Abstract
Spina bifida is the most common, congenital, neurological disorder. Children with spina bifida live with a range of impairments depending on the severity and the location of the spinal defect. Medical treatment of the disorder is very complex and can involve decision-making processes around sensitive issues such as the termination of pregnancy, selection criteria for treatment, and euthanasia. There is however, insufficient scientific knowledge concerning the consequences of spina bifida available as a basis for these complicated decision processes. This is specifically true for the psychosocial consequences of spina bifida. Therefore, we studied the impact of spina bifida on parents’ mental health and on their social adjustment within the parent-child relationship, the partner relationship, and the family climate. We conducted systemic reviews of the existing literature and interviewed the parents of 78 patients with spina bifida who were born at or referred to the Radboud University Medical Centre in Nijmegen, The Netherlands. From the results we concluded that spina bifida causes increased levels of psychological strain in parents - particularly during the first years after birth - and high levels of parenting stress. The disorder nonetheless, on the long term spina bifida does not necessarily lead to psychopathology in parents, depending on the presence of protective factors, such as partner support, family support, social support, personality traits, and active coping styles as well as risk factors, such as the severity of the child’s functional impairments and family conflicts. Finally, no evidence was found for a detrimental impact of spina bifida on the partner relationship or the family climate.
