The Healthcare Labyrinth – exploring the journey to childhood cancer care with Dr. Neha Faruqui and Dr. Ramandeep Arora
Sustainable Development Goals: 3
- SDG 3 - Good Health and Well-Being
How does a child with cancer in India access care?
If you’ve ever had an illness that was difficult to diagnose, you know that navigating the medical system can be incredibly frustrating. Bouncing back and forth between doctors, taking time off of work or school, waiting for hours upon hours, all while you don’t feel well and do not know what is going on with your body is enough to drive anyone crazy. Unfortunately for families of children with cancer, they know this feeling all too well. Childhood cancer can be very difficult to diagnose and the journeys that families undergo to find answers and receive care can be long and grueling.
To better understand these journeys, Drs. Neha Faruqui, Ramandeep Arora, and their colleagues have studied what they call the “healthcare labyrinth” of accessing childhood cancer care in India. Through discussions with parents and caregivers, they classified the major themes that contribute to difficult or prolonged paths to care. Today on the podcast, we will discuss their findings from their many hours of listening to the families’ stories.
I would encourage anyone listening to the podcast to also read their paper. As I say in the podcast, it reads more like a novel than a journal article, and I found myself emotionally invested in the way the parents described their journeys. It made me appreciate anew how important it is to establish robust health systems that can rapidly identify patients and refer them to appropriate tertiary care.
Lastly, this discussion is not meant to be a criticism of the Indian healthcare system. It is an enormous system that is responsible for caring for 1.3 billion people! There are many things it does very well! But of course, there are things that can be improved. As Dr. Arora says in the episode, this paper, and our discussion is about listening to the caretakers to discover how providers everywhere can better care for not only the patient during treatment but for the entire family through the entire cancer experience.
Read the full study here: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x
Dr. Neha Faruqui:
Neha Faruqui recently completed her Ph.D. from the University of Sydney focusing on access to care for children with cancer in India and the implications for Universal Health Coverage. Her previous work experience included public health projects at the Indian Government level and at the grassroots level with NGOs. Neha’s interests lie in health systems research, non-communicable disease research, and health policy and planning. She also tutors the Masters of Global Health students at the University of Sydney on various subjects.
Dr. Ramandeep Singh Arora
Senior Consultant, Paediatric Oncology, Max Super Speciality Hospital, New Delhi
Honorary Head, Quality Care, Research and Impact Analysis, Cankids India, New Delhi
Secretary, Indian Pediatric Oncology Group (InPOG)
In this podcast, Dr. Neha Faruqui and Dr. Ramandeep Arora discuss a recently published paper, titled "A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India." The paper discusses the experiences of children with cancer and their families as they navigate accessing childhood cancer care in India. Dr. Faruqui and Dr. Aroroa speak about the findings of this paper, the stories of the families, and what providers can do to ensure better care for patients and their families throughout the treatment process. Play the podcast.