{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T15:39:35Z","timestamp":1787240375094,"version":"build-2736575974"},"reference-count":64,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2019,1,1]],"date-time":"2019-01-01T00:00:00Z","timestamp":1546300800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Walton Centre NHS Foundation Trust","award":["Neurological Disability Fund"],"award-info":[{"award-number":["Neurological Disability Fund"]}]},{"DOI":"10.13039\/501100000406","name":"Motor Neurone Disease Association","doi-asserted-by":"publisher","award":["Young\/Feb12\/6384"],"award-info":[{"award-number":["Young\/Feb12\/6384"]}],"id":[{"id":"10.13039\/501100000406","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Cent Nerv Syst Dis"],"published-print":{"date-parts":[[2019,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>In this research, we explored \u2018concerns\u2019 \u2013 one of the four aspects in the World Health Organisation\u2019s conceptualisation of QoL \u2013 towards adding to the literature.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant\u2019s concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings:<\/jats:title>\n                    <jats:p>The analysis showed that concerns for significant others contribute to participant\u2019s QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion:<\/jats:title>\n                    <jats:p>The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1179573519859360","type":"journal-article","created":{"date-parts":[[2019,7,8]],"date-time":"2019-07-08T05:56:29Z","timestamp":1562565389000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":14,"title":["Exploring and Addressing \u2018Concerns\u2019 for Significant Others to Extend the Understanding of Quality of Life With Amyotrophic Lateral Sclerosis: A Qualitative Study"],"prefix":"10.1177","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0657-7068","authenticated-orcid":false,"given":"Hikari","family":"Ando","sequence":"first","affiliation":[{"name":"Respiratory Laboratory, Aintree University Hospital NHS Foundation Trust, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosanna","family":"Cousins","sequence":"additional","affiliation":[{"name":"Department of Psychology, Liverpool Hope University, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn A","family":"Young","sequence":"additional","affiliation":[{"name":"The Walton Centre NHS Foundation Trust, Liverpool, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2019,7,8]]},"reference":[{"key":"bibr1-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)31287-4"},{"key":"bibr2-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(10)61156-7"},{"key":"bibr3-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2009.188151"},{"key":"bibr4-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000006317"},{"key":"bibr5-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(13)70026-7"},{"key":"bibr6-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1126\/science.1134108"},{"key":"bibr7-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(07)70265-X"},{"key":"bibr8-1179573519859360","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.74.suppl_4.iv32"},{"key":"bibr9-1179573519859360","unstructured":"NICE. 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