{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,13]],"date-time":"2026-05-13T17:05:56Z","timestamp":1778691956993,"version":"3.51.4"},"reference-count":15,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,8,19]],"date-time":"2024-08-19T00:00:00Z","timestamp":1724025600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,8,19]],"date-time":"2024-08-19T00:00:00Z","timestamp":1724025600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Palliat Care"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer?<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services\/staff, Clinician-Patient relationship\/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time\/burden, Psychological support\u00a0-informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12904-024-01544-x","type":"journal-article","created":{"date-parts":[[2024,8,19]],"date-time":"2024-08-19T06:37:38Z","timestamp":1724049458000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Updating a conceptual model of effective symptom management in palliative care to include patient and carer perspective: a qualitative study"],"prefix":"10.1186","volume":"23","author":[{"given":"Emma J.","family":"Chapman","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carole A.","family":"Paley","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Simon","family":"Pini","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucy E.","family":"Ziegler","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2024,8,19]]},"reference":[{"issue":"1","key":"1544_CR1","doi-asserted-by":"publisher","first-page":"17","DOI":"10.1186\/s12904-022-00904-9","volume":"21","author":"EJ Chapman","year":"2022","unstructured":"Chapman EJ, Pini S, Edwards Z, Elmokhallalati Y, Murtagh FEM, Bennett MI. Conceptualising effective symptom management in palliative care: a novel model derived from qualitative data. BMC Palliat Care. 2022;21(1):17.","journal-title":"BMC Palliat Care"},{"key":"1544_CR2","doi-asserted-by":"publisher","unstructured":"Cosgrove D, Connolly M, Monnery D. Holistic care needs in an inpatient oncology unit: patients versus professionals. BMJ Support Palliat Care.\u00a02023. Published Online First: https:\/\/doi.org\/10.1136\/spcare-2023-004617.","DOI":"10.1136\/spcare-2023-004617"},{"issue":"731","key":"1544_CR3","doi-asserted-by":"publisher","first-page":"e443","DOI":"10.3399\/BJGP.2022.0315","volume":"73","author":"Y ElMokhallalati","year":"2023","unstructured":"ElMokhallalati Y, Chapman E, Relton SD, Bennett MI, Ziegler L. Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England. Br J Gen Pract. 2023;73(731):e443\u201350.","journal-title":"Br J Gen Pract"},{"key":"1544_CR4","doi-asserted-by":"publisher","first-page":"1213906","DOI":"10.3389\/fonc.2023.1213906","volume":"13","author":"E Borelli","year":"2023","unstructured":"Borelli E, Bigi S, Potenza L, Gilioli F, Efficace F, Porro CA, et al. Caregiver\u2019s quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care. Front Oncol. 2023;13:1213906.","journal-title":"Front Oncol"},{"issue":"1","key":"1544_CR5","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1177\/0269216317739806","volume":"32","author":"J McDonald","year":"2018","unstructured":"McDonald J, Swami N, Pope A, Hales S, Nissim R, Rodin G, et al. Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care. Palliat Med. 2018;32(1):69\u201378.","journal-title":"Palliat Med"},{"key":"1544_CR6","unstructured":"Office for National Statistics (ONS). Statitical bulletin, Familes and households in the UK:2022 2023 [updated 18th May 2023. Available from: https:\/\/www.ons.gov.uk\/peoplepopulationandcommunity\/birthsdeathsandmarriages\/families\/bulletins\/familiesandhouseholds\/2022."},{"key":"1544_CR7","doi-asserted-by":"publisher","unstructured":"Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013;2013(6):CD007760. https:\/\/doi.org\/10.1002\/14651858.CD007760.pub2.","DOI":"10.1002\/14651858.CD007760.pub2"},{"issue":"2","key":"1544_CR8","doi-asserted-by":"publisher","first-page":"280","DOI":"10.1111\/nuf.12328","volume":"54","author":"S Choi","year":"2019","unstructured":"Choi S, Seo J. Analysis of caregiver burden in palliative care: an integrated review. Nurs Forum. 2019;54(2):280\u201390.","journal-title":"Nurs Forum"},{"key":"1544_CR9","doi-asserted-by":"crossref","unstructured":"Pollock K, Wilson E, Caswell G, Latif A, Caswell A, Avery A, et al. Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study. NIHR J Libr. 2021.","DOI":"10.3310\/hsdr09140"},{"issue":"2","key":"1544_CR10","doi-asserted-by":"publisher","first-page":"369","DOI":"10.1017\/S1478951514000455","volume":"13","author":"H Atkin","year":"2015","unstructured":"Atkin H, McDonald C, Murray CD. The communication experiences of patients with palliative care needs: a systematic review and meta-synthesis of qualitative findings. 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Soc Sci Med. 2003;56(1):95\u2013109.","journal-title":"Soc Sci Med"}],"updated-by":[{"DOI":"10.1186\/s12904-024-01571-8","type":"correction","label":"Correction","source":"publisher","updated":{"date-parts":[[2024,10,4]],"date-time":"2024-10-04T00:00:00Z","timestamp":1728000000000}}],"container-title":["BMC Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-024-01544-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-024-01544-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-024-01544-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,4]],"date-time":"2024-10-04T14:03:11Z","timestamp":1728050591000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcpalliatcare.biomedcentral.com\/articles\/10.1186\/s12904-024-01544-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,19]]},"references-count":15,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["1544"],"URL":"https:\/\/doi.org\/10.1186\/s12904-024-01544-x","relation":{"correction":[{"id-type":"doi","id":"10.1186\/s12904-024-01571-8","asserted-by":"object"}]},"ISSN":["1472-684X"],"issn-type":[{"value":"1472-684X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,19]]},"assertion":[{"value":"8 March 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 August 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 August 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 October 2024","order":4,"name":"change_date","label":"Change Date","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Update","order":5,"name":"change_type","label":"Change Type","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Change the word from \u201csponsor\u201c to \u201cfunder\u201c in the \"Funding section\".","order":6,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 October 2024","order":7,"name":"change_date","label":"Change Date","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Correction","order":8,"name":"change_type","label":"Change Type","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"A Correction to this paper has been published:","order":9,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"https:\/\/doi.org\/10.1186\/s12904-024-01571-8","URL":"https:\/\/doi.org\/10.1186\/s12904-024-01571-8","order":10,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethical approval was granted by a UK research ethics committee ( North of Scotland (2) Research Ethics Committee (20\/NS\/0086)). All participants gave informed consent for participation and for the use of their direct quotations in research publications.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Participants gave consent for publication of their direct quotations.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"208"}}