A new ARCH Lab publication “Trajectories of health-related quality of life in youth with chronic physical illness and their siblings,” offers important insights into how chronic illness affects young people and their families over time.
The study followed 171 children and teens with chronic physical illnesses participating in the MY LIFE Study, along with their brothers and sisters, over a four-year period. Researchers looked at different parts of everyday well-being, including physical health, mental health, relationships, independence, and school experiences.
Overall, youth living with chronic illness reported lower quality of life than their siblings across most areas. However, the findings also show that many young people are resilient. For most participants—both those with illness and their siblings—well-being stayed fairly stable over time, with only a small group experiencing noticeable declines.
Interestingly, siblings were more likely than their affected brothers or sisters to show improvements. Researchers suggest this may reflect how families gradually adjust to the challenges of chronic illness, finding ways to cope and support one another.
One key finding is that the biggest changes in well-being tended to happen early—mostly within the first year of the study. After that, patterns tended to level off. This highlights an important opportunity: early support for families could make a lasting difference in how young people adapt.
The study also found that family factors matter. Higher parental stress, lower household income, and lower starting levels of well-being were linked to worse outcomes over time. These results underline the importance of family-centred care—support that considers the needs of the entire family, including siblings, not just the child with the illness.
