Opieka nad dzieckiem z chorobą rzadką i niepełnosprawnością intelektualną a wsparcie rodziny

Abstract

The aim of conducted research is to analyse support which was given by the family undertaken on children with rare disease and mental disability. The research is based on quantity analysis in comparison with diagnostic survey method. 40 parents were involved in the research. The main research question of this paper is: do the parents of children with rare disease and intellectual disability receive a practical and emotional support under taking care of son/daughter from the relatives? Basing on conducted research it might be indicated, that almost half of parents have obligations related to everyday responsibilities. As well, half of parents declared that they have as much of responsibilities connected with taking care with their child as they can manage to do. Additionally respondents marked, that all of the members of the family (wife, husband, brothers and sisters of disable child) are taking everyday responsibilities. Most of parents indicated that they received both practical and emotional support from their family members on limited level.

Parents facing the burden of caring for a child with a rare disease – cystic fibrosis

“…Wraz ze wzrostem wiedzy medycznej w obszarze RD zwiększa się zainteresowanie problematyką psychospołecznego funkcjonowania zarówno samych chorych, będących w różnych okresach rozwojowych, jak i członków ich rodzin. W przypadku dzieci są to rodzice, którzy pełnią odpowiedzialną rolę w procesie diagnostyczno--terapeutycznymi, współfinansują leczenie i rehabilitację oraz zapewniają chorym codzienną opiekę i wsparcie (Klajmon-Lech, 2018a, 2018b, 2018cKamyk-Wawryszuk, 2018, 2021.…”