“Quality of life”: parent and neonatologist perspectives

Abstract

Objective

To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL.

Study design

Surveys were developed and administered to neonatologists and eligible families. Quantitative analysis was conducted using standard statistical methods. Qualitative analysis was conducted using NVivo software. Focus groups were conducted with the same groups, and audio recordings were obtained and analyzed for recurring themes.

Results

Both parents and physicians value QOL as a metric for guiding care in the NICU. Parents were more likely to accept higher levels of disability, while neonatologists were more likely to accept higher levels of dependence on medical equipment. In relation to infant QOL, predominant themes expressed in the parent focus groups were stress levels in the NICU, advocating as parents, and the way in which long-term outcomes were presented by the medical team; in the physician focus group, the ambiguity of predicting outcomes and thus QOL was the main theme.

Conclusions

Both parents and physicians recognize the importance of QOL in the decision-making process for critically ill infants, but the two groups differ in their assessment of what QOL means in this context. These data suggest that QOL cannot be adequately defined for standardized use in a clinical context, and as such, should be used thoughtfully by neonatologists in discussions of end- of-life care.

Access options

Rent or Buy article

Get time limited or full article access on ReadCube.

from$8.99

All prices are NET prices.

References

  1. 1.

    Driscoll AK, Rossen LM. Quarterly provisional estimates for infant mortality, 2017-Quarter 1, 2019. National Center for Health Statistics, National Vital Statistics System, Vital Statistics Rapid Release Program. https://www.cdc.gov/nchs/nvss/vsrr/infant-mortality-dashboard.htm. Accessed 8 Aug 2019.

  2. 2.

    Centers for Disease C, Prevention. CDC grand rounds: public health approaches to reducing U.S. infant mortality. Morb Mortal Wkly Rep. 2013;62:625–8.

  3. 3.

    Jacob J, Kamitsuka M, Clark RH, Kelleher AS, Spitzer AR. Etiologies of NICU deaths. Pediatrics. 2015;135:e59–65.

  4. 4.

    Miles MS, Holditch-Davis D. Parenting the prematurely born child: pathways of influence. Semin Perinatol. 1997;21:254–66.

  5. 5.

    John HB, Philip RM, Santhanam S, Padankatti SM, Sebastian T, Balan I, et al. Activity based group therapy reduces maternal anxiety in the Neonatal Intensive Care Unit—a prospective cohort study. Early Hum Dev. 2018;123:17–21.

  6. 6.

    Eriksson BS, Pehrsson G. Evaluation of psycho-social support to parents with an infant born preterm. J Child Health Care. 2002;6:19–33.

  7. 7.

    Aftyka A, Rybojad B, Rozalska-Walaszek I, Rzonca P, Humeniuk E. Post-traumatic stress disorder in parents of children hospitalized in the neonatal intensive care unit (NICU): medical and demographic risk factors. Psychiatr Danub. 2014;26:347–52.

  8. 8.

    Gold KJ, Leon I, Boggs ME, Sen A. Depression and posttraumatic stress symptoms after perinatal loss in a population-based sample. J Women’s Health. 2016;25:263–9.

  9. 9.

    Janvier A, editor. Speaking about Life and Death in the NICU. Cool Topics in Neonatology Annual Conference. Coronado, CA: Coronado Island Marriott Resort; 2016.

  10. 10.

    Larcher V. Ethical considerations in neonatal end-of-life care. Semin Fetal Neonatal Med. 2013;18:105–10.

  11. 11.

    Sauer PJ, Ethics Working Group CoESiP. Ethical dilemmas in neonatology: recommendations of the Ethics Working Group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr. 2001;160:364–8.

  12. 12.

    Smith L. The ethics of neonatal care for the extremely preterm infant. J Neonatal Nurs. 2005;11:33–7.

  13. 13.

    Testa MA, SD. Assesment of quality-of-life outcomes. N Engl J Med. 1996;334:834–40.

  14. 14.

    Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126–39.

  15. 15.

    Limbers CA, Heffer RW, Varni JW. Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s Syndrome utilizing the PedsQL. J Autism Dev Disord. 2009;39:1529–41.

  16. 16.

    Varni JW, Kay MT, Limbers CA, Franciosi JP, Pohl JF. PedsQL gastrointestinal symptoms module item development: qualitative methods. J Pediatr Gastroenterol Nutr. 2012;54:664–71.

  17. 17.

    Varni JW, Limbers CA, Neighbors K, Schulz K, Lieu JE, Heffer RW, et al. The PedsQL Infant Scales: feasibility, internal consistency reliability, and validity in healthy and ill infants. Qual Life Res. 2011;20:45–55.

  18. 18.

    Desai AD, Zhou C, Stanford S, Haaland W, Varni JW, Mangione-Smith RM. Validity and Responsiveness of the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales in the Pediatric Inpatient SettingPediatric Quality of Life Inventory 4.0Pediatric Quality of Life Inventory 4.0. JAMA Pediatr. 2014;168:1114–21.

  19. 19.

    Berger TM, Hofer A. Causes and circumstances of neonatal deaths in 108 consecutive cases over a 10-year period at the Children’s Hospital of Lucerne, Switzerland. Neonatology. 2009;95:157–63.

  20. 20.

    Arlettaz R, Mieth D, Bucher HU, Duc G, Fauchere JC. End-of-life decisions in delivery room and neonatal intensive care unit. Acta Paediatr. 2005;94:1626–31.

  21. 21.

    Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol. 2002;22:184–95.

  22. 22.

    Guyer RL. Baby at risk: the uncertain legacies of medical miracles for babies, families, and society. Sterling, VA: Capital Books; 2006.

  23. 23.

    Casey MAaK, Richard A. Chapter 6: analyzing focus group results. Focus groups: a practical guide for applied research. Thousan Oaks. CA: Sage Publications; 2015. p. 137–61.

  24. 24.

    Gooding JS, Cooper LG, Blaine AI, Franck LS, Howse JL, Berns SD. Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. Semin Perinatol. 2011;35:20–8.

  25. 25.

    Griffin T. Family-centered care in the NICU. J Perinat Neonatal Nurs. 2006;20:98–102.

  26. 26.

    Gale G, Franck LS, Kools S, Lynch M. Parents’ perceptions of their infant’s pain experience in the NICU. Int J Nurs Stud. 2004;41:51–8.

  27. 27.

    Wereszczak J, Miles MS, Holditch-Davis D. Maternal recall of the neonatal intensive care unit. Neonatal Netw. 1997;16:33–40.

  28. 28.

    Franck LS, L, Couture S. Parent views of infant pain and pain management in the neonatal intensive care unit. Newborn Infant Nurs Rev. 2001;1:106–13.

  29. 29.

    Isaiah A, Moyer K, Pereira KD. Current trends in neonatal tracheostomy. JAMA Otolaryngol Head Neck Surg. 2016;142:738–42.

  30. 30.

    Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. J Am Med Assoc. 2000;284:2476–82.

  31. 31.

    Reynolds JM. Three things clinicians should know about disability. AMA J Ethics. 2018;10:E1181–7.

  32. 32.

    Janz HL. Ableism: the undiagnosed malady afflicting medicine. CMAJ. 2019;191:E478–9.

  33. 33.

    Lezzoni LI. Make no assumptions: communication between persons with disabilities and clinicians. Assistive Technol. 2006;18:212–9.

  34. 34.

    Kon AA, Ackerson L, Lo B. Choices physicians would make if they were the parents of a child with hypoplastic left heart syndrome. Am J Cardiol. 2003;91:1506–9.

  35. 35.

    Taunt HM, Hastings RP. Positive impact of children with developmental disabilities on their families: a preliminary study. Educ Train Ment Retard Dev Disabil. 2002;37:410–20.

  36. 36.

    Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Ment Retard. 2000;38:195–206.

  37. 37.

    Ashum G, Singhal N. Positive perceptions in parents of children with disabilities. Asia Pac Disabil Rehabil J. 2004;22–35.

  38. 38.

    Heidari H, Hasanpour M, Fooladi M. The experiences of parents with infants in Neonatal Intensive Care Unit. Iran J Nurs Midwifery Res. 2013;18:208–13.

  39. 39.

    Franck LS, Cox S, Allen A, Winter I. Measuring neonatal intensive care unit-related parental stress. J Adv Nurs. 2005;49:608–15.

  40. 40.

    Blanco F, Suresh G, Howard D, Soll RF. Ensuring accurate knowledge of prematurity outcomes for prenatal counseling. Pediatrics. 2005;115:e478–87.

  41. 41.

    Davies D, Mack C. When parents say “more” and health care professionals say “enough”. Paediatr Child Health. 2015;20:135–8.

  42. 42.

    Kopelman AE. Understanding, avoiding, and resolving end-of-life conflicts in the NICU. Mt Sinai J Med. 2006;73:580–6.

  43. 43.

    Berger TM, Bernet V, El Alama S, Fauchere JC, Hosli I, Irion O, et al. Perinatal care at the limit of viability between 22 and 26 completed weeks of gestation in Switzerland. 2011 revision of the Swiss recommendations. Swiss Med Wkly. 2011;141:w13280.

  44. 44.

    Wilkinson D, Savulescu J. Disability, discrimination and death: is it justified to ration life saving treatment for disabled newborn infants? Monash Bioeth Rev. 2014;32:43–62.

  45. 45.

    Baumann N, Bartmann P, Wolke D. Health-related quality of life into adulthood after very preterm birth. Pediatrics. 2016;137:1–10.

  46. 46.

    Saigal S, Stoskopf B, Pinelli J, Streiner D, Hoult L, Paneth N, et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics. 2006;118:1140–8.

  47. 47.

    Davison KK, Charles JN, Khandpur N, Nelson TJ. Fathers’ perceived reasons for their underrepresentation in child health research and strategies to increase their involvement. Matern Child Health J. 2017;21:267–74.

  48. 48.

    Phares V, Lopez E, Fields S, Kamboukos D, Duhig AM. Are fathers involved in pediatric psychology research and treatment? J Pediatr Psychol. 2005;30:631–43.

  49. 49.

    Mitchell SJ, See HM, Tarkow AKH, Cabrera N, McFadden KE, Shannon JD. Conducting studies with fathers: challenges and opportunities. Appl Dev Sci. 2007;11:239–44.

  50. 50.

    Hatchett BF, HK, Duran DA, Davis C. African Americans and research participation: the recruitment process. J Black Stud. 2000;30:664–75.

  51. 51.

    Graves D, Sheldon JP. Recruiting African American children for research: an ecological systems theory approach. West J Nurs Res. 2018;40:1489–521.

  52. 52.

    Shelkowitz E, Vessella SL, O’Reilly P, Tucker R, Lechner BE. Counseling for personal care options at neonatal end of life: a quantitative and qualitative parent survey. BMC Palliat Care. 2015;14:70.

  53. 53.

    Cacciatore J, Schnebly S, Froen JF. The effects of social support on maternal anxiety and depression after stillbirth. Health Soc Care Community. 2009;17:167–76.

Download references

Acknowledgements

We would like to thank the parents and physicians who took part in the focus groups and filled out the surveys, as well as the Preemie Parent Alliance and all other advocacy organizations for survey distribution and promotion.

Author information

Correspondence to Shannon Y. Adams.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Adams, S.Y., Tucker, R., Clark, M.A. et al. “Quality of life”: parent and neonatologist perspectives. J Perinatol (2020). https://doi.org/10.1038/s41372-020-0654-9

Download citation