Has your child had an experience that helped change your pediatrician’s practice? Have you advocated for changes at your local hospital after a particularly bad or particularly good visit? Does your pediatrician have excellent online resources that have saved you panic at three a.m.? Have you identified any “gaps” in your caregiver’s knowledge of a particular medical condition, or even social issues that affect medical care?
If so, now you can help doctors learn from your family’s experience.
Pediatrics, the journal of the American Academy of Pediatrics, is already a useful resource for parents because of its clear language and easy-to-follow format. Now Pediatrics is making even more connections between the academic and parenting worlds by asking for parents’ stories.
The new section, Family Partnerships, is calling for submissions that “reflect the joint perspective of patients, families, and health care professionals taking care of the family or child.”
Two previously published Family Partnerships articles were co-authored by parents and doctors who turned personal tragedy into new knowledge and even newer hospital programs.
In one Family Partnerships article, a mother, a pediatrician, and a neurologist share how a child’s death from Sudden Unexpected Death in Epilepsy Persons (SUDEP) has changed their medical practices.
Before four-year-old Henry’s death from SUDEP, his pediatrician had never heard of the condition. Even Henry’s neurologist, who was treating him for epilepsy, did not understand that SUDEP could affect kids without additional medical complications. As a result of Henry’s death, these physicians have changed their medical practices, both to better prepare parents for the possibility of SUDEP and to help prevent it.
Another Family Partnerships article describes how a hospital created a new program to resolve issues raised by one dedicated parent.
After two-year-old Declan’s death from a complication of an undiagnosed genetic disease, his mother reviewed her own detailed records of his visits with 10 specialists and identified the various missed opportunities his doctors had to make the correct diagnosis. She advocated for a “medical quarterback” at the hospital, who would coordinate the care for all patients with undiagnosed complex medical conditions. Wake Forest Baptist Health now has that quarterback and more: the Declan Donoghue Collaborative Care Program began in April 2011.
Although the above examples stemmed from two families’ personal tragedies, submissions to the Family Partnerships section can cover any topic. Suggested topics for Family Partnerships articles include “shared decision-making, use of the Internet or other technologies to improve care, family-centered rounds, health care disparities, or issues related to medical education.”
The journal editors stress that these are only examples, and they will consider any manuscript as long as it includes multiple perspectives from families and medical professionals, and uses personal experience to make a broader generalization or argument about pediatric care. Submissions can also include the perspectives of the patients themselves, if those patients are old enough to communicate their own experiences.
The submissions should not be personal narratives about what happened in a particular child’s case. Instead, they should be broader arguments about how your experiences could affect how healthcare providers improve patient care.
Read the Family Partnerships submission guidelines for more details. If you have questions about a possible article for Family Partnerships, contact Pediatrics’ editor-in-chief Lewis First at [email protected]