Chronische somatische Erkrankungen mit psychischer Beteiligung in Kindheit und Jugendzeit

A web-based psychological support program for caregivers of children with rare chronic diseases: A randomized controlled trial

“…Confrontation with the diagnosis, frequently with uncertain prognosis of the disease, or long-lasting complaints without a clear diagnosis, are associated with high emotional stress for parents and worries about the child´s well-being and its future prospects [6,7]. Following the diagnosis, many parents experience a phase of relief, guilt, uncertainty, disbelieve, culminating in emotional shock, often manifested in the form of an acute stress reaction [8,9]. Depending on the diagnosis, the parents may experience fear of losing the child [7].…”

“…Moreover, many families have to deal with uncertainty about the individual clinical course of the disease, a lack of appropriate therapy, frequent hospitalizations, school or/and work absenteeism, restrictions of activities (due to the physical impairment or the medical regimen), residual symptoms, persisting functional restrictions, and late sequelae for patient's psychosocial development, which are associated with substantial burdens [6,9]. The parents have to balance between the treatment plan, professional obligations, personal needs and needs of other family members [6,10].…”

“…Children suffering from RDs and their parents report not only increased psychological strains (characterized by tension, restlessness, confusion, disbelief, uncertainty, insecurity, helplessness, excessive demands, fears, worries, concerns and the feeling of loneliness), but also loss of con dence in the health care system and the medical profession [3,5,6,11,12]. Some parents of children with long-term and genetically determined conditions experience chronic sorrow and feelings of self-blame due to an inability to accept the child´s disease, continually searching for reasons for their child's condition [8, 9,12]. There is consistent evidence that affected patients and their parents show an increased risk of mental health problems such as anxiety and depression [13,14].…”

“…Quittner et al [13] found that parental depression or anxiety double the risk that the affected child would report elevated psychological distress. Parental disease-related fears and inadequate coping mechanisms may contribute to problems in communication, con icts with an adolescent child and his or her desire for autonomy and the child´s feeling of hopelessness, which in turn can negatively affect the course of the disease [9,11]. Effective disease management requires a multidisciplinary approach, including appropriate medical and pharmacotherapeutic treatment, therapeutic patient education, and adequate psychosocial support to help patients and their families cope with a RD as well as possible [5,17].…”

“…Depending on the diagnosis, the parents may experience fear of losing the child [7]. Since a great number of RDs occur from birth and are often severe, many of them require a very high level of care, including managing multicomponent, sometimes invasive, frequently complex, and time-consuming treatment regimen [6,9,10].…”