New Publication

Oliver Gruebner,  Afua van Haasteren, Anna Hug, Suzanne Elayan, Martin Sykora, Emiliano Albanese, John Naslund, Markus Wolf, Marta Fadda, Michael von Rhein


Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions, and as a result, information (e.g., on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding about the platforms that are most frequently used or preferred among parents and caregivers of children living with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation with these tools.