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Cited by (123)
Dying in Germany - Unfulfilled needs of relatives in different care settings
2012, Journal of Pain and Symptom ManagementCitation Excerpt :Beyond that, the relatives' subjective impression may not meet the objective situation. High expectations and emotional distress may lead to a distorted perception of reality, and, therefore, may interfere with serious efforts on the part of health care professionals.42,43 Nevertheless, the high rates of unfulfilled needs of so many relatives across all care settings as demonstrated in our study indicate that their views should be taken seriously.
Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis
2010, Journal of Pain and Symptom ManagementCitation Excerpt :We asked these caregivers to recall details of discussions that took place many years before the interview. Recall of terminal illness by relatives has been reported in the shorter term, 28 and it is reported that proxies’ perceptions of patient’ symptoms are less reliable than for other aspects of quality of care at the end of life,29 but bereavement studies yielding reliable data about symptoms have been conducted up to 10 years after death.21,30 Because of concerns about recall bias, we compared recalled events to factual demographic information and disease-specific information previously abstracted from medical records and found concordance.
The Quality of Dying and Death Questionnaire (QODD): Empirical Domains and Theoretical Perspectives
2010, Journal of Pain and Symptom ManagementCitation Excerpt :First, the QODD relies on proxy respondents and their retrospective evaluations. Although retrospective assessment offers several advantages—among them a more precise mapping of outcomes to a known end-of-life period and a reduction in burden (or missing data) through avoiding data collection during the last phases of illness—it also introduces concerns about reliability and validity related to inaccurate recall, reinterpretation in the light of new information, and the effects of bereavement.23,60–62 Bereavement can have variable and unpredictable effects on questionnaire responses, sometimes more accurately reflecting the emotional state of the respondent than the experience of the decedent, and may change over the course of the bereavement period.60