A qualitative investigation of fathers' experiences of looking after a child with a life-limiting illness, in process and in retrospect

Clin Child Psychol Psychiatry. 2007 Oct;12(4):549-65. doi: 10.1177/1359104507080981.


Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Attitude to Death
  • Caregivers / psychology
  • Child
  • Chronic Disease / psychology*
  • Father-Child Relations*
  • Fathers / psychology*
  • Female
  • Gender Identity*
  • Grief
  • Home Nursing / psychology
  • Humans
  • Interview, Psychological
  • Life Change Events
  • Male
  • Marriage / psychology
  • Palliative Care / psychology*
  • Professional-Family Relations
  • Social Support
  • Terminal Care / psychology*