Citations (46)
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Samar M. Aoun, Paul A. Cafarella, Bruce Rumbold, Geoff Thomas, Anne Hogden, Leanne Jiang, Sonia Gregory & David W. Kissane. (2021) Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:1-2, pages 12-22.
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Natalie James, Emma Power, Anne Hogden & Steve Vucic. (2019) Patients’ perspectives of multidisciplinary home-based e-Health service delivery for motor neurone disease. Disability and Rehabilitation: Assistive Technology 14:7, pages 737-743.
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Louise Sofia Madsen, Jørgen Jeppesen & Charlotte Handberg. (2019) “Understanding my ALS”. Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation. Disability and Rehabilitation 41:12, pages 1410-1418.
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Nivedita U. Jerath, Kevin Simoens, Dylan Mann, Steph Kollasch, Nicole Grosland, Karim A. Malik & Chandan G. Reddy. (2019) Survey of the functional priorities in patients with disability due to neuromuscular disorders. Disability and Rehabilitation: Assistive Technology 14:2, pages 133-137.
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Andreas Funke, Susanne Spittel, Torsten Grehl, Julian Grosskreutz, Dagmar Kettemann, Susanne Petri, Ute Weyen, Patrick Weydt, Johannes Dorst, Albert C. Ludolph, Petra Baum, Moritz Oberstadt, Berit Jordan, Andreas Hermann, Joachim Wolf, Matthias Boentert, Bertram Walter, Nadine Gajewski, André Maier, Christoph Münch & Thomas Meyer. (2018) Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 19:5-6, pages 342-350.
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Anne Hogden, Geraldine Foley, Robert D Henderson, Natalie James & Samar M Aoun. (2017) Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. Journal of Multidisciplinary Healthcare 10, pages 205-215.
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Geraldine Foley, Virpi Timonen & Orla Hardiman. (2016) “I hate being a burden”: The patient perspective on carer burden in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 17:5-6, pages 351-357.
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Samar M Aoun, Lauren J Breen, Denise Howting, Robert Edis, David Oliver, Robert Henderson, Margaret O’Connor, Rodney Harris & Carol Birks. (2016) Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 17:3-4, pages 168-178.
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Mary Rabbitte, Ursula Bates & Michael Keane. (2015) Psychological and psychotherapeutic approaches for people with motor neuron disease: A qualitative study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 16:5-6, pages 303-308.
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Minne Bakker, Huub Creemers, Karen Schipper, Anita Beelen, Hepke Grupstra, Frans Nollet & Tineke Abma. (2015) Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers and professionals. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 16:3-4, pages 180-186.
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Vibeke Siewers, Trygve Holmøy & Jan C. Frich. (2013) Experiences with using mechanical in–exsufflation in amyotrophic lateral sclerosis. European Journal of Physiotherapy 15:4, pages 201-207.
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Ana Draper, Emma Day, Elizabeth Garrood & Paula Smith. (2013) Patients and carers experience of living with a complex neurological and palliative diagnosis. Mortality 18:3, pages 270-289.
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Anne Hogden, David Greenfield, Peter Nugus & Matthew C Kiernan. (2012) What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Preference and Adherence 6, pages 829-838.
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Anne Hogden, David Greenfield, Peter Nugus & Matthew C Kiernan. (2012) Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals. Patient Preference and Adherence 6, pages 691-701.
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Articles from other publishers (32)
Anna Huynh, Kerry Adams, Carolina Barnett-Tapia, Sanjay Kalra, Lorne Zinman & Yana Yunusova. (2023) Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs. Journal of Speech, Language, and Hearing Research, pages 1-13.
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Sean White, Alicia O'Cathain, Vanessa Halliday, Liz Croot & Christopher J. McDermott. (2023) Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis. Health Expectations 26:4, pages 1418-1435.
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Sara Alquati, Luca Ghirotto, Ludovica De Panfilis, Cristina Autelitano, Elisabetta Bertocchi, Giovanna Artioli, Francesca Sireci, Silvia Tanzi & Simona Sacchi. (2022) Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis. Brain Sciences 12:12, pages 1623.
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Helen Brewah, Kevin Borrett, Nuno Tavares & Nikki Jarrett. (2022) Perceptions of people with motor neurone disease, families and HSCPs: a literature review. British Journal of Community Nursing 27:4, pages 188-198.
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Katharina Linse, Elisa Aust, René Günther & Andreas Hermann. (2022) Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?. Journal of Clinical Medicine 11:1, pages 254.
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Francesca Palese, Gian Luigi Gigli, Paolo Manganotti, Paolo Passadore, Michele Rana & Lorenzo Verriello. (2021) The diagnostic, therapeutic and assistance pathway for amyotrophic lateral sclerosis in a north‐eastern Italian region: satisfaction of patients and their caregivers. Health & Social Care in the Community 30:1, pages 124-132.
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Katy Tobin, Sinead Maguire, Bernie Corr, Charles Normand, Orla Hardiman & Miriam Galvin. (2021) Discrete choice experiment for eliciting preference for health services for patients with ALS and their informal caregivers. BMC Health Services Research 21:1.
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Marie Kierkegaard, Kristina Gottberg, Sverker Johansson, Susanne Littorin, Petter Sandstedt, Charlotte Ytterberg & Lotta Widén Holmqvist. (2021) Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study. Journal of Neuromuscular Diseases 8:6, pages 1079-1088.
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Miguel Julião, Maria Ana Sobral, Paula Calçada, Bárbara Antunes, Baltazar Nunes, Ana Bragança, Daniela Runa, Paulo Faria de Sousa, Harvey Max Chochinov & Eduardo Bruera. (2020) “Truly holistic?” Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients. Palliative and Supportive Care 19:1, pages 69-74.
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Samar M. Aoun, Paul A. Cafarella, Anne Hogden, Geoff Thomas, Leanne Jiang & Robert Edis. (2021) Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective. Palliative Care and Social Practice 15, pages 263235242110095.
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Robert Steinbach, Tino Prell, Nayana Gaur, Beatrice Stubendorff, Annekathrin Roediger, Benjamin Ilse, Otto W. Witte & Julian Grosskreutz. (2020) Triage of Amyotrophic Lateral Sclerosis Patients during the COVID-19 Pandemic: An Application of the D50 Model. Journal of Clinical Medicine 9:9, pages 2873.
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Eleftherios Anestis, Fiona Eccles, Ian Fletcher, Maddy French & Jane Simpson. (2020) Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives. Patient Education and Counseling 103:9, pages 1709-1723.
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Helen Aret Brewah. (2019) A qualitative study of the preparedness of practitioners to care for people with motor neurone disease in their homes. Primary Health Care 29:5, pages 38-44.
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Jessica de Wit, Carin D. Schröder, Julia el Mecky, Anita Beelen, Leonard H. van den Berg & Johanna M. A. Visser-Meily. (2018) Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study. Palliative and Supportive Care 17:2, pages 195-201.
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Dorothée Lulé, Andrea Kübler & Albert C. Ludolph. (2019) Ethical Principles in Patient-Centered Medical Care to Support Quality of Life in Amyotrophic Lateral Sclerosis. Frontiers in Neurology 10.
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Antje A Seeber, A Jeannette Pols, Albert Hijdra, Hepke F Grupstra, Dick L Willems & Marianne de Visser. (2019) Experiences and reflections of patients with motor neuron disease on breaking the news in a two-tiered appointment: a qualitative study. BMJ Supportive & Palliative Care 9:1, pages e8-e8.
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Anne Hogden, Samar M. Aoun & Peter L. Silbert. (2018) Palliative Care in Neurology: Integrating a Palliative Approach to Amyotrophic Lateral Sclerosis Care. EMJ Neurology, pages 68-76.
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Denise Andrea Harris, Kirsten Jack & Christopher Wibberley. (2018) The meaning of living with uncertainty for people with motor neurone disease. Journal of Clinical Nursing 27:9-10, pages 2062-2071.
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Melanie Harris, Geoff Thomas, Mary Thomas, Paul Cafarella, Allegra Stocks, Julia Greig & R. Doug McEvoy. (2017) Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliative and Supportive Care 16:2, pages 228-237.
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Nathan D. Shippee, Tetyana P. Shippee, Patrick D. Mobley, Karl M. Fernstrom & Heather R. Britt. (2017) Effect of a Whole-Person Model of Care on Patient Experience in Patients With Complex Chronic Illness in Late Life. American Journal of Hospice and Palliative Medicine® 35:1, pages 104-109.
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Sabrina Cipolletta, Giorgia Rosamaria Gammino & Arianna Palmieri. (2017) Illness trajectories in patients with amyotrophic lateral sclerosis: How illness progression is related to life narratives and interpersonal relationships. Journal of Clinical Nursing 26:23-24, pages 5033-5043.
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Juyeon Oh & Jung A Kim. (2017) Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review. Journal of Clinical Nursing 26:23-24, pages 4129-4152.
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Brenda BentleyMoira O'Connor. (2016) The End-of-Life Experiences of People with Motor Neuron Disease: Family Carers' Perspectives. Journal of Palliative Medicine 19:8, pages 857-862.
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Nicole Hennessy Anderson, Cathy Gluyas, Susan Mathers, Peter Hudson & Anna Ugalde. (2016) “A monster that lives in our lives”: experiences of caregivers of people with motor neuron disease and identifying avenues for support: Table 1. BMJ Supportive & Palliative Care, pages bmjspcare-2015-001057.
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Mary R O'Brien & Harriet Preston. (2015) Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis. BMJ Supportive & Palliative Care 5:5, pages 503-509.
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Anne Hogden, David Greenfield, Peter Nugus & Matthew C Kiernan. (2015) Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care. Health Expectations 18:5, pages 1769-1782.
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Geraldine Foley & Virpi Timonen. (2015) Using Grounded Theory Method to Capture and Analyze Health Care Experiences. Health Services Research 50:4, pages 1195-1210.
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Mitsuko Ushikubo. (2014) Comparison Between Home and Hospital as the Place of Death for Individuals With Amyotrophic Lateral Sclerosis in the Last Stages of Illness. American Journal of Hospice and Palliative Medicine® 32:4, pages 417-426.
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Geraldine Foley, Virpi Timonen & Orla Hardiman. (2014) Understanding psycho-social processes underpinning engagement with services in motor neurone disease: A qualitative study. Palliative Medicine 28:4, pages 318-325.
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Marian Arbesman & Kendra Sheard. (2014) Systematic Review of the Effectiveness of Occupational Therapy–Related Interventions for People With Amyotrophic Lateral Sclerosis. The American Journal of Occupational Therapy 68:1, pages 20-26.
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