“Anything that makes life's journey better.” Exploring the use of digital technology by people living

63 Pages·2017·1.85 MB·English

This is a repository copy of “Anything that makes life’s journey better.” Exploring the use of
digital technology by people living with motor neurone disease.
White Rose Research Online URL for this paper:
http://eprints.whiterose.ac.uk/113625/
Version: Accepted Version
Article:
Hobson, E.V. orcid.org/0000-0002-8497-2338, Fazal, S., Shaw, P.J.
orcid.org/0000-0002-8925-2567 et al. (1 more author) (2017) “Anything that makes life’s
journey better.” Exploring the use of digital technology by people living with motor neurone
disease. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. ISSN
2167-8421
https://doi.org/10.1080/21678421.2017.1288253
This is an Accepted Manuscript of an article published by Taylor & Francis in Amyotrophic
Lateral Sclerosis and Frontotemporal Degeneration on 20/02/2017, available online:
http://www.tandfonline.com/10.1080/21678421.2017.1288253.
Reuse
Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright
exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy
solely for the purpose of non-commercial research or private study within the limits of fair dealing. The
publisher or other rights-holder may allow further reproduction and re-use of this version - refer to the White
Rose Research Online record for this item. Where records identify the publisher as the copyright holder,
users can verify any specific terms of use on the publisher’s website.
Takedown
If you consider content in White Rose Research Online to be in breach of UK law, please notify us by
emailing [email protected] including the URL of the record and the reason for the withdrawal request.
[email protected]
https://eprints.whiterose.ac.uk/
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
(cid:1) (cid:1)
F
(cid:1)
o
(cid:1) (cid:1)
r
(cid:1)

(cid:1)(cid:2)(cid:3)(cid:4)(cid:5)(cid:6)(cid:7)(cid:3)(cid:8)(cid:9)(cid:5)(cid:6)(cid:10)(cid:5)(cid:9)(cid:11)(cid:10)(cid:12)(cid:13)(cid:14)(cid:9)(cid:15)(cid:7)(cid:16)(cid:13)(cid:17)(cid:14)(cid:9)(cid:18)(cid:19)(cid:20)(cid:21)(cid:3)(cid:13)(cid:4)(cid:9)(cid:22)(cid:13)(cid:5)(cid:5)(cid:13)(cid:21)(cid:23)(cid:24)(cid:9)(cid:25)(cid:26)(cid:27)(cid:15)(cid:19)(cid:21)(cid:7)(cid:3)(cid:8)(cid:9)(cid:5)(cid:6)(cid:13)(cid:9)
(cid:20)(cid:14)(cid:13)(cid:9)(cid:19)(cid:16)(cid:9)(cid:28)P(cid:7)(cid:8)(cid:7)(cid:5)(cid:10)(cid:15)(cid:9)(cid:5)(cid:13)(cid:29)(cid:6)(cid:3)(cid:19)(cid:15)(cid:19)(cid:8)(cid:4)(cid:9)(cid:22)(cid:4)(cid:9)(cid:27)(cid:13)(cid:19)(cid:27)(cid:15)(cid:13)(cid:9)(cid:15)(cid:7)(cid:30)(cid:7)(cid:3)(cid:8)(cid:9)(cid:31)(cid:7)(cid:5)(cid:6)(cid:9)(cid:11)(cid:19)(cid:5)(cid:19)(cid:21)(cid:9)
(cid:3)(cid:13)(cid:20)(cid:21)(cid:19)(cid:3)(cid:13)(cid:9)(cid:28)(cid:7)(cid:14)(cid:13)(cid:10)(cid:14)(cid:13)(cid:1)
(cid:1) e
(cid:1)
e
r
(cid:2)(cid:3)(cid:4)(cid:5)(cid:6)(cid:7)(cid:8)(cid:9)(cid:1) (cid:1)(cid:2)(cid:3)(cid:4)(cid:5)(cid:6)(cid:4)(cid:7)(cid:8)(cid:9)(cid:10)(cid:11)(cid:12)(cid:13)(cid:5)(cid:14)(cid:6)(cid:13)(cid:15)(cid:11)(cid:16)(cid:10)(cid:15)(cid:14)(cid:6)(cid:4)(cid:17)(cid:9)(cid:17)(cid:11)(cid:13)(cid:18)(cid:19)(cid:11)(cid:20)(cid:6)(cid:4)(cid:18)(cid:5)(cid:4)(cid:5)(cid:14)(cid:2)(cid:7)(cid:4)(cid:6)(cid:13)(cid:15)(cid:11)(cid:21)(cid:14)(cid:22)(cid:14)(cid:18)(cid:14)(cid:6)(cid:13)(cid:5)(cid:9)(cid:4)(cid:18)(cid:1)

(cid:10)(cid:7)(cid:6)(cid:4)(cid:11)(cid:12)(cid:5)(cid:13)(cid:14)(cid:15)(cid:1)(cid:16)(cid:17)(cid:1) (cid:10)(cid:18)(cid:19)(cid:20)(cid:21)(cid:22)(cid:23)(cid:24)(cid:25)(cid:21)(cid:23)(cid:24)(cid:26)(cid:22)(cid:27)(cid:28)(cid:22)(cid:1)
R
(cid:10)(cid:7)(cid:6)(cid:4)(cid:11)(cid:12)(cid:5)(cid:13)(cid:14)(cid:15)(cid:1)(cid:29)(cid:30)(cid:14)(cid:31)(cid:9)(cid:1) (cid:5)(cid:13)!(cid:13)(cid:6)(cid:7)(cid:8)(cid:1)(cid:18)(cid:5)(cid:15)(cid:13)(cid:12)(cid:8)(cid:31)(cid:1)
(cid:17)(cid:7)(cid:15)(cid:31)(cid:1)(cid:20)(cid:4)"#(cid:13)(cid:15)(cid:15)(cid:31)$(cid:1)"(cid:30)(cid:1)(cid:15)%(cid:31)(cid:1)(cid:18)(cid:4)(cid:15)%(cid:3)(cid:5)(cid:9)(cid:1) (cid:6)&(cid:7)(cid:1) e
’(cid:3)#(cid:14)(cid:8)(cid:31)(cid:15)(cid:31)(cid:1)(cid:19)(cid:13)(cid:11)(cid:15)(cid:1)(cid:3)((cid:1)(cid:18)(cid:4)(cid:15)%(cid:3)(cid:5)(cid:11)(cid:9)(cid:1) )(cid:3)"(cid:11)(cid:3)(cid:6)*(cid:1)+(cid:11)(cid:15)%(cid:31)(cid:5),(cid:1)(cid:20)%(cid:31)v(((cid:13)(cid:31)(cid:8)$(cid:1)-(cid:6)(cid:13).(cid:31)(cid:5)(cid:11)(cid:13)(cid:15)(cid:30)*(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)(cid:16)(cid:6)(cid:11)(cid:15)(cid:13)(cid:15)(cid:4)(cid:15)(cid:31)(cid:1)(cid:3)((cid:1)(cid:29)(cid:5)(cid:7)(cid:6)(cid:11)(cid:8)(cid:7)(cid:15)(cid:13)(cid:3)(cid:6)(cid:7)(cid:8)(cid:1)
/(cid:31)(cid:4)(cid:5)(cid:3)(cid:11)(cid:12)(cid:13)(cid:31)(cid:6)(cid:12)(cid:31),(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)i(cid:29)(cid:31)(cid:7)(cid:12)%(cid:13)(cid:6)!(cid:1))(cid:3)(cid:11)(cid:14)(cid:13)(cid:15)(cid:7)(cid:8)(cid:11)(cid:1)/)(cid:20)(cid:1)(cid:29)(cid:5)(cid:4)(cid:11)(cid:15)*(cid:1)(cid:18)(cid:12)(cid:7)$(cid:31)#(cid:13)(cid:12)(cid:1)
$(cid:31)(cid:14)(cid:7)(cid:5)(cid:15)#(cid:31)(cid:6)(cid:15)(cid:1)(cid:3)((cid:1)(cid:12)(cid:8)(cid:13)(cid:6)(cid:13)(cid:12)(cid:7)(cid:8)(cid:1)(cid:6)(cid:31)(cid:4)(cid:5)(cid:3)(cid:8)(cid:3)!(cid:30)(cid:1)
0(cid:7)1(cid:7)(cid:8)*(cid:1)(cid:20)(cid:7)(cid:13)#(cid:7),(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)-(cid:6)e(cid:13).(cid:31)(cid:5)(cid:11)(cid:13)(cid:15)(cid:30)*(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)(cid:16)(cid:6)(cid:11)(cid:15)(cid:13)(cid:15)(cid:4)(cid:15)(cid:31)(cid:1)(cid:3)((cid:1)(cid:29)(cid:5)(cid:7)(cid:6)(cid:11)(cid:8)(cid:7)(cid:15)(cid:13)(cid:3)(cid:6)(cid:7)(cid:8)(cid:1)
/(cid:31)(cid:4)(cid:5)(cid:3)(cid:11)(cid:12)(cid:13)(cid:31)(cid:6)(cid:12)(cid:31)(cid:1)
(cid:20)%(cid:7)2*(cid:1)3(cid:7)#(cid:31)(cid:8)(cid:7),(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)-(cid:6)(cid:13).(cid:31)(cid:5)(cid:11)(cid:13)(cid:15)(cid:30)*(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)(cid:16)(cid:6)(cid:11)(cid:15)(cid:13)(cid:15)(cid:4)(cid:15)(cid:31)(cid:1)(cid:3)((cid:1)(cid:29)(cid:5)(cid:7)(cid:6)(cid:11)(cid:8)(cid:7)(cid:15)(cid:13)(cid:3)(cid:6)(cid:7)(cid:8)(cid:1)
/(cid:31)(cid:4)(cid:5)(cid:3)(cid:11)(cid:12)(cid:13)(cid:31)(cid:6)(cid:12)(cid:31),(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)(cid:29)(cid:31)(cid:7)(cid:12)%w(cid:13)(cid:6)!(cid:1))(cid:3)(cid:11)(cid:14)(cid:13)(cid:15)(cid:7)(cid:8)(cid:11)(cid:1)/)(cid:20)(cid:1)(cid:29)(cid:5)(cid:4)(cid:11)(cid:15)*(cid:1)(cid:18)(cid:12)(cid:7)$(cid:31)#(cid:13)(cid:12)(cid:1)
$(cid:31)(cid:14)(cid:7)(cid:5)(cid:15)#(cid:31)(cid:6)(cid:15)(cid:1)(cid:3)((cid:1)(cid:12)(cid:8)(cid:13)(cid:6)(cid:13)(cid:12)(cid:7)(cid:8)(cid:1)(cid:6)(cid:31)(cid:4)(cid:5)(cid:3)(cid:8)(cid:3)!(cid:30)(cid:1)
(cid:10)(cid:12)$(cid:31)(cid:5)#(cid:3)(cid:15)(cid:15)*(cid:1)’%(cid:5)(cid:13)(cid:11),(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)-(cid:6)(cid:13).(cid:31)(cid:5)(cid:11)(cid:13)(cid:15)(cid:30)*(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)(cid:16)(cid:6)(cid:11)(cid:15)(cid:13)(cid:15)(cid:4)(cid:15)(cid:31)(cid:1)(cid:3)((cid:1)(cid:29)(cid:5)(cid:7)(cid:6)(cid:11)(cid:8)(cid:7)(cid:15)(cid:13)(cid:3)(cid:6)(cid:7)(cid:8)(cid:1)
/(cid:31)(cid:4)(cid:5)(cid:3)(cid:11)(cid:12)(cid:13)(cid:31)(cid:6)(cid:12)(cid:31),(cid:1)(cid:20)%(cid:31)(((cid:13)(cid:31)(cid:8)$(cid:1)(cid:29)(cid:31)(cid:7)(cid:12)%(cid:13)(cid:6)!(cid:1))(cid:3)(cid:11)(cid:14)(cid:13)(cid:15)(cid:7)(cid:8)(cid:11)(cid:1)/)(cid:20)(cid:1)(cid:29)(cid:5)(cid:4)(cid:11)(cid:15)*(cid:1)(cid:18)(cid:12)(cid:7)$(cid:31)#(cid:13)(cid:12)(cid:1)
O
$(cid:31)(cid:14)(cid:7)(cid:5)(cid:15)#(cid:31)(cid:6)(cid:15)(cid:1)(cid:3)((cid:1)(cid:12)(cid:8)(cid:13)(cid:6)(cid:13)(cid:12)(cid:7)(cid:8)(cid:1)(cid:6)(cid:31)(cid:4)(cid:5)(cid:3)(cid:8)(cid:3)!(cid:30)(cid:1)
4(cid:31)(cid:30)2(cid:3)(cid:5)$(cid:11)(cid:9)(cid:1) (cid:29)%(cid:31)(cid:5)(cid:7)(cid:14)(cid:30)*(cid:1)(cid:11)(cid:31)(cid:8)((cid:21)%(cid:31)(cid:8)(cid:14)(cid:1)$(cid:31).(cid:13)(cid:12)(cid:31)(cid:11)*(cid:1)(cid:16)(cid:6)((cid:3)(cid:5)#(cid:7)(cid:15)(cid:13)(cid:3)(cid:6)(cid:1)(cid:11)(cid:12)(cid:13)n(cid:31)(cid:6)(cid:12)(cid:31)*(cid:1)(cid:15)(cid:31)(cid:8)(cid:31)#(cid:31)$(cid:13)(cid:12)(cid:13)(cid:6)(cid:31)(cid:1)
l
(cid:1)(cid:1)
y
(cid:1)
(cid:1)
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Page 1 of 61 Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
28/11/1615/1/17
1
2
3 “Anything that makes life’s journey better.” Exploring the use of digital
4 technology by people living with motor neurone disease
5

6
*Dr Esther V Hobson1,2 Saima Fazal 1, Professor Pamela J Shaw1, Dr Christopher J
7
McDermott1
8

9
10 1 Sheffield Institute for Translational Neurosciences, University of Sheffield, UK
11 2 School of Health and Related Research, University of Sheffield, UK
12
13 Keywords
14
Self-Help Devices
F
15
Information science
16
Telemedoicine
17
18 Amoytrophicr lateral sclerosis
19
20 Word count 3619595
21 P
22
Acknowledgements and declarations
23 e
This project was conceived by EH and CJM. SF conducted the interviews. Both EH
24
and SF conducted the anealysis. All authors reviewed and interpreted the findings.
25
26 All authors were involved inr the preparation of the manuscript. SF was
27 undertaking this project as par t of a Master’s degree in Clinical Neurology and had
28 not met the participants prior to the day of the interview but attended their clinic
29 appointment conducted by EH uRnder the supervision of PJS.
30
31 e
EH is a National Institute for Health Research (NIHR) Doctoral Research Fellow
32
working in an MND specialist clinic withv experience conducting qualitative
33
interviews within a mixed methods technoliogy trial in MND. SF is an MSc Clinical
34
Neurology student. PJS and CJM are consultant neurologists caring for patients
35
e
36 with MND with experience of conducting clinical trials and qualitative studies.
37
38 The views and opinions expressed are those of thwe authors, and not necessarily

39
those of the NHS, the NIHR or the Department of Health. EH, PJS and CJM are
40
conducting trials of telehealth in MND. The Motor Neurone Disease Association
41 O
helped publicised the online questionnaire but had no other involvement in this
42
project.
43 n
44 l
45 Acknowledgements
46 The authors are grateful to Professor Wendy Baird and Dr Theochyaris
47 Stavroulakis for their input into the qualitative analysis.
48

49

50
*Corresponding author
51
Dr Esther Hobson
52
53 Sheffield Institute for Translational Neurosciences
54 385a Glossop Road,
55 Sheffield
56
S10 2HQ
57
[email protected]
58
59
60
1
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Page 2 of 61
28/11/1615/1/17
1
2
3
4
5
“Anything that makes life’s journey better.” Exploring the use of digital
6
technology by people living with motor neurone disease using mixed
7
methods
8

9
10
11 Abstract
12
13 Our aim was to explore the attitudes of those living with motor neurone disease
14
towards digital technology.
F
15

16
Postal anod online questionnaires surveyed 83 people with MND (pwMND) and 54
17
18 friends and framily members (fMND). Five pwMND and five fMND underwent
19 semi-structure d interviews.
20
21 82% of pwMND aPnd 87% of fMND use technology every day with iPads and
22
laptops being the devices most commonly used. pwMND used technology to help
23 e
them continue to participate in everyday activities such as socialising,
24
entertainment and accesesing the internet. The internet provided peer support
25
26 and information about MNDr but information could be distressing or unreliable.
27 Participants preferred informa tion from professionals and official organisations.
28 Participants were generally supportive of using of technology to access medical
29 care. R
30
31 e
Barriers to technology, such as lack of digital literacy skills and upper limb
32
dysfunction, and potential solutions werve identified. More challenging barriers
33
included language and cognitive difficultiesi, and the fear of becoming dependent
34
on technology. Addressing the barriers identified in this research could help
35
e
36 pwMND access technology. However, as healthcare delivery becomes more
37 reliant on digital technology, care should be taken to ensure those who are unable
38 or unwilling to use technology continue to have twheir needs met in alternative

39
ways.
40

41 O

42

43 n
44 l
45
46 y
47
48
49
50
51
52
53
54
55
56
57
58
59
60
2
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Page 3 of 61 Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
28/11/1615/1/17
1
2
3 Introduction
4
5
Digital technology devices such as smart phones and tablet computers are now a
6
prominent part of life. These everyday technologies, along with more specialist
7
assistive equipment, offer ways to enhance the lives of people with disabilities,
8
particularly those with motor neurone disease (MND). People with MND
9
10 (pwMND) already use the internet to seek a diagnosis and to learn about the
11 condition (1-3). Everyday devices can be adapted for disabilities, for example by
12 using text-to-speech communication software or voice recognition. Specialist
13 assistive technologies range from simple solutions such as adapted keyboards and
14
switches to complex devices such environmental controls and brain-computer
F
15
interfaces (4,5).
16
o
17
18 Digitarlisation within healthcare is increasing, allowing patients to access
19 medical record s on-line, order medication or make appointments. Educational
20 websites such as MyMND allow patients easy access to bespoke information (6).
21 Technology can fPacilitate access to medical care; email, telephone and video calls
22
(telemedicine) can be used for consultations and telehealth can be used to
23 e
monitor the signs and symptoms of the disease (7). Given the growing evidence
24
that specialist multidiscieplinary care is associated with improved outcomes in
25
26 MND (8-11) , technology thart overcomes the barriers posed by the disease could
27 be valuable in improving acces s to these services (7).
28
29 Technologies must be accReptable and accessible to pwMND and this study
30 aimed to explore the use of, and attitudes towards digital technology in pwMND,
31 e
their family members and friends.
32
v
33
Methods i
34

35
e
36 We examined attitudes towards digital technology, focussing on everyday digital
37 technologies (such as the internet, laptops and tablet computers) and everyday
38 technologies that had been adapted for disabilitiwes (such as communication

39
software applications on tablet computers). We also explored attitudes towards
40
digital “assistive technologies”, i.e. those designed specifically for people with
41 O
disabilities (such as environmental controls and switches).
42

43 n
44 We used a postal and an online questionnaire and, to expllore the subject in
45 more depth, we conducted semi-structured qualitative interviews. The research
46 questions, questionnaires and interview topic guide were developyed following a
47 literature review. We also consulted with clinicians and the Sheffield Motor
48
Neurone Disorders Research Advisory Group, a group of lay advisors including
49
patients, carers and MND Association volunteers.
50

51
Questionnaire
52
53 We identified patients with all types of motor neurone disease (amyotrophic
54 lateral sclerosis, primary lateral sclerosis and progressive muscular atrophy) who
55 were cared for by the Sheffield Motor Neurone Disorders Care and Research
56
Centre in June 2015 using a database search. We invited them to complete postal
57
questionnaires which included information about their diagnosis, including
58
59
60
3
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Page 4 of 61
28/11/1615/1/17
1
2
3 disease duration and disability (i.e. whether the disease affects their limbs, bulbar
4 function or breathing) (Appendix A). We asked patients to identify an unpaid
5
carer (a family member or friend) who could also complete a questionnaire
6
(Appendix B). We invited other pwMND in the UK, their friends and family
7
members to participate. We used an online GoogleDocs questionnaire advertised
8
using social media and the Motor Neurone Disease Association UK research
9
10 newsletter (Appendix C).
11
12 Interviews
13 We invited by letter, patients with any type of motor neurone disease who were
14
attending their routine MND clinic appointment to participate in semi-structured
F
15
interviews. We also invited an accompanying friend or family member who cared
16
for themo to participate. We used convenience sampling to conduct one interview
17
18 per clinic. Partients were excluded if they could not give consent, were too unwell
19 to spend extra time in clinic, or who had already participated in qualitative
20 research in the care centre. We collected basic demographic data and recorded
21 their functional aPbility using the ALSFRS-R score (collected as part of usual care)
22
(12). Disabilities in bulbar, upper and lower limbs were described as mild,
23 e
(ALSFRS-R sub-score 9-11), moderate (6-8) or severe (<6).
24
e
25
26 SF conducted the interrviews using a topic guide (Appendix D). SF was
27 trained in qualitative interview technique by EH and attended interviews and
28 read transcripts and qualitative literature. Interviews and reflexive notes were
29 reviewed together by EH and SFR, allowing further development of the interview
30 schedule. Interviews were recorded and transcribed verbatim and data was
31 e
organised using NVivo (13). Thematic analysis was used to interpret the data
32
(14). Transcripts were read independenvtly by SF and EH to familiarise
33
themselves with the data and generate initiial codes. Codes and themes were
34
reviewed and refined together. The interviews were completed before the results
35
e
36 of the questionnaire were available. However, following initial analysis , a process
37 of methods triangulation compared the data sets to determine whether the
38 findings from each data set were consistent (13)w. Where important themes,

39
similarities and differences were identified, the datasets was reviewed looking for
40
explanation for these findings. Results were then discussed with the wider
41 O
research team and the qualitative data was reviewed, codes were further refined
42
and EH recoded each interview and prepared the final manuscript.
43 n
44 l
45 Ethical approval was gained from the NRES Committee North West-
46 Preston for the postal questionnaire and interviews. Written or wyitnessed
47 consent was obtained. Ethical approval was not required for the anonymous
48
online questionnaire but participants were directed to a website containing a
49
participant information sheet and were required to confirm their understanding
50
and willingness to participate.
51

52
53
54
55
56

57
58
59
60
4
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Page 5 of 61 Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
28/11/1615/1/17
1
2
3 Results
4
5
Questionnaire participants
6
126 patients were invited. 49 patients (39% response rate) completed the
7
patient postal questionnaire (Table 1) and 37 completed the friend/family postal
8
questionnaire (Table 2). One patient questionnaire was excluded because no
9
10 written consent was returned. 36 pwMND completed the online questionnaire.
11 One online response was excluded because it was impossible to determine
12 whether the patient had also completed a postal questionnaire. 19 family
13 member/friends completed the online questionnaire. All friend and family
14
members responses were combined and are referred to as “fMND”. It was not
F
15
possible to calculate a response rate for the online questionnaire.
16
o
17
18 Interview parrticipants
19 Eight patients w ere approached for interviews. Two patients rescheduled their
20 appointments and could not be interviewed. Five patients, all female, and five
21 carers (all familyP members) were interviewed in six interviews, ranging from 16
22
to 37 minutes (Appendix E). One patient declined but his son was interviewed.
23 e
Two patients had dysarthria and their carer helped them to communicate. One
24
patient used communicaetion aids but chose not to use them during the interview.
25
26 The main themes identified rwere: the choice and value of technology to enable
27 patients to continue with norm al life; the role of the internet in providing
28 information, the barriers to using technology and the role of technology in MND
29 care. Further quotes supportingR the findings are available in Appendix F.
30
31 e
Technology enabling a normal life
32
Most pwMND (82%) and fMND (87%) svurveyed used at least one digital device
33
every day. Participants used a range of techinologies and adaptations (listed in
34
Appendix FG). iPads and laptops were the most frequently used everyday devices
35
e
36 (Figure 1). Use of the internet, particularly for leisure was also common (Figure
37 2). Those interviewed were very positive about using everyday technology
38 because they found technology enabled them to cwontinue to lead as normal a life

39
as possible.
40

41 O
“Anything that makes life’s journey, when necessary, better: she will
42
accept it.” Husband 6
43 n
44 l
45 Participants interviewed also valued technologies with which they were already
46 familiar, could be used for multiple purposes (including leisure anyd assistance),
47 and were easy to use. Internet services were described as particularly useful
48
when MND made daily activities difficult. For example, for a patient with poor
49
mobility, the ability to shop online independently was a “life saver”, (Son 3).
50
Another found that email had helped avoid the social isolation associated with
51
speech and language problems (Patient 6).
52
53
54
55
56

57

58
59
60
5
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Page 6 of 61
28/11/1615/1/17
1
2
3 Using the internet to access information and support
4 All those completing the online questionnaire and 60% of fMND in the postal
5
questionnaire used the internet to seek information about MND. Fewer pwMND
6
in the postal questionnaire sought information this way (40%). The most
7
commonly visited website was the Motor Neurone Disease Association (UK)
8
website and many revisited the site (Figure 3). Even in the postal questionnaire,
9
10 78% of pwMND had visited the site. Participants wanted to know more about all
11 aspects of the disease (Figure 4) preferring information to be available on
12 websites with written information, videos or emails (Figure 5). However, books
13 and written leaflets remain popular, particularly amongst fMND and low users of
14
technology. Of the pwMND who could remember, 79% thought that at diagnosis
F
15
their MND care team had recommended looking on the internet although of these,
16
only 30%o were recommended a specific site. 21% recalled being advised not to
17
18 look on the irnternet. The internet also provided a way of receiving support from
19 other people liv ing with MND: 77% of pwMND in the online questionnaire used
20 the internet to talk to others with the condition although only 14% of those in the
21 postal questionnPaire did. fMND used this less commonly (online 42% and postal
22
11%).
23 e

24
Interview participaents described turning to internet to learn how to cope
25
26 with their condition, and to rbe prepared for the future. Researching alternative
27 treatments offered hope and th e feeling that they were doing something
28 themselves to fight the disease.
29 R
30 “I would suggest that the family go on the internet and study the illness
31 e
themselves. So that they can learn of how this disease works, how it
32
affects: because they need to be prevpared. The family needs to prepare
33
themselves so that they can be strong foir the MND sufferer.” Patient 1
34

35
e
36 Interview participants found the practical and emotional support available on the
37 forums even more valuable because of the experiences they shared with fellow
38 “comrades” living with the disease. w

39

40
“The internet is a wonderful thing. I use it stay in touch with my fellow
41 O
MND sufferers as we do support each other when one of us is feeling very
42
scared. We’ll all gather on the internet and just try and be a support,
43 n
44 reassure them they’ll get through this; we’re all here for theml. I’m
45 learning so much more about the illness through other sufferers.”
46 Patient 1 y
47
48
Not all the experiences of the internet were positive, particularly around the
49
time of diagnosis when many participants who were interviewed naturally turned
50
to the internet to seek information about the disease.
51

52
53 “It’s natural, isn’t it? There’s something you don’t know, you go online
54 now don’t you?” Husband 2
55
56
Most had little knowledge of MND and, following the shock of the diagnosis,
57
most of what participants could recall was negative: for example, the terminal
58
59
60
6
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Page 7 of 61 Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
28/11/1615/1/17
1
2
3 nature of the disease, the lack of treatment and poor prognosis. Information on
4 the internet reinforced these ideas.
5

6
“It was a shock, to be told you was going to die and especially, not having
7
any awareness of the disease. … I was just told to go home, get my affairs
8
in order, tell the family. That was it really.” Patient 2
9
10
11 “If you just Google ‘MND’… you get all the gory bits first” Husband 2
12
13 Many felt the information on the internet was unreliable or confusing and some
14
stopped looking. Like those surveyed, most preferred to use official sites such as
F
15
the Motor Neurone Disease Association explaining that they thought these sites
16
were moore reliable.
17
18 r
19 “There’s a s much misinformation as good information but you don’t
20 know which” Husband 4
21 P
22
Two pwMND did not go online at all, explaining that they were fearful of facing
23 e
the future and preferred instead to approach problems as they encountered them.
24
e
25
26 “I will never go online brecause I’m the kind of person that deals better
27 with what I don’t know-I can’t worry about. I’m not going to change
28 anything by reading all the bad things about it. I know what’s going to
29 happen. I’ll deal with it wheRn it comes.” Patient 2
30
31 e
Participants preferred to receive information from a professional because
32
the information was felt to be more reliavble, specific to their circumstances and
33
was delivered with the correct detail and paice.
34

35
e
36 “Online has its place, but it all needs to be talked about.” Husband 2
37
38 Whilst pwMND could access reliable inforwmation from their health

39
professionals, wider family members relied on the internet for information. This
40
could be helpful when they wished to learn more about the disease than the
41 O
pwMND. However, this could also cause tension, with three participants
42
describing difficulties when their extended families had developed overly
43 n
44 negative impressions of MND following research on the internetl.
45
46 “My son went on the internet and frightened himself with the y
47 information that was on there. He thought I was immediately going to
48
die” Patient 4
49

50

51

52
53
54
55
56

57

58
59
60
7
URL: http://mc.manuscriptcentral.com/als Email: [email protected]
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Page 8 of 61
28/11/1615/1/17
1
2
3 Barriers to using technology
4 Lack of experience or confidence using devices was a common barrier to using
5
technology. Figure 6 describes the barriers identified in this study. The postal
6
questionnaire identified 12 low users of technology: nine (19%) pwMND and
7
three (9%) fMND used it less than once a month. They were older than the other
8
participants (median 74.5 years, p<0.0001). Reasons given for not using
9
10 technology were: having no need (four), not knowing how to use it (four), poor
11 hand function (three), fear of breaking it (one), and having a bad experience of
12 computers (one). However, nine of the twelve thought that they could use
13 technology if they had the appropriate equipment and training. They all preferred
14
written information, although some thought email (four) and books (three) would
F
15
be helpful with none wishing to access information using the internet.
16
o
17
18 Threer carers interviewed described their loved ones as not being
19 “technology peo ple” thinking that they lacked an innate ability to use devices.
20 They thought they lacked confidence in problem solving and would rely on family
21 members for helPp. One son thought his father was not interested in using
22
technology because he had always been too busy to use it. Difficulties with
23 e
cognition and language caused further problems that severely restricted one
24
pwMND’s use of technoleogy (Patient 6): reading and concentration were difficult
25
26 and she was unable to learnr to use new devices such as a new mobile phone.
27 Patient 6 found text-to-speech software too slow, instead relying on basic drawing
28 software.
29 R
30 “When [she] writes, even in there [note pad], it missed words out. The
31 e
brain is working but the brain isn’t actually interpreting it to say ‘speak it
32
properly’ or even ‘write it properly’.v She knows what she wants to say and
33
she knows what she wants to do, it doesin’t always come in the right
34
order.” Husband 6
35
e
36
37 Husband 6 was concerned what would happen if his wife could not use
38 technology. She relied on it to avoid the social isowlation associated with speech

39
and language difficulties and they were unaware of any suitable alternatives.
40

41 O
Arm weakness was a common problem, but many pwMND adapted
42
everyday technologies to overcome this with a preference expressed for devices
43 n
44 that were light and not bulky. 33 (40%) of pwMND surveyed pulrchased
45 additional equipment, mostly everyday technologies such as tablets and
46 computers, but six pwMND had purchased specialist voice recognyition or eye gaze
47 software. (Appendix FG) Cost and lack of awareness was particularly a barrier
48
for unfamiliar and specialist technology. Four couples felt they didn’t know
49
enough about available specialist assistive technology and wanted more guidance
50
from experts. Two pwMND wished that they had accessed specialist technology
51
earlier in the disease in order to make the most of its benefits. Some experienced
52
53 delays in receiving equipment or training and in one case, by the time equipment
54 was available, the disease had progressed making the technology unusable.
55
56
“We should have known six months ago” Husband 2
57
“…when I could still talk properly” Patient 2 [referring to voice banking]
58
59
60
8
URL: http://mc.manuscriptcentral.com/als Email: [email protected]