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. 2022 May 19;21(1):791-804.
doi: 10.1007/s40200-022-01056-6. eCollection 2022 Jun.

Understanding the needs of people aging with type 1 diabetes: a user-focused research study with prototype diabetes advance directive and setting the stage for future research

Dana M Lewis  1 , Joanne Milo  2 , Jhea Espares  3 , Jessie Lin  3 , Jodie Li  3 , Denise Tang  4 , Heidi Rataj  3 , Eliah Aronoff-Spencer  5
Affiliations

Understanding the needs of people aging with type 1 diabetes: a user-focused research study with prototype diabetes advance directive and setting the stage for future research

Dana M Lewis et al. J Diabetes Metab Disord. .

Abstract

Purpose: People living with Type 1 diabetes (T1D) are living longer than ever and facing the new "luxury" of the challenges of aging. While research is slowly expanding and addressing T1D physiology with regards to aging, there is little research addressing specific challenges and barriers to optimal care by those aging with T1D. To address this gap, this study employed human-centered design research to explore the gaps and barriers to care faced by people aging with T1D.

Methods: Researchers employed human-centered design methods of needfinding and user interviews and facilitated participatory workshops. In total, 27 people with T1D (PWT1D), 5 loved ones (partners of PWT1D), and 7 healthcare providers (HCPs) were engaged.

Results: Design artifacts were developed, including user personas that help visually articulate the different experiences of PWT1D and their unique needs as they age, as well as a prototype diabetes-specific advance directive that could be further refined to specifically aid those with Type 1 diabetes who are aging and requiring more interactions with the healthcare system. Initial user testing with people with T1D as well as healthcare providers demonstrated the need for such a diabetes advance directive tool or document.

Conclusion: This work supports the conclusion that additional focus and scientific enquiry should be given to the needs of people aging with Type 1 diabetes, with a goal of improving the experience of all people with T1D when interacting with their care providers or with the healthcare system as a whole.

Keywords: Advance directive; Aging; Care planning; Diabetes; Diabetes advance directive; Diabetes self-management; Patient and public involvement; T1D; Type 1 diabetes.

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Conflict of interest statement

Conflicts of interest/Competing interestsOn behalf of all authors, the corresponding author states that there is no conflict of interest.

Figures

Fig. 1
Fig. 1
A persona of a person with Type 1 diabetes who is tech savvy and proactive in their diabetes management
Fig. 2
Fig. 2
A persona of a person with Type 1 diabetes who cares about simplicity with regards to diabetes management
Fig. 3
Fig. 3
A comparison between the two personas of individuals with Type 1 diabetes
Fig. 4
Fig. 4
An example prototype Diabetes Advance Directive, a one-page document detailing the diabetes management, wishes, and preferences for shared decision-making for people living with diabetes
Fig. 5
Fig. 5
A persona of a person with Type 1 diabetes who is troubled or concerned by their interactions with a new healthcare provider
Fig. 6
Fig. 6
A persona of a healthcare provider concerned about the lack of available time for a healthcare encounter with a person with Type 1 diabetes, as well as realistic about their limited experience supporting people with Type 1 diabetes
See this image and copyright information in PMC

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