title: "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.
authors.affiliation: a Division of Pulmonary Medicine , Cincinnati Children's Hospital Medical Center , Cincinnati , Ohio , USA.
authors.forename: Hillary N
authors.initials: HN
authors.lastname: Purcell
authors.forename: Allison
authors.initials: A
authors.lastname: Whisenhunt
authors.forename: Joy
authors.initials: J
authors.lastname: Cheng
authors.forename: Sophia
authors.initials: S
authors.lastname: Dimitriou
authors.forename: Lisa R
authors.initials: LR
authors.lastname: Young
authors.forename: Daniel H
authors.initials: DH
authors.lastname: Grossoehme
mesh_terms: D000223:Adaptation, Psychological; D002604:Chaplaincy Service, Hospital; D002908:Chronic Disease; D005260:Female; D006801:Humans; D006965:Hyperplasia; D007223:Infant; D008168:Lung / Q000473:pathology; D017563:Lung Diseases, Interstitial / Q000175:diagnosis / Q000523:psychology*; D008297:Male; D055099:Neuroendocrine Cells / Q000473:pathology; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D035583:Rare Diseases / Q000175:diagnosis / Q000523:psychology*; D012067:Religion; D012944:Social Support
keywords: NEHI; chronic disease; parents; religious coping; spirituality