‘I can’t take my eyes off her’ problems and difficulties experienced by mothers caring for their intellectually disabled children at home: a qualitative research

Abstract

This qualitative study was conducted to learn the experiences of mothers who care for their children with intellectual disabilities at home about the problems and difficulties they experience. The study was conducted through in-depth interviews with 20 mothers who met the inclusion criteria in private and public special education rehabilitation centers in Zonguldak province between 1 January and 29 March 2024, in Türkiye. The content analysis method was used to analyze the data. As a result of the analysis of the data obtained from the interviews, six themes emerged. These themes are (1) the worn-out psychology of the mother, (2) socializing is too far for us!, (3) I am not enough for my children, (4) my child is at the center of my life, (5) my child’s difficult process, and (6) I am not alone. There were many problems and difficulties experienced by mothers caring for their intellectually disabled children at home. They had created their solutions for these. The mothers who participated in the study made all the materials they used in their home environment suitable for children. They had also taken safety precautions to prevent harm to children through objects. While most of the families suffered economically, not all of the mothers felt psychologically well. However, they did not neglect their priority towards their children. They overcame these problems with the support of family, friends or health personnel. Establishing health services and social programs that support mothers in terms of both psychological issues and home care opportunities will allow mothers to feel better.

Keywords:

• İntellectually disabled children
• home care
• mothers
• problems
• difficulties

Disclosure statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this article.

Data availability statement

The data that support the findings of this study are available from the corresponding author upon reason-able request.