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.
Background: Disparities in hospice and palliative care (PC) for African Americans have been linked to mistrust toward the healthcare system, racial inequalities, and cultural preferences. Spirituality has been identified as important to African Americans in general. Less is known about the influence of spirituality on African American illness experiences. Objective: The goal of this study was to understand older African Americans’ perspectives on how spirituality influences chronic illness experiences to inform the development of a culturally tailored PC intervention. Methods: In partnership with 5 churches in the Denver metropolitan area, we conducted focus groups with African American older adults (n = 50) with chronic health conditions and their family caregivers. Transcripts were analyzed using a deductive approach. The theoretical framework for this study draws on psychology of religion research. Results: Themes referenced participants’ spiritual orienting systems, spiritual coping strategies, and spiritual coping styles. Psycho-spiritual struggles, social struggles, and sources of social support were also identified. Findings suggest African Americans’ spirituality influences chronic illness experiences. Participants relied on their spirituality and church community to help them cope with illness. In addition, social struggles impacted the illness experience. Social struggles included mistrust toward the healthcare system and not being connected to adequate resources. Participants expressed a need to advocate for themselves and family members to receive better healthcare. Churches were referred to as a trusted space for health resources, as well as spiritual and social support.
The goal of this pilot study was to identify naturally occurring, spiritually relevant conversations and elucidate challenges for nurses in home hospice. We examined naturalistic communication data collected during nurse hospice visits with cancer patients and their family caregivers. Using deductive content analysis, guided by Consensus Conference spiritual categories and definition, categorical themes were identified. Thirty-three visits to seven families were recorded by five nurses. Although most spiritual dialogue was brief, analysis revealed five themes: Spiritual Beliefs and Rituals, Connection, Spiritual Comfort, Closure and Acceptance, and Spiritual Distress. Findings demonstrate the range of spiritual issues raised in hospice and challenges nurses face in maintaining boundaries while remaining genuine and family-centered in providing care. This work serves as a foundation for future research and education to help clinicians to engage in more intentional spiritual conversations in the support of families at end of life.
Background Activated patients have the skills, knowledge, and confidence to manage their care, resulting in positive outcomes such as lower hospital readmission and fewer adverse consequences due to poor communication with providers. Despite extensive evidence on patient activation, little is known about activation in the home hospice setting, when family caregivers assume more responsibility in care management. Objective We examined caregiver and nurse communication behaviors associated with caregiver activation during advanced cancer patients’ home hospice visits using a prospective observational design. Methods We adapted Street’s Activation Verbal Coding tool to caregiver communication and used qualitative thematic analysis to develop codes for nurse communications that preceded and followed each activation statement in 60 audio-recorded home hospice visits. Results Caregiver communication that reflected activation included: demonstrating knowledge regarding the patient/care, describing care strategies, expressing opinions regarding care, requesting explanations of care, expressing concern about the patient, and redirecting the conversation toward the patient. Nurses’ responded by: providing education, reassessing the patient/care environment, validating communications, clarifying care issues, updating/revising care, and making recommendations for future care. Nurses prompted caregiver activation through focused care-specific questions, open-ended questions/statements, and personal questions. Conclusions Few studies have investigated nurse/caregiver communication in home hospice and to our knowledge no other studies focused on caregiver activation. The current study provides a foundation to develop a framework of caregiver activation through enhanced communication with nurses. Implications for Practice Activated caregivers may facilitate patient-centered care through communication with nurses in home hospice thus resulting in enhanced outcomes for advanced cancer patients.
Partners in Care, Bend, OR. Objectives Show one method of integrating palliative care into an oncology practice. Demonstrate metrics tracked and methods used. Original Research Background. It is now well established that palliative care is an integral part of cancer treatment, recommended by the National Cancer Comprehensive Network for evidence-based practices. Partners in Care is a non-profit, community-based hospice/home health agency in Bend OR, and consistent with national trends, it receives late oncology referrals to hospice. Partnership with a multispecialty group was established to allow for a palliative care specialist to be embedded into their oncology clinic. Research Objectives. The hypothesis is that palliative care involvement will result in more referrals to hospice with longer length of stays, improved symptom burden, and enhanced completion of advance care plans (ACPs).
Patient decision aids are tools intended to facilitate shared decision-making. Currently development of a patient decision aid is resource intensive: it requires a decision-specific review of the scientific literature by experts to ascertain the potential outcomes under different treatments. The goal of this project was to conduct a formative evaluation of a generalizable, scalable decision aid component we call Veterans Like Me (VLme). VLme mines EHR data to present the outcomes of individuals “like you” on different treatments to the user. These outcome are presented through a combination of an icon array and simulated narratives. Twenty-six patients participated in semi-structured interviews intended to elicit feedback on the tool’s functional and interface design. The interview focused on the filters users desired with which to make cases similar to them, the kinds of outcomes they wanted presented, and their envisioned use of the tool. The interview also elicited participants information needs and salient factors related to the therapeutic decision. The interview transcripts were analyzed using an iteratively refined coding schema and content analysis. . Participants generally expressed enthusiasm for the tool’s design and functionality. Our analysis identified desired filters for users to view patients like themselves, outcome types that should be included in future iterations of the tool (e.g. patient reported outcomes), and information needs that need to be addressed for patients to effectively participate in shared decision making. Implications for the integration of our findings into the design of patient decision aids are discussed.
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