Assistive devices for ALS patients: exploring wishes and values through focus groups.
Purpose: Amyotrophic Lateral Sclerosis (ALS) is a progressive disease leading to loss of muscle strength and control, and as such limiting patients' independence. Assistive devices can help individuals with ALS; however, their use by ALS patients is limited. To increase use rates, we expect that dev...
| Publicado en: | Disability & Rehabilitation: Assistive Technology Vol. 20; no. 8; pp. 2960 - 2973 |
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| Autores principales: | , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Nov2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=189411291&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 189411291 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 17483107 1X04 jtl: Disability & Rehabilitation: Assistive Technology issn: 17483107 maglogo: Y pubinfo: dt: Nov2025 vid: 20 iid: 8 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 189411291 185844770 189411291 189411291 10.1080/17483107.2025.2516628 189411291 ppf: 2960 ppct: 13 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Assistive devices for ALS patients: exploring wishes and values through focus groups. aug: au: Lucassen, Hein J. Prinsen, Erik C. Asseln, Malte van Vliet, Reinout O. Tuijthof, Gabriëlle J. M. affil: Department of Biomechanical Engineering, University of Twente, Enschede, The Netherlands sug: subj: Assistive Technology Devices Amyotrophic Lateral Sclerosis Rehabilitation Upper Extremity Patient Attitudes Evaluation Extended Family Psychosocial Factors Health Personnel Psychosocial Factors Equipment Design Human Funding Source Female Male Middle Age Aged Qualitative Studies Focus Groups Audiorecording Comparative Studies Thematic Analysis Descriptive Statistics Data Analysis Software Motor Neuron Diseases Activities of Daily Living Hobbies Middle Aged: 45-64 years Aged: 65+ years Female Male ab: Purpose: Amyotrophic Lateral Sclerosis (ALS) is a progressive disease leading to loss of muscle strength and control, and as such limiting patients' independence. Assistive devices can help individuals with ALS; however, their use by ALS patients is limited. To increase use rates, we expect that devices need to be tailored to ALS patients. The aim of this study was to identify wishes, requirements and values of ALS patients regarding assistive devices for the upper extremity through focus groups involving ALS patients, their relatives and medical professionals. Methods and Materials: Four focus groups were conducted, recorded and transcribed. Two focus groups with ALS patients and their relatives contained a "Day in a Life" and "Empathy map" method, while during two focus groups with medical professionals, "Day in the Life" method and "Provoking statements" were used. Activities mentioned were counted and categorized into "Daily activities" and "Elective activities". Results: Qualitative analysis of transcripts yielded three themes: (1) ALS patients' considerations on use and wishes for assistive devices, (2) external factors influencing the use of assistive devices and (3) change in ALS patients' needs over time. In addition to maintaining independence in activities of daily living, the results highlight that retaining the ability to perform elective activities such as hobbies, is important. Moreover, there is a clear need for assistive devices designed for ALS patients with limited upper extremity strength, but who are not confined to a wheelchair. Conclusion: These findings can guide the development of assistive devices tailored to the needs of ALS patients. IMPLICATIONS FOR REHABILITATION: This study offers valuable insights for developers of assistive technology to design solutions that are aligned with the needs of ALS patients. Novel devices should tailor designs to ALS patients with limited upper extremity strength who are not confined to a wheelchair. Improving device usage rates can be achieved not only through focus on Activities of Daily living, but also by focus on elective activities, such as hobbies. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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