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Talking about Health: Parents as Partners in the Therapeutic Discourse


Sohad Rahman

My project focuses on the communication between parents to chronically ill children and the medical staff treating them in the Pediatric Intensive Care Unit at Hadassah Ein Kerem Hospital in Jerusalem. The children hospitalized at the unit are also treated in other settings in the community and at home. Throughout their life, they need complex treatment which requires close supervision around the clock, dependence on medical instruments and health services, as well as special procedures. 

As their primary caregivers, the parents of chronically ill children manage their treatment vis-à-vis the health system and are responsible for complex medical procedures such as intravenous and intestinal feeding and medicinal regimes. For these parents, life is akin to a medical marathon, running through the various treatments. 

I studied the reasons for the parents’ reported helplessness, low effectiveness, loss of control and anger. I found that the parents are interested in becoming partners in the treatment process and in bringing the unique expertise they have acquired by experience to bear. Another finding arising from my study was the focus of the medical teams on managing the child’s disease and physical condition. Despite the parents’ importance in the treatment, today we lack the tools for coping with their distress. Studies show that collaboration with the parents may improve the effectiveness of treatment. 

The proposed solution is a treatment roadmap, a tool for sharing information and knowledge between the medical team and parents. This map organizes hierarchically important pieces of information and promotes cooperation in the treatment process and sharing the responsibility for it between the staff and parents. The map will enable the parents to express their opinion, share important information with the medical team, create a joint discourse and enable a more effective treatment.

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Sohad Rahman

I am a teacher in an experimental special education school active within the Hadassah Ein Karem Hospital in Jerusalem, where I promote projects related to the experience of the hospitalized children and their families, including experience design. My credo is combining technology and innovation in learning processes. My challenges have intensified while leading the establishment of a school branch in the hospital’s Pediatric Intensive Care Unit. Part of my job is to adapt the teaching to bedridden children who are connected to tubes, and at the same time collaborate with the medical staff. To do so, I promote the implementation of new visual aids and tools at the unit, and take part in developing models and booklets to prepare children for medical procedures.

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