Konstiantyn Postumitenko / Mostphotos

Disability is a highly overlooked dimension in health inequalities and barriers faced by disabled people are often neglected by public health practitioners. The medical model of disability has been the dominating one for decades. This model conceptualizes disability purely as a medical and individual characteristic, thus being object of research fields such as medicine, special education and rehabilitation, according to Alessandra Grotta, researcher at the Department of Public Health Sciences at Stockholm University.

Alessandra Grotta, researcher at the Department of Public Health Sciences.

“Instead, this project, as well as our ongoing project on disabled people and cancer screening, recognizes the social dimension of disability, in the same way as, for example, gender and race do represent social categories. Our projects aim at investigating disability-related health inequalities which can be driven by many factors, such as reduced access to the healthcare, communication barriers as well as stigma and discrimination,” Grotta says.

Knowledge gaps that needs to be filled

The project “Overlooked Children in Need (ORCHID): A Study on the Development and Well-Being of Children of Parents with Disabilities”,

Can Liu, researcher at the Department of Public Health Sciences.

which runs 2024–2026, is led by Can Liu, researcher at the Department of Public Health Sciences at Stockholm University. The reason why this project focuses on the health and well-being and development of children of disabled parents is that we don´t know to which extent the barriers faced by disabled parents have an impact on their offspring, and there is a knowledge gap there that needs to be filled.

“We don't know how many families having a disabled parent there are in Sweden. So we first want to provide some numbers, then describe health outcomes of the children around birth, which we know is a very important stage of life, to outcomes later in life as they grow older,” Liu says.

Families with disability are disadvantaged

Grotta states that the aim of this project is to increase knowledge in order for families, parents and their children to get better support.

“Results will primarily benefit families where parents are disabled. However, in the same way as research on gender and race have benefited not only women or people of colour, similarly a better understanding of disability in the context of public health will increase our overall understanding of social inequalities in health, how they are generated and maintained,” Grotta says.

According to Liu, the research will also be of interest academics, pushing forward the understanding of disability and the interaction between individual health status and environmental factors. Policy makers would also benefit from the research results, she says.
“There seem to be gaps in social/health services in a seemingly comprehensive welfare system, where families with disability seem to be falling in the gaps and being made even more disadvantaged. We will aim to provide knowledge for making policies to complement the existing service framework,” Liu says.

Furthermore, the results would be useful to social and health service providers, she says.

The researchers will work together with disabled people

An interesting part of the project is that the researchers will work together with the group of interest here, that is disabled people and their family members. A reference group consisting of disabled parents and also young adults who were raised up by disabled parents.

“We will ask them to co-design or co-produce the knowledge with us. We want to invite them to participate in the process of when we specify our exact research questions and also when we find some preliminary results, we want to present to them and ask them to interpret the results together with us from their perspective,” Liu says.

The research group will use Swedish register data from the whole population as their study sample. They will try to assess parental disability using quite comprehensive data from social welfare, medical records, as well as insurance registers.

“After assessing disability among parents, we will be able to identify the children of disabled parents as group and compare them to the other group of children, and see how they're doing, how they fare compared to their counterparts,” Liu says.

Håkan Soold