Journal of palliative medicine
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Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. ⋯ This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.
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To describe development of the Standard Hospice & Palliative Care Education Program in Korea, a basic training program for hospice & palliative care professionals, and to report preliminary results from the 2008-2009 demonstration project at 2 sites that support its effectiveness. ⋯ Development of the Standard Hospice & Palliative Care Education Program was successful, and its preliminary effectiveness was shown by the demonstration program. Comments on our experience in Korea would be helpful to efforts in other countries, particularly those with limited resources for hospice and palliative care.
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Multicenter Study
The influence of age on the likelihood of receiving end-of-life care consistent with patient treatment preferences.
Age differences may help to explain discrepancies in medical care received by cancer patients near death. ⋯ Likelihood of a patient's treatment preference being consistent with care differ by age and treatment preferences. Older patients preferring life-prolonging therapies are less likely to receive them than younger patients; middle-aged patients who want to avoid life-prolonging care are more likely to do so than younger patients. Both findings have implications for patients' quality-of-death, indicating a need for further research.
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Randomized Controlled Trial Multicenter Study
Methodological challenges in conducting a multi-site randomized clinical trial of massage therapy in hospice.
Researchers conducting multi-site studies of interventions for end-of-life symptom management face significant challenges with respect to obtaining an adequate sample and training and retaining on-site study teams. The purpose of this paper is to describe the strategies and responses to these challenges in a multi-site randomized clinical trial (RCT) of the efficacy of massage therapy for decreasing pain among patients with advanced cancer in palliative care/hospice settings. ⋯ Three key qualities characterized successful on-site study teams: (1) organizational commitment; (2) strong leadership from on-site study coordinators; and (3) effective lines of communication between the on-site study coordinators and both their teams and the university-based research team. Issues of recruitment, retention and training should be accounted for in hospice-based research study design and budgeting.
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Not published, not indexed: issues in generating and finding hospice and palliative care literature.
Accessing new knowledge as the evidence base for hospice and palliative care grows has specific challenges for the discipline. This study aimed to describe conversion rates of palliative and hospice care conference abstracts to journal articles and to highlight that some palliative care literature may not be retrievable because it is not indexed on bibliographic databases. ⋯ There are limitations to retrieval of all possible literature through electronic searching of bibliographic databases. Encouraging publication in indexed journals of studies presented at conferences, promoting selection of palliative care journals for database indexing, and searching more than one bibliographic database will improve the accessibility of existing and new knowledge in hospice and palliative care.