The lived experience of parenting a child with a life-limiting condition: A focus on the mental health realm

Objective: As medical technology has improved, there has been a marked increase in the numbers of children with life-limiting conditions being managed in the community. Few studies have evaluated the life worlds of the parents of these children. However, there have been studies that have reported feelings of isolation and depression among mothers. This article reports a study that highlights the mental health implications of the lived experience of parenting a child with a life-limiting condition.

Method: Semistructured interviews were conducted with 10 parents of children with life-limiting conditions and analyzed using a phenomenological method.

Results: The essential meaning of the phenomenon “the lived experience of parenting a child with a life limiting condition” is understood as a full-time emotional struggle involving six continuous constituents: inner drive, feeling responsible, psychological effects, threatened self image, social withdrawal, and a fear of reaching the bottom line.

Significance of results: Very little clinical attention is focused upon the wider issues that affect parents dealing with caring for a child with a life-limiting condition.