Adults with cystic fibrosis: spiritual coping with lifelong disease

Abstract

Cystic fibrosis (CF) is a chronic life-shortening disease requiring significant coping. Spiritual belief relates to treatment behaviors. Little is known about spirituality’s role in adults diagnosed as children, nor how it compares with adults diagnosed as adults. Adults over 18 years, diagnosed as children completed a questionnaire; some were randomized to also participate in an interview or daily phone diary to measure adherence. Qualitative analyses of 25 adults are presented. Participants reframed their disease as part of a Divine Plan, in which Divine assistance was conditional upon adherence. Linear regression models of spiritual constructs on airway clearance, nebulized medication, and exercise are presented. Adults diagnosed as children related spirituality to CF in ways both consistent and different from adults diagnosed as adults. Spiritual beliefs were related to adherence determinants and intentions. Increased understanding of the relationship between spirituality and health behaviors is important to providing person-centered care.

Keywords:

• Chronic disease
• cystic fibrosis
• spirituality
• theory of reasoned action

Acknowledgments

The authors gratefully acknowledge the contributions of the following persons: Audrey Helmrich, Sofia Newaz, McKenzie Roedig, Diana Tsurov, and Natasha Yanes (CCHMC); and Stephanie Hartke, Traci Jenkins, Karen Montag-Liefling, and Ann Williams (UC) for their assistance with data collection, procedures manual and daily phone diaries; and Teresa Pestian, for assistance preparing the manuscript for publication. The authors acknowledge with appreciated study support provided by the Division of Pulmonary Medicine, Cincinnati Children’s Hospital Medical Center, and by the UC Adult CF Fund at the University of Cincinnati.