Abstract:

The situation of siblings of people with intellectual disabilities is an important aspect of the quality of family life perceived as a system. When analysing the functioning of families of children with disabilities, researchers most often focus on motherhood and fatherhood, basing on the most frequently identified disabilities. Our analysis shows that the issue of siblings of people with profound intellectual disabilities remains an unexplored area of research. In the article we focused on selected aspects of "being together" between siblings from childhood to adulthood in relation to a fully able-bodied brother or sister, as well as in relation of mothers. The main aim of the article is to analyze and explore the subjective feelings of people raising with siblings with profound intellectual disabilities, as well as mothers bringing up siblings, where one of them is a child with profound intellectual disabilities.

The main technique of collecting data were individual biographical and narrative interviews (Jacob, 2003). Each interviewee signed a written consent to participate in the study. The interviews lasted from 120 to 240 minutes and were recorded on a voice recorder. We used a narrative interview which is similar to in-depth, free conversations. Through follow-up questions, we were trying to encourage the interviewees to tell a story of their experience of social exclusion. We analysed the information shared during the participant interviews using analytical methods that align with a grounded theory because it involves building a theory on the basis of systematically obtained data that directly relate to the observed aspect of social reality. Our analysis of the transcribed interviews was guided by GT principles, which include limiting the researcher's pre-conceptualisation and focusing on theoretical sampling. We divided the data into smaller units, called incidents, which we then conceptualised and related to other incidents. Our general analytical procedure was to constantly and iteratively compare incidents.

Research has revealed that the situation of aging parents as well as adult siblings of people with profound intellectual disabilities is particularly challenging and should not be considered in social disputes by analogy with the situation of families of people with lesser degrees of disability. The support offered to these families should also be implemented with understanding and in accordance with their multidimensional needs.

Keywords:

Siblings, profound intellectual disability, mother, family.