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The process of family management when a baby is diagnosed with a lethal congenital condition

Gwen R Rempel1, Catriona Blythe, Laura G Rogers

  • 1University of Alberta, Edmonton, Alberta, Canada. gwen.rempel@ualberta.ca

Journal of Family Nursing
|January 7, 2012
PubMed

Insights

The Family Management Style Framework (FMSF) helps parents manage infant illness. Key dimensions like Illness View and Child Identity are crucial for managing complex neonatal conditions.

Area of Science:

  • Pediatric Medicine
  • Family Studies
  • Psychology

Background:

  • Parental adaptation to infant's lethal congenital condition presents unique challenges.
  • Understanding family management processes is vital for effective support.
  • Previous research focused on chronic conditions, necessitating adaptation for lethal diagnoses.

Purpose of the Study:

  • To analyze family management styles in infants with lethal congenital conditions.
  • To apply the Family Management Style Framework (FMSF) to secondary data.
  • To identify key dimensions influencing parental management of infant illness.

Main Methods:

  • Secondary data analysis of 55 interviews with parents of infants with lethal congenital conditions.
  • Directed content analysis guided by a coding structure from family management dimensions.
  • Utilized the Family Management Style Framework (FMSF) as a conceptual basis.

Main Results:

  • The FMSF effectively differentiated family management processes from illness onset through post-surgery.
  • Illness View and Child Identity dimensions were central to parents' management capacity.
  • The framework provided insights into family adaptation during critical neonatal periods.

Conclusions:

  • The FMSF is a valuable tool for understanding family management of lethal congenital conditions.
  • Illness View and Child Identity are critical parental perspectives in managing infant illness.
  • Findings offer direction for clinical interventions and evaluation in neonatal care.

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