{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,16]],"date-time":"2025-12-16T12:52:13Z","timestamp":1765889533569,"version":"3.46.0"},"reference-count":17,"publisher":"BMJ","content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Support Palliat Care"],"accepted":{"date-parts":[[2025,11,12]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The Association for Palliative Medicine (APM) ran a national Specialist Palliative Care (SPC) service evaluation from 2013, using the Family Satisfaction with End-of-Life Care (FAMCARE-2) questionnaire to measure the satisfaction of bereaved main caregivers with SPC services.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>This feature article reviews ten years of the FAMCARE-2 audit (2013\u20132022), summarising data from bereaved carers via SPC teams alongside a one-off survey involving the service leads.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>During the decade, 573 SPC teams across the UK returned 12\u2009573 completed FAMCARE-2 questionnaires, representing 160 SPC services, with a mean of 1048 questionnaires per annum (804\u20131668). Responses spanned three settings: hospice (48%), home (39%) and hospital (13%).<\/jats:p>\n                    <jats:p>Bereaved caregivers reported highest satisfaction for patients\u2019 dignity; 92.2% of respondents were satisfied, while dissatisfaction was highest with the speed deceased patients\u2019 symptoms were treated (6.2%). There was no significant difference in satisfaction rate between different SPC teams (home, hospital, hospice) with limited year-to-year variation in responses (Kruskal-Wallis test \u03b72: \u22120.17).<\/jats:p>\n                    <jats:p>Participation by community-based home care teams increased during the 10-year period, but reduced for hospital specialist teams. The number of questionnaires returned decreased by 40%.<\/jats:p>\n                    <jats:p>Notably, of those responding to the one-off survey, 90% of services found FAMCARE-2 valuable for learning, inspection or reflective practice.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Bereaved caregivers consistently expressed satisfaction with SPC services across settings over the 10-year period. Despite limited applicability of findings due to annual decline in participation and lack of demographic data, FAMCARE-2 remains the only nationally used tool for evaluating SPC in the UK.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/spcare-2025-005396","type":"journal-article","created":{"date-parts":[[2025,12,4]],"date-time":"2025-12-04T19:30:25Z","timestamp":1764876625000},"page":"spcare-2025-005396","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":1,"title":["End-of-life care by specialist palliative care teams: 10-year retrospective satisfaction evaluation"],"prefix":"10.1136","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-9939-0860","authenticated-orcid":false,"given":"Despoina-Elvira","family":"Karakitsiou","sequence":"first","affiliation":[{"name":"Palliative Medicine, Northern Ireland Medical and Dental Training Agency, Belfast, Northern Ireland, UK"},{"name":"FAMCARE lead, Clinical Quality Committee, Association for Palliative Medicine of Great Britain and Ireland, Fareham, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ebun","family":"Abarshi","sequence":"additional","affiliation":[{"name":"The Margaret Centre and Waltham Forest Community, Whipps Cross University Hospital NHS Trust, London, England, UK"},{"name":"Member, Clinical Quality Committee, Association for Palliative Medicine of Great Britain and Ireland, Fareham, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna","family":"Grundy","sequence":"additional","affiliation":[{"name":"Member, Clinical Quality Committee, Association for Palliative Medicine of Great Britain and Ireland, Fareham, England, UK"},{"name":"Palliative Medicine, NHS Health Education England North East, Newcastle upon Tyne, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vijaya","family":"Kane","sequence":"additional","affiliation":[{"name":"Clinical Oncology, West Midlands Deanery, Edgbaston, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Cox","sequence":"additional","affiliation":[{"name":"Palliative Medicine, Chelsea and Westminster Healthcare NHS Trust, London, UK"},{"name":"President, Association for Palliative Medicine of Great Britain and Ireland, Fareham, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2025,12,4]]},"reference":[{"key":"2025120411301682000_spcare-2025-005396v1.1","doi-asserted-by":"publisher","DOI":"10.1177\/104990910201900311"},{"key":"2025120411301682000_spcare-2025-005396v1.2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejca.2009.09.003"},{"key":"2025120411301682000_spcare-2025-005396v1.3","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2013-000596"},{"key":"2025120411301682000_spcare-2025-005396v1.4","unstructured":"NACEL. 2025 Available: https:\/\/www.nhsbenchmarking.nhs.uk\/nacel-audit-outputs"},{"key":"2025120411301682000_spcare-2025-005396v1.5","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(93)90066-D"},{"key":"2025120411301682000_spcare-2025-005396v1.6","doi-asserted-by":"crossref","first-page":"252","DOI":"10.1177\/1074840717697538","article-title":"Translation and Testing of the Italian Version of FAMCARE-2: Measuring Family Caregivers\u2019 Satisfaction With Palliative Care","volume":"23","author":"D\u2019Angelo","year":"2017","journal-title":"J Fam Nurs"},{"key":"2025120411301682000_spcare-2025-005396v1.7","doi-asserted-by":"crossref","first-page":"597","DOI":"10.1177\/1049909116645511","article-title":"Psychometric Properties of the Patients\u2019 Satisfaction Instrument FAMCARE-P13 in a Palliative Care Unit","volume":"34","author":"Parpa","year":"2017","journal-title":"Am J Hosp Palliat Care"},{"key":"2025120411301682000_spcare-2025-005396v1.8","doi-asserted-by":"publisher","DOI":"10.1177\/0269216310373166"},{"key":"2025120411301682000_spcare-2025-005396v1.9","unstructured":"Our mission. Hospice UK. Available: https:\/\/www.hospiceuk.org\/about-us\/what-wedo#:~:text=We%20represent%20the%20community%20of%20more%20than%20200%20hospices%20across%20the%20UK [Accessed 8 Oct 2024]."},{"key":"2025120411301682000_spcare-2025-005396v1.10","doi-asserted-by":"crossref","DOI":"10.1136\/bmjspcare-2016-001288","article-title":"Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England","volume":"9","author":"Hunt","year":"2019","journal-title":"BMJ Support Palliat Care"},{"key":"2025120411301682000_spcare-2025-005396v1.11","unstructured":"Jefferies D , Wellings D , Morris J , et al . Public satisfaction with the NHS and social care in 2023. The King\u2019s Fund & Nuffield Trust; 2024. Available: https:\/\/assets.kingsfund.org.uk\/f\/256914\/x\/48c40ea52b\/public_satisfaction_nhs_social_care_2023_bsa_2024.pdf"},{"key":"2025120411301682000_spcare-2025-005396v1.12","unstructured":"The King\u2019s Fund . Why is public satisfaction with the NHS still falling. Available: https:\/\/www.kingsfund.org.uk\/insight-and-analysis\/blogs\/why-public-satisfaction-with-nhs-still-falling#:~:text=In%20line%20with%20this%2C%20when,22%20and%2033) [Accessed 9 Oct 2024]."},{"key":"2025120411301682000_spcare-2025-005396v1.13","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1007\/s40271-018-0328-2","article-title":"Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties","volume":"12","author":"Kupeli","year":"2019","journal-title":"Patient"},{"key":"2025120411301682000_spcare-2025-005396v1.14","doi-asserted-by":"crossref","unstructured":"Higginson I , et al . Are bereaved family members a valid proxy for a patient\u2019s assessment of dying. Soc Sci Med 1982;553\u20137. doi:10.1016\/0277-9536(94)90251","DOI":"10.1016\/0277-9536(94)90251-8"},{"key":"2025120411301682000_spcare-2025-005396v1.15","doi-asserted-by":"crossref","first-page":"46","DOI":"10.1186\/s13690-020-00427-w","article-title":"Trends in response rates and respondent characteristics in five National Maternity Surveys in England during 1995-2018","volume":"78","author":"Harrison","year":"2020","journal-title":"Arch Public Health"},{"key":"2025120411301682000_spcare-2025-005396v1.16","doi-asserted-by":"crossref","first-page":"280","DOI":"10.4103\/apjon.apjon_5_20","article-title":"Reliability and Validity Testing of the FAMCARE-2 Scale: Thai Translation","volume":"7","author":"Ooraikul","year":"2020","journal-title":"Asia Pac J Oncol Nurs"},{"key":"2025120411301682000_spcare-2025-005396v1.17","doi-asserted-by":"publisher","DOI":"10.1136\/spcare-2023-004177"}],"container-title":["BMJ Supportive &amp; Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/spcare-2025-005396","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,4]],"date-time":"2025-12-04T19:30:27Z","timestamp":1764876627000},"score":1,"resource":{"primary":{"URL":"https:\/\/spcare.bmj.com\/lookup\/doi\/10.1136\/spcare-2025-005396"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12,4]]},"references-count":17,"alternative-id":["10.1136\/spcare-2025-005396"],"URL":"https:\/\/doi.org\/10.1136\/spcare-2025-005396","relation":{},"ISSN":["2045-435X","2045-4368"],"issn-type":[{"type":"print","value":"2045-435X"},{"type":"electronic","value":"2045-4368"}],"subject":[],"published":{"date-parts":[[2025,12,4]]}}}