Wechselwirkung Krankheit Familie

Abstract

Multiple sclerosis confronts patients, partners and their children with a wide array of challenges. In addition to physical symptoms, multiple sclerosis may result in cognitive dysfunction, depression or personality changes. Changes in family roles, loss of work, income and social status and caregiver burnout are common in these families. Thus multiple sclerosis represents a disease condition that has the potential to affect partner and children in a number of ways. Based on studies of 70 families and 110 of their offspring by means of semi-structured psychiatric interviews, questionnaires and psychological tests, we evaluated the coping process of the ill, the healthy parent and their children. We analysed disease variables, parental factors and family situations favouring the coping process of children or aggravating their burden, resulting in serious consequences for their psychosocial development. The results with respect to the coping of all family members show the mutual influences between the parental couple as well as between the parents and their children. The better patient or partner are able to cope with the disease, the higher are the values of the coping capacity of the partner and the patient respectively. Children's coping abilities are influenced by their parents' coping behaviour, and even stronger by the coping competence of the healthy parent. With regard to disease variables there are significant correlations between the severity of the disease, cognitive impairment and the degree of depression. Additional cognitive dysfunction of the patient is associated with depressive symptoms in his or her partner. Psychological distress affects not only the chronically ill patient but also the caregiver. A severe parental disease is considered as a potential risk factor for psychological trauma in children. If multiple psychosocial distress factors come together, the impact on the child's psychological development may be traumatising. Main factors aggravating children's burden and impeding their coping process are: parental depression, single parenthood and social isolation of the family, parental communication incapacity and unresolved traumatic experience in the parents' own past history. The latter may be associated with the parent's feelings of victimisation and a tendency to focus his or her life around the disease. Such an attitude interferes with his or her capacity to perceive and be available to the child's developmental and affective needs, leading eventually to her or his emotional or in rare cases physical abuse. In this context, social isolation may operate as a more or less important factor.