Abstract
This chapter discusses some of the problems faced by parents whose child is diagnosed with the orphan disease Tracheaoesophageal fistula (TOF)/Esophageal atresia (OA). Effective management of this condition requires parents to share in decisions about care. It is also essential for them to learn to care for their child within the hospital setting and at home. The chapter discusses ways in which they can become active partners in the care team by recording information collected whilst caring for their child. This can then be shared with health professionals in order to ensure that decisions about care are based on the most complete set of information. Parents and carers can also use technology to access information about the condition and treatment and to gain support from people who are dealing with similar problems.
A person always doing his or her best becomes a natural leader, just by example
JOE DIMAGGIO
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Kunst, C. (2014). Using Technology to Share Information: Experiences of Oesophagus Atresia (OA) and Tracheaoesophageal Fistel (TOF). In: Bali, R., Bos, L., Gibbons, M., Ibell, S. (eds) Rare Diseases in the Age of Health 2.0. Communications in Medical and Care Compunetics, vol 4. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-38643-5_18
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DOI: https://doi.org/10.1007/978-3-642-38643-5_18
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