Presentation
PS15 - Understanding the Needs of Individuals Aging With Multiple Sclerosis to Guide the Design of Assistive Technologies
SessionPoster Session 2
DescriptionIntroduction
Bathing and self-care tasks are one of the most challenging tasks for adults aging with chronic conditions like Multiple Sclerosis (MS). About 10% of individuals with MS are aged 65 or older, and 90% of them may live to be 70 or beyond. The progressive and often unpredictable nature of MS exacerbates these challenges, creating uncertainty around the adoption of assistive technologies or home modifications. Tailored interventions for bathing and self-care are needed but remain underexplored.
The “Aging Concerns, Challenges, and Everyday Solutions Strategies” study assessed challenges of individuals aging with long-term disabilities (at least 10 years) with a range of daily activities and strategies for overcoming them. One of the target populations was individuals aging with MS. This analysis aimed to assess the bathing challenges, needs, and preferences of older adults with MS to inform technological and design solutions that reflect the condition's variability.
Method
We used a multi-method approach involving questionnaires and interviews with 19 participants aged 60-80 (mean=69.6 years, SD=5.15) who had been diagnosed with MS for at least 10 years and identified bathing as their most challenging daily activity. All participants were wheelchair users but occasionally relied on canes, walkers, or crutches, depending on the day. The 112-item TechSAge Minimum Battery questionnaire addressed socio-demographics, technology use, health status, ADLs/IADLs, mobility, and supportive aid usage, while the MS Group questionnaire evaluated MS-related factors such as type, severity, and symptoms. The subsequent interview explored participants’ challenges with various daily activities and the strategies they employed to overcome them.
Results
Bathing/showering challenges:
All 19 participants identified bathing or showering as the most challenging daily activity due to the logistics and time involved and 17 of them switched to showering as a less demanding option. 1 participant stopped bathing/showering altogether, while others reduced frequency and often required assistance. Participants relied on accessible features such as no-door, roll-in showers, grab bars, reacher sticks, benches or stools, handheld shower fixtures, and sliding boards for transfers. Despite this, all participants noted the need for significant planning around bathing/showering, with logistical challenges persisting despite their current strategies, as highlighted in their feedback:
R1-MS-39-JS:
“Husband helps with reaching the shower, the one that comes off the wall.”
R1-MS-53-SS:
“It's hard to hold onto the guardrails and simultaneously try to use the soap and washcloth as you're holding on. Now that the washcloth and the soap are in this hand, I can't put the soap on the washcloth with the soap in my hand. So now I have to put the soap back in the little bin that I'm holding in one hand, I take the washcloth, I put that on the rail, I take the soap and now I've got the soap on there. So, it's got to be a whole process to get the soap on the washcloth. So, I'd say that's a big deal.”
R1-MS-12-PG:
“I generally have two points touching the ground, one for each foot. Okay, but if I am doing something that is a challenge to me, like shampooing or shaving or who knows what, I need a third point to help maintain my balance. So I have two feet and then maybe an elbow or an arm or something like that.”
Unpredictability around MS:
Most participants talked about the unpredictability of their condition and that not all days are the same.
R1-MS-53-SS:
“When you have MS, every day is different. When I'm feeling like my balance is weird, I don't take a shower. I just wash up in the face bowl. It's so intermittent, you know, I never know what it's going to be until it happens.”
R1-MS-22-GB:
“It's not every day getting worse and worse and worse. But I have spells where it can ramp up and down. [...] When I suffer from a lot of tight muscles, sometimes the hot water in the shower feels really good. But if I'm overheated, a cool shower feels good.”
Sometimes MS is also not detected right away, causing additional unpreparedness.
R1-MS-07-CE:
“The reason I think I had MS before I was diagnosed is I saw double for a year and visual things are very often the first symptom.”
Intermittent and varying nature of challenges:
There are situations when certain aspects of their health may unexpectedly (often temporarily) improve and begin functioning again after years.
R1-MS-05-JB:
“Some of the tears in the wire seem to have been closed up again. [...] The right side is quite a lot better than it used to be.”
R1-MS-39-JS:
“I'm able to do a lot more than I did, say, eight years ago, I guess just by not really thinking about it all the time.”
There are also uncertainties around what might happen next:
R1-MS-12-PG:
“My vision is still pretty good. But I am concerned because I do know that MS can unpredictably affect vision.”
R1-MS-47-DH:
“What is the next stage going to be? At some point, I'm going to lose my ability to stand and step into the shower. When I won't be able to get into the shower, I will need another assistive device.”
Discussion
The unpredictable nature of MS symptoms often prevented individuals with MS from fully adopting technologies or strategies to enhance safety and independence, diminished the urgency to plan for future needs, including hesitation to invest in costly home modifications or personal care services. For instance, R1-MS-63-AZ re-did his house but did not accommodate for future needs.
R1-MS-63-AZ:
“When I re-did my house, I was still able to walk unassisted a few feet. So it was enough to leave my wheelchair at the door and walk into the bathroom. But I've declined now.”
This fluctuation complicates the creation of “one-size-fits-all” solutions. Technologies must be adaptable to assist individuals on both their “good days” and “bad days”, allowing easy adjustments based on their current mobility level. Rigid designs that assume a constant level of disability may not meet the needs of individuals with MS and could discourage technology adoption.
Flexible and Inclusive Design Recommendations:
To address these complexities, assistive technologies for people with MS should prioritize flexibility, personalization, and ease of use. Key design principles include:
Adjustable controls and multi-modal design: Devices should allow users to adjust settings based on their varying levels of physical ability. Technologies that are easily modified or upgraded offer significant benefits for MS users. For instance, a robotic showerhead could feature both manual (user-controlled) and automatic (such as, voice/gesture controlled) modes, to accommodate varying physical loads. If designed to adapt based on real-time feedback, these systems can effectively meet the fluctuating needs of individuals with MS.
Usability: Considering the emotional toll of MS, assistive technologies should be designed with empathy and sensitivity. This includes user-friendly features that alleviate anxiety, such as clear instructions, accessible support, lightweight designs, and a focus on comfort. Ensuring devices are not physically burdensome allows users to interact effortlessly, promoting reassurance and independence.
Low-investment, high-impact solutions: To address hesitancy around permanent modifications, designers should consider affordable, portable, and modular assistive devices that provide support without requiring extensive home alterations.
Conclusion
The fluctuating nature of multiple sclerosis necessitates a new approach to designing assistive technologies, one that prioritizes adaptability, personalization, and flexibility. Technologies must meet users where they are - whether on a “good day” or a “bad day” - and provide meaningful support without assuming a static level of impairment. Designers should create more inclusive, user-centered solutions that not only assist with daily tasks but also enhance the overall quality of life for individuals aging with MS.
Bathing and self-care tasks are one of the most challenging tasks for adults aging with chronic conditions like Multiple Sclerosis (MS). About 10% of individuals with MS are aged 65 or older, and 90% of them may live to be 70 or beyond. The progressive and often unpredictable nature of MS exacerbates these challenges, creating uncertainty around the adoption of assistive technologies or home modifications. Tailored interventions for bathing and self-care are needed but remain underexplored.
The “Aging Concerns, Challenges, and Everyday Solutions Strategies” study assessed challenges of individuals aging with long-term disabilities (at least 10 years) with a range of daily activities and strategies for overcoming them. One of the target populations was individuals aging with MS. This analysis aimed to assess the bathing challenges, needs, and preferences of older adults with MS to inform technological and design solutions that reflect the condition's variability.
Method
We used a multi-method approach involving questionnaires and interviews with 19 participants aged 60-80 (mean=69.6 years, SD=5.15) who had been diagnosed with MS for at least 10 years and identified bathing as their most challenging daily activity. All participants were wheelchair users but occasionally relied on canes, walkers, or crutches, depending on the day. The 112-item TechSAge Minimum Battery questionnaire addressed socio-demographics, technology use, health status, ADLs/IADLs, mobility, and supportive aid usage, while the MS Group questionnaire evaluated MS-related factors such as type, severity, and symptoms. The subsequent interview explored participants’ challenges with various daily activities and the strategies they employed to overcome them.
Results
Bathing/showering challenges:
All 19 participants identified bathing or showering as the most challenging daily activity due to the logistics and time involved and 17 of them switched to showering as a less demanding option. 1 participant stopped bathing/showering altogether, while others reduced frequency and often required assistance. Participants relied on accessible features such as no-door, roll-in showers, grab bars, reacher sticks, benches or stools, handheld shower fixtures, and sliding boards for transfers. Despite this, all participants noted the need for significant planning around bathing/showering, with logistical challenges persisting despite their current strategies, as highlighted in their feedback:
R1-MS-39-JS:
“Husband helps with reaching the shower, the one that comes off the wall.”
R1-MS-53-SS:
“It's hard to hold onto the guardrails and simultaneously try to use the soap and washcloth as you're holding on. Now that the washcloth and the soap are in this hand, I can't put the soap on the washcloth with the soap in my hand. So now I have to put the soap back in the little bin that I'm holding in one hand, I take the washcloth, I put that on the rail, I take the soap and now I've got the soap on there. So, it's got to be a whole process to get the soap on the washcloth. So, I'd say that's a big deal.”
R1-MS-12-PG:
“I generally have two points touching the ground, one for each foot. Okay, but if I am doing something that is a challenge to me, like shampooing or shaving or who knows what, I need a third point to help maintain my balance. So I have two feet and then maybe an elbow or an arm or something like that.”
Unpredictability around MS:
Most participants talked about the unpredictability of their condition and that not all days are the same.
R1-MS-53-SS:
“When you have MS, every day is different. When I'm feeling like my balance is weird, I don't take a shower. I just wash up in the face bowl. It's so intermittent, you know, I never know what it's going to be until it happens.”
R1-MS-22-GB:
“It's not every day getting worse and worse and worse. But I have spells where it can ramp up and down. [...] When I suffer from a lot of tight muscles, sometimes the hot water in the shower feels really good. But if I'm overheated, a cool shower feels good.”
Sometimes MS is also not detected right away, causing additional unpreparedness.
R1-MS-07-CE:
“The reason I think I had MS before I was diagnosed is I saw double for a year and visual things are very often the first symptom.”
Intermittent and varying nature of challenges:
There are situations when certain aspects of their health may unexpectedly (often temporarily) improve and begin functioning again after years.
R1-MS-05-JB:
“Some of the tears in the wire seem to have been closed up again. [...] The right side is quite a lot better than it used to be.”
R1-MS-39-JS:
“I'm able to do a lot more than I did, say, eight years ago, I guess just by not really thinking about it all the time.”
There are also uncertainties around what might happen next:
R1-MS-12-PG:
“My vision is still pretty good. But I am concerned because I do know that MS can unpredictably affect vision.”
R1-MS-47-DH:
“What is the next stage going to be? At some point, I'm going to lose my ability to stand and step into the shower. When I won't be able to get into the shower, I will need another assistive device.”
Discussion
The unpredictable nature of MS symptoms often prevented individuals with MS from fully adopting technologies or strategies to enhance safety and independence, diminished the urgency to plan for future needs, including hesitation to invest in costly home modifications or personal care services. For instance, R1-MS-63-AZ re-did his house but did not accommodate for future needs.
R1-MS-63-AZ:
“When I re-did my house, I was still able to walk unassisted a few feet. So it was enough to leave my wheelchair at the door and walk into the bathroom. But I've declined now.”
This fluctuation complicates the creation of “one-size-fits-all” solutions. Technologies must be adaptable to assist individuals on both their “good days” and “bad days”, allowing easy adjustments based on their current mobility level. Rigid designs that assume a constant level of disability may not meet the needs of individuals with MS and could discourage technology adoption.
Flexible and Inclusive Design Recommendations:
To address these complexities, assistive technologies for people with MS should prioritize flexibility, personalization, and ease of use. Key design principles include:
Adjustable controls and multi-modal design: Devices should allow users to adjust settings based on their varying levels of physical ability. Technologies that are easily modified or upgraded offer significant benefits for MS users. For instance, a robotic showerhead could feature both manual (user-controlled) and automatic (such as, voice/gesture controlled) modes, to accommodate varying physical loads. If designed to adapt based on real-time feedback, these systems can effectively meet the fluctuating needs of individuals with MS.
Usability: Considering the emotional toll of MS, assistive technologies should be designed with empathy and sensitivity. This includes user-friendly features that alleviate anxiety, such as clear instructions, accessible support, lightweight designs, and a focus on comfort. Ensuring devices are not physically burdensome allows users to interact effortlessly, promoting reassurance and independence.
Low-investment, high-impact solutions: To address hesitancy around permanent modifications, designers should consider affordable, portable, and modular assistive devices that provide support without requiring extensive home alterations.
Conclusion
The fluctuating nature of multiple sclerosis necessitates a new approach to designing assistive technologies, one that prioritizes adaptability, personalization, and flexibility. Technologies must meet users where they are - whether on a “good day” or a “bad day” - and provide meaningful support without assuming a static level of impairment. Designers should create more inclusive, user-centered solutions that not only assist with daily tasks but also enhance the overall quality of life for individuals aging with MS.
Event Type
Poster Presentation
TimeTuesday, April 14:45pm - 6:15pm EDT
LocationFrontenac Foyer