Covid-19 effects on families with personal assitance

Sweden is one of few countries that provide individuals with disabilities the right to receive personal assistance regulated by law (LSS).

The law recognizes the cognitive and emotional fatigue that can accompany providing care and support to a person with disabilities and consequently, at times, the LSS focuses less on the person with a disability and more on those who support and care for them. Still, not much research has been done on the consequences of personal assistance on the family.

This project aims to investigate the effects of receiving personal assistance on the socioeconomic, demographic, and health outcomes for members of the immediate family.

In particular, we are interested in how the COVID-19 pandemic has affected these families, in terms of the burden of care and consequential socioeconomic, demographic and health outcomes.

The analyses will be based on total population register data 2003-2020 - an important addition to previous studies which have primarily rested on qualitative and small-scale survey data.

The data enables us to follow families also in periods they did not receive personal assistance and to draw conclusions on the full population.

By linking data from the Swedish Social Insurance Agency to the Multigenerational Register, we will connect children with personal assistance to their parents and family and examine a wide range of outcomes on the family level. This project is planned in collaboration with JAG, Sweden’s largest user cooperative for personal assistance.

A high degree of user involvement will be implemented throughout the project by having an advisory group with representatives from JAG that will assist in all steps of the research process. The proposed project fits well within Forte’s areas of responsibility.

Also, given the high costs of LSS, and the indirect family focus in parts of the law text, learning more about the effects of LSS on the family should be a prioritized task.