“Things that help us with our life, to manage our condition”: Assistive Technologies in Multiple Sclerosis L 1School
1 Squires ,
N
2 Williams &
of Psychology, Bangor University, UK
V
1 Morrison
2NWORTH,
Bangor University, UK
Methods
Background
Multiple Sclerosis (MS) is an incurable condition of the central nervous system Sample and Procedure Two PwMS, one carer and one OT focus groups (n=14, affecting approx. 100,000 people in the UK. Common symptoms include 5, 4 respectively) were conducted using a semi-structured framework. fatigue and difficulties with walking, vision, continence, memory, speech etc [1]. Discussion topics included personal experiences and perceptions of AT, and Assistive technologies (AT) are provided by HCPs to people with MS (PwMS) the impact of using AT on MS. with the intention of improving independence and quality of life [2] and range from basic devices (i.e. canes, specialised cutlery) to complex devices (i.e. All participants reported experience of mobility, environmental and bathroom motorised wheelchairs, environmental control systems). AT. Other AT experience included kitchen, medical, memory aids and vehicle adaptations. How is AT use involved in the self-regulation process (i.e. is AT use a form of coping with disability? [3]) What role do biopsychosocial factors play in the Data Analysis Focus groups were audio-recorded, transcribed verbatim, uptake and use of AT and the health or psychological outcomes of using AT? managed manually and analysed thematically in this exploratory study [4]. DISABILITY + SYMPTOMS
IMPACT + COPING
Findings
DEVELOPING AN UNDERSTANDING OF AT
FOR THE BETTER?
PROGRESSING WITH AT
PATIENT FACTORS
NEGATIVE IMPACT
POSITIVE IMPACT
SERVICE FACTORS
DEVICE FACTORS
SERVICE BARRIERS
THE ENVIRONMENT
Participants described the struggle of living with MS – starting from symptom onset through to the impact their condition has on their daily lives and how lay perceptions played a role.
“One day I was running, jogging like a normal guy would be and the next day I couldn’t even get out of my bed … I get spasms in my legs and my back plays up … and that’s more embarrassing to me”
“By the time you’re given the diagnosis you’ve probably been struggling for two or three years and that’s when you need help…No-one offers you a wheelchair or anything … You’re just left in limbo”
“The worst thing you find is when you’re going round the town. There’s a lot of people, you’re a myth to them. They don’t see you. They look over you. Don’t see you at all and you’re the one who has to divert round them”
THE FUTURE…
AT has developed overtime and continues to do so, in terms of function and availability. PaMS explained how AT progresses alongside their condition.
“Assistive technology now is absolutely anything that helps. It’s not just equipment. It’s not just an artificial limb or a wheelchair. It’s anything that assists you to be as independent as you can be”
“We’re starting to use iPads right now. We’re still working on the protocol so we haven’t actually issued any yet but we’ve got seven waiting to go out and we’ve got twenty-one waiting for assessment”
“I started off one of my feet used to drag and then the other one but I ended up having a stick, then two sticks, and I have had crutches. I have got a wheelchair if I need to get any distance”
ENVIRONMENTAL FACTORS DEVICE BARRIERS
PATIENT BARRIERS
ENVIRONMENTAL BARRIERS
A key barrier to acquiring AT was the OT service (e.g. OT relationship, economy). Followed by personal (e.g. acceptance, optimism), device (e.g. matched needs) and environmental (e.g. carer, perceived stigma) barriers.
“I’ve had very different experiences with occupational therapists ((laughs)) I’ve had disastrous experiences. Totally unhelpful. Totally trying to force you to do something a certain way. Give up pieces of equipment you’ve got. Insisting that they use the toilet and not the commode. Things like that totally non-independent”
They’re not encouraging the person to become more independent … it’s about their role – the carer’s role that’s been possibly jeopardised ”
Similar factors influenced whether PwMS would abandon their AT for example, acceptance of AT and MS, difficult device controls, social support etc.
“By the time it’s assessed, the condition might have changed quite significant and actually the powered wheelchair may not be appropriate anymore”
“If somebody is not ready to use the equipment … they don't want to know and it's a waste of time putting it in. It’s sitting there gathering dust or stuffed in a cupboard. If they can still use the remotes even if it’s a struggle, they would rather do that than use a piece of equipment”
“I have two boys … the mobility scooter - they thought it was wonderful. I have to say I got a lot of strength from the fact that they were happy, they were accepting of the fact that I would have to use it and you know what, it gave me a lot of courage”
IT AFFECTS THE CARER TOO
Many physical and psychological benefits were reported for PwMS and carers (e.g. independence, mobility). However there were also limitations (i.e. frustration, cost).
“The ceiling track hoist means I can get to toilet - all things like that. Well I’d be lost without it”
“In a scooter I can say, “well you sod off that way and I’m gonna go this way and I’ll meet you down the road.””
“I feel more me ‘cause I’m walking me you know. Just being able to walk straight when you've been pushing a manual wheelchair for five years - it makes you feel so much better”
“It’s totally wrecked my kitchen!” “You should see our house!” “But you have to put up with that don’t you!”
Discussion Acceptance emerged as a consistent subtheme in explaining PwMS AT use (i.e. of illness and AT). Good healthcare professional to PwMS communication is required to ensure AT matches user needs, and maximise health gains for PwMS. Carers appeared to have an influence on the use of AT (e.g. support vs. disapproval) so their involvement should also be considered when matching AT to PwMS. AT may have both positive and negative effects on those affected by MS, including carers and PwMS. These findings inform an ongoing longitudinal questionnaire study. References [1] Robinson I. Multiple Sclerosis 1988. [2] Department of Health; DoH, 2005. [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), 434-44. [4] Braun V, & Clarke V. Successful Qualititative Research: A Practical Guide for Beginners 2013. Contact Details Luke Squires
[email protected]
