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The Impact of Very Low-Birth-Weight Infants on the Family Is Long Lasting: A Matched Control Study

The Impact of Very Low-Birth-Weight Infants on the Family Is Long Lasting: A Matched Control Study Abstract 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.(Arch Pediatr Adolesc Med. 1995;149:151-158) References 1. Robertson C, Hrynchyshyn G, Etches P, Pain K. Population-based study of the incidence, complexity and severity of neurologic disability among survivors weighing 500 through 1250 g at birth: a comparison of two birth cohorts . Pediatrics . 1992;90:750-755. 2. Saigal S, Szatmari P, Rosenbaum P, Campbell D, King S. Cognitive abilities and school performance of extremely low birth weight children and matched term control children at age 8 years: a regional study . J Pediatr . 1990:118: 751-760.Crossref 3. Saigal S, Rosenbaum P, Szatmari P, Campbell D. Learning disabilities and school problems in a regional cohort of extremely low birth weight (<1000g) children: a comparison with term controls . J Dev Behav Pediatr . 1991;12:294-300.Crossref 4. Casiro OG, Moddemann DM, Stanwick RS, Cheang MS. The natural history and predictive value of early language delays in very low birth weight infants . Early Hum Dev . 1991;26:45-50.Crossref 5. Largo RH, Molinari L, Comenale Pinto L, Weber M, Duc G. Language development of term and preterm children during the first five years of life . Dev Med Child Neurol . 1986;28:333-350.Crossref 6. Rivers A, Caron B, Hack M. Experience of families with very low birthweight children with neurologic sequelae . Clin Pediatr . 1987;26:223-230.Crossref 7. Lee SK, Penner PL, Cox M. Impact of very low birth weight infants on the family and its relationship to parental attitudes . Pediatrics . 1991;88:105-109. 8. Knobloch H, Pasamanick B. Gesell and Amatruda's Developmental Diagnosis . New York, NY: Harper & Row Publishers Inc; 1974. 9. Stein REK, Riessman CK. The development of an impact on family scale: preliminary findings . Med Care . 1980;18:465-472.Crossref 10. Kitchen H, Ford GW, Rickards AL, Lissinden JV, Ryan MM. Children of birth weight <1000 g: changing outcome between ages 2 and 5 years . J Pediatr . 1987;110:283-288.Crossref 11. McCormick MC, Stemmler MM, Bernbaum JC, Farra AC. The very low birth weight transport goes home: impact on the family . J Dev Behav Pediatr . 1986; 7:217-223.Crossref 12. Cowan PA, Cowan CP. Becoming a family: research and intervention . In: Sigel I, Brody E, eds. Methods of Family Research . Hillsdale, NJ: Lawrence Erlbaum Assoc. 1990;1-51. 13. Hack M, Weissman B, Breslau N, Klein N, Borawski-Clark E, Fanaroff A. Health of very low birth weight children during their first 8 years . J Pediatr . 1993; 122:887-892.Crossref 14. McCormick MC, Bernbaum JC, Eisenberg JM, Kustra SL, Finnegan E. Costs incurred by parents of very low birth weight infants after an initial neonatal hospitalization . Pediatrics . 1991;88:533-541. 15. Drillien CM, Thomson AJM, Burgoyne K. Low birthweight children at early school-age: a longitudinal study . Dev Med Child Neurol . 1980;22:26-47.Crossref 16. Klein N, Hack M, Gallagher J, Fanaroff AA. Preschool performance of children with normal intelligence who were very low birth weight infants . Pediatrics . 1985;75:531-537. 17. Casiro O, Kamaya V, Moddemann D, Stanwick R, Boyes D, Ridd D. Cognitive weaknesses in 'normal' very low birth weight children compared to fullterm controls at 7 years of age . Pediatr Res . 1993;33( (pt 2) ):257A. 18. Sell EJ, Gaines JA, Gluckman C, Williams E. Early identification of learning problems in neonatal intensive care graduates . AJDC . 1985;139:460-463. 19. Pharaoh POD, Stevenson RC, Cooke RWI, Sandu B. Costs and benefits of neonatal intensive care . Arch Dis Child . 1988;63:715-718.Crossref 20. Yu VY, Davis NG, Mercado MF, Bajuk B, Astbury J. Subsequent pregnancy following the birth of an extremely low birth-weight infant . Aust N Z J Obstet Gynecol . 1986;26:115-119.Crossref 21. Hergenroeder A, Taylor PM, Rogers KD, Taylor FH. Neonatal characteristics of maltreated infants and children . AJDC . 1985;139:295-298. 22. Slater MA, Naqvi M, Andrew L, Haynes K. Neurodevelopment of monitored versus nonmonitored VLBWI: the importance of family influences . J Dev Behav Pediatr . 1987;8:278-285.Crossref 23. Shonkoff JP, Hauser-Cram P, Wyngaarden Krauss M, Christofk-Upshur C. Development of Infants With Disabilities and Their Families . Chicago, Ill: Monographs of the Society for Research in Child Development. 1992;57; No. (230) : 78-81. 24. Casiro OG, McKenzie ME, McFadyen L, et al. Earlier discharge with community-based interventions for low birth weight infants: a randomized trial . Pediatrics . 1993:92:128-134. 25. Stein REK, Jessop DJJ. What diagnosis does not tell: the case for a noncategorical approach to chronic illness in childhood . Soc Sci Med . 1989;29:769-778.Crossref http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Archives of Pediatrics & Adolescent Medicine American Medical Association

The Impact of Very Low-Birth-Weight Infants on the Family Is Long Lasting: A Matched Control Study

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Publisher
American Medical Association
Copyright
Copyright © 1995 American Medical Association. All Rights Reserved.
ISSN
1072-4710
eISSN
1538-3628
DOI
10.1001/archpedi.1995.02170140033005
Publisher site
See Article on Publisher Site

Abstract

Abstract 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.(Arch Pediatr Adolesc Med. 1995;149:151-158) References 1. Robertson C, Hrynchyshyn G, Etches P, Pain K. Population-based study of the incidence, complexity and severity of neurologic disability among survivors weighing 500 through 1250 g at birth: a comparison of two birth cohorts . Pediatrics . 1992;90:750-755. 2. Saigal S, Szatmari P, Rosenbaum P, Campbell D, King S. Cognitive abilities and school performance of extremely low birth weight children and matched term control children at age 8 years: a regional study . J Pediatr . 1990:118: 751-760.Crossref 3. Saigal S, Rosenbaum P, Szatmari P, Campbell D. Learning disabilities and school problems in a regional cohort of extremely low birth weight (<1000g) children: a comparison with term controls . J Dev Behav Pediatr . 1991;12:294-300.Crossref 4. Casiro OG, Moddemann DM, Stanwick RS, Cheang MS. The natural history and predictive value of early language delays in very low birth weight infants . Early Hum Dev . 1991;26:45-50.Crossref 5. Largo RH, Molinari L, Comenale Pinto L, Weber M, Duc G. Language development of term and preterm children during the first five years of life . Dev Med Child Neurol . 1986;28:333-350.Crossref 6. Rivers A, Caron B, Hack M. Experience of families with very low birthweight children with neurologic sequelae . Clin Pediatr . 1987;26:223-230.Crossref 7. Lee SK, Penner PL, Cox M. Impact of very low birth weight infants on the family and its relationship to parental attitudes . Pediatrics . 1991;88:105-109. 8. Knobloch H, Pasamanick B. Gesell and Amatruda's Developmental Diagnosis . New York, NY: Harper & Row Publishers Inc; 1974. 9. Stein REK, Riessman CK. The development of an impact on family scale: preliminary findings . Med Care . 1980;18:465-472.Crossref 10. Kitchen H, Ford GW, Rickards AL, Lissinden JV, Ryan MM. Children of birth weight <1000 g: changing outcome between ages 2 and 5 years . J Pediatr . 1987;110:283-288.Crossref 11. McCormick MC, Stemmler MM, Bernbaum JC, Farra AC. The very low birth weight transport goes home: impact on the family . J Dev Behav Pediatr . 1986; 7:217-223.Crossref 12. Cowan PA, Cowan CP. Becoming a family: research and intervention . In: Sigel I, Brody E, eds. Methods of Family Research . Hillsdale, NJ: Lawrence Erlbaum Assoc. 1990;1-51. 13. Hack M, Weissman B, Breslau N, Klein N, Borawski-Clark E, Fanaroff A. Health of very low birth weight children during their first 8 years . J Pediatr . 1993; 122:887-892.Crossref 14. McCormick MC, Bernbaum JC, Eisenberg JM, Kustra SL, Finnegan E. Costs incurred by parents of very low birth weight infants after an initial neonatal hospitalization . Pediatrics . 1991;88:533-541. 15. Drillien CM, Thomson AJM, Burgoyne K. Low birthweight children at early school-age: a longitudinal study . Dev Med Child Neurol . 1980;22:26-47.Crossref 16. Klein N, Hack M, Gallagher J, Fanaroff AA. Preschool performance of children with normal intelligence who were very low birth weight infants . Pediatrics . 1985;75:531-537. 17. Casiro O, Kamaya V, Moddemann D, Stanwick R, Boyes D, Ridd D. Cognitive weaknesses in 'normal' very low birth weight children compared to fullterm controls at 7 years of age . Pediatr Res . 1993;33( (pt 2) ):257A. 18. Sell EJ, Gaines JA, Gluckman C, Williams E. Early identification of learning problems in neonatal intensive care graduates . AJDC . 1985;139:460-463. 19. Pharaoh POD, Stevenson RC, Cooke RWI, Sandu B. Costs and benefits of neonatal intensive care . Arch Dis Child . 1988;63:715-718.Crossref 20. Yu VY, Davis NG, Mercado MF, Bajuk B, Astbury J. Subsequent pregnancy following the birth of an extremely low birth-weight infant . Aust N Z J Obstet Gynecol . 1986;26:115-119.Crossref 21. Hergenroeder A, Taylor PM, Rogers KD, Taylor FH. Neonatal characteristics of maltreated infants and children . AJDC . 1985;139:295-298. 22. Slater MA, Naqvi M, Andrew L, Haynes K. Neurodevelopment of monitored versus nonmonitored VLBWI: the importance of family influences . J Dev Behav Pediatr . 1987;8:278-285.Crossref 23. Shonkoff JP, Hauser-Cram P, Wyngaarden Krauss M, Christofk-Upshur C. Development of Infants With Disabilities and Their Families . Chicago, Ill: Monographs of the Society for Research in Child Development. 1992;57; No. (230) : 78-81. 24. Casiro OG, McKenzie ME, McFadyen L, et al. Earlier discharge with community-based interventions for low birth weight infants: a randomized trial . Pediatrics . 1993:92:128-134. 25. Stein REK, Jessop DJJ. What diagnosis does not tell: the case for a noncategorical approach to chronic illness in childhood . Soc Sci Med . 1989;29:769-778.Crossref

Journal

Archives of Pediatrics & Adolescent MedicineAmerican Medical Association

Published: Feb 1, 1995

References