the FMBS instrument as a checklist and as a rating scale respectively (0.649 and 0.632, P<0.01). Finally, the FMBS checklist showed better interjudge reliability (ICC [2,2]¼0.571) than the SECURE (ICC [2,2]¼0.322) or the FMBS rating scales (ICC [2,2]¼0.231). Discussion. Despite the limited sample size, we found the structure of the FMBS instrument to be consistent with SECURE, another measure of communication. Additionally, these analyses provide evidence for an internally consistent and structurally valid instrument to measure advanced skills in communication during standardized family meetings. Inter-rater reliability was better for the FMBS checklist than the rating scale and SECURE. Conclusion. The FMBS instrument is an effective tool for formative and summative evaluation in the PCC fellowship setting and should be generalizable to other subspecialty fellowships.