Abstract
Context: Supporting patients’ spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. Objectives: To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs’ spiritual needs in keeping with their self-identities. Methods: In this mixed-methods, prospective, longitudinal cohort study, AYAs (14–25 years old) with newly diagnosed cancer self-reported their “religiousness” and “spirituality.” One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12–18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. Results: Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both “religious and spiritual,” five (31%) as “spiritual, not religious,” one (6%) as “religious, not spiritual,” and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified “religiousness” or “spirituality,” most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. Conclusion: AYA self-identities evolve during the illness experience. When words such as “religion” and “spirituality” do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.
Original language | English (US) |
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Pages (from-to) | 1599-1608 |
Number of pages | 10 |
Journal | Journal of Pain and Symptom Management |
Volume | 55 |
Issue number | 6 |
DOIs | |
State | Published - Jun 2018 |
Funding
The authors are grateful to the patients and families who participated in the project. The authors thank Claire Wharton, BS, and Victoria Klein, BS, for their help with recruitment and data management of this study. This research was funded by a St. Baldrick's Fellow Award, a Young Investigator Award from CureSearch for Children's Cancer, a Clinical Research Scholar Award from Seattle Children's Hospital's Center for Clinical and Translational Research, and the National Center for Advancing Translational Sciences of the National Institutes of Health (KL2TR000421). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organizations.
Keywords
- Adolescent and young adult
- cancer
- hope
- palliative care
- quality of life
- religion
- spirituality
ASJC Scopus subject areas
- Clinical Neurology
- Anesthesiology and Pain Medicine
- General Nursing