Why am I passionate about this?
Life caught me by surprise when our youngest son was born with a birth defect that launched our family into the world of surgeries, and treatments. After experiencing the management of chronic care for our child firsthand, I realized how important it is to share personal stories and experiences. It enables empathy and a deeper understanding and appreciation of what patients and families go through. Autobiographical accounts of patients and families are still very limited. We need more people to come forward and share their own patient/family experiences in order to promote the betterment of healthcare and healing through relating with others and learning from others’ experiences.
Devesh's book list on patient/family experience in healthcare
Why did Devesh love this book?
This book is near and dear to me because of the topic it is based on. Anorectal malformation is a rare congenital defect that affects one in 5000 babies born. The book does a great job of bringing to light the real-life stories and experiences of patients and their families as they learn to navigate the healthcare system while aiming for the best outcome for their babies. The book gives a platform for raising awareness of birth defects such as anorectal malformations and tries to overcome the stigma associated with them. The book is a great compilation of stories of patients with anorectal malformations and serves as a great resource for other patients faced with a similar diagnosis.
1 author picked Rare and Resilient as one of their favorite books, and they share why you should read it.
This book describes with raw honesty and deep emotion the journeys that families go on when their child is born with an Imperforate Anus (IA) also known as Anorectal Malformation (ARM). It is a rare congenital condition that affects ONE in 5000 births which is very rarely talked about or known in the wider community. It reveals the many difficulties both emotionally and physically that babies, children and adults living with IA/ARM endure. It is a book filled with love, courage, resilience and hope. It shows the importance of having access to good information and medical staff who are compassionate…