Sharenting and Parenting Support Needs of Mothers Raising Children with Rare Diseases

Abstract

Objectives: This study investigates the current state and subjective meaning of “sharenting” using social media by mothers raising children with rare diseases. In addition, the future direction of parenting social support for parents using ICTs was explored.Methods: Among the mothers raising a children with rare diseases, those who informed their children of their diseases with hashtags(#) and shared their daily lives on social media, such as Instagram and Facebook, were purposefully sampled. Nine mothers with children age one to seven years with different rare diseases participated in the in-depth interviews.Results: Mothers raising children with rare diseases with low prevalence have met various parenting support needs through sharenting. In addition, it was found that many mothers were willing to support other parents with similar experiences by actively sharing their information or daily lives. In other words, sharenting not only enhances the positive cognitive and emotional experiences of mothers raising children with rare diseases but also provides an opportunity to contribute to society, ultimately helping support healthy parenting. Moreover, mothers benefited from various support that transcends time and space through sharenting using social media. Thus, social support for parents in need should be delivered through both traditional and digitalized support integrated with ICTs.Conclusion: To support the healthy development of a children with rare diseases, it is necessary to support the high quality of life of parents and their children. By integrating ICTs, individualized and customized social services can be flexibly provided to families and children with rare diseases that have been neglected.