Browsing by Subject "Care partners"

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    Co-Design of a Mobile App For Care Partners Who Manage Medications For People Living With Dementia
    (Oxford University Press, 2024-12-31) Werner, Nicole; Ganci, Aaron; Patel, Himalaya; Thuemling, Teresa; Holden, Richard; Herron School of Art and Design
    For unpaid care partners of community-dwelling people living with Alzheimer’s disease and related dementias (ADRD), medication management is effortful and time-consuming work that often continues over several years. Although this work may be eased by mobile application software (apps), current consumer apps underserve care partners’ needs. Through co-design workshops, our objective was to identify the user requirements for a mobile app supporting at-home medication management for people with ADRD. We conducted five 1-hour virtual co-design workshops with current and recent ADRD care partners. Care partners described their difficulties with medication management, then proposed ideal end-states by hand-drawing storyboards. We co-reflected on care partners’ descriptions and proposals, chose the app’s necessary functions, and digitally sketched corresponding user-facing features. After reviewing the sketches, care partners self-reported attitudes toward the proposed features. We ranked features by desirability, then created a digital user interface prototype. Care partners reviewed the prototype and self-reported adoption intent on a scale from 1 to 5. Seven care partners participated, ages 56-75 (Mdn=63), with 3-14 years’ care-partner experience (Mdn=5.5). Elicited requirements included tracking medication administration, recording behavioral changes, instructing other care partners, and briefing healthcare professionals. The user interface prototype included a medication checklist, observation journal, and contacts management. Care partners self-reported moderately high adoption intent (M=4.2, SD=0.9). By supporting both short- and long-term information needs, the proposed mobile app promotes shared awareness among ADRD care partners and healthcare professionals. This work is foundational to developing the app and assessing usability and utility in situ.
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    Patient and Care Partner Burden in CKD Patients With and Without Anemia: A US-Based Survey
    (Elsevier, 2022-03-07) Michalopoulos, Steven N.; Gauthier-Loiselle, Marjolaine; Aigbogun, Myrlene Sanon; Serra, Elizabeth; Bungay, Rebecca; Clynes, Diana; Cloutier, Martin; Kahle, Erin; Guérin, Annie; Farag, Youssef M.K.; Wish, Jay B.; Medicine, School of Medicine
    Rationale & objective: Chronic kidney disease (CKD) has a far-reaching impact on both patients and care partners, which can be further compounded by frequent complications such as anemia. This study assessed the burden experienced by patients with CKD and the care partners of patients with CKD, with and without anemia. Study design: Online survey. Setting & participants: Adult patients with CKD and the care partners of adult patients with CKD living in the United States were recruited through the American Association of Kidney Patients and a third-party online panel (January 9, 2020-March 12, 2020). Outcomes: Patient and care partner characteristics, care received or provided; health-related quality of life, and work productivity. Analytical approach: Descriptive statistics were reported separately based on the presence or absence of anemia. Results: In total, 410 patients (anemia: n=190, no anemia: n=220) and 258 care partners (anemia: n=110, no anemia: n=148) completed the survey. Most patients reported receiving paid or unpaid care because of their health condition (anemia: 58.9%, no anemia: 50.9%), with an overall average of 14.2 and 11.3 h/wk among the anemia and no anemia patients, respectively. The care partners also reported providing numerous hours of care (anemia: 33.6 h/wk, no anemia: 38.0 h/wk), especially care partners living with their care recipient (anemia: 52.6 h/wk, no anemia: 42.8 h/wk). Among the patients, those with anemia reported a numerically lower average health-related quality of life (Functional Assessment of Cancer Therapy-Anemia score, anemia: 110.1; no anemia: 121.6). Most care partners reported a severe or very severe burden (Burden Scale for Family Caregivers-Short Version score≥15, anemia: 69.1%; no anemia: 58.8%). The work productivity impairment was substantial among employed patients (anemia: 44.9%, no anemia: 35.4%) and employed care partners (anemia: 47.9%, no anemia: 40.7%). Limitations: The survey results may have been subject to selection and recall biases; moreover, the observational nature of the study does not allow for causal inferences. Conclusions: Patients with CKD and the care partners of patients with CKD experience a considerable burden, especially when anemia is present.