{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,14]],"date-time":"2026-02-14T02:14:44Z","timestamp":1771035284925,"version":"3.50.1"},"reference-count":40,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2024,6,13]],"date-time":"2024-06-13T00:00:00Z","timestamp":1718236800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\">\n<jats:title>Background<\/jats:title>\n<jats:p>Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient\u2019s child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec002\">\n<jats:title>Methods<\/jats:title>\n<jats:p>Analysis of survey data of U.S. cancer caregivers conducted by Cancer<jats:italic>Care<\/jats:italic>\u00ae in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec003\">\n<jats:title>Results<\/jats:title>\n<jats:p>Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48).<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec004\">\n<jats:title>Conclusions<\/jats:title>\n<jats:p>How cancer caregivers and patients are related to each other shapes caregivers\u2019 medical decision-making. Adult-children\u2019s and spouses\u2019 probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient\u2019s and caregiver\u2019s relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0300450","type":"journal-article","created":{"date-parts":[[2024,6,13]],"date-time":"2024-06-13T17:30:23Z","timestamp":1718299823000},"page":"e0300450","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":1,"title":["A comparison of adult-child and spousal cancer caregivers\u2019 participation in medical decisions"],"prefix":"10.1371","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0710-6719","authenticated-orcid":true,"given":"Anny T. H. R.","family":"Fenton","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katherine A.","family":"Ornstein","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erin E.","family":"Kent","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ellen","family":"Miller-Sonet","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexi A.","family":"Wright","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6764-0254","authenticated-orcid":true,"given":"J. Nicholas","family":"Dionne-Odom","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2024,6,13]]},"reference":[{"issue":"3","key":"pone.0300450.ref001","first-page":"1","article-title":"How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study","volume":"14","author":"JN Dionne-Odom","year":"2019","journal-title":"PLoS ONE"},{"issue":"7","key":"pone.0300450.ref002","doi-asserted-by":"crossref","first-page":"1079","DOI":"10.1002\/cncr.29064","article-title":"The role of families in decisions regarding cancer treatments","volume":"121","author":"GS Hobbs","year":"2015","journal-title":"Cancer"},{"issue":"6","key":"pone.0300450.ref003","first-page":"823","article-title":"Family Presence in Routine Medical Visits: A Meta-Analytical Review","volume":"72","author":"JL Wolff","year":"2011","journal-title":"Soc Sci Med 1982"},{"issue":"2","key":"pone.0300450.ref004","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1037\/0278-6133.23.2.207","article-title":"Social Support and Patient Adherence to Medical Treatment: A Meta-Analysis","volume":"23","author":"MR DiMatteo","year":"2004","journal-title":"Health Psychol"},{"issue":"7","key":"pone.0300450.ref005","doi-asserted-by":"crossref","first-page":"1583","DOI":"10.1016\/j.socscimed.2004.08.004","article-title":"Autonomy-related behaviors of patient companions and their effect on decision-making activity in geriatric primary care visits","volume":"60","author":"ML Clayman","year":"2005","journal-title":"Soc Sci Med"},{"issue":"12","key":"pone.0300450.ref006","doi-asserted-by":"crossref","first-page":"2172","DOI":"10.1016\/j.pec.2017.08.003","article-title":"Treatment decision-making in chronic diseases: what are the family members\u2019 roles, needs and attitudes? A systematic review","volume":"100","author":"K Lamore","year":"2017","journal-title":"Patient Educ Couns"},{"key":"pone.0300450.ref007","unstructured":"National Alliance For Caregiving. Cancer caregiving in the US: an intense, episodic, and challenging care experience. Bethesda, MD; 2016."},{"issue":"7","key":"pone.0300450.ref008","doi-asserted-by":"crossref","first-page":"1146","DOI":"10.1016\/j.pec.2016.01.014","article-title":"Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences","volume":"99","author":"R Laidsaar-Powell","year":"2016","journal-title":"Patient Educ Couns"},{"issue":"4","key":"pone.0300450.ref009","doi-asserted-by":"crossref","first-page":"391","DOI":"10.1016\/j.jgo.2021.11.003","article-title":"Factors influencing family involvement in treatment decision-making for older patients with cancer: A scoping review","volume":"13","author":"BL Dijkman","year":"2022","journal-title":"J Geriatr Oncol"},{"key":"pone.0300450.ref010","first-page":"34","volume-title":"Cancer Caregivers","author":"K. Litzelman","year":"2019"},{"key":"pone.0300450.ref011","doi-asserted-by":"crossref","first-page":"2624","DOI":"10.1002\/pon.3339","article-title":"Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists","volume":"22","author":"DW Shin","year":"2013","journal-title":"Psychooncology"},{"key":"pone.0300450.ref012","first-page":"108","article-title":"Dyadic perceptions of the decision process in families living with lung cancer","author":"LM Miller","year":"2017","journal-title":"In: Oncology nursing forum. NIH Public Access"},{"issue":"3","key":"pone.0300450.ref013","doi-asserted-by":"crossref","first-page":"294","DOI":"10.1016\/j.jpainsymman.2006.11.012","article-title":"Cancer Caregivers\u2019 Quality of Life: Effects of Gender, Relationship, and Appraisal","volume":"34","author":"Y Kim","year":"2007","journal-title":"J Pain Symptom Manage"},{"issue":"10","key":"pone.0300450.ref014","doi-asserted-by":"crossref","first-page":"2015","DOI":"10.1002\/cncr.34164","article-title":"Comparing adult\u2010child and spousal caregiver burden and potential contributors","volume":"128","author":"ATHR Fenton","year":"2022","journal-title":"Cancer"},{"key":"pone.0300450.ref015","article-title":"Trying to Do It all: Adult-Child Cancer Caregivers\u2019 Experiences Caring for a Parent with Advanced Cancer","author":"Ornstein KA Fenton ATHR","year":"2022","journal-title":"In Portland, Oregon"},{"issue":"3","key":"pone.0300450.ref016","doi-asserted-by":"crossref","first-page":"373","DOI":"10.1016\/S0277-9536(96)00353-X","article-title":"reflexivity and the medical encounter","volume":"45","author":"Lupton D. Consumerism","year":"1997","journal-title":"Soc Sci Med"},{"key":"pone.0300450.ref017","unstructured":"CancerCare. Cancer Caregivers: National Research Report on Shared Treatment Decision-Making [Internet]. CancerCare; 2022 [cited 2023 Jan 6]. Available from: https:\/\/media.cancercare.org\/documents\/272\/original\/CancerCare_DecisionMakingReport_20220715.pdf"},{"key":"pone.0300450.ref018","article-title":"Bias reported by family caregivers in support received when assisting patients with cancer\u2010related decision\u2010making","author":"JN Dionne\u2010Odom","year":"2022","journal-title":"Cancer Med"},{"key":"pone.0300450.ref019","unstructured":"Rural-Urban Commuting Area (RUCA) codes\u2013WWAMI RHRC [Internet]. [cited 2021 Sep 26]. Available from: https:\/\/familymedicine.uw.edu\/rhrc\/ruca\/"},{"issue":"2","key":"pone.0300450.ref020","doi-asserted-by":"crossref","first-page":"652","DOI":"10.1111\/j.0006-341X.1999.00652.x","article-title":"Predictive margins with survey data","volume":"55","author":"BI Graubard","year":"1999","journal-title":"Biometrics"},{"key":"pone.0300450.ref021","article-title":"Caregiver-Reported Roles in Treatment Decision Making in Advanced Cancer and Associated Caregiving Burden and Psychological Distress: A Longitudinal Study","author":"S Ozdemir","year":"2022","journal-title":"Med Decis Making"},{"issue":"11","key":"pone.0300450.ref022","doi-asserted-by":"crossref","first-page":"2624","DOI":"10.1002\/pon.3339","article-title":"Preferences for and experiences of family involvement in cancer treatment decision-making: Patient-caregiver dyads study","volume":"22","author":"DW Shin","year":"2013","journal-title":"Psychooncology"},{"issue":"9","key":"pone.0300450.ref023","first-page":"354","article-title":"Care and Treatment Decisions in Cancer: The Role of the Family Caregiver","volume":"9","author":"M Longacre","year":"2018","journal-title":"J Oncol Navig Surviv"},{"issue":"3","key":"pone.0300450.ref024","doi-asserted-by":"crossref","first-page":"879","DOI":"10.1007\/s00520-016-3476-8","article-title":"Chemotherapy treatment decision-making experiences of older adults with cancer, their family members, oncologists and family physicians: a mixed methods study","volume":"25","author":"MTE Puts","year":"2017","journal-title":"Support Care Cancer"},{"issue":"13","key":"pone.0300450.ref025","doi-asserted-by":"crossref","first-page":"1987","DOI":"10.1002\/cncr.29939","article-title":"Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving","volume":"122","author":"EE Kent","year":"2016","journal-title":"Cancer"},{"issue":"4","key":"pone.0300450.ref026","doi-asserted-by":"crossref","first-page":"318","DOI":"10.3322\/caac.21396","article-title":"A review of family caregiving intervention trials in oncology","volume":"67","author":"B Ferrell","year":"2017","journal-title":"CA Cancer J Clin"},{"key":"pone.0300450.ref027","article-title":"Cancer caregivers\u2019 prognostic and end-of-life communication needs and experiences and their impact","author":"A Fenton","year":"2022","journal-title":"J Pain Symptom Manage"},{"key":"pone.0300450.ref028","author":"EE Kent","year":"2016","journal-title":"Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the US study"},{"issue":"3","key":"pone.0300450.ref029","doi-asserted-by":"crossref","first-page":"169","DOI":"10.1097\/NCC.0000000000000311","article-title":"Implementation of a psychoeducational program for cancer survivors and family caregivers at a cancer support community affiliate: A pilot effectiveness study","volume":"39","author":"B Dockham","year":"2016","journal-title":"Cancer Nurs"},{"issue":"10","key":"pone.0300450.ref030","doi-asserted-by":"crossref","first-page":"1261","DOI":"10.1037\/a0034216","article-title":"CHESS improves cancer caregivers\u2019 burden and mood: Results of an eHealth RCT","volume":"33","author":"LL DuBenske","year":"2014","journal-title":"Health Psychol"},{"issue":"1","key":"pone.0300450.ref031","doi-asserted-by":"crossref","first-page":"E8","DOI":"10.1188\/06.ONF.E8-E17","article-title":"Seeking and Managing Hope: Patients\u2019 Experiences Using the Internet for Cancer Care","volume":"33","author":"SS Dickerson","year":"2006","journal-title":"Oncol Nurs Forum"},{"key":"pone.0300450.ref032","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1007\/s10549-008-0175-2","article-title":"When genomic and standard test results diverge: implications for breast cancer patients\u2019 preference for chemotherapy","volume":"117","author":"N Brewer","year":"2008","journal-title":"Breast Cancer Res Treat"},{"key":"pone.0300450.ref033","doi-asserted-by":"crossref","DOI":"10.3402\/qhw.v7i0.18523","article-title":"Patient decision making in the face of conflicting medication information","author":"E Elstad","year":"2012","journal-title":"Int J Qual Stud Health Well-Being"},{"key":"pone.0300450.ref034","doi-asserted-by":"crossref","first-page":"102904","DOI":"10.1016\/j.cities.2020.102904","article-title":"Determinants of broadband access and affordability: An analysis of a community survey on the digital divide","volume":"106","author":"CG Reddick","year":"2020","journal-title":"Cities Lond Engl"},{"key":"pone.0300450.ref035","volume-title":"The social transformation of medicine: The rise of a sovereign profession and the making of a vast industry","author":"P. Starr","year":"1982"},{"key":"pone.0300450.ref036","volume-title":"A sociology of family life: Change and diversity in intimate relations","author":"D Chambers","year":"2021"},{"key":"pone.0300450.ref037","first-page":"173","article-title":"The Influence of Siblings Upon Beliefs and Decision Making","author":"VG Cicirelli","year":"1992","journal-title":"Fam Caregiving Auton Paternalistic Decis Mak"},{"issue":"12","key":"pone.0300450.ref038","doi-asserted-by":"crossref","first-page":"1673","DOI":"10.1177\/1049732308327195","article-title":"Making sense of sibling responsibility for family caregiving","volume":"18","author":"J Willyard","year":"2008","journal-title":"Qual Health Res"},{"issue":"1","key":"pone.0300450.ref039","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1177\/0003122416686521","article-title":"Own Gender, Sibling\u2019s Gender, Parent\u2019s Gender: The Division of Elderly Parent Care among Adult Children","volume":"82","author":"A. Grigoryeva","year":"2017","journal-title":"Am Sociol Rev"},{"issue":"2","key":"pone.0300450.ref040","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1093\/geront\/42.2.237","article-title":"Issues of Race, Ethnicity, and Culture in Caregiving Research: A 20-Year Review (1980\u20132000)","volume":"42","author":"P Dilworth-Anderson","year":"2002","journal-title":"The Gerontologist"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0300450","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,13]],"date-time":"2024-06-13T17:30:46Z","timestamp":1718299846000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0300450"}},"subtitle":[],"editor":[{"given":"Nicola","family":"Diviani","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2024,6,13]]},"references-count":40,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2024,6,13]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0300450","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,6,13]]}}}