Shared spiritual beliefs between adolescents with cancer and their families

• Published in: Pediatric blood & cancer Vol. 67; no. 12; pp. e28696 - n/a
• Main Authors: Livingston, Jessica, Cheng, Yao I., Wang, Jichuan, Tweddle, Matthew, Friebert, Sarah, Baker, Justin N., Thompkins, Jessica, Lyon, Maureen E.
• Format: Journal Article
• Language: English
• Published: United States Wiley Subscription Services, Inc 01-12-2020
• Subjects: Adolescent; Adolescent Behavior; Adolescents; Adult; Advance Care Planning - statistics & numerical data; Advance directives; Cancer; congruence; Cross-Sectional Studies; Decision Making; Demography; family; Family - psychology; Female; Follow-Up Studies; Hematology; Humans; Longitudinal Studies; Male; Neoplasms - psychology; Neoplasms - therapy; Oncology; Patients; Pediatrics; Prognosis; quality of life; Religion and Medicine; Single-Blind Method; Spirituality; Teenagers; Young Adult; cancer; family; quality of life; spirituality; adolescents; congruence
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.28696

Background
FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients’ preferences for future health care, if patients cannot communicate. Spiritual well‐being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning.
Procedure
As part of four‐site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy‐spiritual well‐being‐ version 4 (FACIT‐Sp‐EX‐4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence‐adjusted and bias‐adjusted kappa (PABAK) measured congruence on FACIT‐Sp‐EX‐4.
Results
Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well‐being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: “I have a reason for living,” “I feel loved,” “I feel compassion for others in the difficulties they are facing.” Three items had <61% agreement and Poor PABAK: “I feel a sense of harmony within myself,” “My illness has strengthened my faith or spiritual beliefs,” “I feel connected to a higher power (or God).” Dyadic congruence was compared by social‐demographics using median one‐way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194.
Conclusions
Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well‐being for adolescents.