{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T23:38:38Z","timestamp":1792625918587,"version":"4.5.0"},"reference-count":28,"publisher":"SAGE Publications","issue":"10","license":[{"start":{"date-parts":[[2014,9,19]],"date-time":"2014-09-19T00:00:00Z","timestamp":1411084800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2014,12]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting\/participants:<\/jats:title>\n                    <jats:p>Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/0269216314550373","type":"journal-article","created":{"date-parts":[[2014,9,19]],"date-time":"2014-09-19T23:14:04Z","timestamp":1411168444000},"page":"1213-1221","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":37,"title":["Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: A mixed methods study"],"prefix":"10.1177","volume":"28","author":[{"given":"Dorry","family":"McLaughlin","sequence":"first","affiliation":[{"name":"School of Nursing and Midwifery, Queen\u2019s University Belfast, Belfast, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Owen","family":"Barr","sequence":"additional","affiliation":[{"name":"Institute of Nursing and Health Research, School of Nursing, University of Ulster, Newtownabbey, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sonja","family":"McIlfatrick","sequence":"additional","affiliation":[{"name":"Institute of Nursing and Health Research, School of Nursing, University of Ulster, Newtownabbey, UK"},{"name":"All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roy","family":"McConkey","sequence":"additional","affiliation":[{"name":"Institute of Nursing and Health Research, School of Nursing, University of Ulster, Newtownabbey, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2014,9,19]]},"reference":[{"key":"bibr1-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12065"},{"key":"bibr2-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1177\/0269216307082019"},{"key":"bibr3-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2008.0130"},{"issue":"6","key":"bibr4-0269216314550373","first-page":"302","volume":"16","author":"McLaughlin D","year":"2009","journal-title":"Eur J Palliat Care"},{"key":"bibr5-0269216314550373","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2010.16.2.46755"},{"key":"bibr6-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1177\/0269216310371413"},{"key":"bibr7-0269216314550373","author":"Michael J","year":"2008","journal-title":"NHS, London"},{"key":"bibr8-0269216314550373","author":"Parliamentary and Health Services Ombudsman","year":"2009","journal-title":"The Stationery Office, London"},{"key":"bibr9-0269216314550373","volume-title":"World report on disability","author":"World Health Organization","year":"2011"},{"key":"bibr10-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2009.03.003"},{"key":"bibr11-0269216314550373","first-page":"13","volume-title":"Palliative care for people with learning disabilities","author":"Todd S","year":"2006"},{"key":"bibr12-0269216314550373","unstructured":"Read S, Morris H. Living and dying with dignity. The best practice guide to end-of-life care for people with a learning disability. London: Mencap, 2008, www.mencap.org.uk"},{"key":"bibr13-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3148.2010.00605.x"},{"key":"bibr14-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2011.0132"},{"key":"bibr15-0269216314550373","unstructured":"Persaud S. Staff perceptions about the nature and extent to which palliative care and learning disability services work jointly in the provision of high quality services for people with learning disabilities who are terminally ill. Unpublished work for New Researchers Training Programme, The Trent Institute for Health Service Research, 2001."},{"key":"bibr16-0269216314550373","unstructured":"World Health Organization. Framework for action on inter-professional education and collaborative practice, www.who.int\/hrh\/resources\/framework_action\/en\/"},{"key":"bibr17-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1111\/j.1744-6198.2010.00167.x"},{"key":"bibr18-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1080\/13561820500082529"},{"key":"bibr19-0269216314550373","volume-title":"A partnerships: the benefits","author":"Boydell L","year":"2007"},{"issue":"1","key":"bibr20-0269216314550373","first-page":"22","volume":"17","author":"Radbruch L","year":"2010","journal-title":"Eur J Palliat Care"},{"key":"bibr21-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"bibr22-0269216314550373","volume-title":"Research for evidence based practice","author":"Newell R","year":"2006"},{"key":"bibr23-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2013-000615"},{"key":"bibr24-0269216314550373","doi-asserted-by":"publisher","DOI":"10.1080\/09581590601010190"},{"key":"bibr25-0269216314550373","unstructured":"Department of Health Social Services and Public Safety (DHSSPS). Living matters: dying matters. A palliative and end-of-life care strategy for adults in Northern Ireland. DHSSPS, Belfast, March 2010."},{"issue":"3","key":"bibr26-0269216314550373","first-page":"140","volume":"20","author":"Gamondi C","year":"2013","journal-title":"Eur J Palliat Care"},{"key":"bibr27-0269216314550373","unstructured":"Health Service Executive and Irish Hospice Foundation. Palliative care for all. 2008, www.hospice-foundation.ie"},{"key":"bibr28-0269216314550373","unstructured":"Inclusion Europe. 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