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Uncertainty Management and Decision Making: Parents' Experiences During their First Visit to a Multidisciplinary
Anna M Kerr1, Nancy Grant Harrington2, Allison M Scott2
1Department of Family Medicine, Ohio University, Athens, OH, USA.
Insights
Parents navigating uncertainty in their child's vascular anomaly care often struggle with information management. They rely on multidisciplinary teams for support in making complex treatment decisions.
Area of Science:
- Pediatric healthcare
- Decision science
- Patient experience
Background:
- Multidisciplinary clinics offer comprehensive care for complex childhood conditions.
- Parental involvement is crucial in pediatric treatment decision-making.
- Uncertainty is a common challenge in managing rare and complex pediatric diseases.
Purpose of the Study:
- To explore parental decision-making experiences in the context of multidisciplinary care for pediatric vascular anomalies.
- To understand how parents manage information and uncertainty when making treatment choices for their child.
Main Methods:
- Conducted semi-structured interviews with 29 parents of children with vascular anomalies.
- Data collected after parents consulted with multiple specialists at a children's hospital.
Main Results:
- Parents employed various strategies to manage uncertainty, including seeking or avoiding information and relying on specialist support.
- Information management presented both facilitators and obstacles to effective decision-making.
- The multidisciplinary setting created an information-rich environment that posed decision-making challenges.
Conclusions:
- Multidisciplinary care for uncertain childhood conditions like vascular anomalies presents unique benefits and challenges for parental decision-making.
- Healthcare professionals must recognize and support parents' evolving information and decision-making needs.
- Addressing barriers to parental autonomy is essential for effective shared decision-making.
Purpose:
To gain a better understanding of parental decision making in situations of uncertainty and multidisciplinary care, we explored parents' decision-making experiences while seeking care for their child's vascular anomaly at a multidisciplinary clinic at a large Midwestern children's hospital.
Design And Methods:
We collected data using semi-structured interviews with 29 parents after they met with multiple specialists for the care of their child's vascular anomaly.
Results:
The findings revealed parents' attempts to manage decision-related uncertainty about their child's vascular anomaly included seeking information, avoiding information, and seeking support from the specialists. Parents described how information management both facilitated and obstructed decision making.
Conclusions:
Overall, the study reveals several benefits and challenges of making decisions about the management of uncertain childhood conditions, like vascular anomalies, in a multidisciplinary context. The information-rich environment produces information-management dilemmas that challenge parents' decision making efforts. Therefore, parents relied on the support of the team of specialists to make decisions about their child's treatment.
Practice Implications:
The study offers practical implications concerning the barriers of autonomy in decision making. Healthcare professionals should acknowledge the potential for parents' to have shifting information and decision-making goals and preferences, and should explicitly support parents throughout the decision-making process.
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