Validating an Information Booklet to Promote Wellness in Families Having Children with Birth Defects

Abstract

Having a child with a birth defect impacts the whole family. Parents of children who have birth defects face unique challenges. They want to understand various measures that can prevent birth defects in the future preganncy. One of the challenges parents face is the communication with healthcare professionals. In gynecology and pediatrics OPDs, parents who have children with birth defects have many queries regarding diagnosis, treatment options available, etc. Doctors are not in a position to separately counsel each and every patient. Hence many queries remain unanswered due to lack of sufficient doctor-patient consultation. Keeping in view these points, a booklet has been developed for facilitating counseling of the parents of babies with birth defects. The booklet covers all the aspects that parents must know to understand risk factors, mechanism, the impact of birth defect in the life of children as well as family, causes of birth defects, diagnosis, management, preventive aspects, etc. To validate its content, feedback and comments of experts in the field of gynecology, pediatrics, nursing and public health were taken. The booklet was scored in the domains of its content (mean score 7.65), layout (mean score 7.45), size (7.7), etc. We hope this booklet will help parents to increase their current knowledge and relieve their anxiety related to various queries.