Literature DB >> 28631958

"Anything that makes life's journey better." Exploring the use of digital technology by people living with motor neurone disease.

Esther V Hobson1,2, Saima Fazal1, Pamela J Shaw1, Christopher J McDermott1.   

Abstract

Our aim was to explore the attitudes of those living with motor neuron disease towards digital technology. Postal and online questionnaires surveyed 83 people with MND (pwMND) and 54 friends and family members (fMND). Five pwMND and five fMND underwent semi-structured interviews. 82% of pwMND and 87% of fMND use technology every day with iPads and laptops being the devices most commonly used. pwMND used technology to help them continue to participate in everyday activities such as socialising, entertainment and accessing the internet. The internet provided peer support and information about MND but information could be distressing or unreliable. Participants preferred information from professionals and official organisations. Participants were generally supportive of using of technology to access medical care. Barriers to technology, such as lack of digital literacy skills and upper limb dysfunction, and potential solutions were identified. More challenging barriers included language and cognitive difficulties, and the fear of becoming dependent on technology. Addressing the barriers identified in this research could help pwMND access technology. However, as healthcare delivery becomes more reliant on digital technology, care should be taken to ensure that those who are unable or unwilling to use technology continue to have their needs met in alternative ways.

Entities:  

Keywords:  Self-help devices; amoytrophic lateral sclerosis; information science; telemedicine

Mesh:

Year:  2017        PMID: 28631958     DOI: 10.1080/21678421.2017.1288253

Source DB:  PubMed          Journal:  Amyotroph Lateral Scler Frontotemporal Degener        ISSN: 2167-8421            Impact factor:   4.092


  4 in total

Review 1.  Progress in Brain Computer Interface: Challenges and Opportunities.

Authors:  Simanto Saha; Khondaker A Mamun; Khawza Ahmed; Raqibul Mostafa; Ganesh R Naik; Sam Darvishi; Ahsan H Khandoker; Mathias Baumert
Journal:  Front Syst Neurosci       Date:  2021-02-25

2.  Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre.

Authors:  Esther Hobson; Wendy Baird; Mike Bradburn; Cindy Cooper; Susan Mawson; Ann Quinn; Pamela J Shaw; Theresa Walsh; Christopher J McDermott
Journal:  BMJ Open       Date:  2019-10-22       Impact factor: 2.692

3.  Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol.

Authors:  Rose Maunsell; Suzanne Bloomfield; Clare Erridge; Claire Foster; Maggi Hardcastle; Anne Hogden; Alison Kidd; Dominika Lisiecka; Christopher J McDermott; Karen Morrison; Alejandra Recio-Saucedo; Louise Rickenbach; Sean White; Peter Williams; Sally J Wheelwright
Journal:  BMJ Open       Date:  2019-12-18       Impact factor: 2.692

Review 4.  New technologies and Amyotrophic Lateral Sclerosis - Which step forward rushed by the COVID-19 pandemic?

Authors:  Susana Pinto; Stefano Quintarelli; Vincenzo Silani
Journal:  J Neurol Sci       Date:  2020-08-05       Impact factor: 3.181

  4 in total

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