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

REFERENCES

• Baldacchino, D. R., Borg, J., Muscat, C., & Sturgeon, C. (2012). Psychology and theology meet: Illness appraisal and spiritual coping. Western Journal of Nursing Research, 34(6), 818–847. doi:10.1177/0193945912441265
   PubMed Web of Science ®Google Scholar
• Benjamins, M. R. (2006). Religious influences on trust in physicians and the health care system. The International Journal of Psychiatry in Medicine, 36(1), 69–83. doi:10.1007/s10865-005-9035-2
   PubMed Web of Science ®Google Scholar
• Charmaz, K. (2006). Constructing grounded theory. Thousand Oaks, CA: Sage Publications.
   Google Scholar
• Deterding, R. R., Pye, C., Fan, L. L., & Langston, C. (2005). Persistent tachypnea of infancy is associated with neuroendocrine cell hyperplasia. Pediatric Pulmonology, 40(2), 157–165. doi:10.1002/ppul.20243
   PubMed Web of Science ®Google Scholar
• Ekedahl, M., & Wengström, Y. (2007). Nurses in cancer care – Stress when encountering existential issues. European Journal of Oncology Nursing, 11(3), 228–237. doi:10.1016/j.ejon.2006.09.005
   PubMed Web of Science ®Google Scholar
• Fitchett, G., Murphy, P. E., Kim, J., Gibbons, J. L., Cameron, J. R., & Davis, J. A. (2004). Religious struggle: Prevalence, correlates and mental health risks in diabetic, congestive heart failure, and oncology patients. The International Journal of Psychiatry in Medicine, 34(2), 179–196. doi:10.2190/UCJ9-DP4M-9C0X-835M
   PubMed Web of Science ®Google Scholar
• Gomes, V. C. C., Silva, M. C. C., Filho, J. H. M., Daltro, P., Ramos, S. G., Brody, A. S., & Marchiori, E. (2013). Diagnostic criteria and follow-up in neuroendocrine cell hyperplasia of infancy: A case series. Jornal Brasileiro de Pneumologia, 39(5). 569–578. doi:10.1590/S1806-37132013000500007
   PubMed Web of Science ®Google Scholar
• Grossoehme, D. H. (2014). Overview of qualitative research. Journal of Health Care Chaplaincy, 20(3), 109–122. doi:10.1080/08854726.2014.925660
   PubMedGoogle Scholar
• Grossoehme, D. H., Cotton, S., & McPhail, G. (2013). Use and sanctification of complementary and alternative medicine by parents of children with cystic fibrosis. Journal of Health Care Chaplaincy, 19(1), 22–32. doi:10.1080/08854726.2013.761007
   PubMedGoogle Scholar
• Grossoehme, D. H., Cotton, S., Ragsdale, J., Quittner, A. L., McPhail, G., & Seid, M. (2013). “I honestly believe God keeps me healthy so I can take care of my child”: Parental use of faith related to treatment adherence. Journal of Health Care Chaplaincy, 19(2), 66–78. doi:10.1080/08854726.2013.779540
   PubMedGoogle Scholar
• Grossoehme, D. H., Ragsdale, J., Wooldridge, J. L., Cotton, S., & Seid, M. (2010). We can handle this: Parents’ use of religion in the first year following their child's diagnosis with cystic fibrosis. Journal of Health Care Chaplaincy, 16(3–4), 95–108. doi:10.1080/08854726.2010.480833
   PubMedGoogle Scholar
• Grossoehme, D. H., Ragsdale, J. R., Cotton, S., Meyers, M. A., Clancy, J. P., Seid, M., & Joseph, P. M. (2012). Using spirituality after an adult CF diagnosis: Cognitive reframing and adherence motivation. Journal of Health Care Chaplaincy, 18(3–4), 110–120. doi:10.1080/08854726.2012.720544
   PubMedGoogle Scholar
• Grossoehme, D. H., Ragsdale, J. R., Snow, A., & Seid, M. (2011). We were chosen as a family: Parents’ evolving use of religion when their child has cystic fibrosis. Journal of Religion and Health, 51, 1347–1358. doi:10.1007/s10943-011-9477-5
   Web of Science ®Google Scholar
• Hexem, K. R., Mollen, C. J., Carroll, K., Lanctot, D. A., & Feudtner, C. (2011). How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. Journal of Palliative Medicine, 14(1), 39–44. doi:10.1089/jpm.2010.0256
   PubMed Web of Science ®Google Scholar
• Krause, N., & Wulff, K. M. (2005). Research: “Church-based social ties, a sense of belonging in a congregation, and physical health status”. The International Journal for the Psychology of Religion, 15(1), 73–93.doi:10.1207/s15327582ijpr1501_6
   Google Scholar
• Kurland, G., Deterding, R. R., Hagood, J. S., Young, L. R., Brody, A. S., Castile, R. G., & Redding, G. J. (2013). An official American thoracic society clinical practice guideline: Classification, evaluation, and management of childhood interstitial lung disease in infancy. American Journal of Respiratory and Critical Care Medicine, 188(3), 376–394. doi:10.1164/rccm.201305-0923ST
   PubMed Web of Science ®Google Scholar
• Lukkarinen, H., Pelkonen, A., Lohi, J., Malmstrom, K., Malmberg, L. P., Kajosaari, M., & Makela, M. J. (2012). Neuroendocrine cell hyperplasia of infancy: A prospective follow-up of nine children. Archives of Disease in Childhood, 98, 141–144. doi:10.1136/archdischild-2012-302115
   PubMed Web of Science ®Google Scholar
• Marshall, E. S., Olsen, S. F., Mandleco, B. L., Dyches, T. T., Allred, K. W., & Sansom, N. (2003). “This is a spiritual experience”: Perspectives of Latter-Day Saint families living with a child with disabilities. Qualitative Health Research, 13(1), 57–76. doi:10.1177/1049732302239411
   PubMed Web of Science ®Google Scholar
• Midanik, L. T., Greenfield, T. K., & Rogers, J. D. (2001). Reports of alcohol-related harm: Telephone versus face-to-face interviews. Journal of Studies on Alcohol and Drugs, 62(1), 74–78.
   PubMed Web of Science ®Google Scholar
• Morse, J. M. (1995). The significance of saturation. Qualitative Health Research, 5, 147–149. doi:10.1177/104973239500500201
   Web of Science ®Google Scholar
• Newport, F. (2012). Seven in 10 Americans are very or moderately religious. Retrieved from http://www.gallup.com/poll/159050/seven-americans-moderately-religious.aspx?ref=moreApril15,2013.
   Google Scholar
• Pargament, K. I. (1997). Psychology of religious coping. New York, NY: Guilford Press.
   Google Scholar
• Pargament, K. I. (2008). Religious struggles: A fork in the road to growth or decline. Paper presented at the Spirituality, Health, and Human Flourishing: Meaning? Measurement? Implications? Durham, North Carolina.
   Google Scholar
• Pargament, K. I., Koenig, H. G., Tarakeshwar, N., & Hahn, J. (2001). Religious struggle as a predictor of mortality among medically ill elderly patients: A 2-year longitudinal study. Archives of Internal Medicine, 161, 1881–1885. doi:10.1001/archinte.161.15.1881
   PubMed Web of Science ®Google Scholar
• Pargament, K. I., Murray-Swank, A., Magyar, G., & Ano, G. C. (2006). Spirituality: A pathway to posttraumatic growth or decline? In L. G. Calhoun & R. G. Tedeschi (Eds.), Handbook of posttraumatic growth: Research and practice (pp. 121–137). Mahwah, NJ: Lawrence Erlbaum.
   Google Scholar
• Pendleton, S. M., Cavalli, K. S., Pargament, K. I., & Nasr, S. Z. (2002). Religious/spiritual coping in childhood cystic fibrosis: A qualitative study. Pediatrics, 109(1), e8. doi:10.1542/peds.109.1.e8
   PubMed Web of Science ®Google Scholar
• Popler, J., Gower, W. A., Mogayzel, P. J.Jr., Nogee, L. M., Langston, C., Wilson, A. C., & Deterding, R. R. (2010). Familial neuroendocrine cell hyperplasia of infancy. Pediatric Pulmonology, 45, 749–755. doi:10.1002/ppul.21219
   PubMed Web of Science ®Google Scholar
• Popler, J., Lesnick, B., Dishop, M. K., & Deterding, R. R. (2012). New coding in the international classification of diseases, ninth revision, for children's interstitial lung disease. Chest Journal, 142(3), 774–780. doi:10.1378/chest.12-0492
   PubMed Web of Science ®Google Scholar
• Schneider, M. A., & Mannell, R. C. (2006). Beacon in the storm: An exploration of the spirituality and faith of parents whose children have cancer. Issues in Comprehensive Pediatric Nursing, 29(1), 3–24. doi:10.1080/01460860500523731
   PubMedGoogle Scholar
• Soares, J. J., Deutsch, G. H., Moore, P. E., Fazili, M. F., Austin, E. D., Brown, R. F., & Young, L. R. (2013). Childhood interstitial lung diseases: An 18-year retrospective analysis. Pediatrics, 132(4), 684–691. doi:10.1542/peds.2013-1780
   PubMed Web of Science ®Google Scholar
• Szczesniak, R. D., Zou, Y., Wetzel, J. D., Krause, N., & Grossoehme, D. H. (2014). Increased congregational support for parents of children with cystic fibrosis. Journal of Religion and Health. doi:10.1007/s10943–014-9928-x
   PubMedGoogle Scholar
• Wilson, S. M., & Miles, M. S. (2001). Spirituality in African‐American mothers coping with a seriously ill infant. Journal for Specialists in Pediatric Nursing, 6(3), 116–122. doi:10.1111/j.1744-6155.2001.tb00133.x
   Google Scholar
• Womble, M. N., Labbé, E. E., & Cochran, C. R. (2013). Spirituality and personality: Understanding their relationship to health resilience. Psychological Reports, 112(3), 706–715. doi:10.2466/02.07.PR0.112.3.706-715
   PubMed Web of Science ®Google Scholar
• Young, L. R., Deutsch, G. H., Bokulic, R. E., Brody, A. S., & Nogee, L. M. (2013). A mutation in TTF1/NKX2.1 is associated with familial neuroendocrine cell hyperplasia of infancy. Chest Journal, 144(4), 1199–1206. doi:10.1378/chest.13–0811
   PubMed Web of Science ®Google Scholar