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Cathryn Pinto, Adam W. A. Geraghty, Charlotte McLoughlin, Francesco Pagnini, Lucy Yardley & Laura Dennison. (2023) Experiences of psychological interventions in neurodegenerative diseases: a systematic review and thematic synthesis. Health Psychology Review 17:3, pages 416-438.
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Francesco Pagnini, Deborah Phillips, Anne Haulman, Matthew Bankert, Zachary Simmons & Ellen Langer. (2022) An online non-meditative mindfulness intervention for people with ALS and their caregivers: a randomized controlled trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:1-2, pages 116-127.
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Esther T. Kruitwagen-Van Reenen, Eline W. M. Scholten, Annerieke van Groenestijn, Leonard H. Van Den Berg, Marcel W. M. Post & Johanna Visser-Meily. (2021) Participation and autonomy in the first 10 months after diagnosis of ALS: a longitudinal study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:7-8, pages 459-466.
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Nicolò Zarotti, Emily Mayberry, Noora Ovaska-Stafford, Fiona Eccles & Jane Simpson. (2021) Psychological interventions for people with motor neuron disease: a scoping review. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:1-2, pages 1-11.
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Eleonora Volpato, Paola Pierucci, Maria Luisa De Candia, Massimo Casparrini, Valeria Volpi, Francesco Pagnini, Giovanna Elisiana Carpagnano & Paolo Banfi. (2023) Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19. Journal of Neuromuscular Diseases 10:4, pages 517-529.
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Reza Boostani, Nahid Olfati, Hosein Shamshiri, Zanireh Salimi, Farzad Fatehi, Seyed Arya Hedjazi, Atefeh Fakharian, Majid Ghasemi, Ali Asghar Okhovat, Keivan Basiri, Bahram Haghi Ashtiani, Behnaz Ansari, Gholam Reza Raissi, Seyed Ahmadreza Khatoonabadi, Payam Sarraf, Sara Movahed, Akram Panahi, Bentolhoda Ziaadini, Mohammad Yazdchi, Jalal Bakhtiyari & Shahriar Nafissi. (2023) Iranian clinical practice guideline for amyotrophic lateral sclerosis. Frontiers in Neurology 14.
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Priya Treesa Thomas, Manjusha G Warrier, S Arun, B Bhuvaneshwari, Seena Vengalil, Saraswati Nashi, Veeramani Preethish-Kumar, Kiran Polavarapu, Prakashi Rajaram & Atchayaram Nalini. (2022) An individualised psychosocial intervention program for persons with MND/ALS and their families in low resource settings. Chronic Illness 19:2, pages 458-471.
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Paul Cafarella, Tanja Effing & Anna Chur-Hansen. (2022) Interventions targeting psychological well-being for motor neuron disease carers: A systematic review. Palliative and Supportive Care 21:2, pages 320-336.
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Louise Rose, Thilipan Thaventhiran, Esther Hobson, Rebecca Rogers, Kirsty James, Petrina Chu, Ben Carter, Christina Faull, Sian Saha, Jeong Su Lee, Georgios Kaltsakas, Christopher McDermott & Michelle Ramsay. (2023) Digital peer-to-peer support programme for informal caregivers of people living with motor neuron disease: study protocol for a multi-centre parallel group, single-blinded (outcome assessor) randomised controlled superiority trial. Trials 24:1.
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Cathryn Pinto, Adam W. A. Geraghty, Francesco Pagnini, Lucy Yardley & Laura Dennison. (2023) How do people with MND and caregivers experience a digital mental health intervention? A qualitative study. Frontiers in Psychiatry 14.
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Manjusha G Warrier, Priya Treesa Thomas, Arun Sadasivan, Saraswati Nashi, Seena Vengalil & A. Nalini. (2022) Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context. Journal of Patient Experience 9, pages 237437352210775.
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Emily M. Lund, Trisha A. Hostetter, Jeri E. Forster, Claire A. Hoffmire, Kelly A. Stearns‐Yoder, Lisa A. Brenner & Maryam Tahmasbi Sohi. (2021) Suicide among veterans with amyotrophic lateral sclerosis. Muscle & Nerve 63:6, pages 807-811.
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Colin J. Mahoney, Rebekah M. Ahmed, William Huynh, Sicong Tu, Jonathan D. Rohrer, Richard S. Bedlack, Orla Hardiman & Matthew C. Kiernan. (2021) Pathophysiology and Treatment of Non-motor Dysfunction in Amyotrophic Lateral Sclerosis. CNS Drugs 35:5, pages 483-505.
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Oscar Martínez, Imanol Amayra, Juan Francisco López-Paz, Esther Lázaro, Patricia Caballero, Irune García, Alicia Aurora Rodríguez, Maitane García, Paula María Luna, Paula Pérez-Núñez, Jaume Barrera, Nicole Passi, Sarah Berrocoso, Manuel Pérez & Mohammad Al-Rashaida. (2021) Effects of Teleassistance on the Quality of Life of People With Rare Neuromuscular Diseases According to Their Degree of Disability. Frontiers in Psychology 12.
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Danielle B. Rice, Andrea Carboni-Jiménez, Mara Cañedo-Ayala, Kimberly A. Turner, Matthew Chiovitti, Alexander W. Levis & Brett D. Thombs. (2020) Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review. The Patient - Patient-Centered Outcomes Research 13:5, pages 471-519.
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Afolasade Fakolade, Alexandra J. Walters, Julie Cameron, Amy E. Latimer-Cheung & Lara A. Pilutti. (2020) Healthy together: A systematic review of theory and techniques used in health interventions for persons with chronic neurological conditions and their caregivers. Patient Education and Counseling 103:4, pages 788-803.
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Jéssica Paloma Rosa Silva, José Bomfim Santiago Júnior, Elizabete Lima dos Santos, Fernanda Oliveira de Carvalho, Iandra Maria Pinheiro de França Costa & Deise Maria Furtado de Mendonça. (2020) Quality of life and functional independence in amyotrophic lateral sclerosis: A systematic review. Neuroscience & Biobehavioral Reviews 111, pages 1-11.
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Tom Burke, Jennifer Wilson O'Raghallaigh, Sinead Maguire, Miriam Galvin, Mark Heverin, Orla Hardiman & Niall Pender. (2019) Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised controlled trial protocol. BMJ Open 9:9, pages e030684.
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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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Annerieke C. van Groenestijn, Carin D. Schröder, Ruben P. A. van Eijk, Jan H. Veldink, Esther T. Kruitwagen-van Reenen, Jan T. Groothuis, Hepke F. Grupstra, Marga Tepper, Reinout O. van Vliet, Johanna M. A. Visser-Meily & Leonard H. van den Berg. (2019) Aerobic Exercise Therapy in Ambulatory Patients With ALS: A Randomized Controlled Trial. Neurorehabilitation and Neural Repair 33:2, pages 153-164.
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Alfredo J. Selim, Shirley X. Qian, William Rogers, Deepa Arya, Kimberly Simmons, Gabriel D. Shapiro, Lily A. Sonis & Lewis E. Kazis. (2019) Health Status in Adults With Chronic Conditions. Journal of Ambulatory Care Management 42:1, pages 2-20.
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Jessica de Wit, Anita Beelen, Constance H. C. Drossaert, Ruud Kolijn, Leonard H. van den Berg, Johanna M. A. Visser-Meily & Carin D. Schröder. (2018) A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial. BMC Psychology 6:1.
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Petter Sandstedt, Susanne Littorin, Gunilla Cröde Widsell, Sverker Johansson, Kristina Gottberg, Charlotte Ytterberg, Mariann Olsson, Lotta Widén Holmqvist & Marie Kierkegaard. (2018) Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study. Journal of Clinical Nursing 27:23-24, pages 4321-4330.
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Petter Sandstedt, Susanne Littorin, Sverker Johansson, Kristina Gottberg, Charlotte Ytterberg & Marie Kierkegaard. (2018) Disability and Contextual Factors in Patients with Amyotrophic Lateral Sclerosis - A Three-Year Observational Study. Journal of Neuromuscular Diseases 5:4, pages 439-449.
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Moritz Caspar Franz Oberstadt, Peter Esser, Joseph Classen & Anja Mehnert. (2018) Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention. Frontiers in Neurology 9.
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Anna Ugalde, Susan Mathers, Nicole Hennessy Anderson, Peter Hudson, Liliana Orellana & Cathy Gluyas. (2017) A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study. Palliative Medicine 32:4, pages 726-732.
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Meredith BockY.-Nhy DuongAnthony KimIsabel AllenJennifer MurphyCatherine Lomen-Hoerth. (2017) Progression and effect of cognitive-behavioral changes in patients with amyotrophic lateral sclerosis. Neurology Clinical Practice 7:6, pages 488-498.
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Cathy Gluyas, Susan Mathers, Nicole Hennessy Anderson & Anna Ugalde. (2016) Factors to consider for motor neurone disease carer intervention research: A narrative literature review. Palliative and Supportive Care 15:5, pages 600-608.
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F. Pagnini, A. Marconi, A. Tagliaferri, G. M. Manzoni, R. Gatto, V. Fabiani, G. Gragnano, G. Rossi, E. Volpato, P. Banfi, A. Palmieri, F. Graziano, G. Castelnuovo, M. Corbo, E. Molinari, N. Riva, V. Sansone & C. Lunetta. (2017) Meditation training for people with amyotrophic lateral sclerosis: a randomized clinical trial. European Journal of Neurology 24:4, pages 578-586.
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Ton Fang, Felix Jozsa & Ammar Al-Chalabi. 2017. Nonmotor Parkinson’s: The Hidden Face - Management and the Hidden Face of Related Disorders. Nonmotor Parkinson’s: The Hidden Face - Management and the Hidden Face of Related Disorders
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Elaine Walklet, Kate Muse, Jane Meyrick & Tim Moss. (2016) Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis. Journal of Neuromuscular Diseases 3:3, pages 347-362.
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