Families of children with disabilities face many decisions about medical treatment. The nature and complexity of these decisions can vary widely and may involve diagnosis, evaluation, treatment, care management, and support services. Discussing and coming to a consensus on these decisions can be stressful for the child, family, and clinicians involved and it is important that the voices of all stakeholders are heard. Often in the discussion of treatment plans, there are gaps between the family's values, priorities, and understanding of perceived "best choices" and those of the clinician.
To help guide clinicians in successfully approaching these discussions, the American Academy of Pediatrics has issued a new clinical report, "Shared Decision-Making and Children with Disabilities: Pathways to Consensus," in the June 2017 Pediatrics (published online May 29).
The key features of shared decision-making include ensuring that information is exchanged in both directions, that all parties are aware of treatment options, and that all bring their knowledge and values-related priorities equally into the decision-making process.
The authors note that it is best to start early with developing consensus about routine decisions, so that in the event of needing to make more significant decisions, a framework has already been established. They also note that it is important to include children in these discussions and provide them with information (based on developmental age) about their condition. Doing so can help them gain understanding of their condition and treatment options, reduce fear, enhance self-confidence as well as acceptance, and improve collaboration with treatment decisions.