2023 Volume 32 Pages 35-43
The purpose of this qualitative descriptive study was to clarify the experiences of patients with severe motor and intellectual disabilities (SMID) receiving home health care during life events, focusing on family life from childhood onward. In their life with their family since childhood, [their symptoms worsened and they did not interact with their peers] [Adjustment of their life to fit their peers] [Life with restrictions where only they are scolded and their parents are taken by their peers] [Helping care for their peers by seeing their parents] [Awakening to the realization that they need support and care for their peers and finding their existence value through seeing their parents’ joy]. The characteristics of the parents are: [Putting the lives of their siblings and their parents before their own] [Respecting the wishes of their siblings and participating in activities that connect them to society]. Experiences related to sibling-centered life events were found to be. The following were mentioned: [Choosing a career path or occupation that prioritized the presence of siblings] [Interacting with friends while being aware of the presence of siblings] [Anxiety about being rejected or not being accepted because of siblings] [Anxiety about having children and parents’ encouragement] [Parental thoughts about the growth of their children overlapping with that of siblings]. It is necessary to support siblings’ childhood struggles and experiences and the process of changing roles.
