Whether Disabled Parents Receive Personal Assistance for Parenting and the Consequences for Children—An Interview Study

Abstract

Personal assistance, since its implementation in 1993, has been shown to provide support for persons with severe functional disabilities in their everyday life, ensuring inclusion in societal roles such as working life. Personal assistance (PA) may also provide support in parenting; however, with the right to PA becoming increasingly questioned in Sweden, parents with disabilities have varying experiences of receiving support for their role as parents. Experiences also differ in regard to how access to a personal assistant is important to their child’s daily life. The aim of this article is to shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn. Eleven parents who have had or presently have PA were interviewed. The results show that parents describe that PA help them to fullfil their parental roles although the support could be more flexible to the needs of parents and their children. In situations when PA has been denied, children are negatively impacted and some children act by taking on responsibilities for the care of their parent. In conclusion; childrens’ perspective of their family life needs to be taken in consideration when assessing the rights to PA.

Young Adult Carers during the Pandemic: The Effects of Parental Illness and Other Ill Family Members on COVID-19-Related and General Mental Health Outcomes

“…ACT has been flexibly delivered via group [59], online [56], and mobile app [60] modes. Given that caregiving is a profoundly interpersonal role, it is also important that young adult carers be resourced with the necessary practical and social supports via the provision of personal assistance to family carers and the ill family member [61,62].…”

Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review

“…Some other studies considered the complex interaction rising from the parental relationship between parents with disabilities and caring for their children. Berggren & Bergman [23] and Bergman, Emilsson & Berggren [24] mentioned that social discourses about disability do not consider parenthood as a role for adults with disabilities. From a parenting perspective, there is a questioning of the parents' identity since their work as legitimate caregivers are not recognized.…”