"A remarkable experience of god, shaping us as a family": parents' use of faith following child's rare disease diagnosis

Hillary N Purcell, Allison Whisenhunt, Joy Cheng, Sophia Dimitriou, Lisa R Young, Daniel H Grossoehme
Journal of Health Care Chaplaincy 2015, 21 (1): 25-38
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.

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