Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The Caregiver's Perception of Patient Care Near Death

Purpose End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care. Patients and Methods Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52–0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = −2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = −.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = −2.06; p≤.05). Conclusion: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment

Public Attitudes About Normal and Pathological Grief

Determining public expectations of grief is an important contributor to the debate differentiating normal from pathological grief. An international sample of 348 participants was randomly allocated to 1 of 12 conditions comprising a bereavement vignette and self-report items measuring grief expectations and social distance. Participants expected grief to decrease steadily between 2 weeks and 6 months then stabilize; however, time did not affect social distance. Gender of the bereaved and circumstances of death did not influence expectations, but did interact to influence social distance. These factors must be accounted for in determining a deviation from the norm in diagnostic nosology

Grief experiences among female American and Arab undergraduate college students

© 2015 The Author(s). The purpose of this study was to compare the incidence of grief among American and Arab female undergraduate students, the effects of their grief, and risk of prolonged grief disorder. A total of 471 female undergraduate students, 308 (65.4%) from the United Arab Emirates and 163 (34.6%) from the United States, completed a survey about their grief experiences. Students experiencing a significant loss also completed the Prolonged Grief Disorder Questionnaire. Findings revealed that overall approximately 38.4% (n=181) of all 471 students experienced the loss of a significant person in their lives within the past 24 months; a similar percentage was found in each sub group. Students reported various grief effects with American students experiencing more effects related to sleep, relationships, academics, physical well-being, religion/spirituality, and outlook on life than Arab students. Only a small number (10, 5.52%) of students met the criteria for prolonged grief disorder; however, most students were female Arab students. Limitations of the study and recommendations for future research are provided

War and Bereavement: Consequences for Mental and Physical Distress

Background: Little is known about the long-term impact of the killing of a parent in childhood or adolescence during war on distress and disability in young adulthood. This study assessed current prevalence rates of mental disorders and levels of dysfunction among young adults who had lost their father due to war-related violence in childhood or adolescence. Methods: 179 bereaved young adults and 175 non-bereaved young adults were interviewed a decade after experiencing the war in Kosovo. Prevalence rates of Major Depressive Episode (MDE), anxiety, and substance use disorders, and current suicide risk were assessed using the Mini–International Neuropsychiatric Interview. The syndrome of Prolonged Grief Disorder (PGD) was assessed with the Prolonged Grief Disorder Interview (PG-13). Somatic symptoms were measured with the Patient Health Questionnaire. General health distress was assessed with the General Health Questionnaire. Findings: Bereaved participants were significantly more likely to suffer from either MDE or any anxiety disorder than nonbereaved participants (58.7 % vs. 40%). Among bereaved participants, 39.7 % met criteria for Post-Traumatic Stress Disorder, 34.6 % for PGD, and 22.3 % for MDE. Bereaved participants with PGD were more likely to suffer from MDE, any anxiety disorder, or current suicide risk than bereaved participants without PGD. Furthermore, these participants reported significantly greater physical distress than bereaved participants without PGD. Conclusion: War-related loss during middle childhood and adolescence presents significant risk for adverse mental healt

A Reflection on Virtual Reality Design for Psychological, Cognitive & Behavioral Interventions: Design Needs, Opportunities & Challenges

Despite the substantial research interest in using Virtual Reality (VR) in healthcare in general and in Psychological, Cognitive, and Behavioral (PC&B) interventions in specific, as well as emerging research supporting the efficacy of VR in healthcare, the design process of translating therapies into VR to meet the needs of critical stakeholders such as users and clinicians is rarely addressed. In this paper, we aim to shed light onto the design needs, opportunities and challenges in designing efficient and effective PC&B-VR interventions. Through analyzing the co-design processes of four user-centered PC&B-VR interventions, we examined how therapies were adapted into VR to meet stakeholders’ requirements, explored design elements for meaningful experiences, and investigated how the understanding of healthcare contexts contribute to the VR intervention design. This paper presents the HCI research community with design opportunities and challenges as well as future directions for PC&B-VR intervention design

Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study

Objectives: To determine whether the receipt of chemotherapy among terminally ill cancer patients months before death was associated with patients’ subsequent intensive medical care and place of death. Design: Secondary analysis of a prospective, multi-institution, longitudinal study of patients with advanced cancer. Setting: Eight outpatient oncology clinics in the United States. Participants: 386 adult patients with metastatic cancers refractory to at least one chemotherapy regimen, whom physicians identified as terminally ill at study enrollment and who subsequently died. Main outcome measures Primary outcomes: intensive medical care (cardiopulmonary resuscitation, mechanical ventilation, or both) in the last week of life and patients’ place of death (for example, intensive care unit). Secondary outcomes: survival, late hospice referrals (≤1 week before death), and dying in preferred place of death. Results: 216 (56%) of 386 terminally ill cancer patients were receiving palliative chemotherapy at study enrollment, a median of 4.0 months before death. After propensity score weighted adjustment, use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life (14% v 2%; adjusted risk difference 10.5%, 95% confidence interval 5.0% to 15.5%) and late hospice referrals (54% v 37%; 13.6%, 3.6% to 23.6%) but no difference in survival (hazard ratio 1.11, 95% confidence interval 0.90 to 1.38). Patients receiving palliative chemotherapy were more likely to die in an intensive care unit (11% v 2%; adjusted risk difference 6.1%, 1.1% to 11.1%) and less likely to die at home (47% v 66%; −10.8%, −1.0% to −20.6%), compared with those who were not. Patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not (65% v 80%; adjusted risk difference −9.4%, −0.8% to −18.1%). Conclusions: The use of chemotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary resuscitation, mechanical ventilation or both and of dying in an intensive care unit. Future research should determine the mechanisms by which palliative chemotherapy affects end of life outcomes and patients’ attainment of their goals

Bereavement help-seeking following an 'expected' death: a cross-sectional randomised face-to-face population survey

© 2008 Currow et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Background : This study examines the prevalence and nature of bereavement help-seeking among the population who experienced an "expected" death in the five years before their survey response. Such whole population data are not limited by identification through previous access to specific services nor practitioners. Methods : In a randomised, cross-sectional, state-wide population-based survey, 6034 people over two years completed face-to-face interviews in South Australia by trained interviewers using piloted questions (74.2% participation rate). Respondent demographics, type of grief help sought, and circumstantial characteristics were collected. Uni- and multi-variate logistic regression models were created. Results : One in three people (1965/6034) had experienced an 'expected' death of someone close to them in the last five years. Thirteen per cent sought help for their grief from one or more: friend/family members (10.7%); grief counselors (2.2%); spiritual advisers (1.9%); nurses/doctors (1.5%). Twenty five respondents (1.3%) had not sought, but would have valued help with their grief. In multi-variate regression modeling, those who sought professional help (3.4% of the bereaved) had provided more intense care (OR 5.39; CI 1.94 to14.98; p < 0.001), identified that they were less able to 'move on' with their lives (OR 7.08; CI 2.49 to 20.13; p = 0.001) and were more likely not to be in full- or part-time work (OR 3.75; CI 2.31 – 11.82; p = 0.024; Nagelkerke's R2 = 0.33). Conclusion : These data provide a whole-of-population baseline of bereavement help-seeking. The uniquely identified group who wished they had sought help is one where potentially significant health gains could be made as we seek to understand better any improved health outcomes as a result of involving bereavement services

A survey of Dutch GPs’ attitudes towards help seeking and follow-up care for relatives bereaved by suicide

Background. Relatives who are bereaved by suicide likely consult their GP when they feel the need for professional help. GPs may play a key role in establishing who is at risk for adverse consequences of the loss as they are familiar with relatives’ possible psychiatric vulnerabilities. The availability of evidence-based services for relatives of suicide victims is limited. Successful implementation of services needs analysis of key factors considered critical in the achievement of changes. We investigated GPs’ management of help requests of relatives bereaved by suicide and examined determinants of GPs willingness to refer for evidence-based follow-up care

Identifying bereaved subjects at risk of complicated grief: Predictive value of questionnaire items in a cohort study

<p>Abstract</p> <p>Background</p> <p>Bereavement is a condition which most people experience several times during their lives. A small but noteworthy proportion of bereaved individuals experience a syndrome of prolonged psychological distress in relation to bereavement. The aim of the study was to develop a clinical tool to identify bereaved individuals who had a prognosis of complicated grief and to propose a model for a screening tool to identify those at risk of complicated grief applicable among bereaved patients in general practice and palliative care.</p> <p>Methods</p> <p>We examined the responses of 276 newly bereaved individuals to a variety of standardised and ad hoc questionnaire items eight weeks post loss. Inventory of Complicated Grief (ICG-R) was used as a gold standard of distress at six months after bereavement. Receiver operating characteristic (ROC) curves analysis was performed for all scales and items regarding ICG-R score. Sensitivity, specificity and area under curve (AUC) were calculated for scales and items with the most promising ROC curve analyses.</p> <p>Results</p> <p>Beck's Depression Inventory (BDI) was the scale with the highest AUC (0.83) and adding a single item question ('Even while my relative was dying, I felt a sense of purpose in my life') gave a sensitivity of 80% and specificity of 75%. The positive/negative predictive values for this combination of questions were 70% and 85%, respectively. With this screening tool bereaved people could be categorized into three groups where group 1 had 7%, group 2 had 23% and group 3 had 64% propensity of suffering from complicated grief six months post loss.</p> <p>Conclusions</p> <p>This study shows that the BDI in combination with a single item question eight weeks post loss may be used for clinical screening for risk of developing complicated grief after six months. The feasibility and clinical implications of the screening tool has to be tested in a clinical setting.</p