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      What Does the Staff Think? : Factors Associated With Clinical Staff Perceptions of What Constitutes High-Quality Dying and Death at a Tertiary Pediatric Hospital

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          The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives.

          We used exploratory factor analysis within the confirmatory analysis framework, and data provided by family members and friends of 205 decedents in Missoula, Montana, to construct a model of latent-variable domains underlying the Quality of Dying and Death questionnaire (QODD). We then used data from 182 surrogate respondents, who were survivors of Seattle decedents, to verify the latent-variable structure. Results from the two samples suggested that survivors' retrospective ratings of 13 specific aspects of decedents' end-of-life experience served as indicators of four correlated, but distinct, latent-variable domains: Symptom Control, Preparation, Connectedness, and Transcendence. A model testing a unidimensional domain structure exhibited unsatisfactory fit to the data, implying that a single global quality measure of dying and death may provide insufficient evidence for guiding clinical practice, evaluating interventions to improve quality of care or assessing the status or trajectory of individual patients. In anticipation of possible future research tying the quality of dying and death to theoretical constructs, we linked the inferred domains to concepts from identity theory and existential psychology. We conclude that research based on the current version of the QODD might benefit from the use of composite measures representing the four identified domains, but that future expansion and modification of the questionnaire are in order. Copyright 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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            Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later.

            To assess unresolved parental grief, the associated long-term impact on mental and physical health, and health service use. This anonymous, mail-in questionnaire study was performed as a population-based investigation in Sweden between August 2001 and October 2001. Four hundred forty-nine parents who lost a child as a result of cancer 4 to 9 years earlier completed the survey (response rate, 80%). One hundred ninety-one (43%) of the bereaved parents were fathers, and 251 (56%) were mothers. Bereaved parents were asked whether or not, and to what extent, they had worked through their grief. They were also asked about their physical and psychological well-being. For outcomes of interest, we report relative risk (RR) with 95% CIs as well as unadjusted odds ratios and adjusted odds ratios. Parents with unresolved grief reported significantly worsening psychological health (fathers: RR, 3.6; 95% CI, 2.0 to 6.4; mothers: RR, 2.9; 95% CI, 1.9 to 4.4) and physical health (fathers: RR, 2.8; 95% CI, 1.8 to 4.4; mothers: RR, 2.3; 95% CI, 1.6 to 3.3) compared with those who had worked through their grief. Fathers with unresolved grief also displayed a significantly higher risk of sleep difficulties (RR, 6.7; 95% CI, 2.5 to 17.8). Mothers, however, reported increased visits with physicians during the previous 5 years (RR, 1.7; 95% CI, 1.1 to 2.6) as well as a greater likelihood of taking sick leave when they had not worked through their grief (RR, 2.1; 95% CI, 1.2 to 3.5). Parents who have not worked through their grief are at increased risk of long-term mental and physical morbidity, increased health service use, and increased sick leave.
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              Review: the quality of dying and death: a systematic review of measures.

              To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.
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                Author and article information

                Journal
                Journal of Hospice & Palliative Nursing
                Journal of Hospice & Palliative Nursing
                Ovid Technologies (Wolters Kluwer Health)
                1522-2179
                2016
                October 2016
                : 18
                : 5
                : 470-476
                Article
                10.1097/NJH.0000000000000278
                © 2016

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