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  • Original Article
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Biopsychosocial risks of parental care for high-risk neonates: implications for evidence-based parental counseling

Abstract

Objective:

Provide an evidence base for counseling parents of high-risk neonates about the biopsychosocial impact of providing long-term care.

Study Design:

A review of the effects of long-term care on families of high-risk neonates. Our search was limited to 1993–2010. We used the terms ‘long-term care,’ ‘family,’ ‘neonate’ and ‘technology dependence.’ Results were organized based on Engel's biopsychosocial model.

Result:

Physical—parental caregivers reported more health problems, had fewer health-promoting behaviors and lower vitality.

Psychological—parental caregivers had higher rates of post-traumatic stress disorder and depressive symptoms, although some improved with time. Siblings reported greater stress and depression. Social—parental caregivers achieved fewer years of education, higher unemployment and lower incomes. Couples reported greater family strain. The effect on divorce was mixed. Siblings reported disruption in their academic and social lives.

Conclusion:

Providing long-term care involves biopsychosocial risks. Counseling of parents should identify them and advocate strategies for prevention.

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References

  1. Lorenz JM, Wooliever DE, Jetton JR, Paneth N . A quantitative review of mortality and developmental disability in extremely premature newborns. Arch Pediatr Adolesc Med 1998; 152 (5): 425–435.

    Article  CAS  Google Scholar 

  2. Wilson-Costello D . Is there evidence that long-term outcomes have improved with intensive care?. Semin Fetal Neonatal 2007; 12 (5): 344–354.

    Article  Google Scholar 

  3. Hintz SR, Poole WK, Wright LL, Fanaroff AA, Kendrick DE, Laptook AR et al. Changes in mortality and morbidities among infants born at less than 25 weeks during post-surfactant era. Arch Dis Child Fetal Neonatal Ed 2005; 90 (2): F128–F133.

    Article  CAS  Google Scholar 

  4. Slonim AD, Patel KM, Ruttimann UE, Pollack MM . The impact of prematurity: a perspective of pediatric intensive care units. Crit Care Med 2000; 28 (3): 848–853.

    Article  CAS  Google Scholar 

  5. American Academy of Pediatrics Committee on Fetus and Newborn. Hospital discharge of the high-risk neonate. Pediatrics 2008; 122 (5): 1119–1126.

    Article  Google Scholar 

  6. Engle WA, American Academy of Pediatrics, Committee on Fetus and Newborn. Surfactant-replacement therapy for respiratory distress in the preterm and term neonate. Pediatrics 2008; 121 (2): 419–432.

    Article  Google Scholar 

  7. NIH Consensus Development Panel on the Effect of Corticosteroids for Fetal Maturation on Perinatal Outcomes. Effect of corticosteroids for fetal maturation on perinatal outcomes. JAMA 1995; 273 (5): 413–418.

    Article  Google Scholar 

  8. Borrell-Carrió F, Suchman AL, Epstein RM . The biopsychosocial model 25 years later: principles, practice, and scientific inquiry. Ann Fam Med 2004; 2 (6): 576–582.

    Article  Google Scholar 

  9. Brehaut JC, Kohen DE, Parminder R, Walter SD, Russell DJ, Swinton M et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004; 114 (2): e182–e191.

    Article  Google Scholar 

  10. Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russel D et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005; 115 (6): e626–e636.

    Article  Google Scholar 

  11. Kuster PA, Badr LK, Chang BL, Wuerker AK, Benjamin AE . Factors influencing health promoting activities of mothers caring for ventilator-assisted children. J Pediatr Nurs 2004; 19 (4): 276–287.

    Article  Google Scholar 

  12. Grosse SD, Flores AL, Ouyang L, Robbins JM, Tilford JM . Impact of spina bifida on parental caregivers: findings from a survey of Arkansas families. J Child Fam Stud 2009; 18: 574–581.

    Article  Google Scholar 

  13. Thyen U, Terres NM, Yazdgerdi SR, Perrin JM . Impact of long-term care of children assisted by technology on maternal health. J Dev Behav Pediatr 1998; 19 (4): 273–282.

    Article  CAS  Google Scholar 

  14. DeMier RL, Hynan MT, Harris HB, Manniello RL . Perinatal stressors as predictors of symptoms of posttraumatic stress in mothers of infants at high risk. J Perinatol 1996; 16 (4): 276–280.

    CAS  PubMed  Google Scholar 

  15. Callahan JL, Hynan MT . Identifying mothers at risk for postnatal emotional distress: further evidence for the validity of the Perinatal Posttraumatic Stress Disorder Questionnaire. J Perinatol 2002; 22 (6): 448–454.

    Article  Google Scholar 

  16. Callahan JL, Borja SE, Hynan MT . Modification of the Perinatal PTSD Questionnaire to enhance clinical utility. J Perinatol 2006; 26 (9): 533–539.

    Article  CAS  Google Scholar 

  17. Miles SM, Holditch-Davis D, Schwartz TA, Scher M . Depressive symptoms in mothers of prematurely born infants. J Dev Behav Pediatr 2007; 28 (1): 36–44.

    Article  Google Scholar 

  18. Cho J, Holditch-Davis D, Miles SM . Effects of maternal depressive symptoms and infant gender on the interactions between mothers and their medically at-risk infants. J Obstet Gynecol Neonatal Nurs 2008; 37 (1): 58–70.

    Article  Google Scholar 

  19. Miles SM, Holditch-Davis D, Burchinal P, Nelson D . Distress and growth outcomes in mothers of medically fragile infants. Nurs Res 1999; 48 (3): 129–140.

    Article  CAS  Google Scholar 

  20. Holditch-Davis D, Miles MS, Weaver MA, Black B, Beeber L, Thoyre S et al. Patterns of distress in African American mothers of preterm infants. J Dev Behav Pediatr 2009; 30 (3): 193–205.

    Article  Google Scholar 

  21. Singer LT, Salvator A, Guo S, Collin M, Lilien L, Baley J . Maternal psychological distress and parenting stress after the birth of a very low-birth-weight infant. JAMA 1999; 281 (9): 799–805.

    Article  CAS  Google Scholar 

  22. Eisengart SP, Singer LT, Fulton S, Baley JE . Coping and psychological distress in mothers of very low birth weight young children. Parenting Sci Pract 2003; 3 (1): 49–72.

    Article  Google Scholar 

  23. Singer LT, Fulton S, Kirchner HL, Eisengart S, Lewis B, Short E et al. Parenting very low birth weight children at school age: maternal stress and coping. J Pediatr 2007; 151 (5): 463–469.

    Article  Google Scholar 

  24. Singer LT, Fulton S, Kirchner HL, Eisengart S, Lewis B, Short E et al. Longitudinal predictors of maternal stress and coping after very low-birth-weight birth. Arch Pediatr Adolesc Med 2010; 164 (6): 518–524.

    Article  Google Scholar 

  25. Taylor HG, Klein N, Minich NM, Hack M . Long-term family outcomes for children with very low birth weights. Arch Pediatr Adolesc Med 2001; 155 (2): 155–161.

    Article  CAS  Google Scholar 

  26. Moore M, Taylor HG, Klein N, Minich N, Hack M . Longitudinal changes in family outcomes of very low birth weight. J Pediatr Psychol 2006; 31 (10): 1024–1035.

    Article  Google Scholar 

  27. Drotar D, Hack M, Taylor HG, Schluchter M, Andreias L, Klein N . The impact of extremely low birth weight on the families of school-aged children. Pediatrics 2006; 117 (6): 2006–2013.

    Article  Google Scholar 

  28. Montagnino BA, Mauricio RV . The child with tracheostomy and gastrostomy: parental stress and coping in the home--a pilot study. Pediatr Nurs 2004; 30 (5): 378–380, 401.

    Google Scholar 

  29. Carnevale FA, Alexander E, Davis M, Rennick J, Troini R . Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics 2006; 117 (1): e48–e60.

    Article  Google Scholar 

  30. Thyen U, Kuhlthau K, Perrin JM . Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics 1999; 103 (6): 1235–1242.

    Article  CAS  Google Scholar 

  31. Gennaro S, Fehder W, Nuamah IF, Campbell DE, Douglas SD . Caregiving to very low birthweight infants: a model of stress and immune response. Brain Behav Immun 1997; 11 (3): 201–215.

    Article  CAS  Google Scholar 

  32. Epel ES, Blackburn EH, Lin J, Dhabhar FS, Adler NE, Morrow JD et al. Accelerated telomere shortening in response to life stress. Proc Natl Acad Sci USA 2004; 101 (49): 17312–17315.

    Article  CAS  Google Scholar 

  33. Tedeschi RG, Calhoun LG . Posttraumatic growth: conceptual foundations and empirical evidence. Psychol Inq 2004; 15 (1): 1–18.

    Article  Google Scholar 

  34. Pridham KF, Limbo R, Schroeder M, Thoyre S, Van Riper M . Guided participation and development of care-giving competencies for families of low birth-weight infants. J Adv Nurs 1998; 28 (5): 948–958.

    Article  CAS  Google Scholar 

  35. Jotzo M, Poets CF . Helping parents cope with the trauma of premature birth: an evaluation of a trauma-preventive psychological intervention. Pediatrics 2005; 115 (4): 915–919.

    Article  Google Scholar 

  36. Browne JV, Talmi A . Family-based intervention to enhance infant-parent relationships in the neonatal intensive care unit. J Pediatr Psychol 2005; 30 (8): 667–677.

    Article  Google Scholar 

  37. American Academy of Pediatrics Committee on Early Childhood, Adoption, and Dependent Care. The pediatrician's role in family support programs. Pediatrics 2001; 107 (1): 195–197.

    Article  Google Scholar 

  38. Johnson CP, Kastner TA, American Academy of Pediatrics Committee/Section on Children With Disabilities. Helping families raise children with special health care needs at home. Pediatrics 2005; 115 (2): 507–511.

    Article  Google Scholar 

  39. Kaarsen PI, Renning JA, Ulvund SE, Dahl LB . A randomized, controlled trial of the effectiveness of an early-intervention program in reducing parenting stress after preterm birth. Pediatrics 2006; 118 (1): e9–e19.

    Article  Google Scholar 

  40. Melnyk BM, Feinstein NF, Alpert-Gillis L, Fairbanks E, Crean HF, Sinkin RA et al. Reducing premature infants’ length of stay and improving parents’ mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) Neonatal Intensive Care Unit Program: a randomized, controlled trial. Pediatrics 2006; 118 (5): e1414–e1427.

    Article  Google Scholar 

  41. American Academy of Pediatrics Committee on Bioethics. Treatment of critically ill newborns. Pediatrics 1983; 72 (4): 565–566.

    Google Scholar 

  42. American Academy of Pediatrics Committee on Bioethics. Guidelines on forgoing life-sustaining medical treatment. Pediatrics 1994; 93 (3): 532–536.

    Google Scholar 

Download references

Acknowledgements

This research was supported by departmental funds.

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Correspondence to F X Placencia.

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Supplementary Information accompanies the paper on the Journal of Perinatology website

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Placencia, F., McCullough, L. Biopsychosocial risks of parental care for high-risk neonates: implications for evidence-based parental counseling. J Perinatol 32, 381–386 (2012). https://doi.org/10.1038/jp.2011.109

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