This finding contrasts with our prior qualitative work, likely due to the larger, more diverse sample and reflects the importance of following qualitative work with quantitative studies

This finding contrasts with our prior qualitative work, likely due to the larger, more diverse sample and reflects the importance of following qualitative work with quantitative studies. influential decision factors were very or extremely important to the majority of participants with factors related to long-term side effects, treatment effectiveness, and disease effect being most important. Conclusions This study identifies parents info needs and influential factors in treatment decision making. Results suggest that future work should be aimed at helping family members weigh risks and benefits, such as through decision support interventions, as well as developing opportunities to include people beyond the family and physician in the decision-making process. Electronic supplementary material The online version of this article (doi:10.1186/s12969-016-0113-5) contains supplementary material, which is available to authorized users. Background Shared decision making is a key part of family-centered care [1]. In order to participate in decision making, parents need to be educated and prepared to weigh the risks and benefits of treatment options. In the establishing of chronic conditions, parents often lack info and may later on reconsider hard treatment decisions [2C6]. Decisions about high-risk or lengthy treatments may be particularly demanding and demanding for parents [7, 8]. For families of children and adolescents with juvenile idiopathic arthritis (JIA) or inflammatory bowel disease (IBD), our prior, qualitative study found that the decision to start TNF- inhibitors can be particularly demanding [7, 9, 10] due to the need to balance disease severity with side-effect risks [11C13]. As such, parents struggle to weigh the pros and negatives. This struggle continues after the decision is made, as they continue to worry about the potential effects of their decision. In order to help them make this demanding decision, parents Mubritinib (TAK 165) statement seeking info from diverse sources, including the internet and sociable contacts, [7] though the reasons they seek this information are unfamiliar. Our prior study further suggested that the decision process, including the info demands and decision-making influences, may differ between parents of children with JIA and parents of children with IBD [7, 10]. These qualitative studies provided insight into parents decision-making experiences Mubritinib (TAK 165) but were not intended to become generalizable. Moving forward we wanted to ensure that future interventions to address parents decision-making needs and improve their encounter are designed with a full understanding of the Mubritinib (TAK 165) influential factors in parents decisions. Although others have assessed parents info needs related to specific diseases [14C17] and general actions have been used to study the parent-provider connection, [18C20] there were no existing actions or studies that matched our desire to be able to describe the details of parents decision-making about TNF- inhibitors. Methods Survey development Survey questions were developed based on our prior qualitative interviews with family members who had made decisions about treatment with TNF- inhibitors [7, 10] and founded models of shared Rabbit Polyclonal to IL4 decision making [21C23]. Specifically we wanted to develop questions that captured elements of the decision-making encounter that Mubritinib (TAK 165) occurred both within and outside of the medical encounter. We generated a large pool of candidate questions (Value*<0.001). Conversation Parents info needs and their influential decision factors are key components of the process they use to make decisions about treatment with TNF- inhibitors. This survey, designed to assess info needs and influential decision factors for this specific decision, matches existing actions of the decision process that Mubritinib (TAK 165) tend to focus narrowly within the connection between patient and physician [28C30]. Medical decision making has often been conceptualized as involving the patient and the healthcare provider or, in the case of pediatrics, a triad of the patient, parent and provider [23]. Our results suggest that such a model is an oversimplification. Parents seek treatment info from a diversity.