Tag

pediatrics | Danny van Leeuwen Health Hats

Teachable Spirit. Patient Family Advisors.

By | Advocate, ePatient, Podcasts, Researcher | No Comments

Careful what you wish for. Health equity and participatory medicine depend on the widespread meaningful use of patient family advisors. The trickle of such advisors should be a stream. Unfortunately, even if the supply could meet demand, health care administrators, researchers, entrepreneurs lack skill in making good use of patient family advisors. Libby Hoy leads Patient Family-Centered Care Partners, a small organization with a large vision for improving the quality, safety, and experience of healthcare through the development of authentic partnerships from the bedside caregiving relationship to the boardroom.

Read More

Time. I Need Some More

By | Advocate, Clinician, Podcasts | No Comments

A conversation with Dr. Tanilla Brown, a pediatrician and Internal Medicine doc who thinks about the challenges of enough time with patients, family-focused care, and the lifespan of transition. 

Welcome to this eleventh episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

Read More

I’m not drug-seeking. I’m in pain.

By | Advocate, Caregiver, ePatient, Podcasts | No Comments

This episode concludes the conversations with Fatima Muhammed-Ighile, a mother with two young children, and her mother, Esosa, navigating Sickle Cell Disease. These conversations have been different as Fatima and I are friends. We are familiar with each other’s families. We have shared some of life’s milestones. In this episode, Fatima finds that she’s turning into her mother and describes her experiences as a young mother of color seeking pain relief from a sickle cell crisis as the opiate crisis heats up. Hang on.

Welcome to this tenth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

Read More

Good listeners. Good conclusions.

By | Advocate, Caregiver, ePatient, Podcasts | One Comment

Esosa Ighile raising young women with Sickle Cell Disease to be commanders of their own ship. The whole family feels the pain of their pain. A fight for health equity. Welcome to this ninth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

Read More

Living a Happy, Full Life

By | Advocate, ePatient, Podcasts | No Comments

Fatima Muhammed-Ighile learned to advocate for herself and has begun to advocate for others with Sickle Cell Disease. People who have regular lives and struggles and hopes and dreams also have sickle cell disease and are just trying to live a happy life, a happy full life. That’s all. Welcome to this eighth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

Read More

What is Today, Isn’t Necessarily Tomorrow

By | Advocate, ePatient, Podcasts | No Comments

Amy Gleason is Morgan Gleason’s mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

Read More