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Moses Kayongo

Moses Kayongo

University Of Lay Adventists of Kigali, Rwanda

Title: Post haplo identical stem cell transplant for sickle cell disease: Parents’ experience and challenges in caregiving

Biography

Biography: Moses Kayongo

Abstract

Statement of the Problem: Haplo Identical Stem Cell Transplant (SCT) procedure  in some countries is still considered experimental and performed only as part of research studies because of the complications during and after the transplant such as high risk for infections, Graft-versus-host disease (GVHD), Graft failure, Nutrition problem, Low blood counts, dermatological challenges, Social and emotional concerns and others. The number of Haplo Identical SCT procedures nonetheless, continues to rise as parents in many African countries seek treatment for the increasing diagnosis of sickle cell disease among children. Parents as caregivers are destined to face a greater number of challenges yet there has not been any documented shared experience of this specific procedure. The purpose of this study report is to describe the 2year caregiving experience and challenges by a family living in Rwanda, since their nine-year-old daughter’s Post Haplo-identical SCT, done on (December 28th, 2016) at Christian Medical College Hospital, Vellore, India to further the understanding and knowledge of the caregiving aspects of this procedure.

Methodology/Finding: Using a case report approach, six key points emerge from a caregiving perspective of parents’ experiences and challenges namely: nutritional adjustments, continuous home monitoring and evaluation of the child’s general wellbeing, compliance to routine consultation / medications, father’s direct involvement and social interaction difficulties besides the mother’s role.

Conclusion: Despite this procedure being delicate and complex during and after transplant, our experience as caregivers has shown that Pre/Post-Haploidentical SCT orientation and existing experienced doctors in the different specialties’ related to the complications have so far greatly contributed to our post-transplant adaptation to care to give.