Dr. Al-Megren is an Assistant Professor of Information Technology at King Saud University in Riyadh, Saudi Arabia. In her research at MIT, through a series of interviews, she has explored the physical, cognitive, and emotional demands of informal (family) caregivers and its impact on the design of technologies. She will be sharing the results of these interviews in the seminar, as well as the experience of co-designing assistive technologies with informal caregivers and persons with disabilities in India and Saudi Arabia.
OK, yes, thank you. Good afternoon, everyone. Thank you. Thank you all for joining us today. This is the Ibn Khaldun fellowship seminar series. Maybe some of you know already what this is. This program is a highly competitive fellowship program for Saudi Arabian women with a doctoral degree.
The program is designed for the development of Saudi Arabian women to be leaders in their field. It was launched about 10, 11 years ago, 2009. That was in collaboration with KFUPM. There was a substantial expansion of the program in 2013 that was supported by Saudi Aramco for five years. And now we have a 10-year collaboration with KACST.
So we've been very, very impressed by our fellows over the years for their continued scientific contributions and their leadership back in Saudi Arabia. The fellowship is hosted in our department, in mechanical engineering at MIT, and I'd like to thank our program manager Theresa Werth, and program administrator Dorothy Hanna, and also our administrative assistant Nadiyah Shaheed. So our speaker today is Dr. Shiroq, and she will speak for about 45 minutes or so. And she is working with Professor Maria Yang in our department. And Maria, would you like to introduce Shiroq?
Yes, I would love to. Thank you, Kamal, or I just learned, Professor KYT. So I believe that was good. So--
She is the only one who calls me that.
[LAUGHS] I like it. So it's been fantastic to work with Shiroq this past year. She is deeply committed to using her scientific and technical gifts to make positive social impact for others, in particular, working on assistive technologies for individuals with disabilities, using cutting edge participatory design techniques, and I think you'll be hearing more about that today.
I will also say that Shiroq's intellectual influence on my own research group has been wonderful this past year. She's an intensely creative person with an imaginative spirit, and she's been a mentor to the junior researchers in my group in a way that I could not have imagined before. She also introduced my group to PowerPoint karaoke. So if you don't know what that is, I suggest you look it up. It's really good. So I just want to thank Shiroq, and I'd like to welcome everyone to listen to her talk. Thank you.
Thank you, Maria. Dr. Shiroq, whenever you're ready.
Thank you so much. Thank you, Professor Kamal and Professor Yang as well, Maria. I'm going to start changing my screen now, with the slides and everything. Can you see it well?
OK, let me just do this thing from the start. All right. Thank you both again for your kind introduction. I am truly privileged, really, to be part of the Ibn Khaldun fellowship, and I look forward to share part of what I've done with Maria. Maria has been fantastic, allowing me to explore all these curious questions that I had about this and that, and you'll see what I mean in a bit.
I've titled my presentation as Understanding and Designing for the Overlooked, as I have primarily focused on user research, and in particular, research that is applied to understand marginalized populations that are often overlooked, if not ignored, such as informal caregivers and persons with disability.
So I'm going to jump right away to the outline. I'll talk a bit. I'll just give a quick overview of the two primary research works that I've done with Maria at the Ideation Lab. I will then focus on one of those works, and present the background, research study results, design considerations that has resulted from the study. I will then talk about the experience I've had co-designing with persons with disabilities in India, with the Humanistic Co-Design initiative, with Dr. Kyle Keane and Anna Musser. And then in the end, I'll talk about what I've been doing post fellowship, and surprise, it's another fellowship.
So as someone with a computer science background, I'm often asked actually why I've decided to go with the Ideation Lab. And well, the Ideation Lab's research aim deepens the theoretical foundation of early stage design processes across product design, system design, and service design as well. That is to develop new products and systems that address challenges of global competitiveness and emerging markets.
And the lab's approach to interdisciplinary research and user-centered design was my primary attraction. And the culture of the lab was so beautifully invigorating, and it made for a lovely home for my research and education the past year. I made long term friends, I hope, and I was very lucky to be part of the lab.
So I wanted to-- one of the products that I wanted to look into was Bitmoji and the self. So I wanted to investigate the relationship, particularly the relationship between Bitmojis and the self, since the interactivity of many virtual environment is reported by the user avatars. And this explains why avatars play an important role in increasing media outcomes, such as character identification and also the flow.
However, less is known about how individuals engage with avatars, particularly with how avatars are chosen or customized, and how these decisions relate to self representation, identity, and the satisfaction of psychological needs as well. It is quite interesting, I think, because we can view the relationship between avatars and the users as being bi-directional. So individuals will select and customize avatar to communicate identity, and controlling these avatars ultimately influence identity in turn.
And why Bitmojis? It's because it's completely immersed within Snapchat right now. And if you haven't heard this yet, Saudi Arabia is actually the number one users of Snapchat and Bitmojis from around the world. And so I wanted to go down that path. I was really curious about it.
The other project is the main topic of this seminar, and it is mainly concerned with understanding family caregivers and deriving design consideration for a future product or platform. This actually extend on work I've done prior to the fellowship with epilepsy-- patients with epilepsy and caregivers as well.
And of course, before I start, I wanted to give a quick shout out to the people I got to work with on both projects. Obviously, Maria Yang. And then we have-- in the Bitmojis project, I was lucky to work with Dr. Najwa AlGhamdi, and we worked closely with a brilliant MIT UROP Rebecca Slater. For the caregiver project, I was privileged to have access to wonderful brains, such as Shaikha Alothman and also Dr. Ragad Allwihan on the research team.
So the number of Americans aged 65 and older is projected to nearly double from 55 million in 2018 to 95 million by 2060, and the 65 and older age group share of the total population will actually rise from 16% to 23%. This global phenomena affects most countries worldwide. For instance, the proportion of people aged 65 years and older is actually expected to grow to an average of 28% in the OECD countries in 2050, while in some countries such as Japan and South Korea, a share of 40% is forecasted.
Obviously, higher age is associated with higher morbidity as well, which in turn affects care dependency. And the increasing number of care-dependent people leads to a higher economic burden for most health care systems, and I think the pandemic makes it quite clear as well. And the principle of outpatient before inpatient also applies to the nursing of older people in need of care. In fact, institutional care is the primary cost driver in elderly long term care, and costs for long term care in nursing home exceeds those of home based care.
A prognosis regarding the number of people in need of care in the US is expected to double from 30 million in 2000 to 27 million in 2050. And generally, elderly care can be organized in inpatient and outpatient care structures, as I mentioned earlier. However, according to 2015 estimates from the National Alliance for Caregiving, during the past year, 65.7 million Americans served as family caregivers for an ill or disabled relative.
And just to add even more importance to this subject, let's look at the costs of care. The value of services that are provided by informal caregivers have steadily increased over the last decade, with an estimated economic value of 470 billion, and that actually matches the value of the sale of Walmart in 2013. Sorry.
So it is becoming clear that care provision in many nations increasingly relies on the work of informal or non-professional carers. Hence, enabling care-dependent people to stay in a home-based care setting as long as possible is an efficient cost-cutting strategy. Informal caregivers, sometimes referred to as family or unpaid carers, and I'll be using these terms interchangeably, can be defined as those who care, unpaid, for family or friends on a full time basis.
Carers would provide ongoing assistance with activities of daily living, such as toileting, feeding, bathing, walking, clothing, or even instrumental activities of daily living, such as shopping, meal preparation, housecleaning, and managing finances. As a result of the demands of the care role, caregivers can experience disruptions to their life due to changes in contact with family, friends, and peers.
Related to this, it has been noted that family caregivers are at heightened risk of experiencing social isolation and loneliness. I think it's such a-- for me personally, it is a personal matter, and that's where the interest in caregivers in epilepsy started, and I decided to continue it on here in Boston.
In this study, we focus on the lives of family caregivers that care for loved ones suffering from dementia. So we narrowed the scope a bit. Unlike other patient-centric research that aims to assist in the care of patients, we aimed to uncover the challenges that are facing family caregivers and explore how to go about supporting their well-being by examining their daily practices and technology technology use.
More specifically, this work is driven by three research questions-- what are the key challenges faced by family caregivers caring for loved ones with dementia, how do various technologies and social media participation mitigate problems faced by family caregivers, and what are the design opportunities and recommendations for a product or platform that can support family caregivers and improve their well-being as well as the level of care? So self care not only will provide care for the person, for the caregiver, but also for the act of care to the other person, the patient.
Recent work in human-computer interaction has highlighted many of the above issues that we recalled, with a view to understanding the role technology might have in mitigating them. And we can roughly classify technologies that support family caregivers found in the literature and in market research as well, are technologies to reduce physical burden, technologies to reduce mental burdens, and technologies to stay in touch and stay strong.
One area of research has developed ways to reduce some of the burdens of care work, for instance, reminder information systems to keep track of daily schedules. Other areas include the design and development of tools to share information between care receivers and network of caregivers. Remote monitoring and awareness systems have also seen their share of research.
Others have identified how technology as well can support family caregivers in seeking emotional and informational support. I'll just give a few examples here of some of these researches and projects. For instance, Astra was designed to provide and evaluate awareness, connecting household and family members supported with mobile systems. So it allows the caregiving unit to work together and schedule the care for the patient.
Aurora is another prototype in a mobile device to promote emotional awareness. Its main objective was to share emotions, drawing on the work of affective computing, indicating that systems must act as a medium to convey emotions. And while there is a growing literature on the benefits of online communities and social networks for caregivers, I've found that there have been relatively few studies of the specific ways that peer support can be expressed. Additionally, there are few examples of what they might look like.
So this work is actually part of a larger interdisciplinary and cross-cultural project that is examining the experience of family caregivers across a range of different populations. So the majority of projects can easily be transferable and applied to a different culture, such as Saudi Arabia. So that's why it was important for me to involve from the beginning researchers from Saudi Arabia, so they would be able to replicate these studies in a different culture.
The work employs a qualitative lens to explore support-seeking behaviors of family caregivers, with the aim to develop a rich and detailed examination. And to achieve this comprehensive examination, multiple sources of evidence were planned. So we had interviews with informal caregivers or family caregivers. We also sat down with case managers and social workers, which often work as intermediary between the payer, between the hospitals, and also the clinics and such, with the caregivers. We also have workshop activities, hopefully, planned for the future, in order to co-design the platform.
In this specific study, we are examining the experience of family caregivers in regards to social connectivity, technology use, and also the openness of the shared caregiving experience in the greater Boston area. We focused on interviewing family caregivers, as well as case managers and social workers.
So I have in this image here just an example of what a caregiver task would be. So we have Sarah. She lives with her father, John. Susan is also a daughter of John, but she doesn't reside with him, so the full time carer in this image is Sarah. There's also the case managers and social workers. And we're talking about the doctors as well, different doctors. You've got the primary care physician, urologist, and so on, that the caregiver will have to communicate with.
And of course, this is even simplified. It gets even more complex when there's more family members involved, more scheduling, more doctors, and so on. So just to differentiate between case managers and social workers, case managers, they have training in the causes, risk factors, and stages of dementia, and they can provide support to the patient and the family. For instance, they can assist families with finding short term in-home care, to check on their loved ones, or to provide assistance when family members are at work.
Social workers, on the other hand, can help people with dementia and their families navigate all the different challenges more holistically, and of course, the challenges that come with the prognosis, and then provide them with a thorough toolkit on how to live life fully with the disease. So this is how we understand the culture of how caregiving is provided, and what of support was provided to the caregivers and the patients as well.
So our focus was on interviews. So far, we interviewed informal caregivers, case managers, and social workers. Recruitment, most participants were recruited by various means, including Facebook groups, Twitter announcement, and advertisement via the Family Caregiver Alliance Research Registry page and also newsletter. We also had physical advertisements, which were distributed at aging centers around the Boston area.
The informal caregivers, so the participants, either informal caregiver, or case manager, or social worker, reached out to one of the two qualitative researchers to arrange a suitable time and location for the interviews. We were able to recruit 15 informal caregivers as participants, 13 of which were female and two were male, with an average age of 57 years old. And all participants were able to identify as family caregivers. And that's something we're going to tap on a bit later on, why it's important that-- for someone to identify as a caregiver.
The sample of family caregivers was intended to be diverse, in order to represent a heterogeneous family caregiver population that provided care to an aging spouse, sibling, or parent. Nine of the participants provided care to their mothers. Two of those also provided care to their fathers. One participant cared for her father, and three participants provided care to their spouse. And the last two participants provided care to their sibling.
And I found that these reflect statistics provided by the National Alliance for Caregiving and the Institute of Aging, where upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. So I should repeat here that I am focusing here on full time caregivers. I understand that with the family dynamics, the work can be a bit divided across siblings and such.
The participants also represented a diverse set of experience with digital technologies and social media, as well as exposure to support and peer network. So as I mentioned, we recruited case managers and social workers to lend a glimpse into their role, and their caregiver experience, and the type of support that is often formally or informally presented to family caregivers.
And like I mentioned earlier, we wanted to narrow the scope to adequately address the problem associated with long term care or with persons diagnosed with a continually worsening disease, such as Alzheimer's or ALS. And for this study, we focused on Alzheimer's disease and dementia.
Alzheimer's is-- and I think there is a good justification for that. Other than the fact that it is a worsening disease, it is an ongoing problem, public health crisis, in fact. There are currently 5.3 million people who suffer from Alzheimer's disease. And in fact, if no cure or prevention for Alzheimer's disease is found, the prevalence is estimated to more than triple by 2050. And ironically, Alzheimer's can profoundly affect not only individuals with the disease, but ultimately the caregivers, which can lead to loneliness and self isolation, which can lead to depression in itself.
So we carried out semi-structured interviews with each participant from both groups of family caregivers, case managers, and social workers. These types of interviews are one of the most dominant and widely used methods of data collection within the social sciences and user-centered research. It allowed us to carry the interviews with a more natural flow to our conversations, and we didn't want it to be too structured or too regimented. And it allowed us to explore subjective viewpoints, and also to gather in-depth accounts of people's experiences.
All interviews were audio recorded and then transcribed. I then applied thematic analysis. The qualitative researchers, myself and Ragad applied a thematic analysis approach for the analysis. It is actually one of the most used qualitative approach to analyzing interviews, and we applied three main stages to it. We familiarized ourselves with the data, which was internalized through transcription of the interviews.
The audio recordings of the interviews were listened to a number of times for their accurate transcription. We then transcribed it. The transcripts were then coded while I listened to recordings, as and when necessary. The third stage was the theme development, where at this stage, codes were read and reread to identify significant border patterns of meaning. Fourth, these categories were aggregated and reduced into the categories that I will share in the next slides.
So I decided to throw out the categories. I've had several quotes from the participants, just to reflect their actual view on the subject, and I'll be discussing this. So taking on the role, from the outset of our interviews, participants explained how they often drifted into their caregiving role without necessarily realizing it, and thus failed to identify themselves as caregivers for some time.
Many reported that the nature of the dementia meant that their responsibilities were initially relatively small, but grew as the illness progressed. Despite the fact that the caregivers interviewed were aware of the deteriorating state of their loved ones, there was still a deeply felt unpreparedness to what the role would entail.
For some family caregivers, this role felt more like a duty than an option. For instance, one of the caregiver says, "I was a caregiver for a lot longer than I identified as one." And she mentions that because she was taking care of her mother, who had schizophrenia before getting Alzheimer's, and she wasn't aware of the fact that she would be classified as a caregiver.
And this is at this point is quite important, because how do we reach out to these caregivers themselves, if they cannot identify as one? How do we develop a group that don't even identify as-- for the part that we want to develop?
Many of the caregivers voiced a lack of models to follow, be it from society, health care professionals, or other caregivers. The role of caregiving was often thrust upon them without much guidance on how to navigate its logistical, financial, and emotional intricacies. And I think this is why it was important for me to include case managers and social workers in this work, because I wanted to see what kind of guidance--
There was obviously a disconnect, because these were reported despite the fact that social workers and case managers were involved in the care. However, the caregivers did not feel like they were being helped. In fact, most of the interviewed caregivers voiced their panic and stress at having to take over these roles without any guidance. That's how they felt, that there was no guidance, no model to follow.
One family caregiver voiced his constant need to recalibrate emotionally on a daily basis, to overcome the sense of overwhelmness, which is an obvious sign of depression. A few family caregivers felt cheated into taking on roles with blindfolds on, and how, if given the chance, they might have strongly considered other options, such as assisted living. And technically, this is the task of a--
Because it's such an overwhelming experience to provide a patient with this diagnosis, and having the caregiver there, the whole experience is quite overwhelming, and comprehension can be quite low. So it is the role of the care manager and social worker to make sure that this information is actually being retained, and that caregivers actually have options.
Many caregivers also expressed their frustration about failing to meet their own expectations about caring for their loved ones. A few regressed back to the lack of model or list to abide by. So they did feel a bit lost, frustrated by not getting any help.
Loss of personal identity. Caregivers often described negative changes in their lives after becoming carers, and that was the overarching theme. The theme of loss incorporates many of these changes. It includes loss of freedom and leisure activities, reduced choices, and also financial losses. It was clear that the experience of becoming a caregiver was one where the needs of the cared for were felt to be prioritized. The caregiver's focus was on helping the person that they cared for.
A lot of participants had started to feel as though they had lost things in their lives that were important to them. They had stopped working, lost contact with old friends, and given up pastimes and hobbies. Some participants did voice their frustration to this loss of identity, as well as the halting of careers. And nevertheless, rarely were these frustrations and loss of opportunities were-- rarely held against those that they cared for.
Social isolation and loneliness is one of the major aspects of an informal caregiver's life. Oftentimes, caregivers spoke about their reduced opportunity to socialize and be around other people on a regular basis, that also go beyond socializing, but being able to connect with others that are in the same situation.
This is largely due to their increased isolation, where it become more difficult to share experiences and identify common problems and solution with others. There's clearly a gap where a network of supportive peers should be. This is also despite the support that we will pull in a few, with one of the themes.
And the studies show the vast negative effect of isolation. Loneliness associated with social isolation is one of the main contributors to these negative outcomes. Lack of social contact and the resulting loneliness increases stress and one's chance of depression. According to a study published by the American Health Association, it can also double the risk of dementia. So stress, depression, and dementia, increased social isolation, thus creating a continuous cycle.
I recall, actually, from one of the interviews, where one of the caregivers was talking about the simple pleasure of going out for a cone of ice cream with her husband was something that is completely not possible, because she couldn't leave her mother alone. She had to essentially call up somebody to take care of it, either a family member, or a carer of sorts, or a paid carer. So these simple pleasures were eliminated from her life because of the caregiving role.
Depression and grief. Many feelings come up when you are caring for someone day in and day out. So this theme was anticipated and expected. Many caregivers were often reluctant to express these negative feelings, for fear they will be judged by others, or with them judging themselves too, or they didn't want to burden others with their problems.
And this was the case mostly for people that felt like this was a duty, for example, a daughter caring for a parent. Family caregivers are obviously at risk for depression, and the interviewed caregivers sometimes expressed this as a feeling of hopelessness, of helplessness, and inability to sleep, or at times trouble in getting up and facing the care day ahead.
Grief was also reported as one factor for caregivers' depression, particularly the constant loss encountered whilst caring for a parent or spouse. So this is somewhat unique as well for dementia, because you see that-- you're witnessing the deteriorating person in front of you. You're losing them continuously.
For instance, one of the carers talked about the grief for about-- for a whole two minutes, she was talking about how she felt about losing hearing her father singing in the kitchen. So she got used to hearing it, but then he lost the ability to communicate anymore, which included singing as well, and she described this as a small death that robbed her of him.
What I thought was really interesting was how much shame and self stigma actually was expressed by the interviewees. So stigma is defined as mark of shame. When we stigmatize people, we obviously engage in discrimination against them. The same type of stigmatization has occurred with dementia and are also transferable to the active carer through person that has ailed by dementia.
Most of the interviewed caregivers found themselves ashamed of their loved one's behavior. This, of course, contributed to the feeling of self isolation as well. And obviously, this would send signals that only strengthened the inclination to friends and family to shy away. So for instance, one of the quotes I have here is that one caregiver was saying, "It's almost like being a stay at home mom," which has its own stigma, unfortunately. It's full time work, and much like caregiving, it's stigmatized by society.
Health care support. So the family caregivers not only expressed frustration about their sufferer's unexpected behaviors that were caused by the disease, but also surprisingly, there are often disappointment with the primary doctors who confirmed their diagnosis of dementia. Many of the interviewed found the caregivers felt they were being offered a terrible diagnosis with little to no support or information on how to get support.
The family caregivers often found the diagnosis to be overwhelming, and the activity of the health care provider was often jarring. For instance, one case manager actually said that there's a whole diagnose and adios phenomena that happens with primary doctors and neurologists, for instance, where it's just a matter of dropping a diagnosis on someone's lap, and then assuming that they'll know how to navigate around it.
So far, the overarching theme was that there was a lot of negative feelings. There was a lot of suppressed feelings that kind of came out throughout the interview. And of course, I wanted to explore that further, and understand what kind of support network that they surrounded themselves with.
So obviously, one way to do that is sharing the caring experience. And interestingly, when we got into this point, it led to a clear division across the caregivers interviewed. In one side, the caregivers felt that there were no point to sharing, due to lack of content or desire. This side of the argument thought that they should display a level of independence to succeed in their roles.
At times, they found their situation to be too unique to be replicated. For instance, one of the interviewed caregivers had to take care of both her parents that were diagnosed with Alzheimer's. However, they both presented their disease as in progress with it in different manners. She found the diagnosis and care were both too unique to share or explore answers about her experience.
And of course, shame plays a role in that as well. So we don't want to share something-- you don't want to share an anecdote about your parent that can be embarrassing to them.
And in the other instance, opportunities to talk with other carers was greatly appreciated. Though many of the participants had rather different caregiving roles and responsibilities, they identified and empathized with the stories of others. Having opportunities to be with other carers was also found to be valuable for very practical reasons.
It was acknowledged by each participant, while there was-- that there was an abundance information available online about the types of support and services a carer can access, understanding what this information means in practice was very challenging. Caregiver support networks were often found via social media or caregiver alliances at the state or federal level. Nevertheless, it seemed there was a clear preference for online communication, as it better supported asynchronous communication.
Caregiving is such a full time job that-- and what happens typically with a caregiver is that they will take a chunk of time-- for instance, one of the caregivers was taking care of his wife, and he dedicated three hours on Wednesday morning to do-- to run errands. And he realized that the support group that he wanted to join only met during the afternoon, where he had to be home with his wife. So it was quite important that support should be provided-- communication and support should be provided in an asynchronous manner.
There was always a desire to share, but there's also this desire to conceal at the same time, particularly to protect privacy. So the interview and interviewees gave several reasons why they did not want to tell others about their sufferer's disease. First, they considered the person they are caring for, and did not want to hurt them by telling others. This is despite some cases where the dementia is so advanced that the cared for would not even realize that this has been reported. But there is this drive to protect the person that they're caring for, even when they're technically emotionally and mentally withdrawn.
Another concern actually discouraged the caregivers from talking to others was a fear of being looked down upon for being disgruntled caregivers. They felt that by sharing their experiences, they will sound like they're complaining about it. Overall, even though the caregivers had this desire to share their caregiving experiences with others, and they did have such opportunities, their pride, as well as their concern about affecting their sufferers worked as a break. Because of these conflicting demands, caregivers were unlikely to talk about the subject much.
The majority of caregivers mentioned utilizing social media for varied reasons, either personal or for caregiving. Social media platforms, such as Facebook, Instagram, and Twitter, were often mentioned by the caregivers. Some also utilized more professional platforms, such as LinkedIn.
The interviewed caregivers often fell into two main camps, those that felt empowered by sharing on social media platforms, while the other group found social media content to be frivolous, and is not the place to share information about caregiving. Other caregivers found social media to be appealing because it widened their universe, enabling them to interact with people who share their cares and concerns.
A few reported that being online lowered their inhibitions, allowing them a place to say what they really mean, without fear of angering someone or hurting their feelings. A caregiver also reported that social networks has helped caregivers maintain their relationship with their family and friends, while forging new alliances with their peers.
For some caregivers, social media's greatest gift lies in its ability to show caregivers that they are not alone. Even though every caregiver's journey is unique, it can be comforting to know that there are times when you will be in the same, stressed out, confused, boat as everyone else who is taking care of an elderly loved one.
One thing I've noted as well is that different social medias were used for different purposes. For instance, Twitter was often used to find information quickly about something. The caregiver would share a question on there, and likely receive an answer from her network soon enough. Facebook was often utilized for their groups, private groups that offered a private space for caregivers to share their experience.
Instagram also proved a valuable resource to link to other caregivers via hashtags. Caregivers have stated-- some of the caregivers actually stated the fact that they would often share pictures of warm moments with the person that they cared for on there. A few caregivers reported at times sharing their caregiving tricks on blogs or podcasts as well.
So what are the design recommendation for a platform or a product that can help caregivers? So family caregivers sought ways to improve the care of their loved ones, as well as maintaining their own well-being. And to lighten the stress of caregiving, they engaged in various strategies by exploiting technologies and social media. Here, I suggest specific design consideration for these technologies to improve the well-being of caregivers.
While we cannot design a support system to support every context of a user group, we can design-- support a defined subset of users. One such way would be via user personas. So there is a particular need for persona developers to understand the various educational and social needs of family caregivers.
The experience of taking on the role of caring is not always easy to realize by the participants. The process of self realization and later self identification as a caregiver was always an ongoing process, as derived from the interviews. Self realization often became apparent with the regimented daily routines and significant changes to personal and social life.
Identifying as a caregiver is not always realized, particularly when the act of care is seen as helping and supporting a relative or a friend. The lack of identification can prove detrimental, as it isolates the caregivers from reaching resources and services that are provided to carers. This is particularly a difficult challenge when designing, as how can we reach groups of carers that do not identify as family caregivers?
Additionally, identifying as a caregiver is often marked with conflicting emotions, some of which is shame and embarrassment. Normalizing the experience of caregiving and the act of caring is important to ensure the destigmatization of the acts themselves. And as are shown in the themes, family caregivers endure a lot of stress due to the large changes caused by dementia suffered by their loved ones. Understandably, the importance of social connection increases the stress on frustrated caregivers.
However, regardless of the need to vent, the caregivers rarely sought help from relatives or peers. In fact, most tightened their social networks and became isolated. A significant issue for caregivers in transition to caregiving was access to practical advice and information. This actually echoed prior work and informational support for family caregivers, since it is not simply the provision of information that is important, it is the exchange of practical, hand-on, know-how, experiences.
For example, one of the examples that were given by a caregiver is that she said that her mom had a hard time using facilities, and she had to take her to a doctor constantly because of her constipation. And she realized she needed to find a working around that. So she would add pills to her food, but she couldn't swallow anymore so she had to crush them in order-- with her applesauce or with her breakfast, to make sure that her bowel movements were regulated much better.
And I think it's these small things, these windows, that are so private to someone. And then having you-- having a caregiver looking into these windows can be quite jarring, understandably so. So I can imagine, for example, a parent that has such a presence in one's life, and then suddenly, you have to keep an eye on their bowel movements, for instance. It is a traumatizing experience.
One thing we did realize as well is that many of the carers wanted to give back to the caregiving community. It would be vital to offer this opportunity as mentorship, in order to grow and to learn. Understandably as well, the development of models or rubric for care may support a richer and easier to interpret information that will be welcome to novice caregivers.
A commonality among caregivers is their restriction on their time as well as location. And thus, a chance to converse in real time with other caregivers can be quite difficult. In fact, it was one of the reasons why most of the caregivers we've met were not able to join local support groups. So asynchronous communication can help navigate conversations in an accommodating manner.
So these are just some of the design recommendations. I keep going back to the interviews, so does Ragad, to make sure that we're making sure that we're covering all of the aspects of the care. And of course, there is-- what's next with this work specifically. So hopefully, the next step is to carry out workshops, probing workshops. Eventually, we'd have to conduct them remotely nowadays, but hopefully that can be manageable.
And we want to be able to kind of probe the caregivers to also invite the less outspoken carers. And this is something that is a limitation of my study here, is the fact that most of the recruited participants reached out to us based on our advertisements. Someone that did not identify as a carer would not have reached out. So hopefully, that's the next stop.
On top of that, after we get a better understanding and crystallize the design recommendations even more, I want to be able to co-design directly with the caregivers. So that was the caregiver portion of things. As I've mentioned in the title, I was looking at caregivers but also persons with disabilities, and that felt like natural transition.
So I've always been interested in the process of co-design, particularly with those who are marginalized, and thus reached out to one of the lecturers for the Principles And Practice of Assistive Technology group, which is PPAT, which is a popular course there. And I wanted to inquire about joining as a listener or perhaps mentoring.
Luckily, I was able to partake in the class, as well as join the Humanistic Co-design Initiative that was led by Kyle Keane and Anna Musser. Humanistic Co-design Initiative is a cooperative of individuals, organizations, and institutions working together to increase awareness about how designers, makers, and engineers can apply their skills in collaboration with people who have disabilities, through the humanistic design process.
So this is a workshop that was carried out over a period of three days in Chennai, India. Students from MIT-- and it was part of the API course. So students from MIT and Indian universities formed small teams during the workshop, and worked closely with an individual with a physical disability. Together, the teams identified a limitation that a co-designer, who was a person of disability-- with a disability-- faced because of that disability, and created a well specified and documented project plan for an assistive technology device that could increase the co-designer's independence if it were to be made.
And I wanted to join-- it's an exciting initiative and I really wanted to be part of it because it's co-designing with marginalized communities in a completely different culture as well. So I do have a few images here from the workshops. So on the first day, Indian and MIT students attended a short lecture series about disabilities, assistive technology, market research, building client relationships, and product design.
And MIT staff and students brought Indian students through a disability simulation, where the students, through the use of various artefacts, such as blindfolds and goggles designed to allow for various degrees of vision, tried to accomplish a series of tasks while experiencing a number of physical impairments, so essentially putting the designers in the co-designer's shoes.
On the second day of the workshop, clients, as we referred to the co-designers, were invited to the workshop. In some instances, this is in fact the first time that a designer would meet someone with a visual impairment or a hearing impairment, and that is due to the culture that surrounds disabilities back in India, but it's also very similar in Saudi Arabia.
So what happened in day two is that we invited co-designers, and we allowed the students and the mentors to form small teams. And each team individually met the client to learn about the client's daily life, interests, strength, and challenges. So how it worked, it was a lot like speed dating, where we had the teams go around the different co-designers. And then at the end, they can decide which co-designer they want to attach to.
So they identified someone that they wanted to work with for the rest of the workshop, and through discourse, the team identified the limitation that the client faces, and collectively, an idea was created of an assistive technology device that will remove that limitation. Each team then shared their assistive technology idea to the entire workshop and received written and oral feedback about their idea from other teams and facilitators.
For the third day, the teams presented their completed projects then to a panel composed of professionals that have worked within the field of assistive technologies, where each team was given constructive feedback to refine and pursue development. So the workshop was more of an ideathon, but it also put-- it put designers and co-designers together to work towards an assistive technology device that will hopefully mitigate the environment's limitations to that person with disability.
And a large part of my role during the workshop was advising and mentoring. That was by helping students and researchers develop well scoped ideas. And the reality was that many projects in India are not well funded, so helping the participant design on a budget was an exciting experience in itself. It also became clear early on that the market for assistive technology is relatively underdeveloped in India. In most cases, when pieces of assistive technology existed, it is likely to be too expensive or at times unreliable, which leaves much room for improvement.
So I'm nearing the end of my talk here, I promise. I just wanted to talk a bit about my life post-IBK. So that's the last two months. So what I did, I was really inspired by the Humanistic Co-design workshop, and we decided to go ahead and do something similar back in Saudi Arabia. However, we wanted to frame it in a way that provided more structure, and we actually referred to it as a fellowship now, since it's a year long commitment for the teams.
So CoCreate KSA is a year long interdisciplinary innovation fellowship program in collaboration with a group of scientists and engineers from MIT, as well as local universities and institutes. It is an initiative that is run by individuals dedicated to empowering local communities to learn to support their citizens with disabilities. The fellowship is focused on empowering local designers, makers, and engineers-- we refer to them as citizen inventors-- to collaboratively develop new assistive technologies alongside local people living with disabilities, and these are the co-designers.
I am currently the program director for CoCreate KSA. I'm working with 12 teams to bring-- we now have 12 teams. They're developing an assistive technology, which I am so proud of. And I think we have-- some of them joined us today, I hope. So hi, CoCreate.
We are already two months in and the teams are progressing very well under the mentorship of academic and entrepreneurial colleagues as well. And we've been lucky in having many more people wanting to join this initiative, as well as contributing time and effort. And this is clear, because I don't think I've met a person that has not been touched by a disability of sorts, either being due to old age or degenerative diseases and so on. So I'm personally touched by it. So I can understand the interest in being part of it.
So thank you all for listening, and I am open for questions. I'm going to be able to see the chat, so bear with me there for a second. So please, feel free to participate via the chat if you have any questions. I'll open up the window so you guys can see me.
Thank you. Thank you for the presentation.
Of course, thank you. Thank you so much. [CHUCKLES]
We have some time for questions or comments. So I think this is maybe a comment or question by-- my mother took care of my aunt, who was, you could say, maybe paralyzed. I mean, she can't even speak. She can't even-- at night when she's asleep, my mother had to turn her in her sleep. And I remember talking with my brothers and sisters, and none of us heard her complain about taking care of her sister. And this was not for like a week or a month. This was for, I would say, maybe close to 20 years, until she passed away.
In the presentation, you were mentioning about the caregivers, family caregivers, that get affected, maybe depression and other kinds of-- yeah. But in somehow, in my mother's case, everyday, she was taking care of her, washing, doing everything, and day after day after day. So I don't know, maybe--
That's truly inspiring. That's truly inspiring, and I can understand it. This is why I'm really interested to take this project and conduct similar interviews in Saudi Arabia, because it's quite a different culture. I don't think anybody identifies as caregivers. My mother was a caregiver. She's actually logged on, [CHUCKLES] I think.
But she never identified as a caregiver. They see it as a duty. There is no place to complain. There's no place to be anything than be there. So I'm really interested, because I do want to give-- this platform that I envision, I want it to be able to help caregivers that don't even identify as carers. But the question is how to reach them, and how to make it OK to talk about things, these frustrations?
And of course, some people-- I remember, one of the quotes that I had actually was one of the participants saying that this is a duty. She is blood, and I have to be there for her. So there is this pride in her work of being a caregiver.
Shiroq, do you-- Dr. Yang has a question. If you could say something about the different projects that CoCreate KSA are working on?
Of course. We actually have-- oh, should I put them on the spot? [CHUCKLES] We have some of the co-creators from KSA here. [CHUCKLES] Shout out to Alia Abdullah. [CHUCKLES] So it's different, every project. It's been wonderful, really. So one of the teams is working with social robotics for autism. One other team is looking to add peripherals to wheelchairs, to allow it to go above curbs. Others are introducing simply just a table or even a battery adjustment to work.
There was also some work in the area of providing a platform similar to the caregivers' that was directed to persons with disabilities, in order to find facilities that have accessible entrances, for instance, which is actually quite ironic, because one of the co-designers that I brought to the Saudi Arabian workshop, he was telling me-- we were supposed to meet together. And I remember calling up different cafes, looking for one that had an accessible entrance.
And the funny thing was, when I called up this cafe, they told me, yes, of course. Yes, it's completely accessible. So I go there, and I realize that there's this huge curb that was not even considered in-- so I thought that was really interesting. And he was-- he's such a wonderful person. His name is Fahad. He was one of the co-designers that we're actually working with right now.
And he was saying that he actually gives workshops now on how to navigate inaccessible environments. So he gives people tricks and how to go about climbing a curb on a wheelchair, for instance. So I thought that was interesting.
We have a group-- so Ali is actually working on a product that would hopefully help people that have problems with their grip, such as children with the Down syndrome, to hold onto the pen a bit better, and not to be fatigued for too long. So they're thinking about using electromyography to measure fatigue and such, to make sure that this fatigue is objectively measured, and to ensure that they'll be able to join classmates and such, in the speed and efficiency of writing, and drawing, and such.
So yes, honestly, multiple projects, beautiful projects. I'm getting jealous myself. I'm like, I want to get my hands on some of those, damn it. And we're actually--
[LAUGHS] So we're actually trying to push towards-- so the idea is not to have them do this project as a research, but also to have them be out there, be available to people. We're talking about intellectual property. We're talking about publications. We're talking about getting them involved in competition, just to get them excited, get them committed. Because unfortunately, the market for assistive technologies, it is there but nobody is willing to fund them. So--
Yeah, so I was just going to add something. So one of the-- you focused on dementia. So what are some of the-- let's say-- let's call it the design or technologies that could be developed, either to help the patient, or to help the caregiver, to make it easy, to make it maybe more-- yeah/ so for either one of them or for both.
Yes. Actually, I've mentioned some of them. Like, Astra and Aurora were some of these applications that not only supported caregivers, but also the patients, in order to get them-- to have them-- essentially to slow the progression of dementia, such as more mental exercises that are more fun than taxing, that allow the caregiver to join the dementia patient and work together in that game as well.
So there has been a lot of work there, but because of-- I do prefer to provide-- to bring those two people together in a way that can simplify the process of understanding, and hopefully accepting the diagnosis, which I don't even know if it's even possible to be accepting of such an illness so easily, especially by the patient or the caregiver as well-- but at least to ease this process in itself. But yes, there are current applications.
This is what I'm hoping. I'm hoping to provide this platform, hopefully, based on the understanding that I collected-- so I want to hopefully normalize this in some way. And this is why it's important for me to sit down with the caregivers, but also with dementia patients at different levels of progression, because we want this platform to be available to the caregivers throughout the patient's prognosis. So even dealing with aftercare, so after the person passes away, how does the caregiver deal with this time of grief, and so on. So we want to be able to pass through all the different steps inshallah.
It is a great undertaking [CHUCKLES] but I'm willing to take it. [CHUCKLES]
Thank you for that, Shiroq. Another one of our participants shares that the participant's mom passed away from Alzheimer's two years ago. The participant shares that one of the biggest challenges was financial considerations and options for mom. Cap as to whether either of those challenges were addressed in your interviews?
Oh, most definitely. Financial problems were always the case, but I have to mention that most of the caregivers I actually interviewed were well off. They were able to pay for caregivers to come by and relieve them from time to time. So I think that was unique about the greater Boston area, where most people were financially more stable than if I went to a bit-- more rural area in the US, for instance.
So they did mention financials but it wasn't a focus. They were essentially well off, because this was one of the questions, demographic questions, that we shared with them.
Yeah, the other issue, it was from me, Mark.
So what-- hey. Because my mom, one of the big things that we found, and especially in South Florida and Boca Raton area, was there were a lot of resources too for her, to give the-- my brother was her caregiver. But a lot of resources that-- he could take her a day to the Florida Atlantic University, and she did art projects, and she did little things to keep her busy, which helped a lot, not only to give her something to do, but also for the caregiver, my brother, to get a break.
So that's really great. The thing is to make sure these caregivers know the resources that are available to them in their area. Because there are starting-- there's more continuing in especially universities, and centers, and all that, so that helped us a lot.
Oh, I bet. And that's the thing, the information is out there, but for some reason, they're not able to reach it, either because they're completely overwhelmed by the situation, that they're not even searching for it. And I realize that the role of the social worker and the case manager was often different from time to time.
So I interviewed both sides. I wanted to understand why there is this disconnect between these two groups that are supposed to be working together for the health of the patient. And I realized that the case managers and social workers were actually frustrated with caregivers because they were not reaching out. So the caregivers felt that they were being ignored, whereas the case managers were saying, we're there, you're just not reaching out. So hopefully, we'll be able to-- this will be taken into consideration with what we're doing, yeah.
Great, thank you.
Mark is one of the wonderful mentors that we have with CoCreate KSA. It's a--
Family affair today, huh?
Excellent. So maybe one last question from Sharifa.
I actually have two questions, so you need to choose one.
Hi. One of the questions is, you listed the themes or the interview findings, which include the social media, the use, the emotions, and so on. So my question is, does these themes come from the questions of the interview or these are the themes that are coming out of the interview analysis?
Yes, a really good question. Those are actually the themes that came out of the analysis. So the focus of the interview questions was asking them what they found challenging, talking about their-- whether it's mental, physical, and so on. We did actually ask specific questions about their use of technology in general, and that's where they tapped into social media and such.
But yes, most of the emotions that they shared were-- like I was telling Maria, I remember every time I left an interview, I felt so exhausted, because there was a lot of sharing. And like I said, it's such an intense emotions, and they found it as an opportunity to share it. And unfortunately, most of these emotions were negative, but I think it was a place for them to vent so they felt comfortable.
But I think it is my role as hopefully a designer of this platform, to also acknowledge the fact that I need to resolve these negative feelings. Nobody should be going through them. So even if it doesn't happen all the time, it's still something that we hope to mitigate.
So you did the-- how many annotators for the interview and how much--
How was the integrator reliability [INAUDIBLE]?
I don't have the numbers, but actually, the research, I don't have the integrator with me right now, but we did actually annotate with Ragad Allwihan. So she was one of the qualitative researchers that I worked with, I mentioned at the beginning. So yes, we both annotate the-- we transcribed and annotated the transcripts.
Sorry, if this is too technical. Because we've done interviews, and we are struggling--
No, of course.
With the-- several iterations for-- to improve how--
Oh, yes, it is a headache. [LAUGHS]
It's a headache.
My last question, that's-- I promise. I want to see-- so once you have this analysis, it's beautiful. It shows there is a lot of parts that we could do or create a technology to help them out. So if there is a one take away message that we need to focus on, a specific technology that would help caregivers to have a better day to day to day life, what would it be?
I think definitely a platform that is private, but would also allow communication between the different caregivers. And like I said, I want to be able to tap into carers that are not even aware that they are carers. So even a clear one person of that facility which is logged on right now is actually my mother. She never realized that she is a caregiver.
So whenever I'm thinking about-- when I was having these interviews, I was thinking about her. She wouldn't reach out. She wouldn't use this platform. So I'm still working towards, how do I attract them? How do I identify this group that is not even-- how do I bring them in the fold of caregiving, and make it not as stigmatized as it is, unfortunately?
But yes, a platform for communication, for information sharing, for handholding between more advanced mentors, essentially. Essentially, it would be something similar to CoCreate, I would suppose, where we have mentors, people who are experienced with caregivers, that went through the loops, like Dr. Mark mentioned, of finding financial help, finding support from different people, finding organizations based on state or federal level, and being able to link all this information together, make it accessible, provide a model that they can go back to.
So dementia-- so your parent is no longer able to communicate. Here are the different things you can do. Your parent is constipated. These are different tricks and methods that you can utilize to make their life easier. So I think this kind of division will make it easier and make it accessible, hopefully, I hope.
Thank you very much. That's wonderful.
Of course. And Sharifa is actually one of the mentors as well in CoCreate. [LAUGHS] Like I mentioned, a family affair.
Excellent. Thank you, Dr. Shiroq. Thank you, Professor Maria, for being with us today. Thank you everyone for participating, and we'll see you again in another seminar of the series. Thank you all.
Thank you. Thank you, Maria. Thank you, Professor Kamal.
Thank you, that was wonderful.
Thank you, everybody. Nadiyah, Theresa, Dorothy, thank you all.