{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T16:11:22Z","timestamp":1791994282068,"version":"4.4.0"},"reference-count":28,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,7,2]],"date-time":"2023-07-02T00:00:00Z","timestamp":1688256000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision\u2010making.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Family caregiver\u2010reported data were analyzed from a national survey conducted in the United States by CancerCare\u00ae (2\/2021\u20137\/2021). Four select\u2010all\u2010that\u2010apply caregiver roles were explored: (1) observer (patient as primary decision\u2010maker); (2) primary decision\u2010maker; (3) shared decision\u2010maker with patient\u00a0and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment\u00a0and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined.\n                      <jats:italic>\u03c7<\/jats:italic>\n                      <jats:sup>2<\/jats:sup>\n                      and regression analyses were used to assess associations between roles, decision areas, challenges\u00a0and caregiver sociodemographics.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision\u2010making role, 53.9% a shared decision\u2010making role\u00a0and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced \u22651 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic\/Latino\/a was the strongest predictor of facing at least one challenge (\n                      <jats:italic>b<\/jats:italic>\n                      \u2009=\u2009\u22120.581, Wald\u2009=\u200910.69,\n                      <jats:italic>p<\/jats:italic>\n                      \u2009&lt;\u2009.01).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Most caregivers were involved in patients' cancer treatment decisions. The major challenge\u00a0was\u00a0not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic\/Latino\/a caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>The CancerCare\u00ae survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision\u2010making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.13805","type":"journal-article","created":{"date-parts":[[2023,7,3]],"date-time":"2023-07-03T00:24:50Z","timestamp":1688343890000},"page":"1965-1976","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":39,"title":["Family caregiver roles and challenges in assisting patients with cancer treatment decision\u2010making: Analysis of data from a national survey"],"prefix":"10.1111","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6764-0254","authenticated-orcid":false,"given":"James N.","family":"Dionne\u2010Odom","sequence":"first","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"},{"name":"Division of Gerontology, Geriatrics, and Palliative Care, School of Medicine University of Alabama at Birmingham Birmingham Alabama USA"},{"name":"Center for Palliative and Supportive Care University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin E.","family":"Kent","sequence":"additional","affiliation":[{"name":"Department of Health Policy and Management, Gillings School of Global Public Health University of North Carolina at Chapel Hill Chapel Hill North Carolina USA"},{"name":"Linebrger Comprehensive Cancer Center University of North Carolina at Chapel Hill Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gabrielle B.","family":"Rocque","sequence":"additional","affiliation":[{"name":"Division of Hematology\u2010Oncology, School of Medicine University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andres","family":"Azuero","sequence":"additional","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin R.","family":"Harrell","sequence":"additional","affiliation":[{"name":"Department of Psychology University of Alabama Tuscaloosa Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shena","family":"Gazaway","sequence":"additional","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"},{"name":"Center for Palliative and Supportive Care University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rhiannon D.","family":"Reed","sequence":"additional","affiliation":[{"name":"Comprehensive Transplant Institute University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Reed W.","family":"Bratches","sequence":"additional","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Avery C.","family":"Bechthold","sequence":"additional","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kyungmi","family":"Lee","sequence":"additional","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frank","family":"Puga","sequence":"additional","affiliation":[{"name":"Department of Acute, Chronic and Continuing Care, School of Nursing University of Alabama at Birmingham Birmingham Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellen","family":"Miller\u2010Sonet","sequence":"additional","affiliation":[{"name":"CancerCare New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine A.","family":"Ornstein","sequence":"additional","affiliation":[{"name":"Center for Equity in Aging, School of Nursing Johns Hopkins University Baltimore Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,2]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0212967"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2012.11.007"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/geroni\/igab020"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29064"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2017.08.003"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2015.1375"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.168.13.1409"},{"key":"e_1_2_10_9_1","unstructured":"CancerCare. Cancer caregivers: national research report on shared treatment decision\u2010making.2022. 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