Maternal Perception of the Quality of Life of Children Born Extremely Premature During Infancy: A Descriptive Correlational Study

Main Article Content

Nancy Leblanc
https://orcid.org/0000-0002-7403-3441
Rachelle Lemire
https://orcid.org/0000-0002-5665-0446

Abstract

Introduction: Research on quality of life exclusively in the context of extreme prematurity and preschool is almost non-existent.


Objective: The purpose of this descriptive correlational study was to describe the quality of life of children born extremely premature, during infancy, according to maternal perception. The specific objectives were to describe the different dimensions of the quality of life of children born extremely premature and to explore the relationships between certain sociodemographic and clinical variables and quality of life. The study was based on Callista Roy's adaptation model (1976).


Method: Forty-two parents of children born extremely premature and aged 2 to 5 years responded to the PedsQL 4.0 during telephone interviews.


Results: Overall, the results show that the children have a good quality of life, as perceived by the mothers. Physical functioning was the most optimal dimension of quality of life, while emotional functioning was the least optimal. Furthermore, children from nuclear families have a better global quality of life than children from other family types.


Discussion and conclusion: Extreme prematurity requires careful monitoring by nurses to ensure healthy development of toddlers and therefore good quality of life. Future research is needed to further document the quality of life of children born extremely premature at preschool age.

Article Details

How to Cite
Leblanc, N., & Lemire, R. (2022). Maternal Perception of the Quality of Life of Children Born Extremely Premature During Infancy: A Descriptive Correlational Study. Science of Nursing and Health Practices, 5(1), 21–33. https://doi.org/10.7202/1090528ar
Section
Empirical research articles

References

Berbis, J., Einaudi, M. A., Simeoni, M. S., Brevaut, M. V., Auquier, P., d’Ercole, C. et Gire, C. (2012). Quality of life of early school-age French children born preterm: a cohort study. European journal of obstetrics & gynecology and reproductive biology, 162(1), 38-44. https://doi.org/10.1016/j.ejogrb.2012.02.006

Canadian Institute for Health Information. (2015). Rethink, Renew, Retire: Report from the Fourth Consensus Conference on Evaluating Priorities for Canada’s Health Indicators, 2015. https://secure.cihi.ca/free_products/Rethink_Renew_Retire.pdf

Ghotra, S., Feeny, D., Barr, R., Yang, J., Saigal, S., Vincer, M., Afifi, J., Shah, P. S., Lee, S. K., Synnes, A. R., Canadian Neonatal Follow-Up Network Investigators et Canadian Neonatal Network Site Investigators. (2021). Parent-reported health status of preterm survivors in a Canadian cohort. Archives of disease in childhood. Fetal and neonatal edition, fetalneonatal-2021-321635. Advance online publication. http://dx.doi.org/10.1136/archdischild-2021-321635

Gire, C., Resseguier, N., Brévaut-Malaty, V., Marret, S., Cambonie, G., Souksi-Medioni, I., Müller, J. B., Garcia, P., Berbis, J., Tosello, B., Auquier, P. et GPQoL study Group. (2019). Quality of life of extremely preterm school-age children without major handicap: a cross-sectional observational study. Archives of disease in childhood, 104(4), 333-339. http://dx.doi.org/10.1136/archdischild-2018-315046

Huhtala, M., Korja, R., Rautava, L., Lehtonen, L., Haataja, L., Lapinleimu, H., Rautava, P. et PIPARI Study Group. (2016). Health-related quality of life in very low birth weight children at nearly eight years of age. Acta paediatrica (Oslo, Norway: 1992), 105(1), 53-59. https://doi.org/10.1111/apa.13241

Jayakody, H., Senarath, U. et Attygalle, D. (2018). Health related quality of life of preterm born children at three years in a sub urban district in Sri Lanka: a retrospective cohort study. BMC Pediatrics, 18(193), 1-9. https://doi.org/10.1186/s12887-018-1162-3

Kelly M. M. (2014). Assessment of life after prematurity in 9- to 10- year-old children. MCN. The American journal of maternal child nursing, 39(1), 26-34. https://doi.org/10.1097/NMC.0b013e3182a8de8e

Kilbride, H. W., Aylward, G. P. et Carter, B. (2018). What are we measuring as outcome? Looking beyond neurodevelopmental impairment. Clinics in perinatology, 45(3), 467-484. https://doi.org/10.1016/j.clp.2018.05.008

Lamônica, D., Becaro, C. K., Borba, A. C., Maximino, L. P., Costa, A. et Ribeiro, C. (2018). Communicative performance and vocabulary domain in preschool preterm infants. Journal of applied oral science: revista FOB, 26, e20170186. https://doi.org/10.1590/1678-7757-2017-0186

Linsell, L., Johnson, S., Wolke, D., Morris, J., Kurinczuk, J. J. et Marlow, N. (2019). Trajectories of behavior, attention, social and emotional problems from childhood to early adulthood following extremely preterm birth: a prospective cohort study. European child & adolescent psychiatry, 28(4), 531-542. https://doi.org/10.1007/s00787-018-1219-8

Liu, G. X. H. et Harding, J. E., for the PIANO Study Team. (2021). Caregiver-reported health-related quality of life of New Zealand children born very and extremely preterm. PLoS ONE 16(6): e0253026. https://doi.org/10.1371/journal.pone.0253026

Logan, J. W., Dammann, O., Allred, E. N., Dammann, C., Beam, K., Joseph, R. M., O'Shea, T. M., Leviton, A. et Kuban, K. (2017). Early postnatal illness severity scores predict neurodevelopmental impairments at 10 years of age in children born extremely preterm. Journal of perinatology: official journal of the California Perinatal Association, 37(5), 606–614. https://doi.org/10.1038/jp.2016.242

Loiselle, C. G. et Profetto-McGrath, J. (2007). Méthodes de recherche en sciences infirmières : Approches quantitatives et qualitatives. (2e éd.). Éditions du Renouveau Pédagogique.

Lowe, J. R., Fuller, J. F., Do, B. T., Vohr, B. R., Das, A., Hintz, S. R., Watterberg, K. L., Higgins, R. D., Eunice Kennedy Shriver National Institute of Child Health et Human Development Neonatal Research Network. (2019). Behavioral problems are associated with cognitive and language scores in toddlers born extremely preterm. Early human development, 128, 48-54. https://doi.org/10.1016/j.earlhumdev.2018.11.007

Martini, J. A., Padovani, F. H. P. et Perosa, G. B. (2016). Quality of life of preterm children: risk and protective factors. Paideia, 26, 325-332. https://doi.org/10.1590/1982-43272665201610

Olsen, J. E., Lee, K. J., Spittle, A. J., Anderson, P. J., Doyle, L. W., Cheong, J. et members of the Victorian Infant Collaborative Study Group (2021). The causal effect of being born extremely preterm or extremely low birthweight on neurodevelopment and social-emotional development at 2 years. Acta paediatrica (Oslo, Norway: 1992), 10.1111/apa.16098. Advance online publication. https://doi.org/10.1111/apa.16098

Organisation mondiale de la Santé (OMS). (2018). Naissances prématurées. https://www.who.int/fr/news-room/fact-sheets/detail/preterm-birth

Patel R. M. (2016). Short- and long-term outcomes for extremely preterm infants. American journal of perinatology, 33(3), 318-328. https://doi.org/10.1055/s-0035-1571202

Peralta-Carcelen, M., Carlo, W. A., Pappas, A., Vaucher, Y. E., Yeates, K. O., Phillips, V. A., Gustafson, K. E., Payne, A. H., Duncan, A. F., Newman, J. E., Bann, C. M. et Follow Up Committee of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Network. (2017). Behavioral problems and socioemotional competence at 18 to 22 months of extremely premature Children. Pediatrics, 139(6), e20161043. https://doi.org/10.1542/peds.2016-1043

Roberts G. (2019). Quality of life after extremely preterm birth. Archives of disease in childhood, 104(4), 311-312. https://doi.org/10.1136/archdischild-2018-315708

Roy, C. (1976). Introduction to Nursing: An Adaptation Model. Prentice-Hall Inc.

Varni, J. W., Burwinkle, T. M., Seid, M. et Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory pediatrics: the official journal of the Ambulatory Pediatric Association, 3(6), 329-341. https://doi.org/10.1367/1539-4409(2003)003<0329:tpaapp>2.0.co;2

Vieira, M. E. B., Formiga, C. K. M. R. et Linhares, M. B. M. (2017). Quality of life in low-risk preterm children at preschool age. Psychology & Neuroscience, 10(2), 201-214. https://doi.org/10.1037/pne0000091

WHO Quality of Life Assessment Group. (‎1994)‎. What quality of life?. World Health Forum 1996; 17(‎4)‎ : 354-356. https://apps.who.int/iris/handle/10665/54358