First Steps in Navigating Spiritual Palliative Care in AYA Cancer Patients

15 Aug 2018 2:10 PM | Brandon Davenport

Digest Commentator: Julia Parrott, Undergraduate student, School of Psychology, University of Ottawa

Digest Editor: Mary Ann O’Brien, PhD, Department of Family and Community Medicine, University of Toronto

Adolescents and young adults (AYA) (ages 15-39) with long term illnesses present a unique challenge for the clinicians addressing their palliative care. Spirituality and religiosity have previously been identified as important parts of helping cancer patients increase their quality of life. Yet, there is a lack of research in exactly how to address AYA religious and spiritual perspectives. AYA are in the process of defining who they are; shaping their own opinions on the meaning of life, independence and identity. Being sick while in this transitional phase makes them vulnerable to decreased physical and mental health outcomes. The purpose of this study was to identify ways to address the spiritual and/or religious components of palliative care in AYA’s with long term illness.

Methods: The “Resilience in Adolescence and Young Adults” study was used for a subset of the sample (n=17). The authors looked at one site from this multisite, prospective longitudinal study and only included individuals aged 14-25 years at the time of their cancer diagnosis. To be eligible, the diagnosis required immediate treatment with multi-agent systemic chemotherapy. Nervous-system tumors were excluded because of the difference in treatment protocol. Quantitative data were analyzed from questionnaires completed at enrollment and qualitative data were collected from one-on-one semi-structured interviews. These interviews were transcribed and analyzed in three steps at three different time points; six months, six to 12 months and 12 to 18 months post-diagnosis. Researchers focused on the participants’ self-reported “religiousness” and “spirituality” and categorized the participants according to how they self-identified and not according to their qualitative narratives. The participants were not provided with definitions of religiousness and spirituality. The theme of hope was included in the qualitative analysis due to the frequency with which it was mentioned.

Results:  Collectively, participants completed 44 interviews. Participants were about 17 years old and most were non-Hispanic white. More participants self-identified as “spiritual” rather than “religious”. Those who identified as “spiritual” and not necessarily “religious” were more likely to look for meaning but struggled with articulating their needs. This group was also more likely to express hopeful statements. Most AYA expressed some existential questioning. There was no consistent definition of religion or spirituality, but there was a common theme of hope. The AYA used hope to discuss the lessons they have learned, how they are going to approach the future and reconcile with the diagnosis. Those who rejected “religion” and “spirituality” demonstrated a negative perception of the divine or were truly agnostic. In the development of palliative guidelines for AYA, the authors emphasized respecting the AYA developing autonomy, while encouraging the exploration of spirituality even if the AYA do not outwardly express this interest. They recommend doing this through discussing hopes, worries, meaning, and changing life perspectives.

Why I liked the article: I liked how the authors focused on respecting the AYA self-identification and allowed them to explore their own interpretation of spirituality and religion. By focusing on constructs that relate to spirituality like hope, worries, and meaning, care providers can help make these existential concepts more accessible. This could lead to improved support for AYAs in their spiritual journeys while battling cancer.

Citation: Barton, K. S., Tate, T., Lau, N., Taliesin, K. B., Waldman, E. D., & Rosenberg, A. R. (2018). “I’m Not a spiritual person.” How hope might facilitate conversations about spirituality among teens and young adults with cancer. Journal of Pain and Symptom Management. doi:10.1016/j.jpainsymman.2018.02.001

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