Family caregivers of relatives with a life-threatening cancer disease

Sammanfattning: The focus for this thesis has been significant others to patients with a life threatening cancer disease including patients enrolled in palliative homecare units and patients diagnosed with inoperable lung cancer. In today’s more outpatient oriented health care context the significant others in these populations often become caregivers to their relatives with cancer. The studies in the thesis are mostly concerned with the interactions that occur between the significant other and the patient. The overall aim was to explore different aspects of significant others situation as caregivers in the process that arise when a close person has been diagnosed with at life threatening cancer disease. The first qualitative study aimed to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer. Two themes were generated from interviews with the significant others; one concerned the role transition into becoming a caregiver and the other the transition into a new life situation of the significant other. Significant others described themselves as bearing the primary responsibility for the care of the patient. They were found to have many concerns regarding communication of emotions about their own situation but seemed to have few expected sources of support in these concerns. Normally often the patient would have been the intimate confidant but in this situation normal communication patterns were disrupted. Professionals were expected to support primarily as consultants in direct care related tasks. In the second and third study dyadic assessment from significant others and patients were used to elevate significant others ability to identify and evaluate central problems and symptoms in persons with lung cancer, and in addition to investigate factors that may influence this ability. Results showed that the levels of agreement between significant others and patients assessments of the patients functions and symptoms were fair to good, but that significant others consistently rated the patients’ symptoms higher and functioning lower than the patients did. These discrepancies were most substantial in ratings of fatigue, emotional functioning, global health/quality of life. Factors found to influence agreement in those dimensions were, gender, patient age and significant others’ selfreported lack of family support, health problems and caregiver esteem. It was also found that emotional functioning and fatigue were the only significant predictors of the patients overall quality of life in both the patients and the significant others’ assessments. The fourth study was initiated to explore significant others relational functioning to a person with lung cancer and development in relational functioning during the first year after the patients diagnosis. In a sample of 91 significant others, data was collected on four occasions. Fifty-two percent of significant others reported change in relational functioning during disease trajectory. The most common change in relational functioning was either a linear change in a negative direction (49%) or a nonlinear change with a temporary descending curve (26%), showing that change toward a more problematic relationship was most common. In this thesis it is concludes that communication and intimacy in the relationship between significant others and patients, particularly regarding emotional concerns, may have implications for the significant others transition into becoming a caregiver for a relative with a life threatening cancer disease.

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