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.

Parents of children diagnosed with cystic fibrosis described it as “devastating.” Given religion’s importance to many Americans, parents may utilize religious coping. Relatively little is known about parents’ use of religious coping to handle their child’s illness. Interviews with 15 parents about their use of religion in the year following their child’s cystic fibrosis diagnosis were coded for religious coping styles. Sixteen styles were identified. Positive religious coping styles were more frequent than negative styles (previously associated with poorer health outcomes), and occurred more frequently than in other studies. Religious coping styles used to make meaning, gain control, or seek comfort/intimacy with God were equally prevalent. The most common styles were: Pleading, Collaboration, Benevolent Religious Reappraisals, and Seeking Spiritual Support. Parents described active rather than passive coping styles. Religious coping involving religious others was rare. Clinical attention to negative religious coping may prevent it becoming chronic and negatively affecting health.

A limited number of studies address parental faith and its relationship to their children’s health. Using cystic fibrosis as a disease exemplar in which religion/spirituality have been shown to play a role and parental health behaviors (adherence to their child’s daily recommended home treatments) are important, this study explored whether parents with different levels of adherence would describe use of faith differently. Twenty-five interviews were completed and analyzed using grounded theory methodology. Some parents described no relationship between faith and treatment adherence. However, of those who did, higher-adherence parents believed God empowered them to care for their child and they used prayer to change themselves, while lower-adherence parents described trusting God to care for their child and used prayer to change God. Clinical implications for chaplains’ differential engagement with parents are presented.

Despite the intrinsic role religious/spiritual (hereafter, R/S) beliefs have in patient clinical decision-making and crisis coping, there is little research exploring the relationship that exists between clergy (professionals who provide R/S counsel and guidance) and genetic counseling patients. This qualitative, exploratory study was designed to explore Protestant clergy (N=8) perceptions of and experience with genetics-related issues. Data analysis revealed that a wide range of R/S perceptions regarding genetics-related issues exist within Protestantism, Protestant clergy have a basic understanding of genetic testing and conditions, and while directive counseling is inherent to Protestant clergy counseling, there appears to exist two opposing styles: unbiased and biased. Based on this information, there are two main implications for genetic counseling clinical practice. First, R/S assessments need to be increasingly implemented into genetic counseling sessions, so that the psychosocial needs of patients with specific R/S beliefs can be identified and addressed. An increase in R/S assessments may be accomplished by increased exposure in genetic counselor training, continuing education opportunities, and by establishing relationships with board-certified, professional chaplains. Second, genetic counselors can influence the genetic education and experience of clergy by raising awareness within their own R/S assemblies. Doing so can also serve to further educate genetic counselors in the R/S beliefs of their own traditions, thus increasing sensitivity, empathy and the quality of care provided.

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