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Paediatric spinal fusion surgery and the transition to home-based care: provider expectations and carer experiences

Juliana G Barnard1, Karen Albright, Elaine H Morrato

  • 1Children's Outcomes Research Program, Children's Hospital Colorado, Aurora, CO, USA.

Health & Social Care in the Community
|May 8, 2013
PubMed

Insights

This study on pediatric spine surgery found that while care programs improve surgical preparation, they often underestimate the emotional toll on children and families during recovery. Enhanced support is needed for physical, social, and emotional needs.

Area of Science:

  • Pediatric Surgery
  • Healthcare Management
  • Qualitative Research

Background:

  • Over 12 million children in the US have special healthcare needs (CSHCNs).
  • CSHCNs often require specialized care for chronic conditions.
  • Spine surgery for severe scoliosis presents unique challenges for CSHCNs and their families.

Purpose of the Study:

  • To qualitatively investigate patient and family experiences with a pediatric spine surgical care program.
  • To understand the transition from hospital to home-based care after spinal fusion surgery.
  • To identify areas for improvement in supporting CSHCNs and their families throughout the surgical journey.

Main Methods:

  • Conducted 30 semi-structured interviews with surgical team members and family carers.
  • Collected data in 2008-2009 from participants who underwent surgery in 2006.
  • Utilized reflexive team and content analysis for data interpretation.

Main Results:

  • The program effectively improved pre-operative evaluations and hospital discharge preparation.
  • Spinal fusion surgery and home recovery had a profound emotional impact on patients and carers.
  • Providers underestimated the emotional trauma and post-discharge support needs of families.

Conclusions:

  • Surgical care programs need to better assess and support the physical, social, and emotional burdens of CSHCNs and their families.
  • There are discrepancies between provider and carer expectations regarding surgical outcomes and recovery.
  • Enhanced emotional and practical support during at-home recovery is crucial for positive patient and family experiences.

Keywords:
children's experience of health-carehome carepaediatric carepsychological aspects of health-carequalitative research

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