We Can Handle This: Parents' Use of Religion in the First Year Following Their Child's Diagnosis with Cystic Fibrosis

Abstract

The diagnosis of a child’s life-shortening disease leads many American parents to utilize religious beliefs. Models relating religious constructs to health have been proposed. Still lacking are inductive models based on parent experience. The specific aims of this study were: 1. develop a grounded theory of parental use of religion in the year after diagnosis; 2. describe whether parents understand a relationship between their religious beliefs and their follow-through with their child’s at-home treatment regimen. Fifteen parent interviews were analyzed using grounded theory method. Parents used religion to make meaning of their child’s cystic fibrosis (CF) diagnosis. Parents imagined God as active, benevolent, and interventionist; found hope in their beliefs; felt supported by God; and related religion to their motivation to adhere to their child’s treatment plan. Religious beliefs are clinically significant in working with many parents of children recently diagnosed with CF. Interventions that improve adherence to treatment may be enhanced by including religious aspects.

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

“…One dimension of religion is called “religious coping,” which is defined as, “the search for significance, in ways related to the sacred, in times of stress” (Pargament 1997). Religious coping is one form of coping previously reported by parents of children with chronic diseases, including CF (Abbott et al 2001; Tarakeshwar and Pargament 2001; Grossoehme et al 2008, 2009). Pargament, who initially described religious coping, names three broad goals that people use in their search for significance: to control/problem-solve, to seek comfort/intimacy, and to make meaning (Pargament 1997).…”

The Role of Professional Chaplains on Pediatric Palliative Care Teams: Perspectives from Physicians and Chaplains

“…[1][2][3][4][5][6][7][8][9][10][11] Research also suggests that childrens' [12][13][14] and parents' [15][16][17][18][19] spirituality is integral to coping with serious or terminal illness. While research and clinical practice guidelines affirm the importance of spiritual care in PPC little is known about how PPC programs meet the spiritual needs of their patients and families.…”

Adherence Determinants in Cystic Fibrosis: Cluster Analysis of Parental Psychosocial, Religious, and/or Spiritual Factors

“…Following Hill and colleagues, spirituality is defined herein as, "feelings, thoughts, experiences, and behaviors which arise from a search for the sacred," and religion is distinguished by its communal nature by adding to the definition "the means and methods (e.g., rituals or prescribed behaviors) of the search receive validation and support from within an identifiable group of people" (9). R/S has been related to treatment adherence in other populations (10)(11)(12)(13), and parents of children with CF have described a relationship between their spiritual beliefs and treatment adherence (14).…”