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Endocrine Abstracts (2018) 56 N3.1 | DOI: 10.1530/endoabs.56.N3.1

ECE2018 Nurse Sessions (1) (13 abstracts)

Nursing Management of Congenital Adrenal Hyperplasia (CAH): - Education, Managment and use of Multi-Media Technology

Irene Mitchelhill


Australia.


Introduction: The management of Congenital Adrenal Hyperplasia (CAH) requires specific expertise and understanding in childhood, adolescence and adulthood. Patient education and support is an integral part of this health care process, from the delivery of a diagnosis and explanation by medical staff to the more detailed education provided by nurses in order to help families understand the practical aspects of management.

Background: For parents, the initial diagnosis of CAH is an extremely traumatic time and the grief experienced significantly affects the parental learning process. The appearance of atypical genitalia in a newborn female, or the near death experience of an extremely unwell male infant is a devastating experience for the parents, and the beginning of a long road ahead. Parents need to come to terms with the implications of an autosomal recessive condition, its life-threatening nature, and need for life-long treatment and management. At this time the nurse-patient relationship is crucial in providing emotional support and explanation to support the parents through their grief process. Recognition of specific illness stressors (emotional, cognitive, practical) affecting any learning process needs to be addressed in order to support parental ability to cope and understand. The endocrine nurse role is to provide pschosocial support, education and advocacy. Evaluation and management of the emotional needs of the parents and the clinical needs of the child is an essential component. Providing education initally for parents and child as they grow through adolescence to adulthoodand is ongoing, at the same time continually supporting the parents about their long-term fears for their child’s future in adult life.

Conclusion: With CAH primarily a childhood condition, transition to adult care can have its challenges. Health education long term and overall the management plans for CAH should focus on minimising the long-term consequences of over treatment with cortico-steroids in order to suppress the effects of the excess androgen secretion and to ensure a positive wellbeing for adults. Finding the balance is challenging physically and emotionally and can be frustrating for patients. Health Education is now being challenged by public access to information on the internet. Our concern about the validity of such information and its interpretation led to the development of a comprehensive and validated psychococial education program (CAHPEP) for families and patients with CAH, is now a website titled ‘CAHPepTalk.com’, with translations in Vietmamese, Bahasa-Indonesian and Urdu-Pakistan, with the support of Caring Living As Neighbours (CLAN), APPES & APEG.

Volume 56

20th European Congress of Endocrinology

Barcelona, Spain
19 May 2018 - 22 May 2018

European Society of Endocrinology 

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