1. Alyssa, 48, Primary Progressive MS Anne, 58, Relapse-Remitting MS
Assistive Technology for Multiple Sclerosis: A Focus Group Study L Squires1, V Morrison1 & N Williams2 1School of Psychology, Bangor University, UK 2NWORTH, Bangor University, UK
Background: Assistive technologies (AT), such as mobility aids, are provided to individuals with disability needs with the intention of improving their independence and quality of life. However, little is known as to what is used appropriately, how it is perceived in terms of ease or difficulty of use, and whether it benefits health or psychosocial outcomes. This study therefore aims to explore AT perceptions and experiences of those affected by multiple sclerosis (MS), including those living with and caring for (personally or professionally) those with MS.
Methods: Two MS patient (n=14) and one health and social care professional (n=4) focus groups were conducted with one family carer focus group ongoing. A semi-structured framework was developed to guide the discussion topics: experiences and perceptions of AT, impact of using AT on MS, and barriers to AT use. As an exploratory study, thematic analysis will be used to identify emergent themes (Braun & Clarke, 2006) and inter-rater reliability will be carried out on the coding process.
Findings: Preliminary and ongoing analysis suggests that similar themes are identified across patients and HCPs relating to AT perceptions (access to devices, technological advancements), AT impact (independence, stigma) and predictors/influences of AT use (acceptance of MS, coping style, family carer influence).
Discussion: The qualitative findings will inform a prospective longitudinal questionnaire study with the merged findings being disseminated to professionals involved in AT delivery and support to potentially improve the wellbeing and quality of life of those affected.
Background
Multiple Sclerosis (MS) is an incurable condition of the central nervous system affecting approx. 100,000 people in the UK. Common symptoms include fatigue and difficulties with walking, vision, continence, memory, speech etc [1].
Assistive technologies (AT) are provided by HCPs to people with MS (PwMS) with the intention of improving their independence and quality of life [2] and can range from basic devices (i.e. cane, special cutlery) to complex electronic devices (i.e. motorised wheelchair, environmental control systems).
Despite the expected positive outcomes, there are reports that people do not use AT as intended [3] suggesting that they are not meeting the user’s expectations.
Research Questions
Little is known as to what AT is used among PwMS, how these devices are perceived, and whether they benefit health or psychosocial outcomes. This study therefore aims to explore AT perceptions and experiences of those affected by multiple sclerosis (MS), including those living with MS and those working for MS.
What is the level of AT use/non-use among PwMS?
What are the current perceptions of AT held among PwMS, carers of MS and those that work within MS?
What is the impact of AT on those living with, caring for and working with MS?
“No, I was just angry and I didn’t want to use them. I just thought that I can get by” Alyssa, 48, Primary Progressive MS
Methods
Design Data was gathered from focus groups with a semi-structured framework to guide the discussion topics: experiences and perceptions of AT, impact of using AT on MS, and factors relating to AT use/non-use.
Participants Two PwMS and one HCP focus groups were conducted (n=14, n=4 respectively) with one family carer focus group ongoing. All participants reported experience of mobility, environmental and bathroom AT. Other AT experience included kitchen, medical, memory aids and vehicle adaptations.
Data Analysis The focus groups were audio-recorded and transcribed verbatim. The transcripts were analysed using thematic analysis [4]. Preliminary and ongoing analysis suggests that similar themes are identified across patients and HCPs relating to AT perceptions (access to devices, technological advancements), AT impact (independence, stigma) and predictors of AT use (acceptance of MS, coping style, family carer influence).
Advances in AT
Participants noted how the available AT had changed overtime, however while HCPs drew focus on terminology and how the devices themselves had improved overtime drawing focus on function, PwMS reflected on how devices had changed along with their illness progression.
“I think AT now is absolutely anything that helps, it’s not just equipment…it’s anything that assists you to be as independent as you can be” Cora, Social Services OT
“Well I’ve progressed from a walking stick to a crutch and I’ve got a wheelchair I try not to use and I’m just hoping to keep on my feet long enough to use it” Bill, 65, Secondary Progressive MS
Getting AT
All groups noted the importance of acceptance before AT provision. HCPs also discussed the management of MS expectations, by having to balance patient ‘needs and wants’. Other barriers to access to AT included waiting lists, lack of knowledge, and desire to appear ‘normal’.
“They found it difficult then to accept what we could provide for their needs and it was often looking at what their needs were and not their wants. There’s a difference between needs and wants” Lucy, MS Specialist OT
“It depends on the character that you are that determines whether you will use this thing that has been suggested…sooner or later you will have to use something but it’s just getting it right in your mind” Anne, 58, Relapse-Remitting MS
Use it or lose?
All groups discussed factors that influenced the appropriate continued use of AT; patient factors (illness, optimism), device factors (aesthetics, fit for purpose), contextual factors (social support, home environment) and service factors (training, matching needs).
“If somebody is not ready to use the equipment…it’s a waste of time putting it in and it’s sitting there gathering dust or stuffed in a cupboard somewhere” Charlotte, NHS OT
“I don’t love it. The control drives me nuts!” Rose, 61, Primary Progressive MS
“When I started to use the mobility scooter the kids thought it was wonderful”
Alyssa, 48, Primary Progressive MS
The Pro’s and Con’s
The independence that AT brings to PwMS was throughout, however patients also pointed out the loss of independence through using AT. Other reported benefits included function, mobility and an “easier life”. In contrast, reinforced disability and frustration were key negative outcomes.
“Equipment in the house is just actually reinforcing the fact that person has got a disability…sometimes they say ‘I don’t want this place looking like a disability shop’”
Lucy, MS Specialist OT
“Speech recognition on my computer…I’ve had to curse a few times!” Andrew, 59, Primary Progressive MS
“I have had the car adapted so I can drive myself from A to B so yeah it gives you independence”
Anne, 58, Relapse-Remitting MS
Discussion
The qualitative findings have informed an upcoming longitudinal questionnaire study highlighting acceptance of MS and AT use, expectations of AT and the positive and negative outcomes of using AT. Good HCP-patient communication may encourage maximum gains from AT use i.e. matching to needs, managing expectations. Findings will be disseminated to professionals involved in AT delivery and support to potentially improve the wellbeing and quality of life of those affected.
References [1] Robinson I. Multiple Sclerosis [2] Department of Health; DoH, [3] Squires L, Rush F, Hopkinson A, & Morrison V. The physical and psychological impact of using a computer-based environmental control system: A case study. Disability and Rehabilitation: Assistive Technology 2013; 8(5), [4] Braun V, & Clarke V. Successful Qualititative Research: A Practical Guide for Beginners Contact Details Luke Squires