"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.

The Role and Professional Standards of the Adult-Gerontology Nurse Practitioner in Hospice and Palliative Care.

The adult/gerontology (gero) nurse practitioner (NP) delivers primary and/or specialty palliative care to persons and their families who live each day with a myriad of serious illnesses. In this role, the adult/gero NP uses their skill set to address the whole person (physical, psychological, social, and spiritual/existential) to improve the quality of life for persons they care for. This article is the fourth in a series of 6 highlighting the different roles of the adult/gero NP and the advanced certified hospice and palliative registered nurse, and how these 2 roles overlap. The purpose of this article was to provide details of education and certification pathways for these NP roles, describe the overlaps in clinical care, and illustrate how the adult/gero NP in palliative and hospice care can contribute to leadership in program development for care of persons and their families who live with serious illness.

Patient, Caregiver, and Clinician Perceptions of Palliative Care that Influence Access and Use: A Qualitative Meta-Synthesis.

Objective: Benefits of integration of palliative care early in the trajectory of a patient's serious illness are well established in the literature. Yet, barriers to palliative care access in the US continue to exist. The purpose of this study is to synthesize existing qualitative data of patient, caregiver, and clinician perceptions of palliative care (PC) that influence PC access and use in the US. Methods: A formal qualitative meta-synthesis was completed. The meta-synthesis included 1) a systematic literature search of qualitative studies conducted from 2016 to 2021, 2) a critical appraisal of the included studies, and 3) a reciprocal translation of the study's findings through an interpretive thematic analysis. Results: Seven articles met inclusion criteria resulting in a sample size of patients (n=18), caregivers (n=15), and clinicians (n=118). Three themes emerged with associated subthemes: knowledge and opinions of PC (subthemes of patient and caregiver knowledge and awareness and clinician knowledge and beliefs); care coordination and collaboration (subthemes of communication and trust); and social and structural drivers (subthemes of socioeconomic demographics and time and resources). Conclusions: This qualitative meta-synthesis identifies barriers and facilitators to palliative care access and use. The study findings illuminate the commonalities and differences of the perceptions of the three key stakeholder groups. In addition, this qualitative meta-synthesis reveals the complexities within the US healthcare system, and the challenges patients and their caregivers face accessing PC.

Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have Advanced Cancer.

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants' verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as "Over the Rainbow," "Growth in the Valley," and "The Light at the End of the Tunnel." The pictures embodied the AYAs' thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.

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.

The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer.

OBJECTIVES: 1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer. CONTEXT: In clinical care, addressing patients' hopes may stimulate conversations about their goals, concerns, and values; helping clinicians focus on patient-centered interventions to support the patient's psychological, spiritual, and existential needs. METHODS: This descriptive qualitative study used a phenomenology informed approach to depict experiences with hope by AYAs who have advanced cancer. The participants completed two semi-structured audio-recorded virtual interviews and co-created narratives and drawings about the role of hope before, during, and after experiencing cancer. Thematic analyses were performed on the narratives. RESULTS: Fifteen AYAs aged 12-21 years were recruited from an academic medical center and an online non-profit organization. During data collection participants had either completed treatments (60%), or were actively receiving treatments (40%). Approximately 67% of the sample experienced at least one relapse. A main theme identified from the narratives was Transitions of Hope. Participants described differences in their hope before and after experiencing cancer. Participants who experienced a relapse reported their past experiences helped them build hope during their relapse. Participants described a new sense of purpose after experiencing cancer, such as starting a non-profit organization, giving back to others, doing "what I'm passionate about", and honoring the legacies of others. CONCLUSION: Transitions in the role of hope occurred over time, becoming a source of mental sustenance during cancer treatment, and a source of altruism after experiencing cancer. This study adds to the understanding of hope for AYAs who have advanced cancer.

Virtual Reality-Based Music Therapy in Palliative Care: A Pilot Implementation Trial.

Background: Music therapy (MT) and virtual reality (VR) have shown favorable patient-reported outcomes during serious illness. Objectives: To evaluate implementation measures of feasibility, usability, and acceptability of a VR-based MT intervention. Design: A pilot implementation study of a two-day VR-MT intervention using mixed methods. Patients created a personalized soundtrack with a music therapist, and then paired the soundtrack with a 360° VR environment. Setting/Subjects: Hospitalized patients with palliative care needs. Results: Of 23 patients (ages 20-74 years, 52% women), 17 completed the intervention, including 39% during an intensive care unit stay. Participants scored usability above average. For satisfaction, 53% chose the highest rating. Most participants spoke favorably of VR-MT, describing pleasant emotional and physical responses. Participants provided feedback on length, frequency of use, VR options, and timing of delivery. Conclusion: This VR-MT intervention was feasible, usable, and acceptable for hospitalized palliative care patients. Further study will test VR-MT outcomes.

The experience of uncertainty for patients, families and healthcare providers in post-stroke palliative and end-of-life care: a qualitative meta-synthesis.

PURPOSE: recent data show that there is limited evidence and guidance regarding the best practices for the integration of palliative care (PC) and end-of-life (EOL) post-stroke. The purpose of this meta-synthesis is to understand the PC/EOL experiences after a stroke. METHODS: a meta-synthesis was conducted to answer the following research question-What are post-stroke PC/EOL experiences from the perspectives of patients, families and healthcare professionals (HCPs)? This approach was completed through two main phases-a systematic search and appraisal of the literature and reciprocal translation with interpretive triangulation of the extracted data. Databases searched were MEDLINE, EMBASE, PsycINFO, Joanna Briggs Institute and CINAHL databases (from their inception to April 2020). After data were extracted, a qualitative exploratory design was used to evaluate the PC/EOL in post-stroke experiences. RESULTS: the search identified 696 studies. A total of 14 studies were included in this meta-synthesis as they satisfied our eligibility criteria. Uncertainty post-stroke was the overarching main theme that emerged across post-stroke PC/EOL experiences. Within this theme of uncertainty, opportunities to decrease uncertainty emerged from two interdependent themes-presence of cohesive communication and shared dynamic decision process for both families and HCPs. CONCLUSIONS: to mitigate the degree of uncertainty post-stroke, HCPs should be present, provide clear direct communication and incorporate the value-based goals of care within their medical treatment plan. These findings suggest that future research is needed to focus on how PC approaches can be integrated into stroke care programmes.

Update in Hospice and Palliative Care.

The purpose of this update is to summarize and critique research articles in Hospice and Palliative Care from 2018 that are pertinent and impactful in informing clinical practice. The articles were presented at the 2019 Annual Assembly of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). Eight original research articles published between January 1, 2018, and December 31, 2018, were identified through a systematic PubMed search using the terms "hospice" and "palliative care," a hand search of 22 leading healthcare journals, and discussion with experts in the field. The final articles were chosen based on each study's methodological quality, its ability to be applied across different care settings, and its ability to impact clinical practice. We summarize the eight articles that were chosen and identify ways the articles can be used to inform clinical practice.

Implementing Advance Care Planning: Barriers and Facilitators.

An article by Izumi et al. (2019) in the current issue describes the effect of a brief educational intervention for nurses to increase confidence in their knowledge of advance care planning (ACP). The description of this project offers a useful exemplar for those wishing to implement ACP interventions. This commentary raises questions about the role of nurses in ACP and the design of effective, sustainable ACP programs within complex health systems.

Update in Hospice and Palliative Care.

OBJECTIVE: The objective of this update, presented at the 2018 Annual Assembly of the American Association of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of recent research that has the potential for marked impact on hospice and palliative clinical practice. METHODS: In a departure from previous years, we surveyed AAHPM and HPNA members to determine focused topic areas, from which we selected candidate articles. The two topic areas selected by the membership were "Moving into the great beyond: bringing palliative care into the subspecialties" and "Improving the conversation for patients with serious illness." Seven reports of original research published between January 1, 2012 and November 3, 2017 were identified through a systematic search of relevant databases, hand searching of leading journals, and discussion with experts in the field. Candidate articles were scored and ranked independently by four reviewers based on methodological quality, appeal to a breadth of palliative care clinicians across settings, and potential for impact. RESULTS: We summarize the seven articles with the highest ratings.

Palliative care delivery: descriptions of community-based services in Vellore, India, and Seattle, Washington.

BACKGROUND:: A public health approach to palliative care supports community-dwelling adults with advanced illness. A better understanding of successful community-based palliative care programmes and partnerships is needed to expand community-based services for ageing populations. AIMS:: This study describes two organisations in two different countries that provide health and social services to community-dwelling adults with advanced illness. METHODS:: Unstructured key-informant interviews and observational data were collected at the Christian Medical College's College of Nursing Community Health Programme (Vellore, India) and at Phinney Neighborhood Association Village (Seattle, Washington, USA). FINDINGS:: College of Nursing Community Health Programme nurses work with volunteer community health workers to identify and provide client-focused support to ensure quality-of-life. The Phinney Neighborhood Association Village is a volunteer-led organisation that provides social support. Both serve community-dwelling adults with advanced illness. CONCLUSION:: Partnerships between healthcare organisations and community volunteers support a public health approach to community-based palliative care.

Using cognitive interviews to improve a Psychological-Social-Spiritual Healing instrument: Voices of aging African Americans with serious illness.

AIM: The purpose of this study was to contribute to content validity, by providing input into the linguistic and pragmatic validities, of a 53 item Psychological-Social-Spiritual Healing instrument. BACKGROUND: Discovery of cultural values and beliefs from African American elders' experiences of illness provides insight for development of more culturally sensitive instruments. METHODS: Through an exploratory descriptive design, this study used cognitive interviewing methods to examine linguistic and pragmatic validity of the Psychological-Social-Spiritual Healing instrument, from the perspectives of aging seriously ill AAs. Participants were recruited from urban Jackson, MS from community settings from October 2014 to January 2015. With a purposefully chosen sample of seriously ill African Americans elders (N=15), and using the method of cognitive interviewing, responses related to cultural relevance, clarity and meaning of the 53 items of the instrument were collected. This in-depth query of items was accomplished through the use of both verbal probing and think aloud methods of cognitive interviewing. RESULTS: Thirty-seven items were retained. Eight items were revised. Eight items were deleted. CONCLUSIONS: From the expert input of seriously ill African American elders, a systematic decision-making process of item retention, revision or deletion led to the development of a more culturally sensitive Psychological-Social-Spiritual Healing instrument.

Pilot Study of an Interprofessional Palliative Care Curriculum: Course Content and Participant-Reported Learning Gains.

CONTEXT: The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines recommend that palliative care clinicians work together as interprofessional teams. We created and piloted a 9-month curriculum that focused on 3 related domains: (1) patient-centered, narrative communication skills; (2) interprofessional team practice; and (3) metrics and systems integration. The multifaceted curriculum was delivered through 16 webinars, 8 online modules, 4 in-person workshops, reflective skill practice, written reflections, and small group online discussions. OBJECTIVES: Report evaluations of the course content and skill self-assessments from 24 interprofessional palliative care clinicians. METHODS: Participants rated each learning activity and completed a retrospective pre-post test skill assessment. Learning gains were measured as the difference in the percentage of participants reporting "strong" or "highly competent" skill levels at baseline and the end of the course. Participants also provided examples of how they used the skills in practice. RESULTS: Participants achieved an average learning gain of 50% across all domains, and in each domain communication (54%), interprofessional team practice (52%), and metrics and systems integration (34%). They also gave high ratings for the curriculum content (overall mean [standard deviation] rating of 5.5 (0.7) out of 6). Examples of practice impacts included improved skills in responding to emotions, understanding the equal importance of all professions on their team and incorporating different perspectives into their practice, and learning about outcome measurement in palliative care. CONCLUSION: This curriculum demonstrated success in increasing perceived skills for interprofessional palliative care clinicians in advanced communication, team practice, and metrics and system integration.

Update in Hospice and Palliative Care.

The objective of this update, presented at the 2017 Annual Assembly of the American Association of Palliative and Hospice Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), is to identify, summarize, and critique a sampling of research from the prior year that has the potential for marked impact on hospice and palliative clinical practice. Eight reports of original research published between January 1, 2016 and December 31, 2016 were identified through a systematic PubMed search using the terms "hospice" and "palliative care," a hand search of 22 leading healthcare journals, and discussion with experts in the field. Candidate articles were ranked based on the study's methodological quality, appeal to a breadth of palliative care clinicians across different settings, and potential clinical practice impact. We summarize the eight articles with the highest ratings and give recommendations for clinical practice.

African American elders' psychological-social-spiritual cultural experiences across serious illness: an integrative literature review through a palliative care lens.

Disparities in palliative care for seriously ill African American elders exist because of gaps in knowledge around culturally sensitive psychological, social, and spiritual care. The purpose of this integrative literature review is to summarize the research examining African American elders' psychological, social, and spiritual illness experiences. Of 108 articles, 60 quantitative, 42 qualitative, and 6 mixed methods studies were reviewed. Negative and positive psychological, social, and spiritual experiences were noted. These experiences impacted both the African American elders' quality of life and satisfaction with care. Due to the gaps noted around psychological, social, and spiritual healing and suffering for African American elders, palliative care science should continue exploration of seriously ill African American elders' psychological, social, and spiritual care needs.

Is There Hope? Is She There? How Families and Clinicians Experience Severe Acute Brain Injury.

BACKGROUND: Patients with severe acute brain injury (SABI) raise important palliative care considerations associated with sudden devastating injury and uncertain prognosis. OBJECTIVE: The goal of this study was to explore how family members, nurses, and physicians experience the palliative and supportive care needs of patients with SABI receiving care in the neuroscience intensive care unit (neuro-ICU). DESIGN: Semistructured interviews were audiotaped, transcribed, and analyzed using thematic analysis. SETTING/SUBJECTS: Thirty-bed neuro-ICU in a regional comprehensive stroke and level-one trauma center in the United States. We completed 47 interviews regarding 15 patients with family members (n = 16), nurses (n = 15), and physicians (n = 16). RESULTS: Two themes were identified: (1) hope and (2) personhood. (1) Families linked prognostic uncertainty to a need for hope and expressed a desire for physicians to acknowledge this relationship. The language of hope varied depending on the participant: clinicians used hope as an object that can be given or taken away, generally in the process of conveying prognosis, while families expressed hope as an action that supported coping with their loved one's acute illness and its prognostic uncertainty. (2) Participants described the loss of personhood through brain injury, the need to recognize and treat the brain-injured patient as a person, and the importance of relatedness and connection, including personal support of families by clinicians. CONCLUSIONS: Support for hope and preservation of personhood challenge care in the neuro-ICU as identified by families and clinicians of patients with SABI. Specific practical approaches can address these challenges and improve the palliative care provided to patients and families in the neuro-ICU.

A Community Needs Assessment for the Development of an Interprofessional Palliative Care Training Curriculum.

BACKGROUND: There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. OBJECTIVE: The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. DESIGN: We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. SETTING/SUBJECTS: Each phase incorporated a variety of settings and subjects. MEASUREMENTS: The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. RESULTS: The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. CONCLUSIONS: This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.

African American Elders' Serious Illness Experiences: Narratives of "God Did," "God Will," and "Life Is Better".

The foundation of culturally sensitive patient-centered palliative care is formed from one's social, spiritual, psychological, and physical experiences of serious illness. The purpose of this study was to describe categories and patterns of psychological, social, and spiritual healing from the perspectives of aging seriously ill African American (AA) elders. Using narrative analysis methodology, 13 open-ended interviews were collected. Three main patterns were "prior experiences," "I changed," and "across past, present experiences and future expectations." Themes were categorized within each pattern: been through it . . . made me strong, I thought about . . . others, went down little hills . . . got me down, I grew stronger, changed priorities, do things I never would have done, quit doing, God did and will take care of me, close-knit relationships, and life is better. "Faith" in God helped the aging seriously ill AA elders "overcome things," whether their current illness or other life difficulties.