"I've been doing this for years": the COVID-19 pandemic and family caregiver isolation and loneliness.

Background: Family caregivers are family members or friends of care recipients who assist with activities of daily living, medication management, transportation, and help with finances among other activities. As a result of their caregiving, family caregivers are often considered a population at risk of experiencing increased stress, isolation, and loneliness. During the COVID-19 pandemic in the US, social isolation and decrease in social activities were a top concern among older adults and their family caregivers. Using secondary analysis of survey data as part of a multi-site implementation trial of a caregiver skills training program, we describe differences in caregiver experiences of loneliness before and during the COVID-19 pandemic. Methods: Health and wellbeing surveys of family caregivers were collected on 422 family caregivers of veterans before and during COVID-19. Logistic regression modeling examined whether the loneliness differed between caregiver groups pre vs during COVID-19, using the UCLA 3-item loneliness measure. Rapid directed qualitative content analysis of open-ended survey questions was used to explore the context of how survey responses were affected by the COVID-19 pandemic. Results: There were no significant differences in loneliness between caregivers pre vs during COVID-19. In open-ended responses regarding effects of COVID-19, caregivers described experiencing loneliness and social isolation; why they were unaffected by the pandemic; and how caregiving equipped them with coping strategies to manage negative pandemic-related effects. Conclusion: Loneliness did not differ significantly between pre vs during COVID-19 caregivers. Future research could assess what specific characteristics are associated with caregivers who have resiliency, and identify caregivers who are more susceptible to experiencing loneliness. Understanding caregiver loneliness could assist other healthcare systems in developing and implementing caregiver support interventions.

'Against Medical Advice' Discharges After Respiratory-Related Hospitalizations: Strategies for Respectful Care.

Against medical advice (AMA) discharges are practically and emotionally challenging for both patients and clinicians. Moreover, they are common after admissions for respiratory conditions such as COPD and asthma, and they are associated with poor outcomes. Despite the challenges presented by AMA discharges, clinicians rarely receive formal education and have limited guidance on how to approach these discharges. Often, the approach to AMA discharges prioritizes designating the discharge as "AMA," whereas effective coordination of discharge care receives less attention. Such an approach can lead to stigmatization of patients and low-quality care. Although evidence for best practices in AMA discharges remains lacking, we propose a set of strategies to improve care in AMA discharges by focusing on respect, in which clinicians treat patients as equals and honor differing values. We describe five strategies, including (1) preventing an AMA discharge; (2) conducting a patient-centered and truthful discussion of risk; (3) providing harm-reducing discharge care; (4) minimizing stigma and bias; (5) educating trainees. Through a case of a patient discharging AMA after a COPD exacerbation, we highlight how these strategies can be applied to common issues in respiratory-related hospitalizations, such as prescribing inhalers and managing oxygen requirements. We argue that, by using these strategies, clinicians can deliver respectful and higher-quality care to an often-marginalized population of patients with respiratory disease.

Family Involvement in the Care of Hospitalized Older Adults: Protocol for a Qualitative Evidence Synthesis.

BACKGROUND: Older adults are frequently hospitalized. Family involvement during these hospitalizations is incompletely characterized in the literature. OBJECTIVE: This study aimed to better understand how families are involved in the care of hospitalized older adults and develop a conceptual model describing the phenomenon of family involvement in the care of hospitalized older adults. METHODS: We describe the protocol of a qualitative evidence synthesis (QES), a systematic review of qualitative studies. We chose to focus on qualitative studies given the complexity and multifaceted nature of family involvement in care, a type of topic best understood through qualitative inquiry. The protocol describes our process of developing a research question and eligibility criteria for inclusion in our QES based on the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, and Research type) tool. It describes the development of our search strategy, which was used to search MEDLINE (via Ovid), Embase (via Elsevier), PsycINFO (via Ovid), and CINAHL Complete (via EBSCO). Title and abstract screening and full-text screening will occur sequentially. Purposive sampling may be used depending on the volume of studies identified as eligible for inclusion during our screening process. Descriptive data regarding included individual studies will be extracted and summarized in tables. The results from included studies will be synthesized using qualitative methods and used to develop a conceptual model. The conceptual model will be presented to community members via engagement panels for further refinement. RESULTS: As of September 2023, we have assembled a multidisciplinary team including physicians, nurses, health services researchers, a librarian, a social worker, and a health economist. We have finalized our search strategy and executed the search, yielding 8862 total citations. We are currently screening titles and abstracts and anticipate that full-text screening, data extraction, quality appraisal, and synthesis will be completed by summer of 2024. Conceptual model development will then take place with community engagement panels. We anticipate submitting our manuscript for publication in the fall of 2024. CONCLUSIONS: This paper describes the protocol for a QES of family involvement in the care of hospitalized older adults. We will use identified themes to create a conceptual model to inform further intervention development and policy change. TRIAL REGISTRATION: PROSPERO 465617; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42023465617. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/53255.

A scoping review of palliative care outcome measures in interstitial lung disease.

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

A scoping review of person and family engagement in the context of multiple chronic conditions.

OBJECTIVE: To review definitions, concepts, and evidence regarding person and family engagement for persons with multiple chronic conditions (MCCs) in order to identify opportunities to advance the field. DATA SOURCE: Ovid MEDLINE. STUDY DESIGN: We performed a two-step process as follows: (1) a critical review of conceptual models of engagement to identify key concepts most pertinent to engagement among persons with MCC as a "launch pad" to our scoping review and (2) a scoping review of reviews of engagement for persons living with MCC. DATA COLLECTION/EXTRACTION METHODS: First, we critically reviewed six models of engagement. Second, our scoping review identified 1297 citations, with 67 articles meeting criteria for inclusion. Of these, we focused on reviews, of which there were nine titles/abstracts retained for full-text consideration. Six full-text reviews were included in the final analysis. The purpose, review type, population, number/type of included studies, theoretical framework, and findings of each study were extracted and analyzed thematically. PRINCIPAL FINDINGS: Conceptual models of engagement differ with respect to areas of emphasis (e.g., systems or clinical encounters) as well as attention to vulnerable populations, involvement of family, consideration of cost-benefit trade-offs, and attention to outcomes that matter most. Our scoping review of reviews identified just one article explicitly focused on engagement interventions for those with MCC. Other reviews examined elements of self-management and involvement in decision making, conceptually related to engagement without explicit use of the word. We find that existing evidence has predominantly described individual-level strategies rather than targeting organizations, systems, or policies. Barriers to engagement are not well described nor are potential downsides to engagement. Family engagement is rarely considered. CONCLUSIONS: Promising areas of future work include attention to barriers to engagement including trust, goal-based care, the design of structural changes to care delivery, trade-offs between benefits and costs, and family engagement.

Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?

CONTEXT: Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. OBJECTIVES: The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. METHODS: Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors. RESULTS: The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain. CONCLUSION: Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.

Patient-Family Agenda Setting for Primary Care Patients with Cognitive Impairment: the SAME Page Trial.

BACKGROUND: Establishing priorities for discussion during time-limited primary care visits is challenging in the care of patients with cognitive impairment. These patients commonly attend primary care visits with a family companion. OBJECTIVE: To examine whether a patient-family agenda setting intervention improves primary care visit communication for patients with cognitive impairment DESIGN: Two-group pilot randomized controlled study PARTICIPANTS: Patients aged 65 + with cognitive impairment and family companions (n = 93 dyads) and clinicians (n = 14) from two general and one geriatrics primary care clinic INTERVENTION: A self-administered paper-pencil checklist to clarify the role of the companion and establish a shared visit agenda MEASUREMENTS: Patient-centered communication (primary); verbal activity, information disclosure including discussion of memory, and visit duration (secondary), from audio recordings of visit discussion RESULTS: Dyads were randomized to usual care (n = 44) or intervention (n = 49). Intervention participants endorsed an active communication role for companions to help patients understand what the clinician says or means (90% of dyads), remind patients to ask questions or ask clinicians questions directly (84% of dyads), or listen and take notes (82% of dyads). Intervention dyads identified 4.4 health issues for the agenda on average: patients more often identified memory (59.2 versus 38.8%; p = 0.012) and mood (42.9 versus 24.5%; p = 0.013) whereas companions more often identified safety (36.7 versus 18.4%; p = 0.039) and personality/behavior change (32.7 versus 16.3%; p = 0.011). Communication was significantly more patient-centered in intervention than in control visits at general clinics (p < 0.001) and in pooled analyses (ratio of 0.86 versus 0.68; p = 0.046). At general clinics, intervention (versus control) dyads contributed more lifestyle and psychosocial talk (p < 0.001) and less biomedical talk (p < 0.001) and companions were more verbally active (p < 0.005). No intervention effects were found at the geriatrics clinic. No effect on memory discussions or visit duration was observed. CONCLUSION: Patient-family agenda setting may improve primary care visit communication for patients with cognitive impairment. TRIAL REGISTRATION: ClinicalTrials.gov : NCT02986958.

"Let him speak:" a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment.

OBJECTIVE: Cognitive impairment poses communication challenges in primary care. Although family "companions" commonly attend primary care visits of older adults with cognitive impairment, little is known about how their involvement affects communication. Therefore, we sought to understand how companion involvement affects the quality of primary care visit communication for older adults with cognitive impairment. METHODS: Cross-sectional, descriptive qualitative study participants were as follows: (1) English-speaking adults age 65 or older with mild, moderate, or severe cognitive impairment; (2) family members or other unpaid companions who accompany older adults to primary care visits; and (3) primary care clinicians. Twenty semi-structured and in-depth qualitative interviews of older adults and their companions (N = 20 dyads) and two focus groups (N = 10 primary care clinicians) were conducted. Interviews and focus groups were transcribed and analyzed thematically. RESULTS: Family companions commonly facilitate communication by advocating for patients, ensuring the accuracy of information exchange and understanding, and preserving rapport. Significant communication challenges were also identified, including patient and companion role ambiguity, competing visit agendas, and primary care clinician confusion regarding the most accurate source of information. Patients, companions, and clinicians each identified strategies to improve communication, chief among them being to identify, differentiate, and respect both patient and companion priorities and perspectives. CONCLUSIONS: Family companions actively participate in primary care visits of older adults with cognitive impairment in ways that promote and inhibit effective communication. Findings suggest the need for strategies that more effectively and purposefully involve family in the care of primary care patients with cognitive impairment. Copyright © 2017 John Wiley & Sons, Ltd.

Examining the context and helpfulness of family companion contributions to older adults' primary care visits.

OBJECTIVE: Older adults commonly involve family (broadly defined) in their care. We examined communication behaviors of family companions during older adults' primary care visits, including whether these behaviors vary with respect to how older adults manage their health, preferences for involving family in medical decision-making, and ratings of companion helpfulness. METHODS: Analysis of audio-taped primary care visits of older patients who were accompanied by a family companion (n=30 dyads) and linked patient surveys. RESULTS: Family companions predominantly facilitated doctor and patient information exchange. More than half of companion communication behaviors were directed at improving doctor understanding of the patient. Companions were more verbally active during visits of patients who delegated the management of their health to others than visits of patients who co-managed or self-managed their health. Companions were rated as more helpful by patients who preferred active involvement of family in medical decision-making. CONCLUSION: Family companion participation and helpfulness in primary care communication varies by patients' preferences for involving family in medical decision-making and approach to manage their health. PRACTICE IMPLICATIONS: Research to examine the effects of clarifying patient and family companion expectations for primary care visits could inform strategies to improve the patient-centeredness of medical communication.

Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention.

INTRODUCTION: Ensuring that patients receive care that is consistent with their goals and values is a critical component of high-quality care. This article describes the protocol for a cluster randomised controlled trial of a multicomponent, structured communication intervention. METHODS AND ANALYSIS: Patients with advanced, incurable cancer and life expectancy of <12 months will participate together with their surrogate. Clinicians are enrolled and randomised either to usual care or the intervention. The Serious Illness Care Program is a multicomponent, structured communication intervention designed to identify patients, train clinicians to use a structured guide for advanced care planning discussion with patients, 'trigger' clinicians to have conversations, prepare patients and families for the conversation, and document outcomes of the discussion in a structured format in the electronic medical record. Clinician satisfaction with the intervention, confidence and attitudes will be assessed before and after the intervention. Self-report data will be collected from patients and surrogates approximately every 2 months up to 2 years or until the patient's death; patient medical records will be examined at the close of the study. Analyses will examine the impact of the intervention on the patient receipt of goal-concordant care, and peacefulness at the end of life. Secondary outcomes include patient anxiety, depression, quality of life, therapeutic alliance, quality of communication, and quality of dying and death. Key process measures include frequency, timing and quality of documented conversations. ETHICS AND DISSEMINATION: This study was approved by the Dana-Farber Cancer Institute Institutional Review Board. Results will be reported in peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: Protocol identifier NCT01786811; Pre-results.

The Student Curriculum Review Team: How we catalyze curricular changes through a student-centered approach.

Student feedback is a valuable asset in curriculum evaluation and improvement, but many institutions have faced challenges implementing it in a meaningful way. In this article, we report the rationale, process and impact of the Student Curriculum Review Team (SCRT), a student-led and faculty-supported organization at the Johns Hopkins University School of Medicine. SCRT's evaluation of each pre-clinical course is composed of a comprehensive three-step process: a review of course evaluation data, a Town Hall Meeting and online survey to generate and assess potential solutions, and a thoughtful discussion with course directors. Over the past two years, SCRT has demonstrated the strength of its approach by playing a substantial role in improving medical education, as reported by students and faculty. Furthermore, SCRT's uniquely student-centered, collaborative model has strengthened relationships between students and faculty and is one that could be readily adapted to other medical schools or academic institutions.

Bridging the gap: a palliative care consultation service in a hematological malignancy-bone marrow transplant unit.

BACKGROUND: There is often a lack of collaboration between hematological malignancy-bone marrow transplantation (HM-BMT) units and palliative care (PC) services. In this paper, we describe a quality improvement project that sought to close this gap at a tertiary care hospital in Pittsburgh, Pennsylvania, from August 2006 to May 2010. DESIGN AND METHODS: Through a needs assessment, didactic lectures, clinical consultation, and the informal presence of PC clinicians, the team created a palliative care service in HM-BMT unit of the Western Pennsylvania Hospital in Pittsburgh. The following data were collected for each consult: referral reason, daily pain assessments, whether or not a "goals of care" conversation took place, and hospice enrollment. Lastly, satisfaction surveys were administered. RESULTS: During the program, 392 PC consultations were provided to 256 unique patients. Of these 256 patients, the PC clinicians documented the first goals of care conversations in 67% of patients (n = 172). Of the 278 consults referred for pain, 70% (n = 194) involved reports of unacceptable or very unacceptable pain at baseline. Sixty-six percent (n = 129) of these 194 consults involved reports of pain that was acceptable or very acceptable within 48 hours of consultation. In addition, the hospice referral rate grew from a pre-implementation rate of 5% to 41% (n = 67) of 165 patients who died during the period of program implementation. Lastly, hematological oncologists reported high levels of satisfaction with the program. LIMITATIONS: The main limitation of this project is that it was a single institution study. CONCLUSION: The successful integration of a PC team into a hematological malignancy unit suggests great potential for positive interdisciplinary collaboration between these two fields.

Securing the safety of our most precious cargo: SAFE KIDS.

There are staggering and tragic statistics involving children, car seats, and motor vehicle accidents. According to the Centers for Disease Control and Prevention, motor vehicle injuries are the leading cause of death among children from 0 to 15 years of age, and in the United States during 2005, 1,335 children ages 14 years and younger died as occupants in motor vehicle accidents; approximately 184,000 were injured. That is an average of 4 deaths and 504 injuries each day. National Highway Traffic Safety Administration (NHTSA) statistics show that nearly one-half of deaths and injuries in children occurred because they were not properly restrained. Child safety seats and safety belts, when installed and used properly, can prevent injuries and save lives. Among children under age 5, an estimated 425 lives were saved in 2006 by child restraint use. Research on the effectiveness of child safety seats has found them to reduce fatal injury by 71% for infants, and by 54% for toddlers in passenger cars. This article discusses the need for increased education of parents and healthcare professionals about selection and installation of car safety restraints, and the importance of developing a child safety restraint program.