{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T04:50:33Z","timestamp":1787028633949,"version":"build-2736575974"},"reference-count":37,"publisher":"MDPI AG","issue":"4","license":[{"start":{"date-parts":[[2023,2,18]],"date-time":"2023-02-18T00:00:00Z","timestamp":1676678400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"AstraZeneca Pharmaceuticals LP"},{"name":"The Leukemia &amp; Lymphoma Society"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management\u2014a role that has been heightened during the COVID-19 pandemic given the healthcare system\u2019s reliance on frontline family caregivers and CLL patients\u2019 increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn\u2019t work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive\/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety\/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.<\/jats:p>","DOI":"10.3390\/jcm12041648","type":"journal-article","created":{"date-parts":[[2023,2,20]],"date-time":"2023-02-20T02:02:09Z","timestamp":1676858529000},"page":"1648","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Understanding the Impact of COVID-19 on Chronic Lymphocytic Leukemia (CLL) Caregiving and Related Resource Needs"],"prefix":"10.3390","volume":"12","author":[{"given":"Diliara","family":"Bagautdinova","sequence":"first","affiliation":[{"name":"Department of Advertising, College of Journalism and Communications, University of Florida, Gainesville, FL 32611, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1443-1392","authenticated-orcid":false,"given":"Kelsey C.","family":"Bacharz","sequence":"additional","affiliation":[{"name":"Department of Clinical & Health Psychology, College of Public Health & Health Professions, University of Florida, Gainesville, FL 32610, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9335-1496","authenticated-orcid":false,"given":"Carma L.","family":"Bylund","sequence":"additional","affiliation":[{"name":"Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, FL 32610, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Sae-Hau","sequence":"additional","affiliation":[{"name":"The Leukemia & Lymphoma Society, Rye Brook, NY 10573, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisa S.","family":"Weiss","sequence":"additional","affiliation":[{"name":"The Leukemia & Lymphoma Society, Rye Brook, NY 10573, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle","family":"Rajotte","sequence":"additional","affiliation":[{"name":"The Leukemia & Lymphoma Society, Rye Brook, NY 10573, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Greg","family":"Lincoln","sequence":"additional","affiliation":[{"name":"P.K. Younge Developmental Research School, University of Florida, Gainesville, FL 32601, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Taylor S.","family":"Vasquez","sequence":"additional","affiliation":[{"name":"Department of Advertising, College of Journalism and Communications, University of Florida, Gainesville, FL 32611, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6783-9666","authenticated-orcid":false,"given":"Naomi D.","family":"Parker","sequence":"additional","affiliation":[{"name":"Department of Advertising, College of Journalism and Communications, University of Florida, Gainesville, FL 32611, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kevin B.","family":"Wright","sequence":"additional","affiliation":[{"name":"Department of Communication, College of Humanities and Social Sciences, George Mason University, Fairfax, VA 22030, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3903-4278","authenticated-orcid":false,"given":"Carla L.","family":"Fisher","sequence":"additional","affiliation":[{"name":"Department of Advertising, College of Journalism and Communications, University of Florida, Gainesville, FL 32611, USA"},{"name":"Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, FL 32610, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2023,2,18]]},"reference":[{"key":"ref_1","unstructured":"(2023, January 14). 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