"God is going to help me get through this": spirituality perspectives from Hispanic adolescent and young adult cancer survivors.

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5 years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. RESULTS: Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. CONCLUSIONS: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.

My Partner Is My Family: Engaging and Advocating for Lesbian, Gay, Bisexual, Transgender, Queer+ Patients in Goals of Care Conversations.

In goals of care conversations and through the care trajectory, to avoid insensitive or discriminatory care, it is vital clinicians recognize lesbian, gay, bisexual, transgender, queer+ patients' values and wishes. In clinical settings, implicit bias operating within unconscious awareness may challenge the commitment to equitable care, negatively affecting patient outcomes. In this composite case, during a conversation with a social worker/nurse team, a cisgender woman repeatedly expressed her wishes for her female partner to be her decision maker instead of her biological family. The conversation stalled during the patient's attempts to identify her partner as her most valued and trusted person. Interviewer follow-up responses based on motivational interviewing techniques, which do not include strategies for lesbian, gay, bisexual, transgender, queer+ interactions, inaccurately reflected the patient's needs. Two ethical issues emerged, (1) autonomy and (2) beneficence. Clinicians should approach all patients using nongendered language, and allow patients to self-identify and decide which people are in their support system. Lack of inclusivity training has significant potential to affect the patient experience and decrease clinician/patient trust. Clinicians should not assume the decision maker is a cisgender, heterosexual partner or a biological family member. When patients speak about their partners, it is imperative clinicians use the patient's language and not avoid or redirect responses.

Palliative and End-of-Life Care Interventions with Minoritized Populations in the US with Serious Illness: A Scoping Review.

INTRODUCTION: Over the past 20 years, palliative care in the United States has grown significantly. Yet, access to and/or engagement with palliative care for minoritized persons with serious illness remains limited. In addition, the focus of palliative and end-of-life care research has not historically focused on equity-informed intervention development that collaborates directly with minoritized populations. Equity-informed interventions within palliative and end-of-life care research have the potential to champion collaborations with persons with serious illness and their families to mitigate health inequities. The purpose of this scoping review was to examine and describe the literature on the approaches used in the design and development of palliative and end-of-life care interventions with minoritized populations with serious illness. METHODS: The Joanna Briggs Institute methodology for scoping reviews was followed for tracking and reporting purposes. Included articles were described quantitatively and analyzed qualitatively with content analysis. RESULTS: Thirty-seven articles met the inclusion criteria: eight used quantitative methods, eight used qualitative methods, ten reported a community-based participatory research method, nine used mixed-methods, and two had research designs that could not be determined. The qualitative analysis revealed three themes: (1) stakeholder involvement and feedback, (2) intervention focus, and (3) target intervention population (population vs healthcare clinician). CONCLUSIONS: Using an equity-informed research approach is vital to improve palliative and end-of-life care interventions for minoritized communities with serious illness. There is also a need for more robust publishing guidelines related to community-based participatory research methods to ensure publication consistency among research teams that employ this complex research method.

Black Americans, hospitalization, and advance care planning: Structural vulnerability in Home Health Value-Based Purchasing.

Skilled home health (HH) is the largest long-term care setting and the fastest-growing site of healthcare in the United States (U.S.). Home Health Value-Based Purchasing (HHVBP) is a structure of Medicare that penalizes U.S. HH agencies for high hospitalization rates. Prior studies have shown inconsistent evidence about associations of race with hospitalization rates in HH. Evidence supports that Black or African Americans are less likely to participate in advance care planning (ACP), or to complete written advance directives, which could affect their potential for hospitalization when nearing end of life. In this quasi-experimental study, we used Medicare administrative datasets, the Weighted Acute Care Services Use Rates (WACSUR) score, and the Advance Care Planning Protocol (ACPP) score to determine whether the proportion of Black HH patients in the U.S. was correlated with acute care use rates and the robustness of agency protocols on ACP. We used primary and secondary data from the U.S. from 2016-2020. We included Medicare-certified HH agencies. Spearman's correlation coefficient was used. We found a statistical trend showing that the greater proportion of Black patients enrolled in a HH agency, the greater tendency to have a high hospitalization rate. Our findings suggest that HHVBP may encourage patient selection and exacerbate health disparities. Our findings support recommendations for alternative measures of quality in HH to include measures of goal-concordant care coordination when patients are denied admission to HH.

Integrating evidence-based communication principles into routine cancer care.

PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. METHODS: Composite cases, communication skills blueprint, and visual conceptualization. RESULTS: High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, and sample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. CONCLUSION: Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routine oncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

How Does Spiritual Well-Being Change Over Time Among US Patients with Heart Failure and What Predicts Change?

Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) at baseline and 12-month follow-up. Of the 165 patients with spiritual well-being data at follow-up, 65 (39%) experienced probable clinically meaningful changes (> 0.5 SD) in spiritual well-being (35 improved, 30 declined). Increased pain (p = 0.04), decreased dyspnea (p < 0.01), and increased life completion (p = 0.02) were associated with improvement in overall spiritual well-being. Exploratory analyses found different predictors for FACIT-Sp subscales.

Financial interventions for family caregivers of individuals with chronic illness: a scoping review protocol.

INTRODUCTION: There are 53 million caregivers in the USA providing informal care for individuals with chronic illnesses. These caregivers contribute significantly to the healthcare system, yet they may experience adverse consequences due to caregiving, including financial burden. The purpose of this scoping review is to fill a research gap on understanding the nature and effect of financial interventions for family caregivers. METHODS AND ANALYSIS: This study will use the Arksey and O'Malley scoping review framework to systematically search for articles in MEDLINE, PubMed, CINAHL Complete, Cochrane Library, PsycINFO, Dissertations & Theses Global, and Web of Science during April 2022. Articles published from 1997 to the present will be included for the review. Data from articles will be extracted and summarised for financial intervention nature, scope, measurement, effect and health system context. ETHICS AND DISSEMINATION: This study does not include human subjects; therefore, no ethical review will be undertaken. Findings will be disseminated in scholarly journals and at caregiving and ageing conferences, such as the Gerontological Society of America.

Ethical and Policy Implications of Financial Burden in Family Caregivers.

Palliative care nurses are key members of the health care team and provide support to patients and their families navigating chronic and life-limiting illness. Financial burden is an issue inherent to chronic illness, yet has not been fully addressed in family caregivers. The purpose of this article is to (1) provide a case study of a family caregiver navigating chronic illness with her daughter and the associated financial and employment consequences and (2) review the nursing ethical, policy, and practice implications of financial burden for family caregivers. The ethical implications of financial burden in family caregivers relate to health equity and health outcomes for both the patient and family caregiver in treatment access and quality. The policy implications include state and federal policies related to caregiver compensation and support and family medical leave. Palliative care nurses play an integral role in addressing caregiver financial burden through assessment, education, referral, and policy support. Family caregivers are essential to the palliative care team, and palliative care nurses have the opportunity to lead initiatives to support the financial well-being of family caregivers in practice, research, and policy settings.

Spirituality and the Illness Experience: Perspectives of African American Older Adults.

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.

Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care.

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 = 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.

WE'RE THE EYES AND THE EARS, BUT WE DON'T HAVE A VOICE: PERSPECTIVES OF HOSPICE AIDES.

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 (N = 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.

Caregiver Activation and Home Hospice Nurse Communication in Advanced Cancer Care.

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 home hospice visits of patients with advanced cancer 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 patients with advanced cancer.

Veterans Like Me: Formative evaluation of a patient decision aid design.

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.

Automated alerts and reminders targeting patients: A review of the literature.

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.