{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T21:30:50Z","timestamp":1788903050662,"version":"build-2803163510"},"reference-count":40,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2017,2,22]],"date-time":"2017-02-22T00:00:00Z","timestamp":1487721600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1"},{"start":{"date-parts":[[2017,2,22]],"date-time":"2017-02-22T00:00:00Z","timestamp":1487721600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Health Soc Care Community"],"published-print":{"date-parts":[[2017,7]]},"DOI":"10.1111\/hsc.12432","type":"journal-article","created":{"date-parts":[[2017,2,22]],"date-time":"2017-02-22T18:32:43Z","timestamp":1487788363000},"page":"1355-1363","source":"Crossref","is-referenced-by-count":21,"title":["Healthcare professionals\u2019 accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study"],"prefix":"10.1155","volume":"25","author":[{"given":"Sverre Vigeland","family":"Lerum","sequence":"first","affiliation":[{"name":"Institute of Health and Society; University of Oslo; Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kari Nyheim","family":"Solbraekke","sequence":"additional","affiliation":[{"name":"Institute of Health and Society; University of Oslo; Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan C.","family":"Frich","sequence":"additional","affiliation":[{"name":"Institute of Health and Society; University of Oslo; Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,2,22]]},"reference":[{"issue":"2","key":"10.1111\/hsc.12432-BIB0001|hsc12432-cit-0001","doi-asserted-by":"crossref","first-page":"180","DOI":"10.1111\/j.1365-2524.2009.00887.x","article-title":"Encounters in close care relations from the perspective of personal assistants working with persons with severe disability","volume":"18","author":"Ahlstr\u00f6m","year":"2010","journal-title":"Health & Social Care in the Community"},{"issue":"6","key":"10.1111\/hsc.12432-BIB0002|hsc12432-cit-0002","doi-asserted-by":"crossref","first-page":"645","DOI":"10.1111\/j.1365-2524.2011.01006.x","article-title":"Family members\u2019 experiences of personal assistance given to a relative with disabilities","volume":"19","author":"Ahlstr\u00f6m","year":"2011","journal-title":"Health & Social Care in the Community"},{"issue":"3","key":"10.1111\/hsc.12432-BIB0003|hsc12432-cit-0003","doi-asserted-by":"crossref","first-page":"360","DOI":"10.1111\/j.1468-1331.2011.03501.x","article-title":"EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) - revised report of an EFNS task force","volume":"19","author":"Andersen","year":"2012","journal-title":"European Journal of Neurology"},{"issue":"6","key":"10.1111\/hsc.12432-BIB0004|hsc12432-cit-0004","doi-asserted-by":"crossref","first-page":"842","DOI":"10.1177\/0269216311416036","article-title":"Motor neurone disease family carers\u2019 experinences of caring, palliative care and bereavement: an exploratory qualitative study","volume":"26","author":"Aoun","year":"2012","journal-title":"Palliative Medicine"},{"key":"10.1111\/hsc.12432-BIB0005|hsc12432-cit-0005","doi-asserted-by":"crossref","first-page":"437","DOI":"10.1177\/0269216312455729","article-title":"A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions","volume":"27","author":"Aoun","year":"2013","journal-title":"Palliative Medicine"},{"issue":"3-4","key":"10.1111\/hsc.12432-BIB0006|hsc12432-cit-0006","doi-asserted-by":"crossref","first-page":"180","DOI":"10.3109\/21678421.2014.971811","article-title":"Need and value of case management in multidisciplinary ALS care: a qualitative study on the perspectives of patients, spousal caregivers and professionals","volume":"16","author":"Bakker","year":"2015","journal-title":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration"},{"key":"10.1111\/hsc.12432-BIB0007|hsc12432-cit-0007","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1155\/2011\/714693","article-title":"Communication support for people with ALS","volume":"2011","author":"Beukelman","year":"2011","journal-title":"Neurology Research International"},{"issue":"3","key":"10.1111\/hsc.12432-BIB0008|hsc12432-cit-0008","doi-asserted-by":"crossref","first-page":"162","DOI":"10.3109\/17482968.2011.562512","article-title":"A survey of stress among amyotrophic lateral sclerosis care providers","volume":"12","author":"Bromberg","year":"2011","journal-title":"Amyotrophic Lateral Sclerosis"},{"issue":"3","key":"10.1111\/hsc.12432-BIB0009|hsc12432-cit-0009","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1191\/1463423603pc151oa","article-title":"User, carer and professional experiences of care in motor neurone disease","volume":"4","author":"Brown","year":"2003","journal-title":"Primary Health Care Research & Development"},{"issue":"5","key":"10.1111\/hsc.12432-BIB0010|hsc12432-cit-0010","doi-asserted-by":"crossref","first-page":"249","DOI":"10.12968\/bjnn.2005.1.5.20273","article-title":"An investigation of patients and providers\u2019 views of services for motor neurone disease","volume":"1","author":"Brown","year":"2005","journal-title":"British Journal of Neuroscience Nursing"},{"issue":"1-2","key":"10.1111\/hsc.12432-BIB0011|hsc12432-cit-0011","doi-asserted-by":"crossref","first-page":"15","DOI":"10.3109\/21678421.2015.1074702","article-title":"Curable or treatable? The implications of different definitions of illness when treating patients suffering from amyotrophic lateral sclerosis","volume":"17","author":"Cappellato","year":"2015","journal-title":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration"},{"issue":"3","key":"10.1111\/hsc.12432-BIB0012|hsc12432-cit-0012","doi-asserted-by":"crossref","first-page":"399","DOI":"10.1080\/09687599.2012.654990","article-title":"Towards sustainable hybrid relationships in cash-for-care systems","volume":"27","author":"Christensen","year":"2012","journal-title":"Disability & Society"},{"issue":"1","key":"10.1111\/hsc.12432-BIB0013|hsc12432-cit-0013","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1186\/1472-6963-11-115","article-title":"Home mechanical ventilation and specialised health care in the community: between a rock and a hard place","volume":"11","author":"Dybwik","year":"2011","journal-title":"BMC Health Services Research"},{"issue":"2","key":"10.1111\/hsc.12432-BIB0014|hsc12432-cit-0014","doi-asserted-by":"crossref","first-page":"233","DOI":"10.1177\/0969733011414967","article-title":"Ethical challenges in home mechanical ventilation: a secondary analysis","volume":"19","author":"Dybwik","year":"2012","journal-title":"Nursing Ethics"},{"key":"10.1111\/hsc.12432-BIB0015|hsc12432-cit-0015","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1016\/j.socscimed.2013.11.003","article-title":"Exerting control and adapting to loss in amyotrophic lateral sclerosis","volume":"101","author":"Foley","year":"2014a","journal-title":"Social Science & Medicine"},{"issue":"4","key":"10.1111\/hsc.12432-BIB0016|hsc12432-cit-0016","doi-asserted-by":"crossref","first-page":"318","DOI":"10.1177\/0269216313512013","article-title":"Understanding psycho-social processes underpinning engagement with services in motor neurone disease: a qualitative study","volume":"28","author":"Foley","year":"2014b","journal-title":"Palliative Medicine"},{"key":"10.1111\/hsc.12432-BIB0017|hsc12432-cit-0017","volume-title":"High Performance Healthcare: Using the Power of Relationships to Achieve Quality, Efficiency and Resilience","author":"Gittell","year":"2009"},{"issue":"3","key":"10.1111\/hsc.12432-BIB0018|hsc12432-cit-0018","doi-asserted-by":"crossref","first-page":"359","DOI":"10.1007\/s00415-010-5830-y","article-title":"Management of respiratory symptoms in ALS","volume":"258","author":"Hardiman","year":"2010","journal-title":"Journal of Neurology"},{"issue":"1","key":"10.1111\/hsc.12432-BIB0502|hsc12432-cit-0502","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/02678371003683747","article-title":"Ten years on: A review of recent research on the Job Demand-Control (-Support) model and psychological well-being","volume":"24","author":"H\u00e4usser","year":"2010","journal-title":"Work & Stress"},{"key":"10.1111\/hsc.12432-BIB0019|hsc12432-cit-0019","doi-asserted-by":"crossref","first-page":"691","DOI":"10.2147\/PPA.S36759","article-title":"Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals","volume":"6","author":"Hogden","year":"2012","journal-title":"Patient Preference and Adherence"},{"issue":"1","key":"10.1111\/hsc.12432-BIB0020|hsc12432-cit-0020","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1111\/j.1365-2524.2005.00530.x","article-title":"Living with motor neurone disease: lives, experiences of services and suggestions for change","volume":"13","author":"Hughes","year":"2005","journal-title":"Health & Social Care in the Community"},{"issue":"10","key":"10.1111\/hsc.12432-BIB0501|hsc12432-cit-0501","doi-asserted-by":"crossref","first-page":"1336","DOI":"10.2105\/AJPH.78.10.1336","article-title":"Job strain, work place social support, and cardiovascular disease: a cross-sectional study of a random sample of the Swedish working population","volume":"78","author":"Johnson","year":"1988","journal-title":"American Journal of Public Health"},{"issue":"9769","key":"10.1111\/hsc.12432-BIB0021|hsc12432-cit-0021","doi-asserted-by":"crossref","first-page":"942","DOI":"10.1016\/S0140-6736(10)61156-7","article-title":"Amyotrophic lateral sclerosis","volume":"377","author":"Kiernan","year":"2011","journal-title":"The Lancet"},{"issue":"5","key":"10.1111\/hsc.12432-BIB0022|hsc12432-cit-0022","doi-asserted-by":"crossref","first-page":"745","DOI":"10.1111\/j.1365-2702.2008.02671.x","article-title":"Living with amyotrophic lateral sclerosis\/motor neurone disease (ALS\/MND): decision-making about \u2018ongoing change and adaptation\u2019","volume":"18","author":"King","year":"2009","journal-title":"Journal of Clinical Nursing"},{"key":"10.1111\/hsc.12432-BIB0023|hsc12432-cit-0023","volume-title":"Interviews: Learning the Craft of Qualitative Research Interviewing","author":"Kvale","year":"2009"},{"issue":"1","key":"10.1111\/hsc.12432-BIB0024|hsc12432-cit-0024","doi-asserted-by":"crossref","first-page":"81","DOI":"10.1111\/1467-9566.12182","article-title":"Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease","volume":"37","author":"Lerum","year":"2015","journal-title":"Sociology of Health & Illness"},{"issue":"22","key":"10.1111\/hsc.12432-BIB0025|hsc12432-cit-0025","first-page":"1","article-title":"Family caregivers\u2019 accounts of caring for a family member with motor neurone disease in Norway: a qualitative study","volume":"15","author":"Lerum","year":"2016","journal-title":"BMC Palliative Care"},{"issue":"15","key":"10.1111\/hsc.12432-BIB0026|hsc12432-cit-0026","doi-asserted-by":"crossref","first-page":"1218","DOI":"10.1212\/WNL.0b013e3181bc0141","article-title":"Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology","volume":"73","author":"Miller","year":"2009a","journal-title":"Neurology"},{"issue":"15","key":"10.1111\/hsc.12432-BIB0027|hsc12432-cit-0027","doi-asserted-by":"crossref","first-page":"1227","DOI":"10.1212\/WNL.0b013e3181bc01a4","article-title":"Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive\/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology","volume":"73","author":"Miller","year":"2009b","journal-title":"Neurology"},{"issue":"4","key":"10.1111\/hsc.12432-BIB0504|hsc12432-cit-0504","doi-asserted-by":"crossref","first-page":"389","DOI":"10.1111\/hsc.12158","article-title":"Mechanisms to enhance the effectiveness of allied health and social care assistants in community-based rehabilitation services: a qualitative study","volume":"23","author":"Moran","year":"2015","journal-title":"Health & Social Care in the Community"},{"issue":"6","key":"10.1111\/hsc.12432-BIB0028|hsc12432-cit-0028","first-page":"717","article-title":"A framework for assessing the performance of health systems","volume":"78","author":"Murray","year":"2000","journal-title":"Bulletin of the World Health Organization"},{"key":"10.1111\/hsc.12432-BIB0029|hsc12432-cit-0029","volume-title":"Summary in English: Report No. 47 (2008-2009) to the Storting. The Coordination Reform. Proper Treatment - At the Right Place and Right Time","author":"Norwegian Ministry of Health and Care Services","year":"2009"},{"key":"10.1111\/hsc.12432-BIB0030|hsc12432-cit-0030","volume-title":"The Primary Health and Care Services of Tomorrow - Localised and Integrated","author":"Norwegian Ministry of Health and Care Services","year":"2015"},{"issue":"2","key":"10.1111\/hsc.12432-BIB0031|hsc12432-cit-0031","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1177\/0269216311398697","article-title":"Social services homecare for people with motor neurone disease\/amyotrophic lateral sclerosis: why are such services used or refused?","volume":"26","author":"O'Brien","year":"2012","journal-title":"Palliative Medicine"},{"issue":"2","key":"10.1111\/hsc.12432-BIB0032|hsc12432-cit-0032","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1177\/1363459309360786","article-title":"The dynamics of socio-connective trust within support networks accessed by informal caregivers","volume":"15","author":"Ray","year":"2011","journal-title":"Health"},{"issue":"8","key":"10.1111\/hsc.12432-BIB0033|hsc12432-cit-0033","first-page":"1","article-title":"Norway: health system review","volume":"15","author":"Ringard","year":"2013","journal-title":"Health Systems in Transition"},{"issue":"21","key":"10.1111\/hsc.12432-BIB0034|hsc12432-cit-0034","doi-asserted-by":"crossref","first-page":"1765","DOI":"10.3109\/09638288.2012.753118","article-title":"Experiences of living with motor neurone disease: a review of qualitative research","volume":"35","author":"Sakellariou","year":"2013","journal-title":"Disability and Rehabilitation"},{"issue":"4","key":"10.1111\/hsc.12432-BIB0035|hsc12432-cit-0035","doi-asserted-by":"crossref","first-page":"201","DOI":"10.3109\/21679169.2013.834513","article-title":"Experiences with using mechanical in-exsufflation in amyotrophic lateral sclerosis","volume":"15","author":"Siewers","year":"2013","journal-title":"European Journal of Physiotherapy"},{"issue":"3","key":"10.1111\/hsc.12432-BIB0036|hsc12432-cit-0036","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1111\/j.1365-2524.2012.01058.x","article-title":"Norwegian home care in transition - heading for accountability, off-loading responsibilities","volume":"20","author":"Vab\u00f8","year":"2012","journal-title":"Health & Social Care in the Community"},{"issue":"2","key":"10.1111\/hsc.12432-BIB0500|hsc12432-cit-0500","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1080\/026783799296084","article-title":"The Job Demand-Control (-Support) Model and psychological well-being: A review of 20 years of empirical research","volume":"13","author":"Doef","year":"1999","journal-title":"Work & Stress"}],"container-title":["Health & Social Care in the Community"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fhsc.12432","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/onlinelibrary.wiley.com\/wol1\/doi\/10.1111\/hsc.12432\/fullpdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,12,29]],"date-time":"2022-12-29T11:50:01Z","timestamp":1672314601000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hsc.12432"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,2,22]]},"references-count":40,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2017,7]]}},"URL":"https:\/\/doi.org\/10.1111\/hsc.12432","archive":["Portico"],"relation":{},"ISSN":["0966-0410"],"issn-type":[{"value":"0966-0410","type":"print"}],"subject":[],"published":{"date-parts":[[2017,2,22]]}}}