Longing: The Lived Experience of Spirituality in Adolescents with Duchenne Muscular Dystrophy

Although much has been written regarding ill adolescents, research has not described their spiritual response. The purpose of this descriptive phenomenological study was to describe the lived experiences of spirituality in adolescents with Duchenne muscular dystrophy using van Manen's phenomenological method. Findings from nine teens showed that the essential theme of spirituality was “longing,” the strong desire for something unattainable. Consistent with Reed's (1992) paradigm for understanding spirituality, participants mediated their longing through “Connecting with others, self, and beyond self.” These findings support the need for nursing to assess spirituality in teens and determine developmentally appropriate interventions to ameliorate longing.

Key words: Adolescent, Spirituality, Duchenne muscular dystrophy, Longing, Connectedness