{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T13:49:47Z","timestamp":1791294587893,"version":"4.1.0"},"reference-count":28,"publisher":"BMJ","issue":"1","funder":[{"name":"American ALS Association"},{"name":"Irish Health Research Board"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2017,11,21]]},"published-print":{"date-parts":[[2018,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and participants<\/jats:title>\n                    <jats:p>Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS\/MND Clinic at Beaumont Hospital, Dublin, Ireland.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and \u2018nothing\u2019. Themes were interconnected and their prevalence varied across the interview time points.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12\u201318 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2017-018721","type":"journal-article","created":{"date-parts":[[2018,1,27]],"date-time":"2018-01-27T07:25:19Z","timestamp":1517037919000},"page":"e018721","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":60,"title":["Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis"],"prefix":"10.1136","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8232-8020","authenticated-orcid":false,"given":"Miriam","family":"Galvin","sequence":"first","affiliation":[{"name":"Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sile","family":"Carney","sequence":"additional","affiliation":[{"name":"Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland"},{"name":"Department of Psychology, Beaumont Hospital, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernie","family":"Corr","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Neuroscience Centre, Beaumont Hospital, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iain","family":"Mays","sequence":"additional","affiliation":[{"name":"Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland"},{"name":"Department of Psychology, Beaumont Hospital, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niall","family":"Pender","sequence":"additional","affiliation":[{"name":"Department of Psychology, Beaumont Hospital, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Orla","family":"Hardiman","sequence":"additional","affiliation":[{"name":"Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland"},{"name":"Department of Neurology, National Neuroscience Centre, Beaumont Hospital, Dublin, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2018,1,27]]},"reference":[{"key":"2025121409525870000_8.1.e018721.1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(14)70221-2"},{"key":"2025121409525870000_8.1.e018721.2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2007.117788"},{"key":"2025121409525870000_8.1.e018721.3","doi-asserted-by":"crossref","first-page":"171","DOI":"10.2147\/PPA.S40783","article-title":"What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care?","volume":"7","author":"Hogden","year":"2013","journal-title":"Patient Prefer Adherence"},{"key":"2025121409525870000_8.1.e018721.4","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2011.605511"},{"key":"2025121409525870000_8.1.e018721.5","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291706007124"},{"key":"2025121409525870000_8.1.e018721.6","doi-asserted-by":"crossref","first-page":"2799","DOI":"10.1007\/s00415-015-7941-y","article-title":"Erratum to: Caregiver burden in amyotrophic lateral sclerosis: a cross-sectional investigation of predictors","volume":"262","author":"Burke","year":"2015","journal-title":"J Neurol"},{"key":"2025121409525870000_8.1.e018721.7","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e31828f18ac"},{"key":"2025121409525870000_8.1.e018721.8","doi-asserted-by":"publisher","DOI":"10.1016\/S0883-9417(96)80070-7"},{"key":"2025121409525870000_8.1.e018721.9","doi-asserted-by":"publisher","DOI":"10.2307\/583753"},{"key":"2025121409525870000_8.1.e018721.10","doi-asserted-by":"publisher","DOI":"10.1191\/0969733003ne593oa"},{"key":"2025121409525870000_8.1.e018721.11","doi-asserted-by":"publisher","DOI":"10.1177\/026921639701100304"},{"key":"2025121409525870000_8.1.e018721.12","doi-asserted-by":"publisher","DOI":"10.1080\/17482960801934148"},{"key":"2025121409525870000_8.1.e018721.13","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/20.6.649"},{"key":"2025121409525870000_8.1.e018721.14","doi-asserted-by":"publisher","DOI":"10.1177\/026921639500900306"},{"key":"2025121409525870000_8.1.e018721.15","unstructured":"IBM Corp. 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