IJPDS International Journal of Population Data Science

Siblings of children with neurodevelopmental conditions, such as intellectual disability, and autism, have unique life experiences and challenges growing up alongside a family member with a disability. Providing support for their needs can be difficult when they are often out of the spotlight, and are frequently unmet.  This issue led researchers from the Kids Research Institute Australia to consider whether using routinely collected data from population registers could help shine light on sibling health and wellbeing.

Research into siblings typically uses surveys or small focus groups to collect data and, for younger children, parents or teachers often provide information. However, these methods may not capture broader sibling experiences, especially for siblings of children who have rare conditions, or when experiences change over time. To find out more, the team decided to conduct a scoping review to find out whether linking existing sibling data at the population level might provide a unique population perspective.

A new article, published in the International Journal of Population Data Science (IJPDS), shares the details of a scoping review on studies published since 2000 that used population data that included sibling data.  Interestingly, most of the studies were Scandinavian, where capabilities to link population data are readily available and accessible for research.  Data had been linked across many different population registries, and in one study, 11 different registries were linked.  They found that on average across the studies, siblings were followed over a period of 31 years, and data on up to four million siblings were captured per study.  This provides significant advantages - the ability to capture an entire population of siblings, to subgroup families, to follow siblings over time, and to reduce the need to contact siblings and collect data from them directly.

The review established that it is indeed possible to capture many important sibling health outcomes at the population level such as psychiatric diagnoses, self-harm and suicide, the prevalence of other neurodevelopmental conditions, and medical conditions such as atopic disease, cancer and obesity.  As any health outcome can be examined where data linkage capabilities exist, the scoping review highlighted great potential for population data linkage to enhance understanding of sibling health and wellbeing.

Historically, siblings have not been the focus of much research despite the data being available. Lead author, Caitlin Gray explained how data linkage as a method is poised for immediate benefits for siblings, “Linkage of population data has great potential to explore sibling health outcomes, and capabilities are already established in many countries. The readiness of this method to help focus more closely on siblings will bring more attention to their support needs.”

 

Click here to read the full article

Caitlin Gray, The Kids Research Institute Australia

Gray, C., Leonard, H., Cooper, M. N., Rai, D. and Glasson, E. J. (2025) “The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping review”, International Journal of Population Data Science, 10(1). doi: 10.23889/ijpds.v10i1.2413.