Children with life-limiting diseases and their families. Research needs from the perspective of physiotherapy

The treatment of children with life-limiting diseases and their families involves many challenges. This article presents a compilation of the state of knowledge on the situation in this patient group. Supported by an analysis of the literature on this subject, the aim of this article is to compile knowledge about the situation of children with life-limiting diseases and their families as well as their problems and needs. The questions asked are: what information can be found in the literature on the situation of families with children with life-limiting diseases, what aspects have been investigated and dealt with and which have not yet been taken into consideration? On this basis further considerations are formulated particularly with respect to future research needs. The results show that children with life-limiting diseases are a heterogeneous and epidemiologically hard to define group of patients with high burdens of disease and complex support needs. Although the causes of the illness, symptoms and therapies have been intensively discussed in the literature, the situation of the children, their families and the challenges and roles of physiotherapy have received little attention. The necessity of research in the health care of this patient group is apparent and for this purpose the evidential basis of direct interventions as well as concepts of the educational aspects of physiotherapy must be emphasized.