Protection or overprotection? : the lived experience of persons with intellectual disabilities and their primary caregivers in Malta

Abstract

The aim of this research is to find out how protective and overprotective attitudes from the primary caregivers impact the lives of persons with intellectual disabilities. Sanders (2006) argued that, very often, disabled persons are likely to end up being overprotected throughout all the stages of their life. Callus et al. (2019) also found that overprotection is a disabling barrier for persons with intellectual disabilities. Since the idea of this research emerged from the study conducted by Callus et al. (2019), I wanted to look within the experience of persons with intellectual disabilities on how this barrier, overprotection, if it is present within their lives, impacts them. I wanted to get to know if persons with intellectual disabilities are aware that they are experiencing overprotection when it is present in their life. I also wanted to explore if there are any different impacts on persons with intellectual disabilities when their primary caregivers resort to protective or overprotective attitudes. In addition, I wanted to explore the factors that lead to primary caregivers resorting to protective or overprotective attitudes with persons with intellectual disabilities. Since I wanted to explore the lived experience of persons with intellectual disabilities and their primary caregivers in relation to protection and overprotection, I opted to use IPA as a research methodology. IPA is a phenomenological approach interested in analysing the lived experience of individuals, and in making sense of the lived experience of these individuals (Smith et al., 2022). Data was gathered via semi-structured interviews, hence, I had the opportunity to collect data in person from the participants. This research represents the lived experience of the participants, who consisted of four persons with intellectual disability and their primary caregivers. It is interesting to note that primary caregivers that had a good support system were able to provide support to persons with intellectual disabilities. On the other end, primary caregivers who had lack of support resorted to overprotection to take care of persons with intellectual disabilities. Persons with intellectual disabilities whose primary caregivers were supportive had more possibilities to lead an independent life and have an active social life, whilst persons with intellectual disabilities whose primary caregivers were overprotective had limited opportunities to lead an independent life and have an active social life. Based on the findings of this research, it was concluded that for persons with intellectual disabilities to overcome overprotection, we need to have support services in place for their primary caregivers. Support services that only support persons with intellectual disabilities and ignore their primary caregivers are not sufficient.