Context. Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient's caregiving ''social convoy'' (i.e., family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care. Objectives. Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy. Methods. Grounded theory approach using semi-structured interviews (N ¼ 81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio-recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding. Results. Thematic results aligned with the human-centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human-centered design process and corresponding theme included the following: 1) Empathy: Patient, Caregiver, and Provider Experience reports participants' experience with managing serious illness, caregiving, social support, and technology use. 2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants' perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. 3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains. Conclusion. Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human-centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy.
Objective Information technology supporting patient self-management has the potential to foster shared accountability for healthcare outcomes by improving patient adherence. There is growing interest in providing alerts and reminders to patients to improve healthcare self-management. This paper describes a literature review of automated alerts and reminders directed to patients, the technology used, and their efficacy. Methods An electronic literature search was conducted in PubMed to identify relevant studies. The search produced 2418 abstracts; 175 articles underwent full-text review, of which 124 were rejected. 51 publications were included in the final analysis and coding. Results The articles are partitioned into alerts and reminders. A summary of the analysis for the 51 included articles is provided. Conclusion Reminders and alerts are advantageous in many ways; they can be used to reach patients outside of regular clinic settings, be personalized, and there is a minimal age barrier in the efficacy of automated reminders sent to patients. As technologies and patients’ proficiencies evolve, the use and dissemination of patient reminders and alerts will also change. Practice Implications Automated technology may reliably assist patients to adhere to their health regimen, increase attendance rates, supplement discharge instructions, decrease readmission rates, and potentially reduce clinic costs.
Hospice aides are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about hospice aides' perceptions of their role in providing hospice services. This qualitative study explores hospice aides' perspectives of their work, their relationships with patients, families and interdisciplinary team members, and their contributions to end-of-life care. Two focus groups of hospice aides ( = 13), and 16 hours of observation of in-home caregiving were conducted. Focus group data were inductively and iteratively coded, and three themes were identified: 1) "We're the eyes and ears", 2) "We're kept out of the loop", and 3) "We have no voice." Aides described themselves as front-line providers based on the close relationships they formed with patients and family members, yet felt under-recognized by members of the hospice team. Observational field notes were reexamined with themes to confirm convergence of qualitative and observational data. Better understanding of their role could enhance integration of aides into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce.
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