Daniel H Grossoehme1, Rhonda D Szczesniak1,2, LaCrecia L Britton3, Christopher M Siracusa1, Alexandra L Quittner4, Barbara A Chini1, Sophia M Dimitriou1, Michael Seid1,5. 1. 1 Division of Pulmonary Medicine. 2. 2 Division of Biostatistics and Epidemiology, and. 3. 3 University of Alabama Birmingham/Children's Hospital of Alabama Cystic Fibrosis Center, Birmingham, Alabama; and. 4. 4 Department of Psychology, University of Miami, Miami, Florida. 5. 5 James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Abstract
RATIONALE: Cystic fibrosis is a progressive disease requiring a complex, time-consuming treatment regimen. Nonadherence may contribute to an acceleration of the disease process. Spirituality influences some parental healthcare behaviors and medical decision-making. OBJECTIVES: We hypothesized that parents of children with cystic fibrosis, when classified into groups based on adherence rates, would share certain psychosocial and religious and/or spiritual variables distinguishing them from other adherence groups. METHODS: We conducted a multisite, prospective, observational study focused on parents of children younger than 13 years old at two cystic fibrosis center sites (Site 1, n= 83; Site 2, n = 59). Religious and/or spiritual constructs, depression, and marital adjustment were measured by using previously validated questionnaires. Determinants of adherence included parental attitude toward treatment, perceived behavioral norms, motivation, and self-efficacy. Adherence patterns were measured with the Daily Phone Diary, a validated instrument used to collect adherence data. Cluster analysis identified discrete adherence patterns, including parents' completion of more treatments than prescribed. MEASUREMENTS AND MAIN RESULTS: For airway clearance therapy, four adherence groups were identified: median adherence rates of 23%, 52%, 77%, and 120%. These four groups differed significantly for parental depression, sanctification of their child's body, and self-efficacy. Three adherence groups were identified for nebulized medications: median adherence rates of 35%, 82%, and 130%. These three groups differed significantly for sanctification of their child's body and self-efficacy. CONCLUSIONS: Our results indicated that parents in each group shared psychosocial and religious and/or spiritual factors that differentiated them. Therefore, conversations about adherence likely should be tailored to baseline adherence patterns. Development of efficacious religious and/or spiritual interventions that promote adherence by caregivers of children with cystic fibrosis may be useful.
RATIONALE: Cystic fibrosis is a progressive disease requiring a complex, time-consuming treatment regimen. Nonadherence may contribute to an acceleration of the disease process. Spirituality influences some parental healthcare behaviors and medical decision-making. OBJECTIVES: We hypothesized that parents of children with cystic fibrosis, when classified into groups based on adherence rates, would share certain psychosocial and religious and/or spiritual variables distinguishing them from other adherence groups. METHODS: We conducted a multisite, prospective, observational study focused on parents of children younger than 13 years old at two cystic fibrosis center sites (Site 1, n= 83; Site 2, n = 59). Religious and/or spiritual constructs, depression, and marital adjustment were measured by using previously validated questionnaires. Determinants of adherence included parental attitude toward treatment, perceived behavioral norms, motivation, and self-efficacy. Adherence patterns were measured with the Daily Phone Diary, a validated instrument used to collect adherence data. Cluster analysis identified discrete adherence patterns, including parents' completion of more treatments than prescribed. MEASUREMENTS AND MAIN RESULTS: For airway clearance therapy, four adherence groups were identified: median adherence rates of 23%, 52%, 77%, and 120%. These four groups differed significantly for parental depression, sanctification of their child's body, and self-efficacy. Three adherence groups were identified for nebulized medications: median adherence rates of 35%, 82%, and 130%. These three groups differed significantly for sanctification of their child's body and self-efficacy. CONCLUSIONS: Our results indicated that parents in each group shared psychosocial and religious and/or spiritual factors that differentiated them. Therefore, conversations about adherence likely should be tailored to baseline adherence patterns. Development of efficacious religious and/or spiritual interventions that promote adherence by caregivers of children with cystic fibrosis may be useful.
Authors: Alexandra L Quittner; Lutz Goldbeck; Janice Abbott; Alistair Duff; Patrick Lambrecht; Amparo Solé; Marijke M Tibosch; Agneta Bergsten Brucefors; Hasan Yüksel; Paola Catastini; Laura Blackwell; Dave Barker Journal: Thorax Date: 2014-09-21 Impact factor: 9.139
Authors: Christina M D'Angelo; Sylvie Mrug; Daniel Grossoehme; David C Schwebel; Nina Reynolds; Kimberly Guion Reynolds Journal: J Clin Psychol Med Settings Date: 2019-12
Authors: Rhonda D Szczesniak; Yuanshu Zou; Sophia M Dimitriou; Alexandra L Quittner; Daniel H Grossoehme Journal: J Health Care Chaplain Date: 2016-11-21
Authors: Rhonda D Szczesniak; Teresa Pestian; Leo L Duan; Dan Li; Sophia Stamper; Brycen Ferrara; Elizabeth Kramer; John P Clancy; Daniel Grossoehme Journal: BMC Pulm Med Date: 2020-06-18 Impact factor: 3.317