Helping the Helpers – A research protocol for user-centered technology to aid caregiver management of medications for people with Alzheimer's disease and related dementias
Open accessAbstract
Background and objective Systematically supporting caregiver-assisted medication management through IT interventions is a critical area of need toward improving outcomes for people living with ADRD and their caregivers, but a significant gap exists in the evidence base from which IT interventions to support caregivers' medication tasks can be built. User-centered design can address the user needs evidence gap and provide a scientific mechanism for developing IT interventions that meet caregivers' needs. The present study employs the three phases of user-centered design to address the first two stages of the NIH Stage Model for Behavioral Intervention Development.Methods We will conduct a three-phase study employing user-centered design techniques across three aims: Aim 1) assess the needs of ADRD caregivers who manage medications for people with ADRD (Stage 0); Aim 2) co-design a prototype IT intervention to support caregiver-assisted medication management collaboratively with ADRD caregivers (Stage IA); and Aim 3) feasibility test the prototype IT intervention with ADRD caregivers (Stage IB).Discussion Our user-centered design protocol provides a template for integrating the three phases of user-centered design to address the first two stages of the NIH Stage Model that can be used broadly by researchers who are developing IT interventions for ADRD caregivers.
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The UCD process typically includes five steps: problem identification, solution generation, convergence, prototyping, and initial evaluation.
“This process [48] typically includes five steps, which are (1) problem identification, (2) solution generation, (3) convergence, (4) prototyping, and (5) initial evaluation [49].”
From Co-Designing the MOSAIC mHealth App With Breast Cancer Survivors: User-Centered Design Approach (2024) · cites this paper as [49]
The Methods > Design section describes the authors’ five-stage participatory design process. Methods > Procedure describes generating ideas, converging on a design, developing prototypes, and evaluating them in session 5. The paper does not explicitly give the five steps in the claimed order, and it treats identifying caregiver needs as a separate study phase rather than clearly as the first step of that process. No page numbers are available in our copy. (LLM, conf=0.83)
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Muntefering, C., Larsen, M., Brinkman, A., Fan, C.-W., Marchioni, M., Reaume, C. D., Urish, C. K., Williams, J., Andreae, S. J., Christensen, J. R., et al. (2026) · OTJR Occupational Therapy Journal of Research · doi:10.1177/15394492251409672
Ko, J., Meyer, K., & Wang, J. (2026) · JMIR Nursing · doi:10.2196/85818
Characterizing In-Home Safety Challenges and Strategies for Children With Medical Complexity
Walsh, P., Jolliff, A. F., Seewald, S., Haywood, C., Coleman, C. L., Storey, M. M., Harris, D. S., Walsh, K. E., Khan, A., Werner, N. E., et al. (2026) · PEDIATRICS · doi:10.1542/peds.2026-077711
Self-citation
- Authors
- Werner, N. E., Campbell, N. L., Boustani, M., Ganci, A., & Holden, R. J.
- Affiliations
- University of Wisconsin–Madison (US)
- Regenstrief Institute (US)
- Indiana University – Purdue University Indianapolis (US)
- Corresponding author
- Werner, Nicole E.
- Venue
- Research in Social and Administrative Pharmacy
- Publisher
- Elsevier BV
- Published
- 2022-09
- Volume
- 18
- Issue
- 9
- Pages
- 3680-3686
- ISSN
- 1551-7411 (ISSN-L)
- PMC
- PMC9308637
- OpenAlex
- W4220703457
- Cited by
- 27
- References
- 69
- Citations by year
- 2026: 5 · 2025: 8 · 2024: 8 · 2023: 6
- FWCI
- 9.19
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.elsevier.com/tdm/userlicense/1.0/ (tdm)
- www.elsevier.com/legal/tdmrep-license (tdm)
- www.elsevier.com/open-access/userlicense/1.0/ (am, 320 d)
- doi.org/10.15223/policy-017 (stm-asf)
- doi.org/10.15223/policy-037 (stm-asf)
- doi.org/10.15223/policy-012 (stm-asf)
- doi.org/10.15223/policy-029 (stm-asf)
- doi.org/10.15223/policy-004 (stm-asf)
- Locations
- Research in Social and Administrative Pharmacy (acceptedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- IUScholarWorks (Indiana University) (submittedVersion)
- Funders
- National Institute on Aging (1R21AG072418)
- Topics
- Social Sciences › Demography › Technology Use by Older Adults
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Physical Sciences › Computer Science › Human-Computer Interaction › Usability and User Interface Design
- Keywords
- Alzheimer's disease and related dementias, user-centered design, caregiver needs assessment, co-design, prototype development, feasibility testing
- MeSH terms
- Alzheimer Disease, Humans, Technology, Caregivers
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