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A carer's perspective on technology in healthcare

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Courtney cares for both of her parents at home. She was 7 years old when her father was diagnosed with Parkinsonism. Now, at the age of 19, she has adopted more caring responsibilities and has also paid close attention to the evolution of technology over the years and how this has assisted with her father’s independence. Recently, her mother has also experienced mobility issues, so Courtney has experience in how technology has helped her mother stay independent as well. 


Below is a run-through of my conversation with her. 


What technology do you currently use?


"Zoom (support group with fellow Parkinson patients), the internet, a wearable smart watch door bell with camera and microphone"


What is particularly helpful or unhelpful about the use of each of these technologies?


"[Zoom] Produced a community for my father, especially with fellow early onset patients. Our closest support group is over an hour drive so the option to join in online but still be part of a strong community has definitely helped my father feel less alone with his diagnosis. It has been a useful resource for him to discuss it with someone who has first hand experience and can share advice. [the internet] Helped me research further into Parkinson’s Disease and understand the physical and psychological aspects of PD to better support my father. Also resources on how to deal with it myself being a young career. Also Parkinsonism is very fluid. Can be fine one moment then experience quite challenging symptoms the next. So wearable technology has been a useful resource to track sleep, diet and activity and allow us and clinicians to evaluate his daily symptoms and peaks and lows. The smart watch also has a reminder for medication. My father likes to stay very independent with his medication to feel like he has more control over the disease and its management. The reminders are a nice way for him to do this without the need for someone else to constantly remind him. Limitations of wearable technology - not easy for PD patients with tremor and difficulty pressing small buttons. My mother also uses a smartwatch to track her symptoms and activity throughout the day.  [Doorbell] For someone with Parkinson’s there are a lot of motor issues. Quite often there are times that my father will not be able to move or will do so very slowly. While a doorbell with a camera and microphone may seem like a small unnecessary item for the average person, this has allowed my father to answer the door or even ask the individual to wait (explain he is coming but it will take him time) without having to go through these troubling motor symptoms and stress of not answering it in time. This gives him slightly more independence than having to try to make sure someone else is always around to help him or do these daily activities for him. This has also been very useful for my mum as she also has mobility issues, a simple yet effective way to help them complete an otherwise stressful task. [The internet] has also been a valuable resource for staying in touch with my parents. Being a university student now, I am not always home but everything being easily accessible online has allowed me to stay in touch with my parents as well as overseeing and organising appointments, deliveries and other services for them completely online. 


How do you feel about using technology for support?


"I think it has been really useful and technology often can pick up on minute details that we as humans may miss, such as exactly how much less active my father was within intervals throughout the day and his sleeping cycles. This has been really useful to then relay this information to clinicians at appointments. Also been a great resource for me to help with organisation and stay in touch even away from home. I know that my parents can always contact me if they need to. "


Has the use of technology impacted on yours or your parents quality of lives?


"Yes definitely, it has allowed my dad to take more control over his disease and it’s manageable. Also given him more opportunities to complete day-to-day tasks that we take for granted (but for him these tasks represent his independence). "


Do you believe there are any limitations on technology enabling independence? Why do you believe this?


"I think technology has definitely been useful and is continuing to advance but there are still limitations for patients with specific ailments that ‘normal’ technology is not programmed to take into account. "


Is there a gap in the technology industry that could really help your parents independence?


"Definitely a gap within technology specifically for Parkinson's patients - more specifically I think wearable technology is the future of allowing patients to feel more independent despite their ailment (many PD patients including my father find it hard to keep hold of a phone due to muscle strength and tremors) . Many patients, like my father, also find it difficult to use normal wearable items as the buttons are often too small or don’t take into consideration the tremor or other Parkinson’s symptoms."


All in all, Courtney supports the progression of technology in aiding the independence of her father through his onset of Parkinson's disease. However, much of the technology requires careful usage such as precise handling of the device inputs which can be extremely difficult for these individuals. Thus, an exploration into technology which delivers the same quality as the current devices but tailored towards those with Parkinson's Disease would be highly innovative. 


 


 
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Miroslava Katsur 9 months ago

Dear Riyhad, thank you for sharing this insight into the lives of Courtney and her parents and for Courtney telling her opinion about current technologies from the perspective of carer/person with mobility issues. I am so happy to hear that current technology makes them live almost independent lives. There are two issues Courtney highlighted, which is small buttons on devices and no inventions which would help a person with tremor to have a strong grip on the item.

In respect of the first issue, I thought instantly about the voice commands which can be used to control smart watch, phones, computer, etc. So, I've found that speech of people with Parkinson's disease is quieter, sounds breathy or hoarse and people can slur words, mumble or trail off at the end of a sentence. Therefore, to maximise of chances of getting the right function activated, perhaps, the commands should be simple to pronounce. Ideally, it would be great if technology could constantly learn to recognise words of the person, in case their pronunciation varies greatly from time to time. Even if voice control won't be always working, it would give additional way for the user to activate specific function.

The second problem, the grip on the item e.g. watch, phone or cup, is a more complicated one for me... I got immediately the idea of having a glove with sticky tape (similar to ones they use on clothes) and a phone in a case or a cup with a sticky tape. However, one needs to put a glove on and be able to remove the phone/cup... What if it was, instead, not a tape but a magnet which can be turned off somehow? Of course, phone should have protective casing for that.

There is a "giant push button telephone adapter" which can make calling much easier, perhaps, but it is a simple phone, and probably won't be an attractive option for many people, especially if they got used to smart phones. I could not find any solutions which can currently solve these two problems which Courtney has mentioned. However, I found this guide with tools and tips available for people with Parkinson's:
https://www.parkinson.org/sites/default/files...al_Pointers.pdf

I wish Courtney to succeed in her studies, and her parents to continue being independent and safe in these difficult times.

Thanks again, Riyhad, for sharing this dialogue with us!
Does anyone have any ideas of how these two problems can be solved? Is there any other problems which people with mobility issues and tremors experience, but yet not helped?

Update: I found that, individuals with Parkinson's struggle to take medication in the form of tablets. I found that there's a solution is already available but not widespread yet: https://www.optimistdaily.com/2021/01/parkins...th-shaky-hands/

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riyhad uddin 9 months ago

Thank you very much for providing this useful and detailed feedback! I shall be forwarding your ideas to Courtney as I'm sure she will appreciate this

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Miroslava Katsur 9 months ago

Status labels added: Conversation starter, Useful insight

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Esther Hui 9 months ago

Thanks so much for sharing the useful information! Did Courtney's parents use the technology described above before the pandemic? Were they initially hesitant to use apps like "Zoom"?

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riyhad uddin 9 months ago

Thank you for your comment! So I asked Courtney directly and this was her reply:

"So yes these technologies were used prior to the pandemic; however, the Zoom group was set up during the first wave of the pandemic. Before switching to Zoom sessions, the group met in Epping and my parents travelled a few times but doing it every week was a bit much so they’d just go occasionally and stay via text and video call via WhatsApp but now with the pandemic and more things being available online the group formed a zoom call in to meet instead. I wouldn’t say they were hesitant to use these apps, my parents seem to enjoy the benefits that technology has on their lives. Thanks to apps like Zoom, my father now attends every week and can stay more present within that community I guess."

I hope this answers your questions! Please do ask if you have any more

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Esther Hui 9 months ago

Oh wow! Thanks for this information! Really encouraged to know that your parents were not hesitant in using the apps and seem to be enjoying the benefits of technology in their lives!

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