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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments.

ABSTRACT: BACKGROUND AND OBJECTIVES:Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity. RESEARCH DESIGN AND METHODS:Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ?70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form). RESULTS:Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 - 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's ? = .82-.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p < .001). Test-retest reliability of DEL-B-C at baseline and 1 month was strong (correlation = .73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation = .34) and DEL-B-C (correlation = .26), suggesting contribution of other factors. DISCUSSION AND IMPLICATIONS:We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families.

SUBMITTER: Racine AM

PROVIDER: S-EPMC6857693 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments.

Racine Annie M AM D'Aquila Madeline M Schmitt Eva M EM Gallagher Jacqueline J Marcantonio Edward R ER Jones Richard N RN Inouye Sharon K SK Schulman-Green Dena D

The Gerontologist 20190901 5

<h4>Background and objectives</h4>Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity.<h4>Research design and methods</h4>Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 year ...[more]

PMID: 29746694

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Project description:IntroductionAcute myeloid leukemia (AML) is associated with lower survival and greater unmet need compared with some other hematologic malignancies (HMs). Despite differences in acuteness between AML and other HMs, the burden of family caregivers (FCs) of patients with these malignancies offer similar patient experiences. A targeted literature review was conducted to explore FC burden of patients with AML and HM with and without hematopoietic stem cell transplant (HSCT). Instruments to measure and interventions to address FC burden were identified.MethodsStudies on economic burden and compromised health-related quality of life (HRQoL) associated with FC burden, family affairs, and childcare from 1 January 2010 to 30 June 2019 were identified through database and hand searches. Published English articles on randomized controlled trials or standardized qualitative or quantitative observational studies were included. FCs were those in close familial proximity to the patient (i.e., spouse, parents, children, relatives, other family members, significant others).ResultsSeventy-one publications were identified (AML, n = 3; HM, n = 29; HSCT, n = 39). Predominant burden categories included humanistic (n = 33), economic (n = 17), and interventions (n = 22); one study was classified as humanistic and economic. FCs lack sufficient resources to manage stressors and experience negative psychological, behavioral, and physiological effects. FCs of patients with HMs reported post-traumatic stress disorder, significant sleep problems, moderate-to-poor HRQoL, and negative impacts on family relationships. Instruments designed to measure caregiver burden were generic and symptom-specific. Educational, expressional, and self-adjustment interventions were used to improve FC burden.ConclusionFindings indicate a need for additional research, public health approaches to support FCs, and effective interventions to address FC burden. Minimizing FC burden and improving quality of life may reduce the overall healthcare service use and allow FCs to more effectively fulfill caregiver tasks. Support systems to alleviate caregiver burden may create reinforced integrators, thus positively affecting quality of life and possibly the outcomes of patients.

Project description:BackgroundDementia is a chronic and progressive illness characterized by severe impairment and high dependencies. Under the influence of Chinese traditional culture, 80% of patients with dementia are watched over at home by family caregivers as primary caregivers. However, long-term care brings formidable burdens to them and reduces the quality of their life. It is necessary to find out the influencing factors of caregivers' burden.MethodsA scoping search was conducted on eight electronic databases from 1 January 2010 to 14 June 2022: PubMed, Embase, the Cochrane Library, Web of Science, China National Knowledge Infrastructure, China VIP Database, China Biomedical Literature Database, and Wanfang Data Knowledge Service Platform. Research articles included in this review discussed the factors affecting Chinese dementia family caregivers' care burden or stress, and the level of care burden was evaluated by a standardized care burden scale.ResultsA total of 1,888 related articles were found and 23 cross-sectional studies were eventually included. After quality assessment, 12 were of good quality and 11 were of fair quality. A total of 32 factors were identified that were associated with caregiver burden, and the results were grouped into three categories: patient, caregiver, and society. The severity of disease, poor self-care ability, neuropsychiatric symptoms, care time, number of helpers, poor health status, economic stress, poor psychological status, social support, and age were reported in many previous studies.ConclusionIn this review, the factors that affect the caregiver burden for people with dementia were clarified. By identifying these factors, hospitals, decision-makers, and communities can carry out special projects for these populations, provide appropriate assistance, or design corresponding intervention measures to reduce the caregiver burden and improve the quality of care for patients with dementia.Systematic review registration[https://www.crd.york.ac.uk/PROSPERO/], identifier [CRD42022347816].

Project description:BACKGROUND:Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet. METHODS:A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. RESULTS:Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. CONCLUSIONS:The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. TRIAL REGISTRATION:clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018.

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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments.

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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments.

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