Results When a TSC diagnosis is made, the whole family is affected psychologically. TSC has a great impact on families’ quality of life and on their ability to cope with the disease and support the child’s ability to recover and reach an acceptable level of well-being. Caregivers report the experience of losing control and the feeling of loneliness and abandon from the healthcare system.
Conclusion and practice implications Families of children affected by TSC need targeted psychosocial assistance in order to support patients and caregivers and facilitate their social integration.