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

ABSTRACT:

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

SUBMITTER: Graffigna G 

PROVIDER: S-EPMC3855572 | biostudies-literature | 2013 Dec

REPOSITORIES: biostudies-literature