Research Article
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Emergency service perspective of families with children who have neurodevelopmental diseases

Year 2023, , 21 - 30, 30.06.2023
https://doi.org/10.7197/cmj.1240428

Abstract

Introduction: It is known that children with neurodevelopmental diseases have frequent traumas like falling and apply to emergency department which significantly affects patient and family. Our aim is to examine the families' view and the problems encountered in emergency services by examining their answers to questionnaire.
Method: This study was designed retrospectively. Patients registered in Department of Autism, Mental Special Needs and Rare Diseases as families with children who have neurodevelopmental diseases included in the study. 324 families’ survey with 12 open-ended questions evaluated in terms of distribution and frequencies with descriptive statistical methods.
Results: By analyzing the data obtained the findings of the research were gathered under 12 main themes and 80 sub-themes. 313 (89.9%) were diagnosed with Down Syndrome, 9 (2.5%) with Angelman Syndrome, 7 (2.02%) with intellectual disability, and 5 (1.4%) with Autism. 34.2% of the children were 0-3 years old, 28.7% were 3-6 years old, 20.9% were 6-10 years old. Emergency services were used in "all cases where urgent intervention is required" (70%), and in cases where “an outpatient appointment couldn’t made" (10.8%)
Conclusion: It would be beneficial to examine children with neurodevelopmental diseases in an understanding and patient manner, using a plain and understandable language, in a quiet environment in emergency room. To solve these patient’s problems, awareness training of healthcare professionals, having separate examination and observation room, ensuring accessibility and arranging the room with necessary medical supplies and equipment should be made.

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Project Number

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References

  • 1. Harris, James C, New classification for neurodevelopmental disorders in DSM-5. Current Opinion in Psychiatry: March 2014 - Volume 27 - Issue 2 - p 95-97. doi: 10.1097/YCO.0000000000000042.
  • 2. Heady N, Watkins A, John A, Hutchings H. Prevalence of neurodevelopmental disorders and their impact on the health and social well-being among looked after children (LAC): a systematic review protocol. Syst Rev. 2022 Mar 19;11(1):49. doi:10.1186/s13643-022-01923-6.
  • 3. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM–5) Washington DC: American Psychiatry Association; 2013.
  • 4. WHO. World Health Organisation. Autism Spectrum Disorders. 2022. Available from: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
  • 5. Cooley, C. Down Sendromu (Çev: Emine Pürçüklü). Murat Yurdakök (Editör). Pediatri içinde. Ankara: Güneş Kitabevi; 2007
  • 6. O'Nualláin S, Flanagan O, Raffat I, Avalos G, Dineen B. The prevalence of Down syndrome in County Galway. Ir Med J. 2007 Jan;100(1):329-31. PMID: 17380922. https://pubmed.ncbi.nlm.nih.gov/17380922/
  • 7. Canfield MA, Honein MA, Yuskiv N, Xing J, Mai CT, Collins JS, et al. National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birth Defects Res A Clin Mol Teratol. 2006 Nov;76(11):747-56. doi: 10.1002/bdra.20294. PMID: 17051527.
  • 8. McDermott S, Zhou L, Mann J. Injury treatment among children with autism or pervasive developmental disorder. J Autism Dev Disord. 2008 Apr;38(4):626-33. doi: 10.1007/s10803-007-0426-9. Epub 2007 Aug 10. PMID: 17690968.
  • 9. Rose L, McKim D, Leasa D, Nonoyama M, Tandon A, Bai YQ, et al. Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study. Eur Respir J. 2018 Sep 18;52(3):1800754. doi: 10.1183/13993003.00754-2018. PMID: 30139772.
  • 10. Blake JM, Estrada Gomez D, Skotko BG, Torres A, Santoro SL. Pneumonia and respiratory infection in Down syndrome: A 10-year cohort analysis of inpatient and outpatient encounters across the lifespan. Am J Med Genet A. 2021 Oct;185(10):2878-2887. doi: 10.1002/ajmg.a.62355. Epub 2021 May 31. PMID: 34056836. 11. Kalb LG, Stuart EA, Freedman B, Zablotsky B, Vasa R. Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatr Emerg Care. 2012 Dec;28(12):1269-76. doi: 10.1097/PEC.0b013e3182767d96. PMID: 23187983. 12. Tint, A, Robinson, S, & Lunsky, Y (2011). Emergency Department Assessment and Outcomes in Individuals with Autism Spectrum Disorders. Journal on Developmental Disabilities, 17(2), 56-59. Available from: https://oadd.org/wp-content/uploads/2011/01/41010_JoDD_17-2_56-59_Tint_et_al.pdf
  • 13. Dorfman, D. H., & Mehta, S. D. (2006). Restraint Use for Psychiatric Patients in the Pediatric Emergency Department. Pediatric Emergency Care, 22(1), 7-12. doi: 10.1097/01.pec.0000195758.12447.69. PMID: 16418605
  • 14. Giarelli, E, Gardner, MR. Nursing of autism spectrum disorder: evidence-based integrated care across the lifespan. Springer Publishing Company, 2012.
  • 15. Williams CA, Angelman H, Clayton-Smith J, Driscoll DJ, Hendrickson JE, Knoll JH, et al. Angelman syndrome: consensus for diagnostic criteria. Angelman Syndrome Foundation. Am J Med Genet. 1995 Mar 27;56(2):237-8. doi: 10.1002/ajmg.1320560224. PMID: 7625452.
  • 16. Willlams CA. Lossie AC. Driscoll Dl. Angelman syndrome. Gene Clinics 1998; Avail- able at URL: wrnv.geneclinics.org.
  • 17. Glenn CC, DriscoU Dl. Yang TP. Nicholls RD. Genomic ~mprinting: Potential func- tion and mechanisms revealed by the Prader Willi and Angelman syndromes. Afol Hum Reprod 1997:3:321-332. https://doi.org/10.1093/molehr/3.4.321
  • 18. Kishino T, Lalande M, Wagstaff J. UBE3A/E6-AP mutations cause Angelman syndrome. Nat Genet. 1997 Jan;15(1):70-3. doi: 10.1038/ng0197-70. PMID: 8988171.
  • 19. Medical Staff Education. Use of Restraints: Yale-New Haven Hospital. https://www.ynhh.org/-/media/Files/YNHHS/PDF/med-staff-admin/2020-10-27-Revised-Med-Staff-Education.ashx
  • 20. Frank NC, Blount RL, Smith AJ, Manimala MR, Martin JK. Parent and staff behavior, previous child medical experience, and maternal anxiety as they relate to child procedural distress and coping. J Pediatr Psychol. 1995 Jun;20(3):277-89. doi: 10.1093/jpepsy/20.3.277. PMID: 7595816.
  • 21. LeDoux JE. Emotion circuits in the brain. Annu Rev Neurosci. 2000;23:155-84. doi: 10.1146/annurev.neuro.23.1.155. PMID: 10845062.
  • 22. Houghton BM. Caring for people with Down syndrome in A&E. Emerg Nurse. 2001 May;9(2):24-7. doi: 10.7748/en2001.05.9.2.24.c1358.
  • 23. Quinn F. The Principles and Practice of Nurse Education. London, Chapman and Hall, 1997.
  • 24. Argyle M. The Psychology of Interpersonal Behaviour. Harmondsworth, Penguin Publishing Co, 1983.
  • 25. Southampton Community NHS Health Services Trust. Learning Disabilities Resource Package. Proposal Pack. 1999.
  • 26. Shanley E, Guest C. Stigmatisation of people with learning disabilities in general hospitals. Br J Nurs. 1995 Jul 13-26;4(13):759-61. doi: 10.12968/bjon.1995.4.13.759. PMID: 7655262.
  • 27. Cinar O, Ak M, Sutcigil L, Congologlu ED, Canbaz H, Kilic E, et al. Communication skills training for emergency medicine residents. Eur J Emerg Med. 2012 Feb;19(1):9-13. doi: 10.1097/MEJ.0b013e328346d56d. PMID: 22241063.
  • 28. Bradley E, Lofchy J. Learning disability in the accident and emergency department. Advances in Psychiatric Treatment, 2005;11, 345–357 https://doi.org/10.1192/apt.11.1.45
  • 29. Vaz I. Improving the management of children with learning disability and autism spectrum disorder when they attend hospital. Child Care Health Dev. 2010 Nov;36(6):753-5. doi: 10.1111/j.1365-2214.2010.01144.x. PMID: 21039752.
  • 30. Cioffi J. Decision making by emergency nurses in triage assessments. Accident and emergency nursing, 1998, 6.4: 184-191. https://doi.org/10.1016/S0965-2302(98)90077-7
  • 31. Taylor SE, Taylor DM, Jao K, Goh S, Ward M. Nurse-initiated analgesia pathway for paediatric patients in the emergency department: a clinical intervention trial. Emerg Med Australas 2013; 25: 316–23. https://doi.org/10.1111/1742-6723.12103
  • 32. Hennequin M, Morin C, Feine JS. Pain expression and stimulus localisation in individuals with Down’s syndrome. Lancet 2000; 356: 1882–87. https://doi.org/10.1016/S0140-6736(00)03259-1
  • 33. Krauss BS, Calligaris L, Green SM, Barbi E. Current concepts in management of pain in children in the emergency department. Lancet. 2016 Jan 2;387(10013):83-92. https://doi.org/10.1016/S0140-6736(14)61686-X
  • 34. Mafrica F, Schifilliti D, Fodale V. Pain in Down's syndrome. ScientificWorldJournal. 2006 Jan 26;6:140-7. doi: 10.1100/tsw2006.27. PMID: 16493518; PMCID: PMC5917383.
  • 35. Rattaz C, Dubois A, Michelon C, Viellard M, Poinso F, Baghdadli A. How do children with autism spectrum disorders express pain? A comparison with developmentally delayed and typically developing children. Pain. 2013 Oct;154(10):2007-2013. doi: 10.1016/j.pain.2013.06.011. PMID: 24040973.
  • 36. Nader R, Oberlander TF, Chambers CT, Craig KD. Expression of pain in children with autism. Clin J Pain 2004; 20: 88–97. https://journals.lww.com/clinicalpain/Abstract/2004 /03000/Expression_of_Pain_in_Children_With_Autism.5.aspx
  • 37. Zelter LK. Krane EJ Pediatric pain management. In: Kliegeman RM, Stanton BF, St Geme JW III, Schor NF, Behrman RE. Nelson textbook of pediatrics, 19th ed. Philadelphia: Elsevier, 2011
  • 38. Tsao JC, Evans S, Seidman LC, Zeltzer LK. Experimental pain responses in children with chronic pain and in healthy children: how do they diff er? Pain Res Manag 2012; 17: 103–09. https://doi.org/10.1155/2012/592108
  • 39. Porter FL, Grunau RE, Anand KJ. Long-term effects of pain in infants, In: Oxford Textbook of Pediatric Pain, 2nd ed, Oxford University Press; 2021; p. 38-45.
  • 40. Cohen LL. Behavioral approaches to anxiety and pain management for pediatric venous access. Pediatrics 2008; 122 (suppl 3): S134–39. https://doi.org/10.1542/peds.2008-1055f
  • 41. Kuttner L. A child in pain. Wales: Crown House Publishing; 2010.

Nörogelişimsel hastalığı olan çocuklara sahip ailelerin acil servis hizmetlerine bakışı

Year 2023, , 21 - 30, 30.06.2023
https://doi.org/10.7197/cmj.1240428

Abstract

Giriş: Nörogelişimsel hastalıklara sahip çocukların düşme gibi travmalara sık maruz kaldığı ve acil servise başvurdukları bilinmektedir. Bu başvurular hem hastayı hem de aileyi önemli ölçüde etkilemektedir. Hatta bazı aileler acil servise başvurmaktan çekinmektedirler. Bu çalışmada amacımız, ailelerin anket sorularına verdikleri cevapları inceleyerek acil servis hizmetlerine bakışlarını ve karşılaştıkları sorunları araştırmaktır.
Metod: Bu çalışma retrospektif olarak tasarlanmıştır. Otizm, Zihinsel Özel Gereksinimler ve Nadir Hastalıklar Dairesi Başkanlığında kayıtlı ve nörogelişimsel hastalığı olan çocuklara sahip aileler çalışmaya alındı. 324 ailenin açık uçlu 12 anket sorusuna verdikleri cevaplar incelenip, dağılımı ve frekansları tanımlayıcı istatistiksel yöntemlerle değerlendirildi.
Bulgular: Katılımcıların cevapları incelenerek elde edilen verilerin analiz edilmesiyle araştırmanın bulguları 12 ana tema ve 80 alt tema başlığı altında toplandı. Katılımcıların 313’ü (%89,9) Down Sendromlu, 9’u (%2,5) Angelman Sendromlu, 7’si (%2,02) zihinsel engelli, 5’i (%1,4) Otizm tanılıydı. Çocukların %34,2’si 0-3 yaş, %28,7‘si 3-6 yaş, %20,9’u 6-10 yaş aralığındaydı. Acil servislerin %70 oranında “Acil müdahale gereken tüm durumlarda”, %10,8 oranında da “poliklinik randevusu alınamadığı durumlarda” kullanıldığı ifade edildi.
Sonuç: Nörogelişimsel hastalıklara sahip çocuklar acil serviste karşılanırken anlayışlı ve sabırlı bir şekilde, sade, anlaşılır bir dil kullanılarak, kalabalık olmayan sessiz ortamda muayenelerinin yapılmasının faydalı olacağı tespit edilmiştir. Sağlık çalışanlarına verilecek farkındalık eğitimi ve fiziksel koşullarda ‘Ayrı muayene ve müşahade odası bulunması’, ‘Erişilebilirlik’ ile gerekli tıbbi malzeme ve donanımının nörogelişimsel bozukluğa sahip çocuğa göre gözden geçirilmesinin bu gruptaki hastaların sorunlarını çözeceği düşünülmektedir.

Project Number

yok

References

  • 1. Harris, James C, New classification for neurodevelopmental disorders in DSM-5. Current Opinion in Psychiatry: March 2014 - Volume 27 - Issue 2 - p 95-97. doi: 10.1097/YCO.0000000000000042.
  • 2. Heady N, Watkins A, John A, Hutchings H. Prevalence of neurodevelopmental disorders and their impact on the health and social well-being among looked after children (LAC): a systematic review protocol. Syst Rev. 2022 Mar 19;11(1):49. doi:10.1186/s13643-022-01923-6.
  • 3. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM–5) Washington DC: American Psychiatry Association; 2013.
  • 4. WHO. World Health Organisation. Autism Spectrum Disorders. 2022. Available from: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
  • 5. Cooley, C. Down Sendromu (Çev: Emine Pürçüklü). Murat Yurdakök (Editör). Pediatri içinde. Ankara: Güneş Kitabevi; 2007
  • 6. O'Nualláin S, Flanagan O, Raffat I, Avalos G, Dineen B. The prevalence of Down syndrome in County Galway. Ir Med J. 2007 Jan;100(1):329-31. PMID: 17380922. https://pubmed.ncbi.nlm.nih.gov/17380922/
  • 7. Canfield MA, Honein MA, Yuskiv N, Xing J, Mai CT, Collins JS, et al. National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birth Defects Res A Clin Mol Teratol. 2006 Nov;76(11):747-56. doi: 10.1002/bdra.20294. PMID: 17051527.
  • 8. McDermott S, Zhou L, Mann J. Injury treatment among children with autism or pervasive developmental disorder. J Autism Dev Disord. 2008 Apr;38(4):626-33. doi: 10.1007/s10803-007-0426-9. Epub 2007 Aug 10. PMID: 17690968.
  • 9. Rose L, McKim D, Leasa D, Nonoyama M, Tandon A, Bai YQ, et al. Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study. Eur Respir J. 2018 Sep 18;52(3):1800754. doi: 10.1183/13993003.00754-2018. PMID: 30139772.
  • 10. Blake JM, Estrada Gomez D, Skotko BG, Torres A, Santoro SL. Pneumonia and respiratory infection in Down syndrome: A 10-year cohort analysis of inpatient and outpatient encounters across the lifespan. Am J Med Genet A. 2021 Oct;185(10):2878-2887. doi: 10.1002/ajmg.a.62355. Epub 2021 May 31. PMID: 34056836. 11. Kalb LG, Stuart EA, Freedman B, Zablotsky B, Vasa R. Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatr Emerg Care. 2012 Dec;28(12):1269-76. doi: 10.1097/PEC.0b013e3182767d96. PMID: 23187983. 12. Tint, A, Robinson, S, & Lunsky, Y (2011). Emergency Department Assessment and Outcomes in Individuals with Autism Spectrum Disorders. Journal on Developmental Disabilities, 17(2), 56-59. Available from: https://oadd.org/wp-content/uploads/2011/01/41010_JoDD_17-2_56-59_Tint_et_al.pdf
  • 13. Dorfman, D. H., & Mehta, S. D. (2006). Restraint Use for Psychiatric Patients in the Pediatric Emergency Department. Pediatric Emergency Care, 22(1), 7-12. doi: 10.1097/01.pec.0000195758.12447.69. PMID: 16418605
  • 14. Giarelli, E, Gardner, MR. Nursing of autism spectrum disorder: evidence-based integrated care across the lifespan. Springer Publishing Company, 2012.
  • 15. Williams CA, Angelman H, Clayton-Smith J, Driscoll DJ, Hendrickson JE, Knoll JH, et al. Angelman syndrome: consensus for diagnostic criteria. Angelman Syndrome Foundation. Am J Med Genet. 1995 Mar 27;56(2):237-8. doi: 10.1002/ajmg.1320560224. PMID: 7625452.
  • 16. Willlams CA. Lossie AC. Driscoll Dl. Angelman syndrome. Gene Clinics 1998; Avail- able at URL: wrnv.geneclinics.org.
  • 17. Glenn CC, DriscoU Dl. Yang TP. Nicholls RD. Genomic ~mprinting: Potential func- tion and mechanisms revealed by the Prader Willi and Angelman syndromes. Afol Hum Reprod 1997:3:321-332. https://doi.org/10.1093/molehr/3.4.321
  • 18. Kishino T, Lalande M, Wagstaff J. UBE3A/E6-AP mutations cause Angelman syndrome. Nat Genet. 1997 Jan;15(1):70-3. doi: 10.1038/ng0197-70. PMID: 8988171.
  • 19. Medical Staff Education. Use of Restraints: Yale-New Haven Hospital. https://www.ynhh.org/-/media/Files/YNHHS/PDF/med-staff-admin/2020-10-27-Revised-Med-Staff-Education.ashx
  • 20. Frank NC, Blount RL, Smith AJ, Manimala MR, Martin JK. Parent and staff behavior, previous child medical experience, and maternal anxiety as they relate to child procedural distress and coping. J Pediatr Psychol. 1995 Jun;20(3):277-89. doi: 10.1093/jpepsy/20.3.277. PMID: 7595816.
  • 21. LeDoux JE. Emotion circuits in the brain. Annu Rev Neurosci. 2000;23:155-84. doi: 10.1146/annurev.neuro.23.1.155. PMID: 10845062.
  • 22. Houghton BM. Caring for people with Down syndrome in A&E. Emerg Nurse. 2001 May;9(2):24-7. doi: 10.7748/en2001.05.9.2.24.c1358.
  • 23. Quinn F. The Principles and Practice of Nurse Education. London, Chapman and Hall, 1997.
  • 24. Argyle M. The Psychology of Interpersonal Behaviour. Harmondsworth, Penguin Publishing Co, 1983.
  • 25. Southampton Community NHS Health Services Trust. Learning Disabilities Resource Package. Proposal Pack. 1999.
  • 26. Shanley E, Guest C. Stigmatisation of people with learning disabilities in general hospitals. Br J Nurs. 1995 Jul 13-26;4(13):759-61. doi: 10.12968/bjon.1995.4.13.759. PMID: 7655262.
  • 27. Cinar O, Ak M, Sutcigil L, Congologlu ED, Canbaz H, Kilic E, et al. Communication skills training for emergency medicine residents. Eur J Emerg Med. 2012 Feb;19(1):9-13. doi: 10.1097/MEJ.0b013e328346d56d. PMID: 22241063.
  • 28. Bradley E, Lofchy J. Learning disability in the accident and emergency department. Advances in Psychiatric Treatment, 2005;11, 345–357 https://doi.org/10.1192/apt.11.1.45
  • 29. Vaz I. Improving the management of children with learning disability and autism spectrum disorder when they attend hospital. Child Care Health Dev. 2010 Nov;36(6):753-5. doi: 10.1111/j.1365-2214.2010.01144.x. PMID: 21039752.
  • 30. Cioffi J. Decision making by emergency nurses in triage assessments. Accident and emergency nursing, 1998, 6.4: 184-191. https://doi.org/10.1016/S0965-2302(98)90077-7
  • 31. Taylor SE, Taylor DM, Jao K, Goh S, Ward M. Nurse-initiated analgesia pathway for paediatric patients in the emergency department: a clinical intervention trial. Emerg Med Australas 2013; 25: 316–23. https://doi.org/10.1111/1742-6723.12103
  • 32. Hennequin M, Morin C, Feine JS. Pain expression and stimulus localisation in individuals with Down’s syndrome. Lancet 2000; 356: 1882–87. https://doi.org/10.1016/S0140-6736(00)03259-1
  • 33. Krauss BS, Calligaris L, Green SM, Barbi E. Current concepts in management of pain in children in the emergency department. Lancet. 2016 Jan 2;387(10013):83-92. https://doi.org/10.1016/S0140-6736(14)61686-X
  • 34. Mafrica F, Schifilliti D, Fodale V. Pain in Down's syndrome. ScientificWorldJournal. 2006 Jan 26;6:140-7. doi: 10.1100/tsw2006.27. PMID: 16493518; PMCID: PMC5917383.
  • 35. Rattaz C, Dubois A, Michelon C, Viellard M, Poinso F, Baghdadli A. How do children with autism spectrum disorders express pain? A comparison with developmentally delayed and typically developing children. Pain. 2013 Oct;154(10):2007-2013. doi: 10.1016/j.pain.2013.06.011. PMID: 24040973.
  • 36. Nader R, Oberlander TF, Chambers CT, Craig KD. Expression of pain in children with autism. Clin J Pain 2004; 20: 88–97. https://journals.lww.com/clinicalpain/Abstract/2004 /03000/Expression_of_Pain_in_Children_With_Autism.5.aspx
  • 37. Zelter LK. Krane EJ Pediatric pain management. In: Kliegeman RM, Stanton BF, St Geme JW III, Schor NF, Behrman RE. Nelson textbook of pediatrics, 19th ed. Philadelphia: Elsevier, 2011
  • 38. Tsao JC, Evans S, Seidman LC, Zeltzer LK. Experimental pain responses in children with chronic pain and in healthy children: how do they diff er? Pain Res Manag 2012; 17: 103–09. https://doi.org/10.1155/2012/592108
  • 39. Porter FL, Grunau RE, Anand KJ. Long-term effects of pain in infants, In: Oxford Textbook of Pediatric Pain, 2nd ed, Oxford University Press; 2021; p. 38-45.
  • 40. Cohen LL. Behavioral approaches to anxiety and pain management for pediatric venous access. Pediatrics 2008; 122 (suppl 3): S134–39. https://doi.org/10.1542/peds.2008-1055f
  • 41. Kuttner L. A child in pain. Wales: Crown House Publishing; 2010.
There are 39 citations in total.

Details

Primary Language English
Subjects Health Care Administration
Journal Section Surgical Science Research Articles
Authors

Hayri Canbaz 0000-0001-6989-7854

Attila Beştemir 0000-0003-0986-9039

Murat Gülşen 0000-0003-4494-9536

Alpay Tuncar 0000-0002-3889-819X

Project Number yok
Early Pub Date June 30, 2023
Publication Date June 30, 2023
Acceptance Date June 9, 2023
Published in Issue Year 2023

Cite

AMA Canbaz H, Beştemir A, Gülşen M, Tuncar A. Emergency service perspective of families with children who have neurodevelopmental diseases. CMJ. June 2023;45(2):21-30. doi:10.7197/cmj.1240428