Parents’ lived experience of early risk assessment for cerebral palsy in their young child using a mobile application after discharge from hospital in the newborn period

References

• Ravn SH, Flachs EM, Uldall P. Cerebral palsy in Eastern Denmark: declining birth prevalence but increasing numbers of unilateral cerebral palsy in birth year period 1986-1998. Eur J Paediatr Neurol. 2010;143:1–11.
   Google Scholar
• Granild-Jensen JB, Rackauskaite G, Flachs EM, et al. Predictors for early diagnosis of cerebral palsy from national registry data. Dev Med Child Neurol. 2015;57(10):931–935. doi:10.1111/dmcn.12760.
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. What is cerebral palsy? 2023. https://www.cdc.gov/ncbddd/cp/facts.html
   Google Scholar
• Hoei-Hansen CE, Laursen B, Langhoff-Roos J, et al. Decline in severe spastic cerebral palsy at term in Denmark 1999-2007. Eur J Paediatr Neurol. 2019;23(1):94–101. doi:10.1016/j.ejpn.2018.08.010.
   PubMed Web of Science ®Google Scholar
• Herskind A, Greisen G, Nielsen JB. Early identification and intervention in cerebral palsy. Dev Med Child Neurol. 2015;57(1):29–36. doi:10.1111/dmcn.12531.
   PubMed Web of Science ®Google Scholar
• Skiöld B, Eriksson C, Eliasson A-C, et al. General movements and magnetic resonance imaging in the prediction of neuromotor outcome in children born extremely preterm. Early Hum Dev. 2013;89(7):467–472. doi:10.1016/j.earlhumdev.2013.03.014.
   PubMed Web of Science ®Google Scholar
• Spittle A, Orton J, Anderson PJ, et al. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. Cochrane Database Syst Rev. 2015;201511: CD005495.
   Google Scholar
• Novak I, Morgan C, Adde L, et al. Early, accurate diagnosis and early intervention in cerebral palsy: advances in diagnosis and treatment. JAMA Pediatr. 2017;171(9):897–907. doi:10.1001/jamapediatrics.2017.1689.
   PubMed Web of Science ®Google Scholar
• Einspieler C, Prechtl HF. Prechtl’s assessment of general movements: a diagnostic tool for the functional assessment of the young nervous system. Ment Retard Dev Disabil Res Rev. 2005;11(1):61–67. doi:10.1002/mrdd.20051.
   PubMedGoogle Scholar
• Einspieler C. Prechtl’s method on the qualitative assessment of general movements in preterm, term and young infants. London:; Somerset: mac Keith Press; John Wiley & Sons, Incorporated Distributor; 2008.
   Google Scholar
• Adde L, Rygg M, Lossius K, et al. General movement assessment: predicting cerebral palsy in clinical practise. Early Hum Dev. 2007;83(1):13–18. doi:10.1016/j.earlhumdev.2006.03.005.
   PubMed Web of Science ®Google Scholar
• Brown AK, Greisen G, Haugsted U, et al. Formal training in general movement assessment is required to effectively evaluate infants with perinatal asphyxia in outpatient settings. Acta Paediatr. 2016;105(9):1056–1060. doi:10.1111/apa.13491.
   PubMed Web of Science ®Google Scholar
• Free C, Phillips G, Watson L, et al. The effectiveness of mobile-health technologies to improve health care service delivery processes: a systematic review and meta-analysis. PLoS Med. 2013;10(1):e1001363. doi:10.1371/journal.pmed.1001363.
   PubMed Web of Science ®Google Scholar
• Kwong AK, Eeles AL, Olsen JE, et al. The baby moves smartphone app for general movements assessment: engagement amongst extremely preterm and term-born infants in a state-wide geographical study. J Paediatr Child Health. 2019;55(5):548–554. doi:10.1111/jpc.14240.
   PubMed Web of Science ®Google Scholar
• Adde L, Brown A, van den Broeck C, et al. In-Motion-App for remote general movement assessment: a multi-site observational study. BMJ Open. 2021;11(3):e042147. 2020-042147. doi:10.1136/bmjopen-2020-042147.
   PubMed Web of Science ®Google Scholar
• Heringhaus A, Blom MD, Wigert H. Becoming a parent to a child with birth asphyxia-From a traumatic delivery to living with the experience at home. Int J Qual Stud Health Well-Being. 2013;8(1):1–13. doi:10.3402/qhw.v8i0.20539.
   PubMed Web of Science ®Google Scholar
• Breivold K, Hjaelmhult E, Sjöström-Strand A, et al. Mothers’ experiences after coming home from the hospital with a moderately to late preterm infant - a qualitative study. Scand J Caring Sci. 2019;33(3):632–640. doi:10.1111/scs.12656.
   PubMed Web of Science ®Google Scholar
• Manen MV. Researching lived experience: human science for an action sensitive pedagogy. 2 udgave ed. London, Ont.: althouse Press; 1997.
   Google Scholar
• van Manen M, van Manen M. Doing phenomenological research and writing. Qual Health Res. 2021;31(6):1069–1082. doi:10.1177/10497323211003058.
   PubMed Web of Science ®Google Scholar
• WMA General Assembly. WMA Declaration of Helsinki -Ethical Principles for Medical Research Involving Human Subjects. Available at: http://www.wma.net/en/30publications/10policies/b3/index.html.pdf?print-media-type&footer-right=[page]/[toPage].
   Google Scholar
• Lundqvist P, Weis J, Sivberg B. Parents’ journey caring for a preterm infant until discharge from hospital-based neonatal home care-A challenging process to cope with. J Clin Nurs. 2019;28(15-16):2966–2978. doi:10.1111/jocn.14891.
   PubMed Web of Science ®Google Scholar
• Kowalski WJ, Leef KH, Mackley A, et al. Communicating with parents of premature infants: who is the informant? J Perinatol. 2006;26(1):44–48. doi:10.1038/sj.jp.7211409.
   PubMed Web of Science ®Google Scholar
• Weis J, Lundqvist P. Parent experiences of communication with healthcare professionals in neonatal intensive care units: a qualitative systematic review protocol. JBI Database System Rev Implement Rep. 2016;14(8):12–18. doi:10.11124/JBISRIR-2016-003053.
   PubMedGoogle Scholar
• Gallagher K, Shaw C, Aladangady N, et al. Parental experience of interaction with healthcare professionals during their infant’s stay in the neonatal intensive care unit. Arch Dis Child Fetal Neonatal Ed. 2018;103(4):F343–F348. doi:10.1136/archdischild-2016-312278.
   PubMed Web of Science ®Google Scholar
• Arockiasamy V, Holsti L, Albersheim S. Fathers’ experiences in the neonatal intensive care unit: a search for control. Pediatrics. 2008;121(2):e215-22–e222. doi:10.1542/peds.2007-1005.
   PubMed Web of Science ®Google Scholar
• Heermann JA, Wilson ME, Wilhelm PA. Mothers in the NICU: outsider to partner. Pediatr Nurs. 2005;313(176-81):200.
   Google Scholar
• Wigert H, Dellenmark Blom M, Bry K. Parents’ experiences of communication with neonatal intensive-care unit staff: an interview study. BMC Pediatr. 2014;14(1):304. 304-014-0304-5. doi:10.1186/s12887-014-0304-5.
   PubMedGoogle Scholar
• Guttmann K, Flibotte J, DeMauro SB. Parental perspectives on diagnosis and prognosis of neonatal intensive care unit graduates with cerebral palsy. J Pediatr. 2018;203:156–162. doi:10.1016/j.jpeds.2018.07.089.
   PubMed Web of Science ®Google Scholar
• Baird G, McConachie H, Scrutton D. Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child. 2000;83(6):475–480. doi:10.1136/adc.83.6.475.
   PubMed Web of Science ®Google Scholar
• Novak I, Hines M, Goldsmith S, et al. Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics. 2012;130(5):e1285-312–e1312. doi:10.1542/peds.2012-0924.
   PubMed Web of Science ®Google Scholar
• Lakshmanan A, Kubicek K, Williams R, et al. Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study. BMC Pediatr. 2019;19(1):223. 223-019-1604-6. doi:10.1186/s12887-019-1604-6.
   PubMedGoogle Scholar
• McIntyre S, Morgan C, Walker K, et al. Cerebral palsy–don’t delay. Dev Disabil Res Rev. 2011;17(2):114–129. doi:10.1002/ddrr.1106.
   PubMedGoogle Scholar
• Guba EG, Lincoln, YS. Competing paradigms in qualitative research. In: Denzin NK, Lincoln YS, editors. Handbook of qualitative research. SAGE; 1994. p. 105–117.
   Google Scholar