Elsevier

The Journal of Pediatrics

Volume 137, Issue 5, November 2000, Pages 701-706
The Journal of Pediatrics

Original Articles
Impact of extreme prematurity on families of adolescent children,☆☆

https://doi.org/10.1067/mpd.2000.109001Get rights and content

Abstract

Objectives: To compare the impact of burden of illness on families of teenaged children who were extremely low birth weight (ELBW) with that of members of a term control group (C) and to determine whether the attitudes toward active treatment of very immature infants differ between the 2 cohorts. Design: In a cross-sectional survey, parents of 145 (86%) of 169 members of an ELBW cohort and 123 (85%) of 145 members of a control cohort completed a 23-item self-completed questionnaire encompassing occupational, marital, and family-related issues and attitudes toward treatment of infants of borderline viability. Results: Both positive (P =.0003) and negative (P <.005) effects on marriage were higher in parents of the ELBW group; although more parents in the ELBW group felt that their child had brought their families closer together (P =.0001), their child’s health had adversely affected their emotional health (P =.02) and that of other children in the family (P =.003). Despite this result, a significant proportion of parents from both cohorts supported saving all infants (ELBW 68%; C 58%) and favored the role of parents in decision making (ELBW 98%; C 97%). Conclusions: In the long term, it appears that parents of ELBW children have adjusted fairly well to their work and family life. Although some negative effects were identified, there was still considerable support for active treatment of infants of borderline viability. (J Pediatr 2000;137:701-6)

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).

. Sociodemographic data: parents of teens in ELBW and control groups

Empty CellParents
ELBW group (n = 145)Control group (n = 123)
Respondents, mothers (%)8294
Maternal age, mean (SD)41 (6)43 (5)
Born in Canada (%)7664
Two-parent families (%)8985
Have children with impairments (%)262
Socioeconomic status16 (%)
 I, II3944
 III3031
 IV, V3125
Maternal education (%)
 Secondary school or less5947
 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)

  • A Rivers et al.

    Experience of families with very low birthweight children with neurologic sequelae

    Clin Pediatr

    (1987)
  • MC McCormick et al.

    The very low birth weight transport goes home: impact on the family

    J Dev Behav Pediatr

    (1986)
  • MA Trause et al.

    The effects of premature birth on parents and their relationship

    Dev Med Child Neurol

    (1983)
  • L Singer et al.

    Maternal psychological distress and parenting stress after the birth of a very low birth weight infant

    JAMA

    (1999)
  • ME Warfield et al.

    Adaptation during early childhood among mothers of children with disabilities

    J Dev Behav Pediatr

    (1999)
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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.

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