Permanent disability is defined as physical conditions that probably or definitely affect daily life functions for> 3 months / year and determine overall hospitalization> 1 month / year. These disabilities include asthma, cerebral palsy, cystic fibrosis, congenital heart disease, diabetes mellitus, inflammatory bowel disease, renal failure, epilepsy, cancer, juvenile arthritis, hemophilia and sickle cell anemia.
The physical disability, such as amputations, deformities and skin lesions extended also ruin the image of self and child development. While each disability is rare, affecting all together about 10% of children and may constitute an important part of children.
Effects of permanent disability on the child despite many differences, children with permanent disabilities have joint pain, discomfort, limited growth and development, frequent hospitalization, outpatient visits, treatment of pain and discomfort, the inability to participate in peer a significant burden of daily care and an unpredictable course.
The low number of disabled adults who can be role models (eg., TV personalities) makes it difficult for children to determine their identity. The physical differences can lead to social rejection by peers and a weakening of motivation. The disability may also interfere with the child’s ability to achieve objectives (eg., Independence of the child who can not physically get away from his parents) and can change the temperament of the child, leading to a mismatch (eg., distracted the child of nature who is also suffering from deafness).
Effects of permanent disability on the family regarding the family, permanent disability leading to loss of hope of having a “perfect child”, to neglect the brothers, increased costs and time commitment to treatment methods confused, loss opportunities (eg. the mother who can not return to work) and social isolation. This stress can cause family breakdown, especially when there are other marital and family problems.
Conditions that damage the appearance of a child, eg., Cleft lip and / or palate or hydrocephalus, may affect the attachment between the child and family who look after it. Once the diagnosis of abnormality, the parents may grieve for the loss of the “ideal child” showing signs of shock, denial, anger, sadness or depression, guilt and anxiety. This can happen at any moment in the development of the child and each parent can be in a different stage of acceptance of the abnormal, such as to hinder communication between them. They may express their anger at health professionals can take them or their refusal to seek multiple opinions about the condition of their child.
Needs to be borne by the family and compassion for the child, may make it impossible to discipline and may lead to behavioral difficulties. One parent (usually the mother) can get involved in an excessive way from the problems of the child, thus ignoring the normal family responsibilities. The other parent may become isolated hours of surgery doctors can prevent many parents to be present together with medical, leaving one parent is not informed.
Effects of permanent disabilities in the community: a problem in the community is the lack of understanding by many people, whose only contact with the chronic childhood disability occurs during the telethon designed to raise sympathy and money. Further aggravating the problem and investment policies are inconsistent, inadequate access to facilities (including physical barriers to access) and poor communication and coordination between the health, education and community support.
Coordination of medical care without co-ordination of services, medical care will be in deficit, some interventions will be doubled, while others are neglected. Coordination therapy requires knowledge of the conditions of the child, family and community in which it operates.
All professionals who provide care for a chronically ill child must ensure that someone coordinate assistance. In ideal conditions, the coordinators should be the parents. However, systems that must be dealt with are often so complex that even the most capable parents need help. Other possible coordinators are general practitioners, specialists in program management teams, nurse, and representatives of insurance and the state. Regardless of who work in the coordination of services, family and the child must be actively involved.