“A Remarkable Experience of God, Shaping Us as a Family”: Parents’ Use of Faith Following Child's Rare Disease Diagnosis

Abstract

A child's chronic illness can lead parents to utilize different types of coping, including religious beliefs and practices. Previous studies have generally focused on life-shortening diagnoses. The present study explored parental use of faith when the diagnosis was not life-shortening, using grounded-theory qualitative methodology. Data were collected using semi-structured telephone interviews with N = 12 parents of children diagnosed with Neuroendocrine Hyperplasia of Infancy (NEHI); approximately 50% of the diagnosed population in the United States at the time of the interview. Participants used faith to cope and make meaning in five ways: parents believed NEHI happened for a reason; beliefs provided resilience; parents were sustained by faith communities; beliefs affected parents’ behavior; and beliefs developed over time. The results suggest that chaplains develop means for universal screening for spiritual struggle; educating congregational clergy how to support families in which a child has a chronic illness; and assisting parents construct meaning of their experience.

KEYWORDS:

• chronic disease
• NEHI
• parents
• religious coping
• spirituality

ACKNOWLEDGEMENTS

The authors acknowledge with thanks the parents who participated. The authors also thank J. Denise Wetzel, Medical Writer, for editing of the manuscript.