Magazine article The Exceptional Parent

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Health Care Needs: Parent Partners

Magazine article The Exceptional Parent

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Health Care Needs: Parent Partners

Article excerpt

Baby Anjali was a new patient on the practice's panel. The care coordinator added her name to the list of patients for discussion at the pediatrician's weekly case conference meetings.

Prior to the meeting, the care coordinator notified one of the parent partners in the practice about a new premature baby to be discussed at the case conference. The parent partner, a mother to a now eight-year-old son, knew what it was like when her son spent two weeks in the Neonatal Intensive Care Unit (NICU) after being born prematurely. She shared her concerns with the care coordinator about Anjali and her family to facilitate discussion at the meeting. Anajli's condition was complex and the parent partner knew from her own experience the practice could help this family cope with the many people coming into their home and any feelings of frustration. Moreover, she recalled how unprepared she and her husband felt when they took their son home from the NICU eight years earlier . The parent partner remembered speaking to another parent with a premature infant eight years ago and the invaluable support she provided.

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The case conference got started after the pediatrician finished seeing the last patient. The care coordinator discussed some of the parent partner's suggestions for things to discuss when Amita and Samir took Anjali in for her weight check the following week. They agreed the questions provided some wonderful thoughts to include in their discussion with the family at the visit.

Baby Anjali, Amita, and Samir arrived on time to the pediatrician's office the following Wednesday. While they were nervous about driving to the office, they were even more nervous to see if Anjali was gaining weight. The nurse took them back to the exam room where they carefully undressed Anjali and placed her on the scale. Terrific! Their little Anjali had gained 8 ounces since her discharge from the hospital last week!

The pediatrician and care coordinator met them in the exam room to go over Anjali's growth and talk about the family's first week at home. Amita and Samir began to express their concerns about their baby and how to cope when Samir returned to work. Amita mentioned she made appointments for seven different specialists Anjali needed to see in the next few weeks but was worried how she would manage Anjali by herself in the car. Amita told the care coordinator that her mother was coming from India to help her with Anjali but would not be arriving for another two weeks.

The care coordinator felt Amita was a caring and competent mother but knew she was concerned about all of her responsibilities. She spoke to Amita and Samir about talking to another parent from the practice who had a premature infant. This parent was working with the practice to support parents like Amita and Samir by both talking to them about their own experiences but also linking them to community resources. The care coordinator mentioned the role of this parent was called a "parent partner." Engaging and working with parent partners was one aspect of the practice's participation in the medical home program. She went on to explain all the benefits of having a parent partner in the practice. Parent partners expanded their knowledge and skills about families' needs and priorities. Some parent partners helped the practice develop folders to give to parents about the scope of services provided by parent partners as well as phone numbers for services Anjali may eventually need.

Amita and Samir were very excited about talking to another parent who had been through what they are experiencing now. They agreed to provide their phone number to the care coordinator so the parent partner could contact them. They left the office wondering how soon she would call!

On the way home from the doctor's office, Amita read to Samir from the folder as he drove. She relayed the history of how the medical home initiative got started and how parent partners are a critical piece in the practice's approach to family centered care. …

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