title: Using online health communication to manage chronic sorrow: mothers of children with rare diseases speak.
abstract: Families affected by rare disease experience psychosocial reactions similar to families with prevalent chronic diseases. The ability to respond and manage the condition depends on psychosocial factors. This phenomenological study of 16 mothers of children with Alagille syndrome explored their lived experience in using online health communications to manage their chronic sorrow. Data consisted of semi-structured interviews analyzed using techniques described by van Manen. Analysis yielded four essential themes: connectedness, online triggers, empowerment, and seasons of online use contributed to online communication essential to a rare disease community. Findings suggest mothers need emotional support and help accessing appropriate online resources.
authors.affiliation: Marymount University, Arlington, VA. Electronic address: adriana.glenn@marymount.edu.
authors.forename: Adriana D
authors.initials: AD
authors.lastname: Glenn
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D016738:Alagille Syndrome / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy; D002648:Child; D002908:Chronic Disease; D005260:Female; D006117:Grief; D058015:Health Communication / Q000379:methods*; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data; D007407:Interviews as Topic; D008297:Male; D008490:Medical Informatics / Q000379:methods*; D009034:Mother-Child Relations / Q000523:psychology*; D009035:Mothers / Q000523:psychology; D035583:Rare Diseases; D012944:Social Support
keywords: Chronic sorrow; Mothers; Phenomenology; Rare disease; Social support; e-Health communication