Many children and young people with ill siblings are thriving – but more experience challenges in everyday life

Growing up with a sick sibling can be an extra challenge. Although most children and young people in this situation thrive at school, with friends, and in their families, more of them report wellbeing problems in daily life than their peers.

This is shown in a report from the National Institute of Public Health, University of Southern Denmark, and the Danish Cancer Society, based on survey data and interviews with nearly 6,000 students.

According to senior researcher Susan Ishøy Michelsen, it is important to emphasize that most children and young people with ill siblings report high life satisfaction and are thriving at school, in their education, in their leisure time, and in their families.

“But when we compare the groups, a larger share of children and young people with ill siblings feel different or under pressure and face challenges both at home and in their free time. This is particularly the case when the sibling has reduced daily functioning,” she says.

In the survey, children and young people themselves indicated whether they have a sibling with a serious illness, a chronic condition, or a disability.

Particularly vulnerable to wellbeing problems

About 40 percent of children and young people with an ill sibling report that at least weekly there are things their sibling cannot do because of illness or disability. These children appear to be especially vulnerable to lower wellbeing compared with their peers.

For example, 36 percent say they feel sad several times a week. This applies to 23 percent of children with an ill sibling who have normal functioning and 17 percent of children without ill siblings.

In addition, 24 percent of children with ill siblings with reduced functioning report having anxiety, depression, OCD, or an eating disorder, compared with 12 percent of those with ill siblings with normal functioning and 12 percent of those without ill siblings.

More than one in five children with an ill sibling with reduced functioning say they wish their teachers and friends would ask more often how they are doing. This is more common than among children without ill siblings.

Not wanting to worry their parents

In interviews, children and young people with siblings who have cancer say they feel safe with their parents and understand the need for parents to focus on the ill child.

At the same time, the majority – 63 percent of those with siblings with reduced functioning – say they sometimes refrain from telling their parents about things that upset them, in order not to worry them. The same applies to 53 percent of children with an ill sibling with normal functioning and 45 percent of children without ill siblings.

Wellbeing at school and in education

Many children and young people with ill siblings feel more mature than their peers, and many of the older ones say they feel different from other young people.

In upper secondary education, 26 percent of young women with ill siblings say they do not feel part of the class community, compared with 19 percent of young women without ill siblings. Among young men, the shares are 19 percent versus 10 percent.

In addition, a larger proportion of young people with ill siblings report feeling pressured by schoolwork, and a smaller proportion say they get help with homework at home, compared to those without ill siblings.

The interviews also show that children with siblings with cancer do not always feel understood by classmates. They sometimes experience that others ask more about how their ill sibling is doing than about how they themselves are. And some classmates find it unfair when, for example, they get special arrangements with teachers, such as fewer assignments or more absence.

Susan Ishøy Michelsen stresses that it seems particularly important to pay attention to how children with ill siblings with reduced functioning are doing in everyday life – and that some students would like more opportunities to talk at school about what it means to have a sick sibling.
“Having illness or disability in the family is a life condition that affects everyday life, and one that children without ill siblings are not familiar with. Many of the students in the survey highlight that it would be a good idea to dedicate a school lesson to discussing what it is like to have a sick sibling or parent,” she says.

Facts about the study

In total, 5,784 students in primary school and upper secondary education took part in the survey in 2016 – of whom 613 reported having an ill sibling. Between 2016 and 2023, interviews were also conducted with siblings of children with cancer.

The survey was funded by the Egmont Foundation, while the report and the qualitative interview study were funded by the Danish Cancer Society.