What this study looked at
CLN2 disease (a form of Batten disease) places heavy demands not only on affected children but on the families who care for them. This study used face-to-face, mixed-method surveys with 19 families caring for 23 affected children in the UK and Germany to measure the wellbeing and quality-of-life impact of that care.
Key takeaways
- Caregivers reported lower health-related quality of life than age- and gender-matched people in the general population.
- They spent far more hours caring than the parents of a healthy child, and reported stress, back pain and lost sleep.
- Families described a significant financial burden and reduced life satisfaction, with those caring for children in the late stage of the disease the most affected.
Why it matters
It makes the case for emotional, practical and financial support for the whole family, not only the child who is unwell.
