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Titre : | Using online health communication to manage chronic sorrow : mothers of children with rare diseases speak (2015) |
Auteurs : | Adriana D. Glenn, Auteur |
Type de document : | Article |
Dans : | Journal of Pediatric Nursing (Vol. 30, n°1, January/February 2015) |
Article en page(s) : | p. 17-24 |
Langues: | Anglais |
Descripteurs : |
HE Vinci Communication ; Documentation ; Émotions ; Empowerment ; Gestion ; Interaction sociale ; Internet ; Mères ; Psychologie ; Recherche ; Recherche qualitative ; Récits personnels ; Socialisation ; Soins ; Stress psychologique |
Mots-clés: | coping ; syndrome d'alagille |
Résumé : |
Only half of the mothers experienced chronic sorrow. The other half experienced feelings of fright, anger or being overwhelmed that the researcher classified as unpleasant feelings. One overarching theme emerged in the interviews: online communication was essential to the mothers in managing chronic sorrow or unpleasant feelings. Four essential themes and nine sub-themes that contributed to the development of the overarching theme. The four themes were connectedness, online triggers, empowerment, and seasons of online use. Mothers of children with rare chronic diseases used online communication differently. 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. |
Disponible en ligne : | Non |
Exemplaires (1)
Cote | Support | Localisation | Section | Disponibilité |
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REV | Périodique papier | Woluwe | Espace revues | Consultation sur place uniquement Exclu du prêt |