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Original research
Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity
  1. Annie Janvier1,2,
  2. Claude Julie Bourque3,4,
  3. Rebecca Pearce5,
  4. Emilie Thivierge6,
  5. Laurie-Anne Duquette7,
  6. Magdalena Jaworski6,8,
  7. Keith J Barrington9,10,
  8. Anne R Synnes11,
  9. Paige Church12,
  10. Thuy Mai Luu10,13
  1. 1 Department of Pediatrics and Clinical Ethics, Bureau de l'éthique clinique, Université de Montréal, Montreal, Quebec, Canada
  2. 2 Neonatology, Palliative Care, Reserch Center, Unité d'éthique Clinique, CHU Sainte-Justine, Montreal, Quebec, Canada
  3. 3 Department of Pediatrics, CHU Sainte-Justine Centre de Recherche, Montreal, Quebec, Canada
  4. 4 Clinical Ethics and Family Partnership Research Unit, CHU Sainte-Justine Centre de Recherche, Montreal, Quebec, Canada
  5. 5 Parent Representative, Canadian Premature Baby Foundation, Montreal, Quebec, Canada
  6. 6 Department of Pediatrics, Université de Montréal, Montreal, Quebec, Canada
  7. 7 CHU Sainte-Justine Research Center, Montréal, Quebec, Canada
  8. 8 CHU Sainte-Justine, Montreal, Quebec, Canada
  9. 9 Department of Neonatology, Centre de Recherche, Centre Hospitalier Universitaire Sainte Justine, Montreal, Quebec, Canada
  10. 10 Department of Pediatrics, Universite de Montreal, Montreal, Quebec, Canada
  11. 11 Department of Neonatology, BC Women's Hospital and Health Centre, Vancouver, British Columbia, Canada
  12. 12 Department of Neonatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  13. 13 Pediatrics and Research Center, Centre Hospitalier Universitaire Sainte-Justine, Montreal, Quebec, Canada
  1. Correspondence to Dr Annie Janvier, Department of Pediatrics and clinical ethics, Bureau de l'éthique clinique, Université de Montréal, Montreal, Quebec H3T 1J4, Canada; annie.janvier{at}umontreal.ca

Abstract

Objectives Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family.

Methods Over 1 year, parents of children born <29 weeks’ gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses.

Results Among parents (n=248, 98% participation rate), most (74%) reported that their child’s prematurity had both positive and negative impacts on their life or their family’s life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child’s future (18%).

Conclusion Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.

  • intensive care units, neonatal
  • neonatology
  • infant development
  • child development
  • ethics

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information. All data relevant to the study are included in the article.

https://doi.org/10.1136/archdischild-2022-325011

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information. All data relevant to the study are included in the article.

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    Footnotes

    • Twitter @neonatalresearc

    • Contributors AJ contributed to the conception and design, obtained funding, participated in the analysis and interpretation of data (thematic analysis),. AJ is the guarantor. CJB contributed to the conception and design, obtained funding, participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis). RP contributed to the conception and design, analysis and interpretation of data (thematic analysis). ET participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis). L-AD participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis). KJB participated in analysis and interpretation of data (quantitative, statistical). MJ participated in acquiring data (interviews), analysis and interpretation of data (thematic analysis). ARS contributed to the conception and design, obtained funding. PC contributed to the conception and design, obtained funding. TML contributed to the conception and design, obtained funding, acquired data, participated in the analysis and interpretation of data (thematic analysis and statistical analysis).

    • Funding This study was funded by the CHILD-BRIGHT Network, with funding from the Canadian Institutes of Health Research (CIHR) under the Strategy for Patient-Oriented Research (SPOR) grant number SCA-145104. Annie Janvier and Thuy Mai Luu received salary support from the Fonds de Recherche en Santé du Québec. The other authors received no additional funding.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.