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Development of home personas to inform design of consumer health IT
Event Type
Poster Presentation
TimeThursday, April 152:13pm - 2:15pm EDT
LocationDigital Health
DescriptionIntroduction
Personas have been widely used for communicating dimensions of users that need to be accounted for in the user-centered design of digital health technologies and devices.1, 2 Effectively specifying user archetypes, personas build empathy for end-users and can help designers avoid pitfalls including designing for an over-generalized user or producing designs that are self-referential, i.e. specific to those who designed it.3 Despite these benefits, personas, bound by their focus on the user, often neglect the setting and context of individuals’ everyday lives.

We know that context is decisive. Particularly in the management of chronic health conditions, people rely on their home’s physical environment, which can both positively and negatively impact their well-being and function, to manage health information and afford resilience.4-6

Yet, homes are idiosyncratic, dependent upon each individuals’ circumstances and experiences. To avoid common design pitfalls, we must develop design aids that address and better communicate the everyday context of the user. Employing human factors methods, we propose the development of home personas that effectively capture and display essential information about home contexts in which users will interact with digital technologies.

Home personas, a low-technology solution to describing the environments in which patients are embedded, are likely applicable to all health IT design; however, we start development by looking specifically at the case of families caring for children with medical complexity (CMC). This population, who relies heavily on family caregivers to provide complex care in their home7, reflects many dimensions that are likely to be salient in developing home personas, including the need to account for multiple caregivers in the physical space, the need to account for medical equipment and technology, the potential need for spatial modifications, and the need for managing medication and therapies.

If we are to truly design equitable digital health tools for consumers to self-manage their and their family’s health needs, we need to account for the broad variety of homes in which people live. Therefore, as a first step towards building home personas, we sought to identify what aspects of the home were salient to families in providing daily care for their child with medical complexity.

Methods
Participants and Procedure. We conducted in-home interviews with n=30 family caregivers of CMC enrolled in the Pediatric Complex Care Program (PCCP) at the American Family Children’s Hospital. All caregivers were English-speaking and lived in private residences within a 1.5-hour drive of the PCCP. Participants were 80% female, 80% white, and ranged from 20-78 years old (Mean=38). 23% of our participants’ homes were rural. Interviews lasted up to 2 hours, led by two researchers. Caregivers were asked to walk interviewers through the home and demonstrate daily care, while interviewers asked questions using a semi-structured interview guide informed by the Systems Engineering Initiative for Patient Safety (SEIPS) 2.0. Interviews were audio recorded.

Data analysis. Audio recordings were transcribed for analysis using thematic analysis by our multidisciplinary team with expertise in biomedical and human factors, pharmacy, and qualitative research. First, we coded two transcripts and met to organize identified themes. A preliminary codebook was developed and applied to transcripts with weekly consensus-building meetings where the codebook was updated to reflect emerging understandings. All transcripts were dual-coded with the final codebook.

Results
Our analysis resulted in seven Home Characteristics: People & Pets, Spatial Distribution of Tasks, Spatial Distribution of Tools and Technology, Layout, Aesthetics, Location, and Type of Home.

People & Pets includes all people and pets that live in the home. It also includes people who regularly visit the home (e.g., son who lives in a different home) or people who visit the home to provide care services.

Spatial Distribution of Tasks describes the carrying out tasks in specific spaces (e.g., what happens/is done where).

Spatial Distribution of Tools and Technology describes the storage of tools or technologies in specific spaces of the home for either routine or future use (e.g. we have/keep this here).

Layout is the layout of the home, such as where structural components of home are located.

Aesthetics describes having the home look a certain way, specifically having it be a nice place to live, not just for care. (e.g., putting up Christmas decorations.)

Location is the physical location of the home as it relates to anything outside of the home (e.g., close to family, a park, hospital, transportation, etc.)

Finally, Type of Home is the state of the home in regards to when it was built (e.g., old/new), whether it is rented or owned by the family, and the attributes which make the people want to be homeowners or renters (e.g., restrictions associated with modifying the house for convenience).

Discussion and Conclusion
Identifying aspects of the home salient to family caregivers of CMC is an essential first step toward the development of home personas that specify families’ diverse living environments. Further research should explore if the seven aspects we identified are the salient home characteristics for families caring for CMC in other geographic regions, cultural contexts, urbanicity, etc. Beyond families of CMC, these home characteristics may lay the foundation for other populations of varying age, identity, and chronic conditions who manage their well-being at home.

Our next steps in developing home personas are to engage in an iterative design process involving prototyping the visual display of the identified home characteristics and affinity diagramming the coded data. Our goal is to produce 3-6 final home personas that capture core archetypes of the homes of families caring for CMC. This process will involve validation of the proposed home personas by participants. Additionally, the usefulness of the personas will be evaluated by having designers provide feedback.

Personas, while helping to keep designers focused on specific users, or in this case, user context, can also be limiting if not used properly. As such, “designers should be judicious in the use of design techniques, such as personas, which can lead to oversimplification and encourage misleading assumptions about end users.”8(p.8) Yet, without even cursory conceptions of the home environments that people are living in, we cannot truly address the equity of our digital health technologies.

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