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Experience of families with very low birthweight children with neurologic sequelae
Insights
Families of children born with very low birthweight (VLBW) face significant challenges, including increased medical costs and major life changes. Support and better medical information are crucial for improving their quality of life.
Area of Science:
- Pediatrics
- Neonatology
- Developmental Pediatrics
Background:
- Very low birthweight (VLBW) infants face long-term health and developmental challenges.
- Assessing the quality of life for VLBW survivors and their families is essential for understanding their needs.
Purpose of the Study:
- To describe the quality of life for families of neurologically abnormal VLBW children compared to families of neurologically normal VLBW children.
- To identify the challenges and needs of families caring for VLBW survivors.
Main Methods:
- Qualitative interviews with parents of 22 neurologically abnormal and 15 neurologically normal VLBW children (born 1976-1979).
- Children assessed 3-7 years post-birth.
- Comparison of quality of life, medical costs, and family impact between the two groups.
Main Results:
- Neurologically abnormal VLBW children experienced more crying/screaming, higher medical costs (9 vs 2 families), and more rehospitalizations (61 vs 11).
- Families of abnormal VLBW children reported significant life changes due to caregiving demands.
- Both groups' parents reported heightened child appreciation, but future family planning was affected.
Conclusions:
- Families of neurologically abnormal VLBW children face substantial burdens impacting their quality of life.
- There is an urgent need for improved medical information, pediatrician education on preterm sequelae, and enhanced parent support networks.
Abstract:
To describe the quality of life for surviving very low birthweight (VLBW, less than 1.5 kg) children and their families, the authors interviewed the parents of 22 neurologically abnormal VLBW children, 3 to 7 years after their birth and compared them to the parents of 15 neurologically normal VLBW children. The infants were born between 1976 and 1979, (mean birthweight, 1.2 kg; mean gestational age, 30 weeks). They included three with spastic quadriplegia, 14 with spastic diplegia, and five with hydrocephalus. Eight children were not walking. Seven families rated their child's neurologic problem as severe, while 15 rated the problem as mild. Neurologically abnormal children tended to display more screaming and crying than the normal children. Cost of ongoing medical care was a problem for families of nine neurologically abnormal as compared with two families of normal children. The abnormal children required a total of 61 postneonatal rehospitalizations versus 11 in the normal group. Families of neurologically abnormal children reported on significant major changes in their personal lives for the care of their child. Both groups of parents reported heightened appreciation of their child. Plans for future children were affected in both. Parents identified an urgent need for better medical information, education of pediatricians regarding preterm development and neurologic sequelae, and better contact and support among parents themselves.