Palliative & supportive care
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Palliat Support Care · Sep 2004
Assessing hope at the end of life: validation of an experience of hope scale in advanced cancer patients.
The purpose of this study was to gather validity evidence for an innovative experience of hope scale, the Hope Differential-Short (HDS), and evaluate its clinical utility for assessing hope in advanced cancer patients. ⋯ This is the first validation study of the HDS in advanced cancer patients. Its promising psychometric properties and brief patient-oriented nature provide a solid initial foundation for its future use as a clinical assessment measure in oncology and palliative care. Additional studies are warranted to gather further validity evidence for the HDS before its routine use in clinical practice.
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The standards of care for patients at risk for or with a pressure ulcer in hospitals and nursing homes focus on prevention and ulcer healing using an interdisciplinary approach. Although not a primary hospice condition, pressure ulcers are not uncommon in dying patients. Their management in hospices, particularly the involvement of family caregivers, has not been studied. The objective of this study is to identify the factors that influence care planning for the prevention and treatment of pressure ulcers in hospice patients and develop a taxonomy to use for further study. ⋯ Pressure ulcer care planning is a model of collaborative decision making between family caregivers and hospice providers for a condition that occurs as a secondary condition in hospice. A pressure ulcer places significant burdens on family caregivers distinct from common end-of-life symptoms whose treatment is directed at the patient. Because the goals of pressure ulcer care appear to be individualized for a dying patient and their caregivers, the basis of quality-of-care evaluations should be the process of care rather than the outcome of an incident pressure ulcer.
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Hospice staff members have concerns about the appropriateness of enrolling terminally ill people in research studies. These concerns can have profound implications for the advancement of palliative and hospice care as they can impede the empirical investigation of interventions for improving the quality of life of patients with advanced disease. This survey study was designed to examine hospice staff attitudes, beliefs, and values about research with their patients and family members. ⋯ Although many of the opinions derived from the survey appear to indicate a willingness to embrace research in a hospice setting, significant barriers, especially time constraints and protective attitudes, remain. Educational efforts and firsthand involvement in the research process might be a useful first step in attempting to address these barriers and traditionally held beliefs against using hospice patients and families in research.
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Palliat Support Care · Sep 2004
ACare: a communication training program for shared decision making along a life-limiting illness.
This article describes an innovative 8-h training program that provides clinicians with the competencies necessary to conduct efficient, effective, and compassionate advance care planning discussions throughout the trajectory of life-limiting illnesses. ⋯ Widespread adoption of the program could increase the frequency and quality of advance care planning discussions between patients with life-limiting illnesses, their health care providers, and families.