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

  • Alison Rodriguez (a1) and Nigel King (a2)

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.


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


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.

Corresponding author
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:
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This list contains references from the content that can be linked to their source. For a full set of references and notes please see the PDF or HTML where available.

F. Andrews & P. Hood (2003). Shared care: Hospital, hospice and home. Peadiatric Nursing, 15, 2022.

N.C. Frank , R.T. Brown , R.L. Blaint , & V. Bunke (2001). Predictors of affective response of mothers and fathers of children with cancer. Psycho-Oncology, 10, 293304.

R. Harding & I. Higginson (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17, 6374.

A.F. Patenaude & B. Last (2001). Cancer and children: Where are we coming from? Where are we going? Psycho-oncology, 10, 281283.

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Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
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