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Disability and Rehabilitation Volume 41, 2019 - Issue 12
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Original Article

“Understanding my ALS”. Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation

Louise Sofia MadsenDepartment of Public Health, Faculty of Health, Section for Clinical Social Medicine and Rehabilitation, Aarhus University, Aarhus, Denmark; ;DEFACTUM, Central Denmark Region, Denmark; Correspondence[email protected]
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,
Jørgen JeppesenThe National Rehabilitation Centre for Neuromuscular Diseases, Aarhus, DenmarkView further author information
&
Charlotte HandbergDepartment of Public Health, Faculty of Health, Section for Clinical Social Medicine and Rehabilitation, Aarhus University, Aarhus, Denmark; ;DEFACTUM, Central Denmark Region, Denmark; View further author information
Pages 1410-1418 | Received 22 Aug 2017, Accepted 15 Jan 2018, Published online: 26 Jan 2018

Citations (14)

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Read on this site (3)

C. Paynter, S. Mathers, H. Gregory, A. P. Vogel & M. Cruice. (2022) How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration. Disability and Rehabilitation 44:13, pages 3095-3103.
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Hikari Ando, Rosanna Cousins & Carolyn A. Young. (2022) Flexibility to manage and enhance quality of life among people with motor neurone disease. Disability and Rehabilitation 44:12, pages 2752-2762.
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C. Handberg, P. Myrup & A-L. Højberg. (2022) “I was worried about not being good enough”. Experiences and perspectives on pregnancy, childbirth and parenthood when living with a neuromuscular disorder – an exploration of everyday life challenges. Disability and Rehabilitation 44:10, pages 1821-1829.
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Articles from other publishers (11)

Charlotte Handberg & Ulla Werlauff. (2023) Cross-sectoral collaboration among hospital professionals on rehabilitation for patients with neuromuscular diseases. Neurodegenerative Disease Management 13:3, pages 161-175.
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Lene Klem Olesen, Karen la Cour, Sally Thorne, Heidi With & Charlotte Handberg. (2023) Perceived benefits from peer‐support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme. Journal of Evaluation in Clinical Practice 29:4, pages 602-613.
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Charlotte Handberg, Lene Seibæk, Sally Thorne & Kirsten Beedholm. (2023) Reflections on the Complexity of Normalcy in Nursing and Health Care. Advances in Nursing Science 46:2, pages 210-218.
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Filipe Gonçalves, Margarida I. Teixeira & Bruno Magalhães. (2022) The role of spirituality in people with amyotrophic lateral sclerosis and their caregivers: Scoping review. Palliative and Supportive Care, pages 1-11.
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Lene Klem Olesen, Karen la Cour, Heidi With, Annette Faber Mahoney & Charlotte Handberg. (2022) A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments. BMC Health Services Research 22:1.
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Camille Paynter, Susan Mathers, Heidi Gregory, Adam P. Vogel & Madeline Cruice. (2022) The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study. International Journal of Language & Communication Disorders 57:6, pages 1318-1333.
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Ling Lian, Minying Zheng, Ruojie He, Jianing Lin, Weineng Chen, Zhong Pei & Xiaoli Yao. (2022) Analysing the influencing factors on caregivers’ burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining. BMJ Open 12:9, pages e066402.
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Camille Paynter, Susan Mathers, Heidi Gregory, Adam P. Vogel & Madeline Cruice. (2022) Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study. Healthcare 10:8, pages 1371.
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Vittoria Anita Bilenchi, Paolo Banfi, Francesco Pagnini & Eleonora Volpato. (2022) Psychoeducational groups for people with Amyotrophic Lateral Sclerosis and their caregiver: a qualitative study. Neurological Sciences 43:7, pages 4239-4255.
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Tine Gamskjaer, Ulla Werlauff & Charlotte Handberg. (2021) Investigating job satisfaction in palliative rehabilitation: Reflections and perspectives of health professionals working with amyotrophic lateral sclerosis. Journal of Evaluation in Clinical Practice 28:1, pages 108-119.
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Angeliki Bogosian, Lorna Rixon & Catherine S. Hurt. (2020) Prioritising target non-pharmacological interventions for research in Parkinson’s disease: achieving consensus from key stakeholders. Research Involvement and Engagement 6:1.
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