By: Pattie Archuleta
Family Health Information Center Project Coordinator and Medical Home Parent Partner Program Coordinator, Parents' Place of Maryland
As part of a Health Resources and Services Administration-funded grant for state autism spectrum disorders and other developmental disabilities implementation, the Parents' Place of Maryland and Maryland's Title V Children and Youth with Special Health Care Needs program are implementing a "Screening and Beyond" quality improvement (QI) learning collaboration with pediatric practices across the state. The goal is to reduce barriers to screening, referral and diagnostic services and to increase access to medical homes that coordinate care with pediatric subspecialties. As part of this process, parent partners (veteran caregivers of children and youth with special health care needs) are included as equal partners on the QI team. They work in pediatric practices to provide follow-up and resources to families and to provide input as part of the QI process.
In this article, two parent partners share their experiences as Medical Home Parent Partners and demonstrate the value of including parents in these projects. Dianna Speir works in a smaller rural practice and Shannon Svikhart works in two larger urban practices.
What was your role as a parent partner in implementing the QI project in the practice?
Dianna Speir: I was active in all phases of the QI process: attending team meetings, developing PDSA [Plan-Do-Study-Act] cycles and exploring strategies for engaging families. In our protocol, the doctor would have an encounter with the patient and invite me in to consult with the family to help create a care plan. As a team, we would review screening results or specialty evaluations and develop plans. I would also assess the family's need for additional support, such as assistance with school issues, insurance concerns or follow-up with subspecialists or early intervention. I often acted as a go-between from doctor to staff to patient, coordinating what needed to get done for the more complex patients.
Shannon Svikhart: I was also active in all phases of the QI process, but my practices had fewer formal meetings since our teams were so large, and it was difficult to schedule time together. I spoke with the lead physicians every time I was in their practices, once or twice a week, and we would brainstorm ideas for PDSA cycles or discuss challenges to the process. In implementing new office procedures or reaching out to our target population, it seemed that there were unexpected PDSA cycles along the way. For instance, families could be difficult to reach by phone or not responsive to email. We really had to reframe the script that was being used to approach these families. In the end, it was far more effective to meet with families in person.
What did you find successful about the process?
Speir: By meeting with a family in-person, I was able to establish a rapport that allowed them to feel more comfortable sharing information regarding their specific challenges and needs that they might not share with their doctor. I could provide them with the resources they needed and give the doctor more accurate information about the family.
Svikhart : Working with a parent partner had a big impact on the families as well as the practices. The families got higher levels of care from their doctor at a time when they needed it the most. The doctors felt that having me in the office elevated their understanding of families of children with special health care needs, resulting in more compassion and accountability toward these families. The doctors really appreciate the increased level of family engagement.
What was most challenging?
Speir : Some of the office staff in my practice didn't see the value in having a parent partner right away. There was a shift in the office culture over time.
Svikhart : One doctor became overzealous, skipping protocols, pulling me into exams rooms without proper consent and referral – I definitely needed to rein that in.
What did you gain or value through your participation?
Speir : It feels good to help families in such a meaningful way. I wish there had been a parent partner available in the early years of my son's diagnosis -- someone to provide the type of support that we offer.
Svikhart : At the beginning of this project, I spoke with my practices about the potential benefit of this model. As it turns out, the impact of this enhanced care has been far greater than any of us anticipated.
What value do you think parent partners can add to similar QI work?
Speir : We help improve outcomes for the children when we support the family. Parent partners offer families time – time to listen, time to process, time to vent, time to strategize, time to make a plan. The families I work with are often shocked that someone is there to help them.
Svikhart : We offer the QI team firsthand knowledge of what it's like to have this type of family[KT2] [with a child with special health care needs, including ASD/DD]. We've walked that walk, and we can help these families in ways no one else can. We approach it from a different angle, knowing how challenging it can be. It's as if they're stranded on a little island, and we're rowing out to let them know they're not alone.
To learn more about Maryland's project, click here.