Abstract:
This study explores the experiences of four adults who reflect upon their
experiences, retrospectively, of being an adolescent living with an ostomy. A
narrative research approach guided the collection and analysis of data elicited using
in-depth interview, presenting each account in the form of a story. The stories serve
as a representation of each person's experiences that enables and enriches their
understanding.
A preliminary literature search revealed a paucity of research investigating the
psychological and emotional concerns of adolescents living with an ostomy. This is
cause for concern in respect to healthcare, as the knowledge provided by these
missing voices does not reach the ears of health professionals. The ability to provide
care that is responsive to the needs of adolescents living with an ostomy is therefore
diminished, and may have a detrimental effect on coping and adjustment for these
individuals.
Six core themes emerged that communicate the essence of their experience. 1) stolen
adolescence: the struggle for normalcy; 2) a puppet at the hand of fate: the struggle
to gain control; 3), through the looking glass: the person behind the ostomy; 4) the
soul held captive by the body; 5) never to walk alone: the struggle for independence
and self reliance; 6) disconnection: the experience of loneliness. The
interrelationship of these core themes exists as the embodiment of the experiential
whole, metaphorically entitled "The Adolescent Interrupted."This metaphorical
description symbolises the cumulative effect of disruption, divergence, and
disconnection from normal adolescent life as perceived by the participants in this
study.
This research contributes to nurses understanding of the physical, psychological, and
emotional impact that living with an ostomy has on the adolescent. The findings
demonstrate the importance of providing holistic care that addresses, and is
responsive to the unique needs of these adolescents in order to lessen the negative
impact of the experience and effect positive change.
