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Published on: October 18, 2022

The child with a tracheostomy and gastrostomy: parental stress and coping in the home--a pilot study

Barbara A Montagnino1, Rizalina V Mauricio

  • 1Progressive Care Unit, Texas Children's Hospital, Houston, TX, USA.

Pediatric Nursing
|December 14, 2004
PubMed

Insights

Parenting a technology-dependent child with a tracheostomy and gastrostomy causes stress, particularly regarding social interactions. Caregivers cope financially but need better home care plans including respite services.

Area of Science:

  • Pediatric Nursing
  • Family Caregiving
  • Home Healthcare Technology

Background:

  • Home care for technology-dependent children presents unique challenges.
  • Children requiring device-based respiratory support and feeding tubes (tracheostomy and gastrostomy) pose significant caregiving demands.
  • Parental stress is a recognized outcome of managing complex medical needs at home.

Purpose of the Study:

  • To identify stressors experienced by primary caregivers of children with tracheostomies and gastrostomies.
  • To explore coping strategies employed by these caregivers.
  • To inform the development of supportive home care interventions.

Main Methods:

  • Retrospective pilot study design.
  • Convenience sample of 50 families with children receiving tracheostomy and gastrostomy care.
  • Utilized the Impact on Family Scale, Family Crisis Oriented Personal Evaluation Scale, and demographic tool.

Main Results:

  • Eighteen primary caregivers (36%) completed the study.
  • Caregivers reported coping effectively and perceived financial stability.
  • Significant disruption in social interactions, both within the family and externally, was identified.

Conclusions:

  • Caregivers of technology-dependent children with tracheostomies and gastrostomies experience social disruption despite effective coping and financial stability.
  • There is a clear need for enhanced home care plans.
  • Inclusion of respite services in home care plans is recommended to mitigate caregiver burden.

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