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The impact of very low-birth-weight infants on the family is long lasting. A matched control study
C M Cronin1, C R Shapiro, O G Casiro
1Section of Neonatology, St Boniface General Hospital, Winnipeg.
Insights
Parental stress from having very low-birth-weight infants (VLBWIs) persists long-term, impacting families financially and socially. Support services are crucial, especially for low-income families with children facing health challenges.
Area of Science:
- Neonatal care and developmental pediatrics
- Family psychology and stress research
- Public health and healthcare policy
Background:
- Long-term parental stress is a significant concern for infants with very low birth weight (VLBWIs).
- Understanding the enduring impact on families is crucial for effective support.
- Previous research indicates potential lasting effects, but long-term data is needed.
Purpose of the Study:
- To investigate the long-term hypothesis that parental stress associated with very low-birth-weight infants (VLBWIs) is enduring.
- To quantify the impact on families across various domains, including financial, social, and personal well-being.
- To identify factors influencing the level of parental stress and explore attitudes towards neonatal care.
Main Methods:
- A matched case-control study design was employed.
- Parents of 96 Manitoban very low-birth-weight infants (VLBWIs) were compared to parents of full-term controls.
- Mailed questionnaires assessed familial impact, parental stress, and attitudes towards treating VLBWIs.
Main Results:
- Parents of VLBWIs reported significantly higher financial burden, familial/social impact, personal strain, and mastery.
- Increased impact was observed when children had functional handicaps or lower adaptive developmental quotients (70-85).
- Parental stress levels remained consistent over time and were associated with lower income and education.
Conclusions:
- The birth and care of a very low-birth-weight infant (VLBWI) leads to prolonged parental stress, irrespective of socioeconomic status or healthcare system.
- Healthcare providers require enhanced awareness to address the medical and social needs of these families.
- Targeted support services are recommended for low-income, less educated parents of children with functional handicaps.
Objective:
To test the hypothesis that parental stress associated with long-term morbidity of very low-birth-weight infants (VLBWIs) is long lasting.
Design:
Matched case-control study.
Setting:
High-risk newborn follow-up program, Winnipeg, Manitoba.
Participants:
Parents of 96 Manitoban VLBWIs born from July 1986 through June 1990, compared with parents of full-term controls matched for age, sex, race, domicile, singleton or multiple pregnancy, and birth order.
Main Outcome Measures:
Mailed questionnaire, including Stein's Impact on Family Scale, positive impact of parenthood, and attitudes toward treating VLBWIs.
Results:
Families were demographically similar. The parents of VLBWIs had higher scores for financial burden, familial/social impact, personal strain, and mastery (P < .0001). The parents of VLBWIs experienced more impact when children had a functional handicap or low adaptive developmental quotient. Scores were highest when the adaptive developmental quotient was 70 to 85. High scores were associated with low family income and less parental education. Impact did not change over time. Only half of the parents in each group felt that "doctors should try to save every baby." The parents of VLBWIs felt more strongly that cost should never enter into the decision to treat a tiny baby (P < .005). The families of VLBWIs expressed a stronger desire for more children (P < .01), but control families were more likely to have given birth again (46.3% vs 28.2%).
Conclusions:
The birth and upbringing of a VLBWI is associated with more long-term stress, even for well-educated nuclear families whose health care is financed by government. Caregivers need increased awareness of the needs of these families so that their medical and social needs are met effectively. Support services should be targeted toward low income, poorly educated parents whose children have functional handicaps.