According to Vermaes et al. [7], little is known about the impact of the disease on family functioning. MMC is the second most common birth defect in the world. Its occurrence depends on the geographical region, genetic and environmental factors [8]. The diagnosis introduces anxiety and a sense of unpredictability in the parents’ lives. Often parents feel lonely in the fight against the disease; they lack systemic

support. Achilles et al. [9] found that parents of children with disabilities face many challenges in psychological adaptation, much greater than parents of healthy children, in particular if the disabled child has more than one disability. The degree of disability in MMC depends on the location of LY2109761 manufacturer spinal cord segment damage and type of defect (MMC tectum, apertum). Since the mid – 1960s, early surgical treatment of spina

bifida increased the survival rate of children with severe cases of spina bifida, and in recent years the development of prenatal treatment at approximately 20 weeks of pregnancy GDC-0973 in vitro has further improved the chances for survival [9]. As a result, medical workers were given the task of supporting the quality of life for these children and their families. On the one hand, improvement of the quality of life depends on medical actions (e.g., urological, orthopedic, degree of hydrocephalus); on the other hand, on psychosocial actions, depending

on the development of science associated with the chronic disease [10], [11] and [12]. The concept of quality of life infiltrated from everyday language to science, which is why, despite the universality of its application, it is difficult HSP90 to define. The WHO defines quality of life as individuals’ perception of their life situation in the cultural context, value system in relation to the environmentally conditioned tasks, expectations and standards. It is a comprehensive evaluation method of an individual’s physical health, emotional state, self-reliance, degree of independence from their surroundings, as well as the relationship with the environment and personal beliefs [13] and [14]. In medicine, there is a concept of quality of life conditioned by health status (Health Related Quality of Life; HRQOL). It is a functional effect of disease and its treatment experienced by the patient [14]. Quality of life is important in medical practice in order to improve the doctor–patient relationship, to evaluate the effectiveness and relative merits of different treatments in the evaluation of health services, and in research and health policy development [13] and [14]. The World Health Organization Quality of Life (WHOQOL-BREF) instrument comprises 26 items, which measure the following broad domains: physical health, psychological health, social relationships, and environment.