Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents’ experience and caring needs

OBJECTIVE This study was aimed to explore parents' experience of assisting children affected by tuberous sclerosis complex (TSC) with subependymal giant-cell astrocytoma (SEGA) manifestation, in order to understand their caring needs and expectation of support. SETTING AND PROCEDURE The study was designed according to the qualitative method of interpretative description and implied two sequential phases of data collection. The first phase was based on in-depth interviews with 18 Italian caregivers of children living with TSC. The second phase of the research was based on an online forum with 30 caregivers of children living with TSC. PARTICIPANTS 48 Italian caregivers, assisting patients with TSC with SEGA manifestation have been involved in the study. 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.