Primary caregivers thinking about the future of family members with intellectual impairment

Abstract

As from the diagnosis, parents of individuals with intellectual impairment face several concerns and aspirations. Concerns are often derived from the child’s problems, societal expectations and stigma. On the other hand, parents also hold various aspirations and are those most in tune with the aspirations of their disabled child. Consequently, since the parents are their primary caregivers and main source of support, they impact the aspirations of their child significantly. Thus, this study set out to understand the ever changing concerns and aspirations that parents hold about the present and the future, to enable support services to cater for these concerns thereby encouraging parents and their children to aspire further. The main focus of study was to understand the concerns and aspirations parents hold for their child following the time they are no longer able to carry out their role of primary caregivers. This research employed a qualitative strategy, a cross-sectional interview design, carrying out eight semi-structured in-depth interviews with ten parents of individuals with intellectual impairment. The ages of the participants’ children ranged from three years to thirty-eight years. General findings identified that parental concerns and aspirations tend to revolve around their children’s safety, educational success, employment possibilities, their opportunities to form friendships, and their child’s care, well-being and living arrangements following the time that they will no longer hold the role of primary caregivers. These findings suggested that the concerns and aspirations are impacted by factors including the parents financial situation, the parents emotional support system, the family system, and the stigma experienced in society. Findings also indicated that despite concerns about their child’s future living arrangements, there was a lack of concrete plans. Recommendations provided were based upon recommendations provided by the parents themselves and the key outcomes of this study. Such notions brought about by the co-producers suggest that there are various limitations within support services, such as gaps between services and lack of case ownership, and indicate that parents of people with intellectual impairment require further support; including support to meet their concerns and aspirations.