When motherhood is not enough. Challenges of children with disabilities’ personal assistants

Abstract

The present research aims to investigate the perception of the parent - personal assistant on his/her profession, but also on his/her personal life, with the aim of identifying the challenges, but also the opportunities that this status brings in the lives of the parents. Starting from the purpose of our research, two objectives were pursued, namely to identify the challenges and opportunities of the personal assistant position and to analyze the parents’ perception regarding the decision to become a personal assistant. The study was designed as a qualitative research approach, the interview method was considered the most appropriate to serve the research objectives. The research took place in a day center that offers recovery services to children with disabilities in Timișoara (Romania), the subjects of our research being exclusively mothers. The research revealed that the decision to become a personal assistant for the child with disabilities is dictated by the affection for the child and the sense of duty towards him as a parent, despite the financial well-being previously ensured by a well-paid job. What impacts the respondents’ lives is not the new job, but the confrontation with the child’s disability. If in some cases the disability was accepted relatively easily, the parents offering each other support, the level of cohesion increasing and benefiting of help from the extended family, we also identified a situation where the family fell apart. The only need claimed by the parents is that of counselling, the respondents complainings were on the difficulties they have to manage with regard to stress, fatigue and lack of free time.

Keywords

• disability
• personal assistant
• resilience
• quality of life
• satisfaction