Palliative and Supportive Care

Original Articles

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

Alison Rodrigueza1 c1 and Nigel Kinga2

a1 Department of Behavioural Sciences, School of Human and Health Sciences, University of Huddersfield, Queensgate, Huddersfield, United Kingdom

a2 Department of Behavioural Sciences and Applied Psychology Research Group, School of Human and Health Sciences, University of Huddersfield, Queensgate, Huddersfield, United Kingdom

ABSTRACT

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.

(Received March 31 2008)

(Accepted April 26 2008)

Correspondence:

c1 Address correspondence and reprint requests to: Alison Rodriguez, Department of Behavioural Sciences, School of Human and Health Sciences, University of Huddersfield, Queensgate, Huddersfield, HD1 3DH, United Kingdom. E-mail: a.m.rodriguez@hud.ac.uk