Journal of Pediatric Nursing
Rare diseases pose an intimidating challenge for both families and medical professionals: they are inherently subject to shortages of information and medical expertise. Adriana Glenn acknowledges that in too many situations, this places immense strain on the family sphere; in many cases the mother especially. However Glenn notes that increasingly online communication methods are allowing mothers to manage their struggles and collectively pool their experience.
This study is built on a series on interviews with 16 mothers of children with the rare Alagille syndrome. It concludes that the "e-Health" environment has great potential to improve the coping strategies of families in the situations rare conditions impose. Through her interviews Glenn notes that themes of connectedness and empowerment make online communication "essential" to the rare disease community. Moreover Glenn argues that the success of the internet is a result of inadequate emotional support for mothers, and that support in accessing the correct online materials could help the situation further.
Author: Adriana D. Glenn, Article first published online: 13 SEP 2014
Volume 30, Issue 1, Pages 17–24, January–February 2015.