Document Detail

Parents' information needs in tumor necrosis factor-α inhibitor treatment decisions.
MedLine Citation:
PMID:  23059648     Owner:  NLM     Status:  MEDLINE    
OBJECTIVE: The aim of the study was to describe parents' experiences and the information used when making decisions about tumor necrosis factor-α inhibitor (TNFαi) treatment.
METHODS: We interviewed parents of children with Crohn disease (CD) or juvenile idiopathic arthritis who had experience deciding about TNFαi treatment. Interview questions focused on information used to make decisions and factors that influenced decision making. We used thematic analysis for all coding and analysis. Coding structure was developed by a multidisciplinary team review of the initial interviews. Two coders then coded the remaining interviews, compared coding, and resolved disagreements through discussion. Data were analyzed by thematic grouping and then compared between diseases.
RESULTS: We interviewed 35 parents. For nearly all parents the decision about TNFαi treatment was the most challenging medical decision they had made; however, parents of children with CD experienced more stress and anxiety than did other parents. Both groups of parents sought information from multiple sources including health care providers, the Internet, and social contacts. They looked for information related to treatment effectiveness, adverse effects, and other individuals' treatment experiences. In CD, information was used to help make the decision, whereas in juvenile idiopathic arthritis it was used to confirm the decision.
CONCLUSIONS: The decision-making experience, and associated information seeking, leaves some parents with long-lasting concerns and worry about TNFαi treatment. Providing parents with structured decision-making support may lead to more effective and efficient decision making, decreased psychosocial distress, and, ultimately, improved outcomes for their children.
Ellen A Lipstein; Daniel J Lovell; Lee A Denson; David W Moser; Shehzad A Saeed; Cassandra M Dodds; Maria T Britto
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Publication Detail:
Type:  Comparative Study; Journal Article    
Journal Detail:
Title:  Journal of pediatric gastroenterology and nutrition     Volume:  56     ISSN:  1536-4801     ISO Abbreviation:  J. Pediatr. Gastroenterol. Nutr.     Publication Date:  2013 Mar 
Date Detail:
Created Date:  2013-02-26     Completed Date:  2013-08-27     Revised Date:  2013-10-09    
Medline Journal Info:
Nlm Unique ID:  8211545     Medline TA:  J Pediatr Gastroenterol Nutr     Country:  United States    
Other Details:
Languages:  eng     Pagination:  244-50     Citation Subset:  IM    
Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
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MeSH Terms
Anti-Inflammatory Agents, Non-Steroidal / adverse effects,  therapeutic use
Antirheumatic Agents / adverse effects,  therapeutic use
Arthritis, Juvenile Rheumatoid / drug therapy*
Child, Preschool
Crohn Disease / drug therapy*
Decision Making*
Hospitals, Pediatric
Immunosuppressive Agents / adverse effects,  therapeutic use
Information Seeking Behavior
Needs Assessment
Parents / education*
Patient Education as Topic*
Patient Participation*
Tumor Necrosis Factor-alpha / antagonists & inhibitors*
Grant Support
Reg. No./Substance:
0/Anti-Inflammatory Agents, Non-Steroidal; 0/Antirheumatic Agents; 0/Immunosuppressive Agents; 0/Tumor Necrosis Factor-alpha
Comment In:
J Pediatr Gastroenterol Nutr. 2013 Sep;57(3):267-8   [PMID:  23783009 ]

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine

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