Posttraumatic stress and growth in mothers of children with genetic diseases in early childhood: a protocol of a longitudinal study

IntroductionDiagnosing a childs disease is a traumatic event that impacts parents psychological well-being, mental health, and is associated with burden. This protocol of a longitudinal study aims to observe posttraumatic stress levels in mothers of children with a genetic disease. It will also explore posttraumatic growth in these mothers and identify key predictors of such growth. Materials and MethodsThe project is a sequential study that integrates both cross-sectional and longitudinal designs. The study will approach mothers of children aged 0 to 3 years who have been diagnosed with a genetic disease by a specialist before their first birthday. Two measurements will be taken with a 6-month interval between the first and second assessments. The study will use a questionnaire-based approach. The research assessment will be conducted using: the Impact of Event Scale-Revised (IES-R), the Posttraumatic Growth Inventory (PTGI), the Zimbardo Time Perspective Inventory (ZTPI), the Parental Burnout Assessment (PBA), the Kansas Inventory of Parental Perceptions (KIPP), and the Family Resilience Assessment Scale (FRAS). DiscussionThis study may provide valuable insights into how mothers cope with a childs genetic disease, both from a time perspective and a parental perspective. It could inform the development of targeted support strategies to help mothers manage the challenges of raising a child with a genetic disease, particularly in areas such as crisis intervention or therapy. We hypothesize that improving the mothers time perspective could improve the mothers well-being and thus enhance the overall functioning of the family system and support the childs development.