{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T18:08:39Z","timestamp":1789150119605,"version":"build-2803163510"},"reference-count":39,"publisher":"BMJ","issue":"9","license":[{"start":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T00:00:00Z","timestamp":1788998400000},"content-version":"unspecified","delay-in-days":9,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2026,7,31]]},"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To (1) systematically identify tools developed to assess and address the support needs of informal carers in palliative or end-of-life care and (2) examine the extent to which socially stratifying sample characteristics have been reported following tool use.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A systematic scoping review was conducted.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Medline, CINAHL, PsycINFO, ASSIA, ProQuest Central and Web of Science databases were searched from inception to May 2024 and again in May 2025. Primary studies using any methodology reporting the development and\/or use of tools to assess informal carer support needs in end-of-life care were included. Consistent with scoping review methodology, we did not conduct a quality appraisal of included studies. We extracted tool characteristics, frequency of use and sample characteristics according to PROGRESS+.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 74 articles were included. From these, 24 unique tools were identified. Nine tools were used in \u22652 articles, while 15 were used only once. The most commonly used tools were the Carer Support Needs Assessment Tool (35 articles), the Family Inventory of Needs (6 articles), the Carer Alert Thermometer (5 articles) and the Spiritual Needs Inventory (4 articles). There was limited evaluation of tools beyond psychometric validation. There were substantial gaps in equity-informed caregiver sample reporting. While gender, age and country of participants were commonly reported, most other PROGRESS+characteristics were inconsistently or minimally reported.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>While numerous tools exist to assess and address informal caregiver support needs, there is considerable variation in tool uptake, evaluation and the extent to which tools consider equity factors. There is a need for equity-informed tool development and clearer conceptualisation of caregiver needs, alongside efforts to evaluate tool implementation, impact and sustainability in palliative care settings.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2026-121897","type":"journal-article","created":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T17:30:26Z","timestamp":1789147826000},"page":"e121897","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["Considerations of equity in the development of tools that identify and respond to end-of-life carer support needs: a scoping review"],"prefix":"10.1136","volume":"16","author":[{"given":"Hannah A","family":"Long","sequence":"first","affiliation":[{"name":"British Columbia Centre on Substance Use, Vancouver, British Columbia, Canada"},{"name":"Department of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Rowland","sequence":"additional","affiliation":[{"name":"Manchester Centre for Health Psychology, University of Manchester, Manchester, UK"},{"name":"School of Health Sciences, University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James","family":"Higgerson","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alex","family":"Hall","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9084-8368","authenticated-orcid":false,"given":"Sean","family":"Urwin","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0220-9847","authenticated-orcid":false,"given":"Joanna","family":"Brooks","sequence":"additional","affiliation":[{"name":"Manchester Centre for Health Psychology, University of Manchester, Manchester, UK"},{"name":"School of Health Sciences, University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2026,9,11]]},"reference":[{"key":"2026091110302255000_16.9.e121897.1","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1177\/08258597251348262","article-title":"Invisible pillars with hidden burdens: a scoping review on the challenges of informal caregivers for older adults in home-based palliative care","volume":"41","author":"Handique","year":"2026","journal-title":"J Palliat Care"},{"key":"2026091110302255000_16.9.e121897.2","doi-asserted-by":"crossref","DOI":"10.1186\/s12904-022-00939-y","article-title":"Preferences for home care to enable home death among adult patients with cancer in late palliative phase - a grounded theory study","volume":"21","author":"Nys\u00e6ter","year":"2022","journal-title":"BMC Palliat Care"},{"key":"2026091110302255000_16.9.e121897.3","doi-asserted-by":"crossref","first-page":"346","DOI":"10.1177\/0269216317690479","article-title":"The contributions of family care-givers at end of life: a national post-bereavement census survey of cancer carers\u2019 hours of care and expenditures","volume":"31","author":"Rowland","year":"2017","journal-title":"Palliat Med"},{"key":"2026091110302255000_16.9.e121897.4","doi-asserted-by":"crossref","first-page":"750","DOI":"10.1177\/0269216321989569","article-title":"The monetary valuation of informal care to cancer decedents at end-of-life: evidence from a national census survey","volume":"35","author":"Urwin","year":"2021","journal-title":"Palliat Med"},{"key":"2026091110302255000_16.9.e121897.5","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3310\/PYTR4127","article-title":"Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis","volume":"13","author":"Bayliss","year":"2023","journal-title":"Health Soc Care Deliv Res"},{"key":"2026091110302255000_16.9.e121897.6","doi-asserted-by":"crossref","unstructured":"Grande G , Shield T , Bayliss K , et al . 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