Using Online Health Communication to Manage Chronic Sorrow: Mothers of Children with Rare Disease Speak




Glenn, Adriana Drake

Journal Title

Journal ISSN

Volume Title



People with rare diseases share certain common psychosocial characteristics that provide opportunities for research studying these characteristics as they relate to impacting large groups of people. Similar to families coping with more prevalent chronic diseases, families dealing with rare diseases may experience common reactions upon receiving a diagnosis. The ability of those affected by rare disease to respond and manage the condition depends upon psychosocial factors such as sorrow and coping skills. Online communication has profoundly impacted the rare disease community. Using the theory of chronic sorrow as a framework, the purpose of this qualitative study was to explore the lived experience of mothers of children with Alagille syndrome in using online health communications to manage their chronic sorrow. Analysis was conducted by utilization of van Manen's (1990) interpretive hermeneutic approach to further elucidate the meaning of the mothers' experience. Sixteen mothers of children with the rare disease Alagille syndrome were interviewed using a semi-structured interview format. The overarching theme that emerged was Online Communication is Essential to a Rare Disease Community. In addition, four interrelated themes were identified which provided a more complete description of the lived experiences of these mothers. Theme one, Connectedness captures the mothers' express need to participate in an online community. Theme two, Online Triggers, describes the online experiences that initiated unpleasant feelings. Theme three, Empowerment, reveals the value and importance in obtaining knowledge and information from online communication. Theme four, Seasons of Online Use emerged to describe the notable variations in online communication behaviors with regard to information seeking according to the disease trajectory. Mothers of children with Alagille syndrome actively engage in online communication. Using online communication helped these mothers manage unpleasant feelings and chronic sorrow. However, seeking online communication also had the ability to trigger the aforementioned emotions. Implications for practice, education, research and policy were discussed in an attempt to create an awareness of the need to address and further explore psychosocial needs of the mothers within the context of online communication.



Nursing, Communication, Alagille syndrome, Chronic sorrow, Electronic communication, Online communication, Rare disease, Social support