J Palliat Care
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The purpose of this descriptive cross-sectional study was to describe family caregiver involvement in and perceptions of cancer pain management. A consecutively recruited cohort of 75 patient-caregiver dyads attending an outpatient oncology clinic completed self-report questionnaires comprising standardized and investigator-developed measures of pain behaviours and experiences. ⋯ At the same time, many caregivers experienced a great deal of distress and some difficulties in performing these activities. The significance and scope of these caregiving experiences suggest that developing the caregiver's ability to effectively contribute to pain management is an important priority in efforts to improve cancer pain management.
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In this exploratory study, family members of 63 decedents were interviewed by telephone, two to five months post-death, about their perceptions of their loved one's worries, symptoms, and suffering at the end of life. The most common worries reported focused on loss of bodily function (44%), being dependent (40%), and being a burden (39%). ⋯ A majority (94%) of family members reported that their loved one suffered at the end of life, but only worries about loss of quality of life (e.g., being unable to participate in enjoyable activities) were predictive of reports of suffering. Findings suggest that worries, irrespective of the level of current symptoms, play an important role in the suffering of dying patients, and that treatment plans for the terminally ill should routinely explore both symptoms and worries.
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The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. ⋯ Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.