We were Chosen as a Family: Parents’ Evolving Use of Religion when Their Child has Cystic Fibrosis

Abstract

Parental coping with new CF diagnoses often includes religion; however, little is known about how the use of religion changes over time. Longitudinal grounded theory method, in which parents were interviewed twice the 2 years after their child’s diagnosis, was used. Parents constructed the meaning that parenting a child with CF is their vocation, in accordance with “God’s plan.” A shift from isolation to an outward focus and reentry into the community was clear. The use of faith evolved over time and continues to be a source of support and hope for parents. Clinical implications of parental religion are discussed.

Increased Congregational Support for Parents of Children with Cystic Fibrosis

“…The increased odds that parents of children with CF would experience higher levels of thinking of how their life was part of a larger life force/spirit, which is a benevolent religious reappraisal, is consistent with how parents in other studies have positively reframed their experience of parenting a child with medical issues (Dollahite, Marks, & Olson, 1997; Grossoehme, et al, 2011). The decreased odds that parents of children with CF would report their experience as collaborative religious coping (Working together with God) and increased odds of using self-directed religious coping (Trying to deal with this without God’s help) is not surprising given the level of time and skill required to prepare for, administer or supervise, and clean up from, the daily treatment routines.…”

“…To the extent that receiving emotional support from members is correlated with receiving spiritual support from them also, it could be helpful to equip members to talk about illness and disease in religious or spiritual language. Parents of children with chronic conditions have been shown to reframe their experience in religious terms (Dollahite, et al, 1997; Grossoehme, et al, 2011). Therefore, facilitating the ability of adults to provide spiritual support may enable increased ability or likelihood of providing emotional support.…”

“…Religious coping has been shown to be an important source of parental coping during the first two years after a child’s CF diagnosis (Grossoehme et al, 2010; Grossoehme, Ragsdale, Wooldridge, Cotton, & Seid, 2010; Grossoehme, Ragsdale, Snow, & Seid, 2011). Parents reframed their experience in religious terms, moving through feeling “devastated” to a task that “we can handle” and, after two years, to understand parenting a child with CF as a vocation for which “we were chosen.” Pargament and colleagues terms such reframing of experience as “benevolent religious reappraisal” (Pargament, Koenig, & Perez, 2000).…”

Parent routines for managing cystic fibrosis in children

“…The semi-structured interview was developed based on previous research (Ekedahl & Wengstrom, 2007; Grossoehme, Ragsdale, Snow, & Seid, 2011). The interview guide was intended to collect data on general parental coping and spiritual coping, as well as parents' perceptions of how spirituality might relate to their child's disease or treatment regimen.…”

“…All authors had experience in coding narrative data and CF disease management (Filigno et al, 2012; Grossoehme, et al, 2010; Grossoehme et al, 2012; Grossoehme, et al, 2011). Interview transcripts had previously been entered into NVivo 10.0, a qualitative analysis software that was used in the primary study to organize and store the data (“NVivo qualitative data analysis software,” 2012).…”