Research project Parental experiences of co-residing with and caring for an autistic adult child in a NEET position
Malin Ljungbergs dissertation is about everyday life, caregiving and time among parents who co-reside with autistic adult children who are not in employment, education or vocational training (NEET).
Parents of younger autistic children report extended responsibilities for caregiving, lower quality of life, and higher rates of stress, compared to other groups, even though there is a unique welfare system that is specifically designed for the target group in Sweden. When a grown-up child (18 years or above) lives at home and is in a NEET position (not in employment, education, or training) parents need consent to be an active part in the young adult contact with support- and health care systems. This raises questions about how parents experience caregiving and living conditions and how they navigate their everyday lives.
Project description
The dissertation is a compilation thesis with an explorative and cumulative design with an objective to deepen the understanding and create knowledge about the experience of parents who co-reside with an adult autistic child (18 years old or above) who is unemployed, not in education or vocational training. The first study is a scoping review that aims to synthesize existing knowledge about parental experiences of caregiving. Based on the result of the scoping review, an interview guide will be created. The interviews will explore parents’ experiences and stories about their situation, including institutional practices of juridical rights and obligations and structural conditions such as social support, socioeconomic status related to caregiving, and offered support-, care, and healthcare efforts. The second study investigates how the parents manage a perceived gap between their adult child’s needs and available welfare resources. The last study explores how parents, who co-reside with an autistic adult child in a NEET position, navigate and problematize the temporalities of caregiving through the lens of crip time.
Project members
Project managers
Malin Ljungberg
PhD student
