Editor’s Note: Jenny is the mother of two children with special healthcare needs and a Patient & Family Advisor at her local children’s hospital. In addition to her lived experience, Jenny calls upon her professional experience as a social worker to help her write blogs from her home in Wisconsin. – Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
A few months ago, I had the privilege of helping a friend facilitate a support group for parents of children with medical complexity (CMC). While I do not have this lived experience myself, I was there to create a safe space and ask questions so that the participants could share their stories, process their grief, build resiliency, and overcome isolation.
As the weeks went on, I noticed a trend. Each person in this group identified as a caregiver of a child with complex medical needs, but they played several other roles as well. One parent spoke of being a researcher, an investigator, and a detective trying to find answers for her young child. Another felt like a cheerleader, an event planner, and a problem-solver as she supported her teenager to live a meaningful life. Still another referred to herself as a full-time care coordinator, chaos controller, and team captain.
As the group came to an end, the participants also shared the roles they desperately wished they could play, if not for the barriers and biases they face in the health care system—roles like partner, colleague, and collaborator. This month’s Pediatrics speaks to this hope in an article entitled “Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC” (10.1542/peds.2024-065884).
What is an online collaborative care plan?
A care plan for CMC typically includes the child’s medical history, medication lists, and goals for care. These plans are often managed by the healthcare team with very little input from the caregivers. In this article, authors share a study in which parents of CMC and their care team contributed to an online, patient-facing platform called Connecting2gether. Using this tool, families had the ability to add, edit, and delete information to their child’s care plan in real time.
What did the authors learn about using online collaborative care plans?
After using this platform for six months, the authors interviewed caregivers and care team members to learn about their experiences. They discovered that using an online collaborative care plan:
- Promotes shared understanding
- Provides more consistent care across venues
- Increases autonomy and accessibility for family caregivers
- Builds trust and responsibility while navigating uncharted roles
- Creates a balance in power between families and healthcare teams
- Fosters honor and respect of all contributors
The article also shared some aspects of collaborative care planning that still need to be figured out:
- How to verify the accuracy of information added by caregivers
- How to highlight medical expertise and best practices presented by the medical team
- How to include input from community providers (i.e., therapists, teachers, etc.)
- How to ensure consistency between care planning and regular electronic medical records
Despite these unknowns, using an online collaborative care plan allowed everybody caring for the CMC to be on the same page. This brought more peace of mind for families and more opportunities for patient- and family-centered care that truly values authentic partnership and equal collaboration.
What can you do with this article?
- Share this article with your child’s care team. Even if they are not ready for a fully collaborative model for care planning, work together to find smaller places for collaboration. Where could you function as co-creators and partners in shaping your child’s care plan?
- If your hospital has a complex care program or something similar, share this article with the clinic manager. Have an honest conversation about your priorities and preferences when it comes to collaboration. This is not the same for every family! What roles do you want to play?
- If you are part of the advisory board at your hospital, advocate for the use of something like the Connecting2gether platform. Refer to this article for helpful suggestions for how to make a collaborative care planning system feasible for both caregivers and care teams.