Centre for Global eHealth Innovation, Techna Institute, University Health Network, Toronto, ON, Canada.
Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
J Med Internet Res. 2022 Sep 7;24(9):e40108. doi: 10.2196/40108.
The demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandemic but highlighted an access issue for those who could not use technology-mediated health care services without the support of their informal caregivers (ICs). The complexity of managing HF symptoms and recurrent exacerbations requires many patients to comanage their illness with their ICs in a care dyad, working together to optimize patient outcomes and health-related quality of life. However, most HF programs have missed the opportunity to consider the dyadic perspective despite interdependencies on HF outcomes.
This study aims to characterize the value of technology in supporting caregiving for individuals living with HF.
Motivated by an observed unique pattern of engagement in patients enrolled in our Medly HF management program at the Peter Munk Cardiac Centre in Toronto, Canada, we conducted 20 semistructured interviews with a convenience sample of ICs. All interviews were analyzed using the iterative refinement of a codeveloped codebook. The team maintained reflexivity journals to reflect the impact of their positionality on their coding. Themes were first derived deductively using HF typologies (patient-oriented dyads, caregiver-oriented dyads, and collaboratively oriented dyads) and then inductively refined and recategorized based on concepts from the van Houtven et al framework.
We believe that there is a need to formally and intentionally expand HF technologies to include dyadic needs and goals. We suggest defining 3 opportunities in which value can be added to technological design. First, identify how technology may be leveraged to increase psychological bandwidth by reducing uncertainty and providing peace of mind. We found that actionable feedback was highly desired by both partners. Second, develop technology that can serve as a member of the dyad's support system. In our experience, automated prompts for patients to take measurements can mimic the support typically provided by ICs and ease their workload. Third, consider how technology can mitigate the dyad's clinical knowledge requirements and learning curve. Our approach includes real-time actionable feedback paired with a human-in-the-loop, nurse-led model of care.
Our findings identified a need to focus on improving the dyadic experience as a whole by building IC functionality into digital health self-management interventions. Through a shared model of care that supports the role of the patient in their own HF management, includes ICs to expand and enhance the patient's capacity to care, and acknowledges the need of ICs to care for themselves, we anticipate improved outcomes for both partners.
满足老龄化人口的慢性健康需求的医疗服务需求巨大，但由于临床资源供应有限，这一需求仍未得到满足。具体来说，在管理心力衰竭（HF）方面，数字健康试图在 COVID-19 大流行期间解决这一差距，但凸显了那些没有非正式照顾者（ICs）支持就无法使用技术介导的医疗保健服务的人的获取问题。管理 HF 症状和反复恶化的复杂性要求许多患者与他们的 ICs 一起管理他们的疾病，共同努力优化患者的结果和与健康相关的生活质量。然而，尽管 HF 结果相互依存，但大多数 HF 计划都错过了考虑对偶视角的机会。
本研究旨在描述技术在支持 HF 患者的照护方面的价值。
受我们在加拿大多伦多彼得·蒙克心脏中心的 Medly HF 管理计划中观察到的患者参与的独特模式的启发，我们对一组方便的 ICs 进行了 20 次半结构化访谈。所有访谈均使用迭代细化的共同制定的代码本进行分析。团队保持反思性杂志，以反映他们的定位对编码的影响。主题最初是使用 HF 类型学（以患者为中心的对偶、以照顾者为中心的对偶和协作导向的对偶）进行演绎推导的，然后根据 van Houtven 等人的框架中的概念进行归纳细化和重新分类。
我们认为有必要正式且有意地扩大 HF 技术的范围，以纳入对偶的需求和目标。我们建议定义三个可以为技术设计增加价值的机会。首先，确定技术如何通过减少不确定性和提供安心来增加心理带宽。我们发现，双方都非常希望得到可操作的反馈。其次，开发可以作为对偶支持系统成员的技术。根据我们的经验，自动化提示患者进行测量可以模拟通常由 ICs 提供的支持，并减轻他们的工作负担。第三，考虑技术如何减轻对偶的临床知识要求和学习曲线。我们的方法包括与人工干预相结合的实时可操作反馈，以及由护士主导的护理模式。
我们的研究结果表明，需要通过将 IC 功能构建到数字健康自我管理干预中，来专注于改善整个对偶体验。通过支持患者在自己的 HF 管理中的角色的共同护理模式，包括 ICs 来扩大和增强患者的护理能力，并承认 ICs 照顾自己的需求，我们预计双方的结果都会得到改善。
