Browsing by Author "Lion, Alex H."

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    Chaplain care in pediatric oncology: Insight for interprofessional collaboration
    (Wiley, 2019-12) Lion, Alex H.; Skiles, Jodi L.; Newton Watson, Beth; Young, J. Daniel; Torke, Alexia M.; Pediatrics, School of Medicine
    Background Although attending to spiritual and religious needs is part of high quality care of pediatric cancer patients, oncology clinicians may not understand the role of the chaplain, resulting in underutilization of resources and failure to fully integrate the chaplain into the clinical team. We provide a description of what the chaplain does in the care of pediatric oncology patients. Methods We conducted a qualitative content analysis of chaplain chart notes over a one‐year period on the pediatric oncology service at a freestanding children's hospital. Using criteria designed to capture multiple potential factors in chaplain referral, we selected 30 patients for thematic analysis. Results In 2016, 166 pediatric patients were diagnosed with cancer and received ongoing care at our institution. From the 30 patients selected, 230 chaplain encounters were documented in the medical chart. Three major themes emerged. (1) The chaplains provided a rich description of spiritual and psychosocial aspects of the patient and family's experience; (2) chaplains provided diverse interventions, both religious and secular in nature; and (3) chaplains provided care within a longitudinal relationship. All three themes depend on the empathic listening by a chaplain. Conclusions The chaplains’ observations about patient and family beliefs, experiences, and emotional/spiritual states have the potential to inform the interdisciplinary care of the patient. Chaplain documentation provides insight into how spiritual care interventions and close relationships may promote patient and family well‐being. In future work, we will explore how to give voice to their insights in caring for pediatric oncology patients.
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    Interprofessional spiritual care education in pediatric hematology-oncology: A pilot study
    (Wiley, 2022-03) Szilagyi, Csaba; Lion, Alex H.; Varner Perez, Shelley E.; Koch, Sarah; Oyedele, Oladele; Slaven, James E.; Montz, Kianna; Haase, Joan E.; Puchalski, Christina M.; Pediatrics, School of Medicine
    Background Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians’ capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology. A model of interprofessional spiritual care entails that all team members attend to patients’ spirituality by employing generalist spiritual care skills and collaborating with spiritual care specialists such as chaplains. Methods Interdisciplinary team members providing care for AYA with cancer and blood disorders were recruited to participate in interprofessional spiritual care education. Our intervention combined an evidence-based online curriculum and in-person discussion groups. Pretest-posttest study examined changes in participants’ skills and practices to identify, address, and discuss spiritual concerns. Surveys were conducted at baseline and at 1, 3, and 6 months after the intervention. Results Participants (n = 21) included physicians, advanced practice providers, nurse coordinators, and psychosocial team members. We observed positive changes in participants’ ability (36%, P < 0.01), frequency (56%, P = 0.01), confidence (32%, P < 0.01), and comfort (31%, P = 0.02) providing generalist spiritual care baseline versus one month, with significant gains maintained through six months (Omnibus P < 0.05). Conclusions Utilizing ISPEC, interprofessional spiritual care education has a strong potential to develop pediatric hematology-oncology team members’ capabilities to attend to the spiritual aspect of whole-person care and thus contribute to the well-being of AYA with cancer and blood disorders.
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    OTHR-27. Narrative Medicine Applied: A Study Elucidating How One Neuro-Oncology Team Grapples With Distress
    (Oxford University Press, 2024-06-18) Riley, Kathy; Toback, Alison L.; Knight, Kelsey; Wimer, Tammy; Coven, Scott L.; Tailor, Jignesh K.; Lion, Alex H.; Medicine, School of Medicine
    BACKGROUND: Absorbing the cumulative weight of neuro-oncology patient stories in isolation leads providers to experience burnout and distress that some in our study called “debilitating.” Sands, Stanley, & Charon (2008) describe the field of pediatric oncology as one that “taunts professionals with the random unfairness” of grave childhood illness. They reason that clinicians in this demanding field may benefit from narrative training to build empathy, teamwork, and resilience. Narrative medicine is a rigorous and evidence-based field of study that utilizes the method of close reading of literature and art to engage providers in discussion and personal reflection. In narrative medicine workshops, participants immerse themselves in a text or image, contemplate their experiences and their relation to the text, write in response to a prompt, and share their writings with one another (Charon, et al., 2017). METHODS: This study sought to understand how narrative medicine workshops conducted in a pediatric neuro-oncology clinical setting impacted individual team members, as well as inter- and intra-team relationships. Data collection for the study included pre- and post-surveys, qualitative interviews, and observation notes recorded by workshop facilitators. Researchers applied Clark’s (2014) framework of three distinct levels – relationship to oneself, relationship to the patient, and relationship to others on the team – to development of pre- and post-survey and qualitative interview questions. RESULTS: Although quantitative data failed to demonstrate that the workshops reduced participant distress, qualitative research generated evidence that the very act of participating in narrative medicine workshops provided a safe space for providers to discuss job-related distress, breaking down hierarchical barriers and moving them toward what one participant called “professional intimacy.” CONCLUSIONS: This research suggests that engaging in narrative medicine practice as a healthcare team may in and of itself alleviate distress and foster healing dialogue in a stressful clinical environment suffused with pain and loss.
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    Targeted treatment of refractory primitive neuroectodermal tumor arising from an immature teratoma with crizotinib leading to a sustained response
    (Wiley, 2023-01-03) Snyder, Benjamin M.; Lion, Alex H.; Helvie, Amy E.; Marshall, Mark S.; Ferguson, Michael J.; Pediatrics, School of Medicine
    Here we present a case of metastatic PNET which arose from an immature teratoma that was refractory to standard Ewing sarcoma chemotherapy. This PNET was determined to have elevated levels of ALK protein via IHC. The patient was treated with crizotinib on a palliative basis with a sustained response.