Berggren Ulrika Järkestig, Bergman Ann-Sofie
Department of Social Work, Linnaeus University, 39231 Kalmar, Sweden.
Department of Social Work, Stockholm University, 10691 Stockholm, Sweden.
Int J Environ Res Public Health. 2022 Mar 11;19(6):3330. doi: 10.3390/ijerph19063330.
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is to shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn.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.
自1993年实施以来，个人协助服务已被证明能为严重功能障碍者的日常生活提供支持，确保他们融入社会角色，如工作生活。个人协助服务（PA）也可能在育儿方面提供支持；然而，随着瑞典对PA权利的质疑日益增加，残疾父母在作为父母获得支持方面有着不同的经历。在获得个人助理对孩子日常生活的重要性方面，经历也存在差异。本文的目的是阐明PA在日常生活中对父母和孩子的意义，特别是当PA减少甚至取消时。对11位曾经或目前接受PA服务的父母进行了访谈。结果表明，父母表示PA帮助他们履行父母的角色，尽管这种支持可能需要根据父母及其子女的需求更加灵活。在PA被拒绝的情况下，孩子会受到负面影响，一些孩子会承担起照顾父母的责任。总之，在评估PA权利时，需要考虑孩子对其家庭生活的看法。
