Counseling over Tubereuze Sclerose Complex in Nederland.

Brenner, J. (Juliette) (2015) Counseling over Tubereuze Sclerose Complex in Nederland. thesis, Medicine.

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Abstract

Tuberous Sclerosis Complex (TSC) is an autosomal-dominant multisystem disorder, with neurological complications such as epilepsy, learning and behavioural problems, as the principal clinical feature. The uncertainty of variable expression, and the interest of early seizure treatment in TSC, provokes the necessity of adequate informing and emotional support (counselling) of (prospective) parents of a child with TSC. There is no guideline for counselling about TSC in the Netherlands. This study attempted to demonstrate the way counselling about TSC was organised in the past ten years, and the desires of parents regarding the counselling, through the use of questionnaires for parents and specialists. Several elements of the counselling were related to parent’s content about the counselling. Elements were 1) involved medical specialists, 2) information on the cause and clinical features of TSC, 3) information on termination of pregnancy and the recurrence risk of TSC, 4) information on the support organization for patients, 5) the method of counselling, 6) knowledge of parents about TSC and comprehension of the counselling. In addition, the overall assessment of the counselling was related to the assessment of the counselling as informative and emotionally supportive, and explained through coding of the explanation on the level of content. The level of content was higher when a larger quantity of information was provided, and when emotional support was provided, through contact with a medical specialist. The type of medical specialist involved, did not make a difference for the level of content about the counselling; but responders were more positive about health services with expertise on TSC. Information should be provided on clinical features of TSC - with emphasis on the variability in expression and the possibility that not al features will occur - and the quality of life with TSC. In addition reference should be made to institutions such as the support organization for patients and social services, for questions, problems and support.

Item Type:	Thesis (Thesis)
Supervisor name:	Brouwer, Professor O.F.
Supervisor name:	Hulshof, Drs. H.M. and Jansen, Dr. F.E. and Wilhelmina Kinderziekenhuis UMC Utrecht
Faculty:	Medical Sciences
Date Deposited:	25 Jun 2020 11:06
Last Modified:	25 Jun 2020 11:06
URI:	https://umcg.studenttheses.ub.rug.nl/id/eprint/2582

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