Anna-Leila Williams

Background: Descriptive studies of cancer family caregivers demonstrate role-related psychosocial and physical burden; however, little is known about which factors contribute to or obviate burden. Systematic reviews of caregiver intervention studies demonstrate mixed results, perhaps because some caregiver needs are still unknown and not adequately addressed. The purpose of our study was to explore the lived experience of being a caregiver for an adult with lung or colon cancer, so as to guide the development of future intervention studies. Method: Using phenomenologic methods, open-ended interviews were conducted at a chemotherapy clinic, New Haven, CT with 135 caregivers to adults with lung or colon cancer. Interviews were audio-recorded and transcribed. Thematic analysis was conducted with transcripts coded, reviewed, and recoded multiple times. The final 69 codes were reduced to 13 code clusters (thematic categories) distributed among 4 themes. Results: Four inter-related themes emerged: 1) becoming a caregiver; 2) new and altered relationships; 3) personal responses to caregiving and 4) antecedents and social context. Caregivers describe hearing the cancer diagnosis as “life-changing”. The cancer creates the context for the caregiver's relationships (with the patient, self, others, and the healthcare system), and cognitive, behavioral, affective, and spiritual responses. The caregiver's antecedent experiences and social support network form the foundation for their perceptions of the diagnosis, relationships, and personal responses. Conclusion: This study implicates several intervention components to be developed and tested as favorably supporting caregivers, namely, reinforcing positive aspects of caregiving, cultivating open communication, and acknowledging the prior experiences and social foundation of the caregiver's life that can be supportive or burdensome.

Objective: Because caregiving to an adult with cancer is a dynamic process, a caregiver's perceived burden and psychosocial concerns may be different at different phases of the patient's disease. There is evidence of escalation in caregiver anxiety, depression, and psychological distress as the patient's functional status declines and as the patient nears death. The purpose of this review was to organize the literature in a meaningful way that can potentially capture the unique needs of caregivers to patients receiving palliative and/or hospice care, and caregivers who are in the post-death bereavement phase.Method: A systematic review was conducted. Major databases were searched for non-intervention descriptive studies that included psychosocial variables of family caregivers to adults with cancer during the palliative, hospice, or bereavement phases.Results: The 19 studies reviewed were conducted in six countries and varied considerably by samples, outcome measures, methodologies, and analytic approaches. Despite limiting to the palliative, hospice, and bereavement phases, inconsistent results were found for key variables, such as age, gender, and relationship to the patient. When patient–caregiver dyad analysis was conducted, with rare exception, there was mutuality between the patient's condition and the caregiver's response. Across the 19 studies, 89 unique instruments were used, almost half of which were study specific with no psychometric testing reported.Conclusions/significance of research: As a direct consequence of assuming the caregiver role, cancer family caregivers in the palliative, hospice, and bereavement phases are at increased risk for physical and mental morbidity. Often, the psychological burden of the caregiver exceeds that of the critically ill patient. It is possible that distressed caregivers have a deleterious influence on patient well-being. This review demonstrates the need to develop research standards, especially regarding measurement instruments, so that caregiver research can mature and interventions can be developed to support family caregivers.