{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,4]],"date-time":"2026-04-04T14:30:57Z","timestamp":1775313057815,"version":"3.50.1"},"reference-count":25,"publisher":"Public Library of Science (PLoS)","issue":"10","license":[{"start":{"date-parts":[[2024,10,3]],"date-time":"2024-10-03T00:00:00Z","timestamp":1727913600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Robert White Legacy Fund"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\">\n<jats:title>Objective<\/jats:title>\n<jats:p>Shared decision making is important when decisions are preference sensitive, as in incurable cancer. A prerequisite for shared decision making is health literacy, which is essential to facilitate good understanding of an individual\u2019s current situation, the decision to be made, and the options available to them. This study sought to learn about the challenges for shared decision making faced by patients with incurable cancer and health literacy difficulties.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec002\">\n<jats:title>Methods<\/jats:title>\n<jats:p>Semi-structured telephone and video interviews were used to collect data on participants\u2019 experiences, decision making, and challenges faced. Study procedures followed health literacy principles, with information offered in various formats to suit individuals\u2019 preferences, the use of a verbal consent process, and flexibility in whether interviews were conducted over telephone or video call. Data were analysed using Framework Analysis (Ritchie et al. 2003), with initial verbatim transcription of interviews, iterative development of the analysis framework, indexing using Nvivo 12 software and summarising of the data before systematic categorisation and development of final themes.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec003\">\n<jats:title>Results<\/jats:title>\n<jats:p>Twenty participants (aged 31\u201380, of whom 13 male) with a variety of cancers (including breast, central nervous system, gastrointestinal, gynaecological, lung, head and neck, and urological) and experience of a range of treatments were interviewed. Seven themes were identified, including: supportive staff in an imperfect system, additional pressure from COVID-19, in the expert\u2019s hands, treatment not so bad, emotional hurdles, accessing information to further understanding and wanting to be a good patient.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec004\">\n<jats:title>Conclusion<\/jats:title>\n<jats:p>In order to support patients with incurable cancer and health literacy difficulties to become involved in decisions about their care, we must address the emotional, social and informational challenges they face. Recommendations for achieving this include addressing peoples\u2019 emotional needs, facilitating control over information, developing a partnership, involving others, and organisational changes.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0309104","type":"journal-article","created":{"date-parts":[[2024,10,3]],"date-time":"2024-10-03T17:32:54Z","timestamp":1727976774000},"page":"e0309104","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":4,"title":["The experiences and decision making of patients with incurable cancer and health literacy difficulties"],"prefix":"10.1371","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4656-101X","authenticated-orcid":true,"given":"Chloe E.","family":"Holden","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard","family":"Wagland","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Am\u00e9lie","family":"Harle","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sally","family":"Wheelwright","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2024,10,3]]},"reference":[{"key":"pone.0309104.ref001","doi-asserted-by":"crossref","unstructured":"International Union for Health Promotion and Education. IUHPE Position Statement on Health Literacy: a practical vision for a health literate world. Global Health Promotion. 2018;25(4):79\u201388. doi: 10.1177\/1757975918814421.","DOI":"10.1177\/1757975918814421"},{"issue":"3","key":"pone.0309104.ref002","doi-asserted-by":"crossref","first-page":"259","DOI":"10.1093\/heapro\/15.3.259","article-title":"Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century","volume":"15","author":"D. Nutbeam","year":"2000","journal-title":"Health Promotion International"},{"issue":"11","key":"pone.0309104.ref003","doi-asserted-by":"crossref","first-page":"e0259815","DOI":"10.1371\/journal.pone.0259815","article-title":"The role of health literacy in cancer care: A mixed studies systematic review","volume":"16","author":"CE Holden","year":"2021","journal-title":"PLoS One"},{"issue":"1","key":"pone.0309104.ref004","doi-asserted-by":"crossref","DOI":"10.1186\/s12913-015-0907-z","article-title":"Conceptualising patient empowerment: a mixed methods study","volume":"15","author":"P Bravo","year":"2015","journal-title":"BMC Health Services Research"},{"issue":"1","key":"pone.0309104.ref005","doi-asserted-by":"crossref","first-page":"80","DOI":"10.1186\/1471-2458-12-80","article-title":"Health literacy and public health: A systematic review and integration of definitions and models","volume":"12","author":"K S\u00f8rensen","year":"2012","journal-title":"BMC Public Health"},{"issue":"1","key":"pone.0309104.ref006","doi-asserted-by":"crossref","first-page":"130","DOI":"10.1186\/1471-2458-12-130","article-title":"The development of health literacy in patients with a long-term health condition: the health literacy pathway model","volume":"12","author":"M Edwards","year":"2012","journal-title":"BMC Public Health"},{"key":"pone.0309104.ref007","volume-title":"Making shared decision-making a reality","author":"King\u2019s Fund","year":"2011"},{"issue":"2","key":"pone.0309104.ref008","doi-asserted-by":"crossref","first-page":"360","DOI":"10.1016\/j.pec.2018.09.017","article-title":"The relationship between health literacy and perceived shared decision making in patients with breast cancer","volume":"102","author":"HN Shen","year":"2019","journal-title":"Patient Education & Counseling"},{"issue":"2","key":"pone.0309104.ref009","doi-asserted-by":"crossref","first-page":"249","DOI":"10.1158\/1055-9965.EPI-06-0525","article-title":"Retention and use of breast cancer recurrence risk information from genomic tests: the role of health literacy","volume":"16","author":"SE Lillie","year":"2007","journal-title":"Cancer Epidemiology, Biomarkers & Prevention"},{"key":"pone.0309104.ref010","doi-asserted-by":"crossref","first-page":"1995","DOI":"10.2147\/PPA.S217561","article-title":"Factors Influencing Implementation Of Shared Medical Decision Making In Patients With Cancer","volume":"13","author":"H-L Chang","year":"2019","journal-title":"Patient preference and adherence"},{"issue":"12","key":"pone.0309104.ref011","doi-asserted-by":"crossref","first-page":"2066","DOI":"10.1002\/cncr.31991","article-title":"Investigation of a multimedia, computer-based approach to improve knowledge, attitudes, self-efficacy, and receptivity to cancer clinical trials among newly diagnosed patients with diverse health literacy skills","volume":"125","author":"BN Polite","year":"2019","journal-title":"Cancer"},{"issue":"11","key":"pone.0309104.ref012","doi-asserted-by":"crossref","first-page":"2235","DOI":"10.1016\/j.pec.2020.07.015","article-title":"Text-only and picture conversation aids both supported shared decision making for breast cancer surgery: Analysis from a cluster randomized trial","volume":"103","author":"RW Yen","year":"2020","journal-title":"Patient Education & Counseling"},{"key":"pone.0309104.ref013","unstructured":"Weiss BD. Health literacy. American Medical Association. 2003."},{"key":"pone.0309104.ref014","unstructured":"Health Research Authority. Applying a proportionate approach to the process of seeking consent v1.02. 2018."},{"key":"pone.0309104.ref015","unstructured":"Health Education England. Health literacy \u2018how to\u2019 guide. 2017."},{"issue":"5","key":"pone.0309104.ref016","doi-asserted-by":"crossref","first-page":"561","DOI":"10.1007\/s11606-008-0520-5","article-title":"Validation of Screening Questions for Limited Health Literacy in a Large VA Outpatient Population","volume":"23","author":"LD Chew","year":"2008","journal-title":"Journal of General Internal Medicine"},{"key":"pone.0309104.ref017","author":"J Ritchie","year":"2003","journal-title":"Qualitative Research Practice: A Guide for Social Science Students and Researchers: SAGE"},{"key":"pone.0309104.ref018","article-title":"Qualitative data analysis for applied policy research","volume":"173","author":"J Ritchie","year":"2002","journal-title":"Analyzing Qualitative Data"},{"issue":"4","key":"pone.0309104.ref019","doi-asserted-by":"crossref","first-page":"1893","DOI":"10.1007\/s11135-017-0574-8","article-title":"Saturation in qualitative research: exploring its conceptualization and operationalization","volume":"52","author":"B Saunders","year":"2018","journal-title":"Qual Quant"},{"issue":"5","key":"pone.0309104.ref020","first-page":"219","article-title":"Patients\u2019 memory for medical information","volume":"96","author":"RP Kessels","year":"2003","journal-title":"Journal of the Royal Society of Medicine"},{"issue":"9","key":"pone.0309104.ref021","doi-asserted-by":"crossref","first-page":"4081","DOI":"10.1002\/cam4.2331","article-title":"Advanced cancer patients\u2019 understanding of prognostic information: Applying insights from psychological research","volume":"8","author":"HM Derry","year":"2019","journal-title":"Cancer Med"},{"issue":"1","key":"pone.0309104.ref022","doi-asserted-by":"crossref","first-page":"459","DOI":"10.1186\/s12913-017-2366-1","article-title":"Managing expectations: cognitive authority and experienced control in complex healthcare processes","volume":"17","author":"KJ Hunt","year":"2017","journal-title":"BMC Health Services Research"},{"key":"pone.0309104.ref023","doi-asserted-by":"crossref","first-page":"97","DOI":"10.1016\/j.ejon.2017.08.007","article-title":"Patients\u2019 experience of decision-making and receiving information during radiation therapy: A qualitative study","volume":"30","author":"SK Smith","year":"2017","journal-title":"European Journal of Oncology Nursing"},{"key":"pone.0309104.ref024","doi-asserted-by":"crossref","unstructured":"Geurts EMA, Pittens CACM, Boland G, van Dulmen S, Noordman J. Persuasive communication in medical decision-making during consultations with patients with limited health literacy in hospital-based palliative care. Patient Education and Counseling. 2022;105(5):1130\u20137. doi: https:\/\/doi.org\/10.1016\/j.pec.2021.08.022.","DOI":"10.1016\/j.pec.2021.08.022"},{"issue":"7","key":"pone.0309104.ref025","doi-asserted-by":"crossref","first-page":"e2223571","DOI":"10.1001\/jamanetworkopen.2022.23571","article-title":"Association of Health Literacy and Area Deprivation With Initiation and Completion of Telehealth Visits in Adult Medicine Clinics Across a Large Health Care System","volume":"5","author":"SH Brown","year":"2022","journal-title":"JAMA Netw Open"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0309104","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,3]],"date-time":"2024-10-03T17:33:05Z","timestamp":1727976785000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0309104"}},"subtitle":[],"editor":[{"given":"Niraj","family":"Babu","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2024,10,3]]},"references-count":25,"journal-issue":{"issue":"10","published-online":{"date-parts":[[2024,10,3]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0309104","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,10,3]]}}}