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This study is funded by NIH/NICHD K23HD062642, Dr. Grossoehme's research career development award (under the primary mentorship of Michael Seid, PhD) and has been extended into a longitudinal study with funding from the Cystic Fibrosis Foundation. Parents of children who have CF, and were between birth and 13 years old when the study started from the CF Centers at Cincinnati Children’s Hospital Medical Center and Alabama Children’s Hospital/University of Alabama were eligible to participate. The qualitative arm of this study includes semi-structured interviews with parents about facilitators and barriers to treatment adherence and the role Using the Theory of Reasoned Action as a conceptual model, this cross-sectional quantitative study collects data from parents of children birth-13 years old who have cystic fibrosis on religious coping, body sanctification, illness attribution, depression, marital adjustment and adherence motivation, attitudes, behavioral norms, self-efficacy, intentions and actual adherence behaviors. Data were collected in 2011/2012 and again 2 years later.
Why the study is being conducted: Religion/spirituality is rated as important in the lives of many in the US and is an under-studied area in healthcare behavior and decision-making. Our preliminary research indicates that a significant proportion of parents are influenced by their beliefs when it comes to their child’s health. This study is designed to “map the terrain” and generate hypotheses for future intervention testing.
NIH/NICHD K23HD062642 (PI: Grossoehme)
CF Foundation Therapeutics grant GROSSO12A0 (PI: Grossoehme)
Why this study is being conducted: Despite existing knowledge of the importance of social networks (SN) and constructed meaning to health, they have not been integrated into adherence research. Adolescents with chronic diseases are the least adherent to care plans. Previous studies have demonstrated the relationship between SN and chronic illness social support and health outcomes. Important SN characteristics include how many people one is connected to (degree) and the emotional content of what is communicated (valence). Adherence-promoting interventions lacking a social component have less impact than those which do. And, while Motivational Interviewing (MI) interventions have been shown to be efficacious in other diseases, it is not clear whether and under what conditions such meaning-based interventions will be acceptable or efficacious in the context of a progressive, life-shortening disease such as CF.
Our long-term goal is to improve treatment adherence in pediatric patients with chronic disease treatments. The overall objective of this application is to improve treatment adherence by increasing treatment motivation using an MI intervention enhanced by including SN and meaning. Our central hypothesis is that an enhanced MI intervention will be associated with increased motivation and treatment adherence. The rationale for the proposed research is that without understanding and accounting for the roles of SN and meaning, adherence interventions will have suboptimal impact. Identify SN characteristics and CF-specific meaning that relate to treatment adherence.
Place Outcomes Award 2012-2014, James M. Anderson Center for Health System Excellence, Cincinnati Children’s Hospital Medical Center
Why this study is being conducted: While the vast majority of persons continue to be diagnosed with CF as infants or children, a sizeable minority of patients are diagnosed in adulthood, often after a long history of sub-acute symptoms. As of 2000, approximately 8% of persons with CF were diagnosed after age 18 years (13). It has been suggested that these individuals have a very different have compared to the majority of CF adults who were diagnosed as children (13).
Based on these results in parents of children diagnosed with CF during childhood, the aims of this hypothesis-general study was to determine whether adults diagnosed with CF after age 18 years would relate their spirituality with their CF; and to determine whether they would construct a different spiritual meaning of their experience of CF than adults whose children had recently been diagnosed with CF.
This study was partially funded by the Cystic Fibrosis Foundation, Meritt Fund, Adult CF Center, University of Cincinnati Academic Health Center, NIH/NICHD K23HD062642 (PI: Grossoehme) and NIH/NICHD K23HD052639 (PI: Cotton).
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