PROBLEM
Imagine yourself in your home 30 years into the future, 40, 50 years. Does it still meet your needs? How would your home have to change if you no longer had consistent balance, or you couldn’t use your legs reliably?
As we age, we have a higher chance of experiencing a degenerative disease or other ailments that can alter our ability to function. Homes today are rarely built with these considerations in mind, forcing individuals to move, or spend money to retrofit their homes to meet their changing needs. Those with degenerative diseases face an even more complicated world where their needs can constantly fluctuate on a daily basis and at times they can be bed ridden for weeks.
This creates a difficult design challenge when needs are not static and most individuals want their home to maintain a personalized visual appeal free of equipment and reminders of their impairment.
This research project provides recommendations to help improve mobility through the home based on user needs. Our recommendations are categorized to cover the overall home design, core pathways, and core rooms such as the bedroom, bathroom, and kitchen where individuals frequent the most and their needs are most apparent.
COLLABORATORS
Ross Monroe
William Dodson
Gina Gross
SPONSOR
Mary Meyer Life Fitness
TIMELINE
March - June 2020,
amid the global pandemic
TYPE
Design Research
Challenges
1. Defining a scope for a wide breadth of areas
We voluntarily chose to work on a wide breadth of areas within our project creating some scope challenges right from the beginning. To help overcome these challenges, we need to tackle our biggest challenges first, which is defining a scope for each area as we discover our users' needs. This means we will be first discovering the most apparent pain points, needs, wants, and commonly discussed areas in order to identify how to focus our energy.
2. Absense of guiding principles
Given the complexity of the users' health conditions and their interactions with their homes, the core research of our project touches on a realm that academia is still exploring. Through literature review, we realized that there weren't mature and comprehensive design guidelines that could be directly applied to the design of our adaptable home project, which means that we need to formulate our own research foundation to allow the project to move forward.
3. Unable to conduct observations due to the global pandemic
The global pandemic added an extra layer of challenge to our project. Data was collected through participant self-reporting, but at times individuals may not have been fully aware of the complexity of their actions.
Background
The Expanded Disability Status Scale
Our design and approach for this project is heavily based on the Expanded Disability Status Scale (EDSS) developed by John Kurtzke in 1983 [1]. This scale serves as a guidepost for us to quantify the “levels of ability” we refer to throughout the project. To explain the EDSS briefly, it is a method for quantifying physical ability in patients with Multiple Sclerosis (MS) and monitoring changes in their physical ability over time. The EDSS scale ranges from 0-10, with 0 representing no disability, 9 being bed ridden and unresponsive, 10 representing death due to MS.
Our project will focus on stages 1-4 of the EDSS scale, which refers to patients who are still able to walk unaided. After stage 4, moving down the scale can happen extremely quickly where individuals can end up relying on canes and walkers to move. Therefore, when you pass stage 4, it is critical that you remain active and try to “bounce” back from that point to maintain long term physical abilities. This notion of bouncing back is our biggest goal for this house – we want to empower those who live within the home to bounce back to stages 1-4 as often as possible to stay physically and mentally healthy long term.
Fig. 1 - A visual representation simplifying the EDSS. Source: Aaron Boster MD and ClinicSpeak [2]
The EDSS stages, however, can still be used in reference to physical disability and disability due to age; while the progression down (or up) the scale changes from our our primary, secondary and tertiary audiences, each stage on the scale represents a level of ability which, in itself, can be experienced by any and all of our audience. All designs in the house aim to help those with disability, period – not exclusively degenerative disease.
Mental Health
Outside of the EDSS, the problem space of disability and effect on mental health is well documented. Risk for developing major depression, anxiety, and other signs of psychological distress is higher for people with degenerative diseases or disabilities compared to their non-disabled counterparts [5]. This stress not only negatively impacts their mental health, but chronic stress is also well-documented to have detrimental effects to one’s immune system and overall health. For a person with a disability, this can create an unfortunate feedback loop in which their disability causes them stress, which negatively affects their health, in turn creating more stress and loss of motivation, and so on, causing their overall state to consistently decline.
Focusing on mental and physical health is highly important in this project, as you can’t exactly “cure” a physical disability or degenerative disease, only manage it - and while you may not be able to fully prevent decline, you can certainly mitigate and disrupt the process through mental and physical exercise.
[1] J.F. Kurtzke. 1983. Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology 33, 11 (January 1983), 1444–1452. DOI:http://dx.doi.org/10.1212/wnl.33.11.1444
[2] Fig. 1: Aaron Boster MD https://twitter.com/aaronbostermd/status/778976127834611712 and ClinicSpeak MS Outcomes https://edss.clinicspeak.com/
Milestone 1: Exploring Users' Life
The core research of our project touches on a realm that academia is still exploring. In general, our approach has mainly three Milestones — exploring our users’ life, understanding user needs with a refined focus, and generating design recommendations.
Population
In creating our interview protocol, one of the first things we did as a group was to formulate our inclusion criteria. Mary Meyer and our team had a vision for this house's audience, specifically those with degenerative conditions and people facing problems inherent to aging. Participants ranged from those with conditions such as Multiple Sclerosis, osteoporosis, and spinal stenosis as well as caretakers who have extensive experience witnessing these daily struggles.
Below is a demographics summary of our study participants:
Interview Round 1
RQ: What are users' day-to-day needs and tasks in their homes?
Since users spend a great amount of time in their home, the complexity and richness that a house entails required us to understand our users’ lives first. For Milestone 1, we conducted semi-structured interviews with 6 participants (shown above) asking about their physical and mental states, pain points, their opinions about their home and specific rooms, and their expectations of an ideal house.
Due to the social distancing circumstances and the stay at home order, all interviews were conducted via video conferencing through Zoom. Before each interview session, participant consent was gained to record. Recordings of the interviews were then used to generate transcriptions.
Interview Coding
We believe the codes that were mentioned the most frequently by our interviewees were the most important ones and should be prioritized. Therefore, within each interview, we ranked the codes by the frequency they appeared in the codebook. We then categorized interviews by three main user groups -- Degenerative Disease, Ageing, and Caretaker so that we could see trends of codes for different user groups.
Affinity Diagrams
We soon observed that many of the things which were crucial to our participants were not easily covered by our categories, and that some of our initial categories did not seem to be large points for many of our participants at all. For example, out of all our ranked and unique codes, mentions of lighting and care for animals ended up much less significant for our participants than we initially expected; these were still important aspects touched upon by participants in our interviews, but we realized that ultimately we needed a better categorization for our results if we wished to actually reflect what our participants told us was important rather than fitting them into our previous categories and skewing the results.
We decided to start from a clean slate and organize the data based on what the data told us was important, and from there, we could compare and contrast it with our previous categories, and use this new data to better refine our categories to reflect the real needs of our users. After using this approach to group our data, the categories we ended up with in our affinity diagram were Areas, Home, Lifestyle, Pain Points, Hazard, Mental / Emotional Health, Physical Health, Caregiver / Family Impact, and Lack of Support.
Stage 1 Findings
Our interview questions focused on specific parts of the home (kitchen, bedroom, bathroom) to help us identify user needs within those spaces. This helped us uncover common pain points which included:
- Inaccessibility of traditional kitchen storage
- Use of the bathroom can be hazardous
- Area to exercise / decompress
- Upkeep of the home
- Access to outdoor spaces
- Equipment storage
- Stairs
Another commonality in the interviews were the participants’ mental health practices; both how they engaged in decompressing or de-stressing activities, as well as their own needs around mental health. A source of decompression mentioned by multiple participants was experiencing nature and the outdoors. Related to mental health was the notion of motivation; some participants expressed a conflict within themselves regarding internal motivation, and weighing the easy thing to do at a given time against what is better for them in the long term. Another thread related to motivation was the need for an external reminder or force to help get a participant to engage in activities or practices they may not find easy to do, for example, to go outside or exercise.
There was crossover in the data related to day-to-day issues that arise for an individual with a degenerative disease that someone from an aging population was likely to experience as well. However, there are times where this does not hold true. An example might be that those within the aging population may need constant physical support due to balance issues, while an individual with a degenerative disease may experience balance issues as a symptom but have it occur at unexpected times and with varying levels of intensity that can last for moments or days.
Synthesizing Data Using Personas
We decided to develop two personas to capture our two primary populations and their needs, which still remain distinct though some needs may overlap. We essentially used our personas, one representing the Degenerative Disease population and one representing the Aging population, to summarize our key findings for each population respectively. We still wanted both of these users’ differing needs to be addressed, while pairing our data down into a more concrete scope.
Milestone 2: A Refined Focus
In the previous Stage, we conducted interviews with 6 participants to help us understand their general pains, needs and general expectations about their house. As our work progressed after Milestone 1, it became clear that we needed to hone in and refine our focus to make sure that we would carry a common perspective and goal moving forward. We decided that follow-up interviews were necessary to gain more detail about what our users' needs were, where in the home they exist, and how often these needs appear. Before starting our second round of interviews, we reviewed our initial findings and discovered that most if not all of our users' needs revolved around physical movement through their home.
Follow-up Interviews
RQ: How do users move through their homes?
Therefore, building upon our previous findings, we refined our focus to be “movement through the home” and further adapted our research approach by conducting a second round of interviews.
Participants and Protocol
We conducted a second round of interviews with 3 of our previous participants. These participants already fit our previous inclusion criteria. The 3 selected for the second round were those we felt most reflected our primary populations; those with degenerative conditions and people facing problems inherent to aging. Their demographic data can be found below:
Synthesizing Data Using User Journey Maps
We synthesized interview data using user journey maps to visualize users' interactions within their homes. In addition, we selected the three most common and concerning scenarios of user movements. With a clearer picture of users’ movements and a deeper understanding of their interactions within their homes, we are more confident about moving forward to the design phase.
Outcome - Design Recommendations
Due to the length of the document, here we only list some of the recommendations. For the complete list, please visit the document here.
Limitations and Future Work
Observations needed
Due to the global pandemic, observations of users could not be performed but we identified this as an integral part of further understanding our user needs. Data was collected through participant self-reporting, but at times individuals may not have been fully aware of the complexity of their actions. Future observations should focus on the home layout, furniture layout, and how users interact with their surroundings. If caregivers are present, the dynamics between the participant and their caregiver would also be valuable to observe. By performing observations, we would be able to capture both the conscious and the unconscious aspects of users’ movements and further understand user needs within the home.
Follow up interviews after an observation session would help to obtain clarification and understanding from users. This would allow the user to reflect and understand why they may perform tasks a certain way and give us the ability to learn more about their unconscious and instinctive actions, as well as the rationale behind them.
ADA Guidelines
A research study into existing ADA guidelines is also valuable. By referring to ADA guidelines, the design recommendations can provide more detail around physical designs that are backed up by industry standards. This would also be a chance to view alternative perspectives for design recommendations.
User Evaluations
With more time, we would perform user evaluations of our design recommendations. Feedback from our users would be helpful to correct misunderstandings, clarify existing recommendations, and get inspiration for new recommendations that we have not yet identified.
With all research studies there are limitations. We faced many due to time, a global pandemic, and an inability to meet our participants in person, but hope that this document can help people facing these challenges feel more confident in their home.