Massey, C. orcid.org/0000-0003-2646-2724, Hobson, E. orcid.org/0000-0002-8497-2338, McDermott, C. orcid.org/0000-0002-1269-9053 et al. (1 more author) (2025) Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers. Disability and Rehabilitation. ISSN: 0963-8288
Abstract
Purpose: To explore the experiences of people living with amyotrophic lateral sclerosis (ALS) and their caregivers managing cough and secretion problems. Methods: A qualitative study was completed with 15 individuals participating in 10 interviews; 10 people living with ALS and five informal caregivers. Interview methods were adapted to ensure inclusivity of participants who had physical, respiratory and communication impairments. Data was analysed inductively using reflexive thematic analysis. Results: Our analysis identified the challenges of living day to day with cough and secretion problems. Care coordination and the presence of informal caregivers were important in ensuring that cough and secretion interventions could be implemented successfully. Participants felt access to cough and secretion knowledge and skills specific to ALS was key to supporting care and supported them to acquire information which influenced decision-making around their care. Conclusion: Cough and secretion care in ALS is multifaceted and multifactorial. Future development of clinical interventions in this area are needed to support the complex web of professionals, treatments and knowledge to optimise care.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2025 The Authors. This is an Open Access article distributed under the terms of the Creative Commons Attribution Licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
Keywords: | Amyotrophic lateral sclerosis (ALS); cough; motor neuron disease (MND); multidisciplinary care; secretion management; sialorrhoea |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Medicine and Population Health |
Funding Information: | Funder Grant number MOTOR NEURONE DISEASE ASSOCIATION / MNDA UNSPECIFIED DEPARTMENT OF HEALTH AND SOCIAL CARE NIHR301648 |
Date Deposited: | 02 Oct 2025 10:19 |
Last Modified: | 02 Oct 2025 10:19 |
Published Version: | https://doi.org/10.1080/09638288.2025.2555973 |
Status: | Published online |
Publisher: | Informa UK Limited |
Refereed: | Yes |
Identification Number: | 10.1080/09638288.2025.2555973 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:232419 |