{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,21]],"date-time":"2026-06-21T20:47:27Z","timestamp":1782074847322,"version":"3.54.5"},"reference-count":29,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Research Centre for Palliative Care, Death and Dying","award":["The study was supported by the Research Centre for Palliative Care, Death and Dying."],"award-info":[{"award-number":["The study was supported by the Research Centre for Palliative Care, Death and Dying."]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat&amp;#65533;Care"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Carers are individuals who provide unpaid care to family members and friends with disabilities, medical conditions, mental illness, or who are frail and aged. The contribution of carers to the Australian health, aged care, disability, and social care systems is significant. However, they face high levels of emotional, social, physical, and financial burdens. The Australian Government has recently introduced policy reforms to improve recognition of carers. However, there is limited evidence on research priorities to facilitate the translation of policies into practice.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To involve Australian stakeholders to a) identify evidence gaps and research needs; and b) set research priorities for carers within the context of ageing, palliative care and end of life.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Stakeholder consultation study for research priority setting.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Australian stakeholders with expertise in areas related to carers, aged care, and palliative care were engaged through an online survey, a research roundtable and a focus group to discuss research priorities for carers. The survey qualitative responses, notes from the roundtable, and focus group transcript have been summarised and analysed thematically, using NVivo 14 qualitative software.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Two main considerations as found from the study are \u2018what to research\u2019 and \u2018how to research\u2019 to improve recognition and support of carers in Australia. Research priorities identified include recognition and early identification of carers, timely and equitable access to support services, helping carers navigate services, support during the transition of care, post caring, including grief and bereavement support, evaluation of existing services, and carer self-care and wellbeing. Participants commented on the importance of research that engages carers meaningfully, respectfully, and in a timely and flexible manner to ensure maximum impact.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study guides the design of carer-centred research to facilitate the translation of carer policies into practice. It also assists in evaluating the effectiveness, cost-effectiveness and sustainability of existing and new support services.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524261462959","type":"journal-article","created":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T22:34:21Z","timestamp":1781822061000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Research priority setting for unpaid carers of older adults, patients with palliative care needs and at the end of life in Australia"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0388-5524","authenticated-orcid":false,"given":"Sara","family":"Javanparast","sequence":"first","affiliation":[{"name":"Flinders University"},{"name":"Adelaide University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philip","family":"Martin","sequence":"additional","affiliation":[{"name":"Consumer representative"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annie","family":"Dullow","sequence":"additional","affiliation":[{"name":"Consumer representative"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"Willis","sequence":"additional","affiliation":[{"name":"Carers SA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oluwatomilayo","family":"Omoya","sequence":"additional","affiliation":[{"name":"Flinders University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2611-1900","authenticated-orcid":false,"given":"Jennifer","family":"Tieman","sequence":"additional","affiliation":[{"name":"Flinders University"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,6,18]]},"reference":[{"key":"e_1_3_9_2_2","volume-title":"Recognising, valuing and supporting unpaid carers: Inquiry into the recognition of unpaid carers","author":"Parliament of Australia","year":"2024","unstructured":"Parliament of Australia. Recognising, valuing and supporting unpaid carers: Inquiry into the recognition of unpaid carers: House of Representatives, Standing Committee on Social Policy and Legal Affairs, 2024."},{"key":"e_1_3_9_3_2","unstructured":"ABS. Disability Ageing and Carers. https:\/\/www.abs.gov.au\/statistics\/health\/disability\/disability-ageing-and-carers-australia-summary-findings\/latest-release (2022) accessed 18\/03\/2025 2025."},{"key":"e_1_3_9_4_2","volume-title":"The value of informal care in 2020","author":"Carers Australia","year":"2020","unstructured":"Carers Australia. The value of informal care in 2020, 2020."},{"key":"e_1_3_9_5_2","doi-asserted-by":"publisher","DOI":"10.1177\/26323524241255386"},{"key":"e_1_3_9_6_2","volume-title":"Caring for others and yourself: Carer Wellbeing Survey \u2013 2025 Report","author":"Carers Australia","year":"2025","unstructured":"Carers Australia. Caring for others and yourself: Carer Wellbeing Survey \u2013 2025 Report, 2025."},{"key":"e_1_3_9_7_2","volume-title":"National Carers Strategy Consultation Summary","author":"Carers Australia","year":"2024","unstructured":"Carers Australia. National Carers Strategy Consultation Summary, 2024."},{"key":"e_1_3_9_8_2","volume-title":"National Carer Strategy 2024-2034","author":"Australian Government","year":"2024","unstructured":"Australian Government. National Carer Strategy 2024-2034: Department of Social Services, 2024."},{"key":"e_1_3_9_9_2","volume-title":"National Carer Strategy 2024-2034: Action Plan 2024-2027","author":"Australian Government","year":"2024","unstructured":"Australian Government. National Carer Strategy 2024-2034: Action Plan 2024-2027: Department of Social Services, 2024."},{"key":"e_1_3_9_10_2","volume-title":"The Carers Recognition Act 2005 \u2013 South Australia Review of Act","author":"Dennis R","year":"2024","unstructured":"Dennis R. The Carers Recognition Act 2005 \u2013 South Australia Review of Act, 2024."},{"key":"e_1_3_9_11_2","volume-title":"Tasmanian Carer Action Plan 2021-25","author":"Tasmanian Government","year":"2024","unstructured":"Tasmanian Government. Tasmanian Carer Action Plan 2021-25. Hobart: Department of Premier and Cabinet, 2024."},{"key":"e_1_3_9_12_2","volume-title":"NSW Health Recognition and Support for Carers: Key Directions 2024-2028","author":"NSW Government","year":"2024","unstructured":"NSW Government. NSW Health Recognition and Support for Carers: Key Directions 2024-2028. NSW Ministry of Health, 2024. Sudney."},{"key":"e_1_3_9_13_2","unstructured":"Queensland Government. Queensland Carers Action Plan 2024-26. 2024. Brisbane."},{"key":"e_1_3_9_14_2","unstructured":"Government of South Australia. Stronger recognition for SA's unpaid carers as Carers Bill passes Parliament. https:\/\/www.premier.sa.gov.au\/media-releases\/news-items\/stronger-recognition-for-sas-unpaid-carers-as-carers-bill-passes-parliament#:\u223c:text=MoreSouthAustralianswillbe updatedCarersRecognitionAct2005 (2025)."},{"key":"e_1_3_9_15_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2025.105437"},{"key":"e_1_3_9_16_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-024-04897-3"},{"key":"e_1_3_9_17_2","volume-title":"Research with Patient and Public involvement: a Realist evaluation - the RAPPORT study","author":"Wilson P","year":"2015","unstructured":"Wilson P, Mathie E, Keenan J, et al. Research with Patient and Public involvement: a Realist evaluation - the RAPPORT study. Health Services and Delivery Research, 2015. https:\/\/doi.org\/10.3310\/hsdr03380"},{"key":"e_1_3_9_18_2","unstructured":"James Lind Alliance. PSP final reports. https:\/\/www.jla.nihr.ac.uk\/psp-finalreports.htm accessed 11 Nov 2025."},{"key":"e_1_3_9_19_2","doi-asserted-by":"publisher","DOI":"10.4135\/9781483384436"},{"key":"e_1_3_9_20_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12874-019-0889-3"},{"key":"e_1_3_9_21_2","doi-asserted-by":"publisher","DOI":"10.1177\/26323524251396992"},{"key":"e_1_3_9_22_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2022.0221"},{"key":"e_1_3_9_23_2","unstructured":"Care ACoSaQiH. Partnering with Consumers Standard. https:\/\/www.safetyandquality.gov.au\/standards\/nsqhs-standards\/partnering-consumers-standard (2025) accessed 13 January 2026."},{"key":"e_1_3_9_24_2","volume-title":"Partnering with Carers Policy","author":"Government of South Australia","year":"2023","unstructured":"Government of South Australia. Partnering with Carers Policy. : SA Health, 2023."},{"key":"e_1_3_9_25_2","volume-title":"Working with Carers, Family and Kin: A Guide for Healthcare Professionals","author":"ARAFMI","year":"2025","unstructured":"ARAFMI. Working with Carers, Family and Kin: A Guide for Healthcare Professionals. , 2025."},{"key":"e_1_3_9_26_2","unstructured":"Government of South Australia. SA Carers Charter. https:\/\/www.bpdcommunity.com.au\/static\/uploads\/files\/2006-carers-charter-sa-wfbqwhrpglnx.pdf (2006) accessed 13 January 2026."},{"key":"e_1_3_9_27_2","doi-asserted-by":"publisher","DOI":"10.1177\/00302228251319478"},{"key":"e_1_3_9_28_2","unstructured":"NHMRC. Consumer and community engagement. https:\/\/www.nhmrc.gov.au\/about-us\/consumer-and-community-involvement\/consumer-and-community-engagement (accessed 11 Nov 2025)."},{"key":"e_1_3_9_29_2","unstructured":"Javanparast S Tieman J. Unpaid Carers Research Roundtable and focus group: Summary report of discussions. 2025. Adelaide: Research Centre for Palliative Care Death and Dying. Flinders University."},{"key":"e_1_3_9_30_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-021-00318-6"}],"container-title":["Palliative Care and Social Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/26323524261462959","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/26323524261462959","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/26323524261462959","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,21]],"date-time":"2026-06-21T19:48:59Z","timestamp":1782071339000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/26323524261462959"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6]]},"references-count":29,"alternative-id":["10.1177\/26323524261462959"],"URL":"https:\/\/doi.org\/10.1177\/26323524261462959","relation":{},"ISSN":["2632-3524","2632-3524"],"issn-type":[{"value":"2632-3524","type":"print"},{"value":"2632-3524","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6]]},"article-number":"26323524261462959"}}