Blog: Family Connections with Pediatrics
Shared decision-making (SDM) is a set of processes where health care decisions are made through respectful collaboration between doctors, patients, and their parents or guardians. The American Academy of Pediatrics (AAP) and many other medical care groups see SDM as a key part of family-centered care. However, SDM may not be used as often as it should be. There are many reasons for this, such as:
- Doctors have not learned how to do SDM.
- There is not enough time.
- There can be an imbalance of power between the medical care team and the family.
- There is an existing lack of understanding of what SDM is and how to participate in SDM.
In this month’s Pediatrics, “Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings from a Delphi Panel”, Eaton et al (10.1542/peds.2022-057978) explore the SDM process to look at what SDM is and how it is best implemented.
How did the authors study SDM?
The authors gathered doctors, researchers, and parents to be a part of a panel that looked at and answered questions about SDM. Questions were developed by the authors based on existing SDM materials and literature. The authors organized the results and made recommendations.
What did the authors find in the study?
The processes of SDM refer to the activities, in the short and long term, involved in making decisions. For example, an initial process could be to:
- Establish a relationship with the family
- Discuss research treatment options
- Ask if the family understands the clinical issue and the decision that needs to be made.
The main findings of the study show the need to personalize this decision-making process to each family’s unique situation and preferences. Examples of ways to personalize the process can include:
- Determine information preferences- such as language, amount, type, method and with whom the information is to be shared. For example, how can the information be given in a way that is accessible, useful, and meaningful to the family?
- Discuss the role of the child and parent/guardian in the SDM process. For example, does the child want to be a part of the process? Are they old enough? Are they mature enough?
- Explore family values and what matters most to them. For example, is a family willing to discuss these topics with the rest of the care team and/or with the child?
- Discuss guidance from the medical team about the child’s care. For example, what type of information does the family want from the doctors and nurses providing the care?
The authors introduce a framework that suggests different ways to help with the SDM process. Developed based on learnings from the study, the framework aims to provide a range of strategies to help personalize the process to unique needs of the child, family and clinical situation. The framework provides guidance to be used in all types of decisions, as well as additional guidance for more complex decisions.
The study also highlights areas where the panel did not agree. For example, the panel did not agree on topics such as:
- Should “personalized” or another word replace “shared” in this process?
- How do you decide what the child’s role in the process should be?
- Should a family be asked if they want a recommendation before a doctor gives one?
What can you do with this article?
- Read all the findings and reflect on the types of decisions you have made for your child’s health. If you have had a good or not so good experience with SDM, think about sharing this article and asking to talk about it with relevant members of your child’s care team.
- If you have decisions coming up regarding the care of your child, think about using the article to start talking with your child’s doctor and care team about ways to personalize the coming decisions.
- If you partner in quality improvement or other projects with health care providers where family-centered care is a core activity or principle, share this article and suggest a group discussion.
- If you would like to learn more about the SDM process, think about reading the Clinical Report Shared Decision-Making and Children with Disabilities: Pathways to Consensus by the AAP.