Blog: Family Connections with Pediatrics
This month, Pediatrics features a Family Partnerships article entitled, “Shared Decision Making for Juvenile Scoliosis” that is written jointly by a daughter, mother, orthopedic surgeon, and physical therapist (10.1542/peds.2021-055709). The authors invite us into the examining and imaging rooms to share the fear, anger, confusion, and conversations at first diagnosis as Ellie grows and learns to cope with scoliosis. Ellie’s mom shares that one way that they empowered Ellie as she adjusted to her life with scoliosis was to consult a child psychologist who coached her to “shine her flashlight” on what helps and matters most to her. Ellie’s voice shines bright in this article as she reflects on her feelings, challenges, successes, and her life.
What is in the article?
Juvenile onset scoliosis is a type of curvature of the spine that occurs prior to age 10 and remains a treatment dilemma. The team shares how they worked together to create and modify care plans for Ellie, for example, when evidence for treatment was not clear or Ellie’s physical needs changed. Through a series of reflections and sharing of strategies, the authors describe their work together as “flexible and resilient” in its approach.
The article looks at aspects of the approach to Ellie’s care that required flexibility and built resilience in Ellie, her family, and her care team, such as:
- the role of a parent
- how to introduce juvenile scoliosis to Ellie’s peers
- body image
- balancing medical interventions with support for mental health and wellbeing.
The authors discuss times when the care plan needed a change of course because a strategy wasn’t working and noted that the way forward was sometimes driven less by the published literature and more by careful attention to Ellie’s needs.
What can you do with this article?
- If your child or youth with a special health care need is at an age where you are working on “shining a light” on their own voice, care, and needs, share the article with them. It may give ideas of how they can become a partner in their own health care.
- Read and reflect. Even if your child does not have juvenile scoliosis, there is much about parenting, shared decision-making, and teamwork that you can likely relate to, no matter your child’s diagnosis.
- Share this with your child’s doctor (primary care or specialists) or other members of the care team. You and your child (together or separately) can use it as a way to bring up a topic or discuss flexible and resilient approaches to care for your child and other family members experiencing a complex health situation
