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PhD study on the effect of Spina Bifida on parents

 

Spina Bifida is the most common congenital, neurological anomaly. It is estimated that on average one in 1000 children are born with spina bifida worldwide. At the same time it is the most complex of conditions a human being can live with.

Because of this, medical treatment of children with spina bifida is complicated in many cases and is often a life-long process.
Given the high prevalence, the seriousness of the condition and the far reaching consequences for the child and his/her immediate family, it is amazing that relatively little systematic knowledge is available as a basis for medical treatment and psychosocial caretaking. There is particularly little insight into the effects spina bifida has on family life.

The objective of Dr. Vermaes’ research was to answer two basic questions:
-1 What is the effect spina bifida has on the psychosocial functioning of the parents?
-2 Which risk and resilience factors explain variations in the psychosocial adjustment of the parents?

In order to be able to answer these two questions two pre-research studies were done based on existing literature. In addition empirical research was done regarding themes which were considered underexposed in the literature.

It appears that spina bifida has a significant negative effect on the psychological functioning of the parents - especially on mothers - and on the social functioning of the parents within the parent-child relationship.
However, no proof was found explaining a negative influence of spina bifida regarding the quality of the social adjustment of the parents in relation to the partner and family.

Social-ecological factors which are related to an improved psychosocial adjustment of the parents are support by the partner and family members within the family as well as the support of a social network which fits the needs of the parents.

Intrapersonal factors which stimulate the psychosocial adjustment of the parents are emotional stability, positive semasiology and an active coping style.

Risk factors for the parental psychosocial adjustment are the seriousness of the functional restrictions, behavioural and emotional problems of the child, a conflicting and controlling climate in the family and coping styles which are characterised by denial and looking for support.  
 
This is a translation of the Dutch summary published on the Dutch website http://www.babywerk.net/

For the entire PhD study, read here.

On the link http://opvoedendoejezo.kro.nl/default.aspx some personal experiences are presented (in Dutch) of people with spina bifida and their parents.

 

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