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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 α = .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.

Background and objectives While there are qualitative studies examining the delirium-related experiences of patients, family caregivers, and nurses separately, little is known about common aspects of delirium burden among all three groups. We describe common delirium burdens from the perspectives of patients, family caregivers, and nurses. Research design and methods We conducted semistructured qualitative interviews about delirium burden with 18 patients who had recently experienced a delirium episode, with 16 family caregivers, and with 15 nurses who routinely cared for patients with delirium. We recruited participants from a large, urban teaching hospital in Boston, Massachusetts. Interviews were recorded and transcribed. We used interpretive description as the approach to data analysis. Results We identified three common burden themes of the delirium experience: Symptom Burden (Disorientation, Hallucinations/Delusions, Impaired Communication, Memory Problems, Personality Changes, Sleep Disturbances); Emotional Burden (Anger/Frustration, Emotional Distress, Fear, Guilt, Helplessness); and Situational Burden (Loss of Control, Lack of Attention, Lack of Knowledge, Lack of Resources, Safety Concerns, Unpredictability, Unpreparedness). These burdens arise from different sources among patients, family caregivers, and nurses, with markedly differing perspectives on the burden experience. Discussion and implications Our findings advance the understanding of common burdens of the delirium experience for all groups and offer structure for instrument development and distinct interventions to address the burden of delirium as an individual or group experience. Our work reinforces that no one group experiences delirium in isolation. Delirium is a shared experience that will respond best to systemwide approaches to reduce associated burden.

PURPOSE To determine whether a palliative care (PC) consult service in a long-term care (LTC) facility would result in a more favorable course of treatment and clinical outcomes for participating residents. DESIGN AND METHODS We used a historical control design within a single LTC facility. Outcome data and potential confounding variables were obtained using the Minimum Data Set. (Health Care Financing Administration. (1995). Long term care resident assessment instrument user's manual version 2.0. Rockville, MD: Health Care Financing Administration.) Residents who died during the period of the PC service (2007-2009) were compared with matched residents who died in the year prior (2006, historical controls). The analysis sample included 250 residents (125 PC residents, 125 non-PC historical control residents). Our main analysis focused on a composite outcome based on utilization patterns, depression, and pain and other clinical indicators. We analyzed change on this component score (and the individual outcomes) over a 1-year period. RESULTS PC residents experienced a significant reduction in emergency room (ER) visits (p < .001) and depression (p = .031). Change in the composite score indicated a significant difference over time between the 2 groups (p = .013). IMPLICATIONS Although limited to 1 facility and drawn from a quasi-experimental design, the results demonstrate the potential for improved quality of care with PC consults. The PC team was effective in reducing ER visits and depression and promoted more appropriate care resulting in more favorable clinical outcomes toward the resident's end of life.

Purpose: This study aimed to develop home care quality indicators (HCQIs) to be used by a variety of audiences including consumers, agencies, regulators, and policy makers to support evidence-based decision making related to the quality of home care services. Design and Methods: Data from 3,041 Canadian and 11,252 U.S. home care clients assessed with the Minimum Data Set—Home Care (MDS-HC) were used to evaluate a series of indicators suggested by international experts and by focus groups conducted in Canada and the United States. Risk adjustment methods were derived and validated using data from Ontario and Michigan. Results: Of the 73 original candidate HCQIs, 22 were retained for the final list of recommended indicators. All but three indicators include risk adjusters based on individual-level covariates. An agency-level risk adjustment was developed to correct for selection and ascertainment bias. Implications: The HCQIs are new tools providing a first step along the path of quality improvement for home care. These indicators can provide high-quality evidence on performance at the agency level and on a regional basis.

Purpose: We determine the main outcome effects of a 12-month computer-mediated automated interactive voice response (IVR) intervention designed to assist family caregivers managing persons with disruptive behaviors related to Alzheimer’s disease (AD). Design and Methods: We conducted a randomized controlled study of 100 caregivers, 51 in the usual care control group and 49 in the technology intervention group, who received yearlong access to an IVR-mediated system. The system provided caregiver stress monitoring and counseling information, personal voice-mail linkage to AD experts, a voice-mail telephone support group, and a distraction call for care recipients. We conducted analyses by using a repeated measures approach for longitudinal data and an intention-to-treat analytic approach. Outcomes included the caregiver’s appraisal of the bothersome nature of caregiving, anxiety, depression, and mastery at baseline, 6, 12, and 18 months. Results: There was a significant intervention effect as hypothesized for participants with lower mastery at baseline on all three outcomes: bother (p 5 .04), anxiety (p 5 .01), and depression (p 5 .007). Additionally, wives exhibited a significant intervention effect in the reduction of the bothersome nature of caregiving (p 5 .02). Implications: Wives who exhibited low mastery and high anxiety benefited the most from the automated telecare intervention. Findings suggest that, to optimize outcome effects, similar interventions should be tailored to match the users’ characteristics and preferences.