Original ArticlesImpact of extreme prematurity on families of adolescent children☆,☆☆
Section snippets
Parent Respondents
Parents of ELBW survivors born between 1977 and 1982 in a geographically defined region in central west Ontario and monitored longitudinally from birth were approached to participate in the study.1 Parents of children born at term were recruited when the children were 8 years old from a random list of children obtained through the Directors of the Hamilton Public and Roman Catholic Separate School Boards and matched for age, sex, and social class to the index children.3 At the time of the study
Demographic Characteristics of Respondents
Parents of 145 (86%) of 169 ELBW survivors and 123 (85%) of 145 parents of term children participated in the study (Table I).Empty Cell Parents ELBW group (n = 145) Control group (n = 123) Respondents, mothers (%) 82 94 Maternal age, mean (SD) 41 (6) 43 (5) Born in Canada (%) 76 64 Two-parent families (%) 89 85 Have children with impairments (%) 26 2 Socioeconomic status16 (%) I, II 39 44 III 30 31 IV, V 31 25 Maternal education (%) Secondary school or less 59 47 Some
Discussion
Our study adds to the growing literature on the impact of prematurity on the family and on the attitudes of parents toward active treatment of infants at high risk. This large-scale controlled study includes the impact on the family at adolescence. Furthermore the parents of the ELBW cohort were a population-based sample with a high response rate, thus eliminating the sampling bias inherent in some studies. It is possible that because several years have elapsed, parents may have underestimated
Acknowledgements
We are most grateful to the parents of teenagers in the premature and control groups for taking the time and effort in completing the questionnaires. Dr. Shoo Lee and Dr. M. Cox were generous in sharing the questionnaires and providing advice. We thank Lorraine Hoult for her participation in the research activities and Jennifer Isaacs for secretarial assistance. We acknowledge the support of the Department of Pediatrics, McMaster University.
References (31)
- et al.
Decreased disability rate among 3-year-old survivors weighing 501 to 1000 grams at birth and born to residents of a geographically defined region from 1981 to 1984 compared with 1977 to 1980
J Pediatr
(1989) - et al.
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
(1991) Ethical issues in the nursery: priorities versus limits
J Pediatr
(1990)- et al.
Parental rights at the birth of a near-viable infant: conflicting perspectives
Am J Obstet Gynecol
(1997) - et al.
A quantitative review of mortality and developmental disability in extremely premature newborns
Arch Pediatr Adolesc Med
(1998) - et al.
School difficulties at adolescence in a regional cohort of children who were extremely low birthweight
Pediatrics
(2000) - et al.
Psychopathology and adaptive functioning among extremely low birthweight children at eight years of age
Dev Psychopathol
(1993) - et al.
School-age outcomes in children with birthweights under 750g
N Engl J Med
(1994) - et al.
The impact of very low birth weight infants on the family is long lasting
Arch Pediatr Adolesc Med
(1995) - et al.
Social support, psychological distress, and parenting strains in mothers of VLBW infants
Fam Relations
(1996)
Experience of families with very low birthweight children with neurologic sequelae
Clin Pediatr
The very low birth weight transport goes home: impact on the family
J Dev Behav Pediatr
The effects of premature birth on parents and their relationship
Dev Med Child Neurol
Maternal psychological distress and parenting stress after the birth of a very low birth weight infant
JAMA
Adaptation during early childhood among mothers of children with disabilities
J Dev Behav Pediatr
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Supported by grant 6606-5316-301 from the National Health Research and Development Programme, Ottawa, Ontario, Canada, and in part by HS - 08385 from the Agency for Health Care Policy Research, Rockville, Maryland.
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Reprint requests: Saroj Saigal, MD, Hamilton Health Sciences Centre, McMaster Division, Room 4G40, 1200 Main St West, Hamilton, Ontario, L8S 4J9, Canada.