Experiences with assistive technologies and devices (ATD) in patients with amyotrophic lateral sclerosis (ALS) and their caregivers.
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a severe neurologic disease. Affected patients suffer from a gradual loss of functional capacities. The use of assistive technology and devices (ATD) can help them sustain their autonomy and ability of social participation. OBJECTIVE: The objective...
| Publicado en: | Technology & Disability Vol. 31; no. 4; pp. 203 - 216 |
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| Autores principales: | , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
2019
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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=140922648&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 140922648 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10554181 3QS jtl: Technology & Disability issn: 10554181 maglogo: N pubinfo: dt: 2019 vid: 31 iid: 4 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 140922648 140922648 140922648 10.3233/TAD-190227 140922648 ppf: 203 ppct: 13 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Experiences with assistive technologies and devices (ATD) in patients with amyotrophic lateral sclerosis (ALS) and their caregivers. aug: au: Eicher, Cornelia Kiselev, Jörn Brukamp, Kirsten Kiemel, Diana Spittel, Susanne Maier, André Meyer, Thomas Oleimeulen, Ursula Greuèl, Marius affil: Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Germany sug: subj: Assistive Technology Devices Utilization Amyotrophic Lateral Sclerosis Caregiver Attitudes Patient Attitudes Quality of Life Human Semi-Structured Interview Usability Study Stigma Caregiver Burden Adaptation, Physiological Adaptation, Psychological Male Female Middle Age Aged Aged, 80 and Over Adult Qualitative Studies Middle Aged: 45-64 years Aged: 65+ years Aged, 80 & over Adult: 19-44 years Male Female ab: BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a severe neurologic disease. Affected patients suffer from a gradual loss of functional capacities. The use of assistive technology and devices (ATD) can help them sustain their autonomy and ability of social participation. OBJECTIVE: The objective of this study was to analyze the experiences with ATD and to identify issues related to the use of ATD among ALS patients and their caregivers. METHODS: Semi-structured interviews were conducted with five ALS patients, five caregiving relatives, and five professional caregivers within a group discussion. Questions related to the living and support situation, expectations to and experiences with ATD, related problems and usage barriers. RESULTS: Three main areas that affected the experiences with ATD of ALS patients and their caregivers could be identified: usability of ATD, stigmatization due to ATD and the ATD supply process. Inadequate ATD and ATD supply negatively affected the patients' quality of life and constituted a burden for caregivers. CONCLUSIONS: The presented study results give an important overview about the experiences of ALS patients and their caregivers with ATD. Strategies to approach identified issues could involve the implementation of a case management, patient empowerment, and an adaptation of ATD to meet user requirements. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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