Abstract 13892: Self-care is Poor in Lay Caregivers of Patients With Heart Failure, Especially If Caring More Than Eight Hours Daily

Matus, Austin; Thomas, Gladys; Garo, Jenna; Luciani, Michela; Ausili, Davide; Riegel, Bárbara

doi:10.1161/circ.142.suppl_3.13892

Cited by 2 publications

(1 citation statement)

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“…Our results were in line with other studies reporting how prioritizing their patients’ care causes ICs to neglect their own mental, emotional, and physical health needs [ 54 , 55 ]. This self-neglect broadly accounts for 7 of the 10 highest-scored unmet IC needs [ 56 ].…”

Section: Discussionsupporting

confidence: 93%

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study

Benmessaoud,

Pfisterer,

De Leon

et al. 2023

JMIR Hum Factors

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Background The COVID-19 pandemic forced the spread of digital health tools to address limited clinical resources for chronic health management. It also illuminated a population of older patients requiring an informal caregiver (IC) to access this care due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure (HF), this rapid transition exacerbated the demand on ICs and pushed Canadians toward a dyadic care model where patients and ICs comanage care. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care “Caretown for Medly,” which empowers ICs to concurrently expand patients’ self-care abilities while acknowledging ICs’ eagerness to provide greater support. Objective We present the systematic design and development of the Caretown for Medly dyadic management module. While HF is the outlined use case, we outline our design methodology and report on 6 core disease-invariant features applied to dyadic shared care for HF management. This work lays the foundation for future usability assessments of Caretown for Medly. Methods We conducted a qualitative, human-centered design study based on 25 semistructured interviews with self-identified ICs of loved ones living with HF. Interviews underwent thematic content analysis by 2 coders independently for themes derived deductively (eg, based on the interview guide) and inductively refined. To build the Caretown for Medly model, we (1) leveraged the Knowledge to Action (KTA) framework to translate knowledge into action and (2) borrowed Google Sprint’s ability to quickly “solve big problems and test new ideas,” which has been effective in the medical and digital health spaces. Specifically, we blended these 2 concepts into a new framework called the “KTA Sprint.” Results We identified 6 core disease-invariant features to support ICs in care dyads to provide more effective care while capitalizing on dyadic care’s synergistic benefits. Features were designed for customizability to suit the patient’s condition, informed by stakeholder analysis, corroborated with literature, and vetted through user needs assessments. These features include (1) live reports to enhance data sharing and facilitate appropriate IC support, (2) care cards to enhance guidance on the caregiving role, (3) direct messaging to dissolve the disconnect across the circle of care, (4) medication wallet to improve guidance on managing complex medication regimens, (5) medical events timeline to improve and consolidate management and organization, and (6) caregiver resources to provide disease-specific education and support their self-care. Conclusions These disease-invariant features were designed to address ICs’ needs in supporting their care partner. We anticipate that the implementation of these features will empower a shared model of care for chronic disease management through digital health and will improve outcomes for care dyads.

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Section: Discussionsupporting

confidence: 93%

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study

Benmessaoud,

Pfisterer,

De Leon

et al. 2023

JMIR Hum Factors

View full text Add to dashboard Cite

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Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study (Preprint)

Benmessaoud¹,

Pfisterer²,

Leon³

et al. 2022

Preprint

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BACKGROUND The Covid-19 pandemic forced the spread of digital health to address limited clinical resources for managing chronic health conditions. At the same time, it illuminated the population of older patients who could not access this care without an informal caregiver (IC) due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure, this rapid transition to digital health further exacerbated the demand on ICs and pushed Canadians towards a dyadic care model in the management of chronic diseases, where patients and ICs work to manage care together. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care “Caretown,” which empowers ICs to concurrently expand the patient’s ability for self-care while acknowledging IC needs to facilitate a greater level of support. OBJECTIVE The aim of this viewpoint paper is to present the systematic design and development of the Caretown dyadic management module.While heart failure is the outlined use-case, we report on disease agnostic features. METHODS To build the Caretown model, we 1) leveraged the Knowledge to Action (KTA) framework for its ability to translate knowledge into action, and 2) borrowed the Google Sprint from industry titans to quickly “solve big problems and test new ideas” which has been effective in the medical and digital health space. Specifically, we blended these two concepts into a new framework called the “KTA Sprint”. RESULTS Six core disease-agnostic features were identified to support ICs in care dyads to provide more effective care and to capitalize on the synergistic benefits of dyadic care. These six features were designed to be customizable to suit the patient’s condition, were informed by stakeholder and task analysis, corroborated with literature, and vetted through user needs assessment interviews. These features include (1) Live Reports to enhance data sharing and facilitate appropriate IC support; (2) Care Cards to enhance guidance on the caregiving role; (3) Direct Messaging to dissolve the disconnect across the circle of care; (4) Medication Wallet to improve guidance on managing complex medication regimens; (5) Medical Events Timeline to improve and consolidate management and organization; and (6) Caregiver Resources to provide disease-specific education and support their self-care. CONCLUSIONS These disease-agnostic features were designed to address informal caregiver needs in supporting their care partner. We anticipate the implementation of these features will empower a shared model of care for chronic disease management through digital health, and will improve outcomes for care dyads.

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Abstract 13892: Self-care is Poor in Lay Caregivers of Patients With Heart Failure, Especially If Caring More Than Eight Hours Daily

Cited by 2 publications

References 0 publications

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study (Preprint)

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