"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.

Facilitators and Barriers to Pediatric Nurse Practitioner Practice in the United States: A Systematic Review.

INTRODUCTION: The pediatric nurse practitioner (PNP) workforce was designed to improve child health equity. We aimed to systematically review the evidence on facilitators and barriers to PNP practice. METHOD: We included empirical studies on PNP practice in the United States and excluded studies with non-identifiable PNP data. We applied Joanna Briggs Institute tools to appraise studies and applied critical interpretive synthesis principles to synthesize. RESULTS: The final sample is 26 studies, mostly published before 2013 and observational. Prescriptive privileges, training program availability, organizational climate, and telehealth are facilitators. Mandated physician supervision, reduced pediatric curricula, geographically disparate training programs, and poor data infrastructure are barriers. The sample is limited by a moderate to high risk of bias. DISCUSSION: Evidence suggests modifiable factors impact PNP practice and could have important implications for child health equity. We offer a theoretical model to guide robust research studying the PNP workforce and health equity.

Use of a Person-Centered Narrative Intervention in an Outpatient Palliative Care Setting: A Feasibility Study.

Person-centered narrative interventions offer potential solutions to facilitate a connection between the person receiving care and the person delivering the care, to improve quality of care, and positively impact a patient's biopsychosocial well-being. This single-arm feasibility study investigates patient-reported outcomes and barriers/facilitators to the implementation of an all-virtually delivered person-centered narrative intervention into the person's electronic health record. Overall, electronic data collection for the patient-reported outcomes was feasible. All 15 participants felt participating in the study was "easy" and "enjoyable," and "not a burden." The facilitators of implementation included: "helpful to the clinician," "appreciated looking at me as whole person," "be seen and heard," "had a connection and trust," and "felt comfortable and relaxing." The barriers to implementation included: "completing all the paperwork," "being rushed for time to complete the PCNI," and some "emotion" during collection of narrative. The use of person-centered narrative interventions is a way to deploy dedicated tools to shift dehumanized healthcare delivery to a more humanized person-centered care that treats people as experts in their own life narratives by incorporating their beliefs, values, and preferences into their plan of care.

Experiences of dignity: Age at onset of serious illness matters.

BACKGROUND: Preserving persons' dignity is integral to nursing. More research is needed to explore how a diversity of patients, particularly those that experience illness from a young age, experience dignity. AIM: Describe the characteristics of dignity for persons living with serious illness. RESEARCH DESIGN: Using a secondary data set of twenty audio-recorded interviews, a thematic content analysis was conducted to identify characteristics of dignity. The research team employed van Gennip et al.'s, 2013 "Model of Dignity in Illness" (1) to create a codebook, which the authors utilized to independently code twenty narrative interview transcripts. PARTICIPANTS AND RESEARCH CONTEXT: Twenty persons living with serious illness of heart failure and/or dialysis-dependent renal failure who were admitted in an acute care hospital. ETHICAL CONSIDERATIONS: This study was approved on August 26, 2019, by the Colorado Multiple Institutional Review Board (COMIRB) IRB Protocol #19-1874. FINDINGS: Early-onset participants expressed markedly different dignity concerns than late-onset participants. In the individual domain, early-onset participants felt that their illness was "normal"; they did not experience the "healthy person to patient" transition described by older onset participants. In the relational domain, early-onset participants expressed that their relationships had already integrated their illness while late-onset participants felt that their illness harmed many of their relationships. In the societal domain, early-onset participants described dignity concerns related to how society impacted their ability to financially support themselves during their illness. DISCUSSION: Differences in the dignity experience of early-onset and late-onset participants are informed by Erikson's "Model of Development" and by Aranda and Jones feminist critique of dignity in healthcare. CONCLUSIONS: Persons with early-onset illness experience dignity differently. Awareness of the importance of work and financial independence to the experience of dignity for seriously ill patients may enhance persons' dignity experience.

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 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.

What Mattered Then, Now, and Always: Illness Narratives From Persons of Color.

Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.