Recommendations to Improve Health Outcomes Through Recognizing and Supporting Caregivers

Leykum, Luci K.; Penney, Lauren; Dang, Stuti; Trivedi, Ranak; Noël, Polly Hitchcock; Shepherd‐Banigan, Megan; Pugh, Mary Jo; Rupper, Rand; Finley, Erin P.; Parish-Johnson, Julie A.; Delgado, Roxana; Peacock, Kimberly; Kalvesmaki, Andrea; Houtven, Courtney Harold Van

doi:10.1007/s11606-021-07247-w

Cited by 23 publications

(23 citation statements)

References 29 publications

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“…Furthermore, as hospitals and health care systems consider best practices to advance health equity and address social determinants of health, those that take a systematic approach to integrating caregivers might be better able to assess patients’ structurally determined risks and offset negative health outcomes associated with caregiving, which disproportionately affect individuals from minoritized racial and ethnic backgrounds. 27 , 28 …”

Section: Discussionmentioning

confidence: 99%

“…The COVID-19 pandemic has exposed the unaddressed needs and important contributions of caregivers. 27 , 29 In light of this, many states are using their home-based and community-based service funds from the federal government, which must be spent by the end of 2024, to support caregiver training or respite care. 30 However, one challenge to implementing such policies is that many caregivers do not self-identify as such, which may limit their ability to access support services.…”

Section: Discussionmentioning

confidence: 99%

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Patient Experience at US Hospitals Following the Caregiver Advise, Record, Enable (CARE) Act

et al. 2023

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ImportanceCommunication with caregivers is often not established or standardized during hospitalization. The Caregiver Advise, Record, Enable (CARE) Act is a state-level policy designed to facilitate communication among patients, caregivers, and clinical care teams during hospitalization to improve patient experience; 42 states have passed this policy since 2014, but whether it was associated with achieving these goals remains unknown.ObjectiveTo determine whether passage of the CARE Act was associated with improvements in patient experience.Design, Setting, and ParticipantsThis cohort study used a difference-in-differences analysis of short-term, acute-care US hospitals from 2013 to 2019 to analyze changes in patient experience before vs after CARE Act implementation in hospitals located in states that passed the CARE Act compared with those in states that did not. Analyses were performed between September 1, 2021, and July 31, 2022.ExposureTime-varying indicators for whether a hospital was in a state that passed the CARE Act.Main Outcomes and MeasuresPatient-reported experience via the Hospital Consumer Assessment of Healthcare Providers and Systems survey.ResultsA total of 2763 hospitals were included, with 2188 hospitals in CARE Act states and 575 in non–CARE Act states. There were differential improvements in patient experience in the measures of communication with nurses (unadjusted mean [SD] score, 78.40% [0.42%]; difference, 0.18 percentage points; 95% CI, 0.07-0.29 percentage points; P = .002), communication with physicians (mean [SD] score, 80.00% [0.19%]; difference, 0.17 percentage points; 95% CI, 0.06-0.28 percentage points; P = .002), and receipt of discharge information (mean [SD] score, 86.40% [0.22%]; difference, 0.11 percentage points; 95% CI, 0.02-0.21 percentage points; P = .02) among CARE Act states compared with non–CARE Act states after policy passage. In subgroup analyses, improvements were larger among hospitals with lower baseline Hospital Consumer Assessment of Healthcare Providers and Systems performance on measures of communication with nurses, communication with physicians, and overall hospital rating.Conclusions and RelevanceThese findings suggest that implementation of the CARE Act was associated with improvements in several measures of patient experience. Policies that formally incorporate caregivers into patient care during hospitalization may improve patient outcomes.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Patient Experience at US Hospitals Following the Caregiver Advise, Record, Enable (CARE) Act

et al. 2023

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“…[ 52 ] At a policy and system level, promoting legislation for insurance coverage of high‐cost medications such as immunosuppressive drugs, value‐based drug pricing, assistance programs for caregivers, and paid family and medical leave are needed. [ 53–56 ]…”

Section: Discussionmentioning

confidence: 99%

Financial burden in adults with chronic liver disease: A scoping review

et al. 2022

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The economic burden of chronic liver disease is rising; however, the financial impact of chronic liver disease on patients and families has been underexplored. We performed a scoping review to identify studies examining financial burden (patient/family health care expenditures), financial distress (material, behavioral, and psychological consequences of financial burden), and financial toxicity (adverse health outcomes of financial distress) experienced by patients with chronic liver disease and their families. We searched MEDLINE, Embase, Cochrane Library, and the Web of Science online databases for articles published since the introduction of the Model for End‐Stage Liver Disease score for liver transplantation allocation in February 2002 until July 2021. Final searches were conducted between June and July 2021. Studies were included if they examined the prevalence or impact of financial burden or distress among patients with chronic liver disease and/or their caregivers. A total of 19 observational studies met inclusion criteria involving 24,549 patients and 276 caregivers across 5 countries. High rates of financial burden and distress were reported within the study populations, particularly among patients with hepatic encephalopathy, hepatocellular carcinoma, and liver transplantation recipients. Financial burden and distress were associated with increased pre‐ and posttransplantation health care utilization and poor health‐related quality of life as well as caregiver burden, depression, and anxiety. None of the included studies evaluated interventions to alleviate financial burden and distress. Observational evidence supports the finding that financial burden and distress are underrecognized but highly prevalent among patients with chronic liver disease and their caregivers and are associated with poor health outcomes. There is a critical need for interventions to mitigate financial burden and distress and reduce financial toxicity in chronic liver disease care.

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“…Even the most patient, compassionate and empathetic family caregiver can reach a point where it seems impossible to continue as emotional strains amount (Cormio et al, 2014;Pan and Lin, 2022;Rosario-Ramos et al, 2022). In turn, caregivers' needs are interconnected with patients' well-being and will not just decrease their quality of life but negatively impact the patient's health outcomes (Milbury et al, 2013;Fiest et al, 2018;Leykum et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

Fernandes

Domingos²,

Castro³

et al. 2023

Front. Psychol.

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Cancer has an associated burden that continues to grow, affecting patients, family caregivers, and the individual’s community. The family caregivers’ unmet needs may harmfully jeopardize their well-being and the patient’s health outcomes. Therefore, it is essential to understand the needs and expectations of family caregivers of cancer patients to develop and improve care practices. The present study aims to explore the needs and expectations of family caregivers of cancer patients in palliative care. This qualitative, descriptive exploratory study will use purposive sampling to recruit family caregivers and healthcare professionals from the palliative care units of two hospital centers in Lisbon and Tagus Valley. First, the Focus group will be performed until data saturation occurs. Then, a conventional thematic analysis will be applied to analyze data with the help of the coding software QDA Miner Lite database. This study’s findings will help identify gaps in care and provide data that can support healthcare professionals in providing evidence-based centered care to family caregivers. It can also generate knowledge that may help stakeholders to develop a comprehensive support system for cancer survivors in palliative care and their family caregivers.

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Recommendations to Improve Health Outcomes Through Recognizing and Supporting Caregivers

Cited by 23 publications

References 29 publications

Patient Experience at US Hospitals Following the Caregiver Advise, Record, Enable (CARE) Act

Patient Experience at US Hospitals Following the Caregiver Advise, Record, Enable (CARE) Act

Financial burden in adults with chronic liver disease: A scoping review

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

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