@article{4860b49e-0e24-4c87-8a63-5c8f520f0b13,
author = {Agnieszka Kamyk-Wawryszuk},
title = {The needs of family with a child with a rare disease and intellectual disability and the possibilities of support by the local community},
journal = {Disability},
volume = {2018},
number = {Issue 31 (2018)},
year = {2018},
issn = {2080-9476},
pages = {72-86},keywords = {support; local community; family; child with rare disease; intellectual disability},
abstract = {The purpose of this paper is to describe the possibilities of supporting families of children with rare disease and intellectual disability in the context of their needs. The research was embedded in the quantitative orientation using the diagnostic survey method and the Family Quality of Life Survey by I. Brown, R.I. Brown, N.T. Baum et al. 40 parents of children with rare disease and intellectual disability participated in the research. Two main research questions were formulated: Do parents of children with rare disease and intellectual disability receive practical and emotional support from members of the local community in which they live? To what extent parents of children with rare diseases and intellectual disabilities receive practical and emotional support from other people? Conducted research indicates that more than half of parents do not receive practical support from friends and neighbours regarding, for instance, shopping when the child is sick and the mother or father can not leave the house or helping with home activities, such as  preparing dinner. With regard to emotional support from members of the local community, it is difficult to indicate its degree. Thus, the need to be interested in family problems by members of the local community is not met.},
doi = {10.4467/25439561.NP.18.043.10443},
url = {https://ejournals.eu/en/journal/niepelnosprawnosc/article/potrzeby-rodziny-dziecka-z-choroba-rzadka-i-niepelnosprawnoscia-intelektualna-a-mozliwosci-wsparcia-przez-spolecznosc-lokalna}
}