Children with disabilities—An overview of their situation

Children with disabilities are a fast-growing group in all societies, and their situation is often strained not only by their disability itself but also by a lot of other challenging circumstances they have to face. What are included in these challenging situations and what can we as qualitative researchers do to improve their situation? It is estimated that about 15Á20% of all people in the world suffer from some kind of disability. That number is increasing rapidly, depending on relatively newly acquired knowledge in how to save extremely premature babies and how to save children with severe disabilities and/or diseases. Also, there is a general prolonged life expectation for persons who are severely sick and disabled and also new and better ways in diagnosing diseases and/or disabilities. Medically these children with disabilities often are fragile and hospitalized during repeated and/or long periods and are accordingly exposed to frequent medical treatments, which, in turn, are a risk for complications that can worsen their already challenged health. Caries and gingivitis are their most unmet health care needs, and these children still receive less and less advanced odontological treatments than others. These children also have a high risk of developing psychological ill-health, such as depression or anxiety, and may have difficulties in communicating these feelings to others. Most of the children with disabilities come from economically challenged families, partly owing to their parent's limited abilities to work full-time. This is often depending on their strained life situation and partly owing to higher exposure for risk environments in poorer groups and thereby higher risks for diseases and/or disabilities in the children. Being a parent of a child with a disability constitutes a permanent stressor. This includes worries for the child's health and well-being, financial worries, marital problems , sleep disturbances, and worries for healthy siblings, which can lead to physical and/or psychological ill-health, especially in single mothers. Also, healthy siblings are at risk for psychological ill-health and socially challenging risk behavior owing to the strained life situation and increased responsibility level. Examples of this are frequent babysitting and limited possibilities for the parents in taking time for and acknowledging the siblings, and that is especially true for older sisters. Grandparents can however serve as moderators for the strained life situation in the family by listening to the parents, acknowledging the positive sides of the child with a disability, and by occasionally taking care of …