{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T03:56:45Z","timestamp":1790567805831,"version":"4.1.0"},"reference-count":73,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"vor","delay-in-days":7,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T00:00:00Z","timestamp":1788220800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["sigmapubs.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J of Nursing Scholarship"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Progressive neurological disorders (PNDs) are life\u2010limiting conditions with complex trajectories. PNDs require holistic, person\u2010centred care that responds to the needs of both individuals and their families, including the provision of palliative and end\u2010of\u2010life (EOL) care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>This systematic review aimed to identify and synthesize existing international guidelines addressing palliative and EOL care in adult PND populations, with particular attention to their quality and scope.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We searched databases and gray literature sources for guidelines published between January 2013 and February 2026. Thirty\u2010three guidelines were included for review. We appraised guidelines to assess quality and comprehensiveness against the World Health Organization's (WHO) domains of palliative care. We conducted inductive content analysis to identify key themes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Guidelines predominantly were published from high\u2010income countries and focused on dementia. Overall guideline quality was high. Most addressed physical, psychosocial, and social dimensions of care of the WHO domains; however, spiritual wellbeing was inconsistently addressed. Six interrelated themes emerged: (i) holistic symptom management; (ii) recognition of families and caregivers as partners in care; (iii) early and ongoing communication; (iv) value\u2010aligned decision\u2010making; (v) multidisciplinary team expertise; (vi) navigation of medicolegal complexities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Findings indicate broad international consensus on the principles of high\u2010quality palliative care in PND, while highlighting gaps in disease\/diagnosis representation, spiritual care, and global equity. Future research could consider the importance of disease\u2010specific guidelines, covering regions and countries from across a range of high\u2010, middle\u2010, and lower\u2010income countries.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Clinical Relevance<\/jats:title>\n                    <jats:p>Clinicians caring for people with progressive neurological disorders can draw on the internationally consistent principles identified in this review including early integration of palliative care, proactive and open communication, and recognition of families as partners in care to benchmark and strengthen their practice. Gaps in spiritual wellbeing, condition\u2010specific guidance, clinical supports, and equitable access represent clear targets for workforce education, service development, and health policy advocacy.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jnu.70130","type":"journal-article","created":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T09:52:08Z","timestamp":1788861128000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["A Systematic Review of Worldwide Guidelines, Protocols, and Health Care Standards for Provision of Palliative Care Services in Progressive Neurological Disorders"],"prefix":"10.1111","volume":"58","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2290-939X","authenticated-orcid":false,"given":"Jessica","family":"Kaplonyi","sequence":"first","affiliation":[{"name":"Faculty of MDHS The University of Melbourne  Parkville Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4953-4500","authenticated-orcid":false,"given":"Samantha M.","family":"Loi","sequence":"additional","affiliation":[{"name":"Faculty of MDHS The University of Melbourne  Parkville Victoria Australia"},{"name":"Neuropsychiatry Centre The Royal Melbourne Hospital  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9637-8590","authenticated-orcid":false,"given":"Julie C.","family":"Stout","sequence":"additional","affiliation":[{"name":"School of Psychological Sciences and the Turner Institute for Brain &amp; Mental Health Monash University  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3312-0645","authenticated-orcid":false,"given":"Jennifer","family":"Philip","sequence":"additional","affiliation":[{"name":"Faculty of MDHS The University of Melbourne  Parkville Victoria Australia"},{"name":"Department of Medicine St Vincent's Hospital  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-0706-7580","authenticated-orcid":false,"given":"Rosalie","family":"Gebert","sequence":"additional","affiliation":[{"name":"Independent Researcher  Parkville Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0159-5926","authenticated-orcid":false,"given":"Anita M. Y.","family":"Goh","sequence":"additional","affiliation":[{"name":"Faculty of MDHS The University of Melbourne  Parkville Victoria Australia"},{"name":"National Ageing Research Institute  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,8]]},"reference":[{"key":"e_1_2_12_2_1","unstructured":"Amyotrophic Lateral Sclerosis Society of Canada. n.d.\u201cA Guide to ALS Patient Care For Primary Care Physicians.\u201dhttps:\/\/als.ca\/wp\u2010content\/uploads\/2021\/05\/A\u2010Guide\u2010to\u2010ALS\u2010Patient\u2010Care\u2010For\u2010Primary\u2010Care\u2010Physicians\u2010English.pdf."},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2005.14.8.17929"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjgh\u20102020\u2010003097"},{"key":"e_1_2_12_5_1","volume-title":"Qualitative Research\u2014A Practical Guide for Health and Social Care Researchers and Practitioners","author":"Berkovic D.","year":"2023"},{"key":"e_1_2_12_6_1","volume-title":"Progressive Neurological Disorders","author":"BISA","year":"2025"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12904\u2010023\u201001171\u2010y"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1080\/08854726.2025.2471740"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2023.1154579"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2018.1446188"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-69909-7_3470-2"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/inr.12194"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eclinm.2022.101286"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.3138\/ptc\u20102022\u20100051"},{"key":"e_1_2_12_15_1","volume-title":"Triggers for Palliative Care. 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