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Quality of Life of Caregivers of Very Low–Birthweight Infants

Authors

  • Pamela K. Donohue ScD, PA-C,

    Corresponding author
    1. 1Pamela K. Donohue is a Director of Clinical Research in the Division of Neonatology and an Assistant Professor and 2Marilee C. Allen is a Professor in the Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland; 3Elana Maurin is a Behavioral Science Fellow in the Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, Utah; 4Lee Kimzey is a Psychologist at the Behavioral Medicine Associates, LLC, North Platte, Nebraska; and 5Donna Strobino is a Professor in the Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
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  • 1 Elana Maurin PhD, MHS,

    1. 1Pamela K. Donohue is a Director of Clinical Research in the Division of Neonatology and an Assistant Professor and 2Marilee C. Allen is a Professor in the Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland; 3Elana Maurin is a Behavioral Science Fellow in the Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, Utah; 4Lee Kimzey is a Psychologist at the Behavioral Medicine Associates, LLC, North Platte, Nebraska; and 5Donna Strobino is a Professor in the Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
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  • 3 Lee Kimzey PhD,

    1. 1Pamela K. Donohue is a Director of Clinical Research in the Division of Neonatology and an Assistant Professor and 2Marilee C. Allen is a Professor in the Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland; 3Elana Maurin is a Behavioral Science Fellow in the Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, Utah; 4Lee Kimzey is a Psychologist at the Behavioral Medicine Associates, LLC, North Platte, Nebraska; and 5Donna Strobino is a Professor in the Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
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  • 4 Marilee C. Allen MD,

    1. 1Pamela K. Donohue is a Director of Clinical Research in the Division of Neonatology and an Assistant Professor and 2Marilee C. Allen is a Professor in the Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland; 3Elana Maurin is a Behavioral Science Fellow in the Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, Utah; 4Lee Kimzey is a Psychologist at the Behavioral Medicine Associates, LLC, North Platte, Nebraska; and 5Donna Strobino is a Professor in the Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
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  • and 2 Donna Strobino PhD 5

    1. 1Pamela K. Donohue is a Director of Clinical Research in the Division of Neonatology and an Assistant Professor and 2Marilee C. Allen is a Professor in the Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland; 3Elana Maurin is a Behavioral Science Fellow in the Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, Utah; 4Lee Kimzey is a Psychologist at the Behavioral Medicine Associates, LLC, North Platte, Nebraska; and 5Donna Strobino is a Professor in the Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
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  • This research was funded by the Thomas Wilson Sanitarium for the Children of Baltimore City, Baltimore, Maryland, USA.

Pamela K. Donohue, ScD, PA-C, Department of Pediatrics, Johns Hopkins Hospital, Nelson 2-133, 600 North Wolfe Street, Baltimore, MD 21287-3200, USA.

Abstract

ABSTRACT: Background: The health and developmental outcomes of very low–birthweight infants are unpredictable over the first year of life. This uncertainty may have meaningful consequences for parents’ quality of life. The objective of this study was to explore the quality of life of caregivers of these infants. Methods: Primary caregivers of very low–birthweight infants, 12 to 18 months old, who had been cared for in an inner-city hospital were enrolled in the study. Primary caregivers of full-term infants of the same age served as a comparison group. During a telephone survey, participants answered questions about their quality of life, mental and physical health, living arrangements, and child’s health. Results: Eighty-three caregivers of very low–birthweight infants and 84 caregivers of full-term infants were enrolled in the study. Demographic characteristics of the caregivers were similar between the groups. Forty-five percent of caregivers of very low–birthweight infants reported that their child had an ongoing medical problem compared with 23 percent of caregivers of full-term infants. Both groups of caregivers reported significant physical and mental health problems. Caregivers of very low–birthweight infants reported higher quality of life than did caregivers of full-term infants, but the difference did not reach statistical significance. Conclusions: Although very low–birthweight infants had poorer health and required significantly more health care resources than full-term infants, caregivers’ quality of life did not differ between the two groups. Caregivers of both groups of infants reported substantial mental and physical health problems but perceived good quality of life. These data will aid parents, physicians, and policy makers as they struggle to make decisions concerning care of high-risk, costly, very low–birthweight infants. (BIRTH 35:3 September 2008)

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