Experiences of Mothers with a Child with a History of Esophageal Atresia at Preschool Age: a Phenomenological Study
الموضوعات : Journal of Family Centered Health Care
Forouzandeh Dashti
1
(Community Health Research ,Isfahan Branch, Islamic Azad University ,Iran)
Masoumeh Shahbaz Ghahrouei
2
(community Health Research ,Isfahan Branch, Islamic Azad University.)
Heidarali Abedi
3
(Community Health Research, Isfahan Branch .Islamic Azad University)
الکلمات المفتاحية: Child Atresia Esophageal, Mothers Experience. Phenomenological Study,
ملخص المقالة :
Background: Esophageal Artesia is one of the neonatal malformations that has contradiction with life and is neonatal surgery emergency. This anomaly makes many problems for mothers because they have to look after their operated babies. Due to this illness in digestion system and negative effect on infant nutrition, growth and development, it might result in mother’s and child’s unsuitable quality of life for many years.Methods: The study uses a qualitative approach to phenomenology. Sampling method is based on objective and is done until data saturation. Information from16 unstructured interviews with 10 mothers who have children with a history of Esophageal Artesia surgery has been collected. Colaizzi method is used for data analysis.Results: Interviews were extracted and analyzed. Seven themes and sub concepts were identified which were: 1-knowledge and awareness,2- readiness for acceptance and compatibility with the child's medical condition, 3-support and companionship,4- effective services of health care system, 5-concern and anxiety,6- tough and difficult moments of living with pediatric patients and complications 7- disease problems of Esophageal Artesia in children.Conclusions: The results of this study represent a wide range of problems and needs of mothers with a child with Esophageal Artesia. Child’s parents often have not adequate education, support of the treatment team, and don’t follow up after they leave hospital. Therefore, with forming multipurpose group in hospital and home visiting mother and child as a cure, attention was paid until child’s health condition recovered.
1-Baldwin,D. Yadav,D. Esophageal Atresia,National Library of medicine, April 24, 2023.
2-Natnael Moges ,M. N,Ahmed,K. Birhanu,D. Belege,F. Dimtse,A. Kerebeh,G. Kassa,BD. Geta,K. Oumer,KE. Zewde,EA. Dessie,AM.Anley,DT. Demis,S. GebreEyesus,FA. Bantie,B.Surgical outcome and predictors of neonates with esophageal atresia admitted at Tikur Anbesa Specialized Hospital ,Plos one Journal, May 16, 2023.
3-National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Facts about Esophageal Atresia, June 28, 2023.
4-Ardenghi,C. Vestri,E. Costanzo,S. Lanfranchi.G.Veremati,M.Destro.F. Pierucci,UM.Calcaterra,V. Pelizzo,G. Congenital Esophageal Atresia Long-Term Follow-Up—The Pediatric Surgeon’s Duty to Focus on Quality of Life, Child Health and Surgery, 1 March 2022.
5-Fallahi , M.Babaei ,Gh. SinaKazemian ,S.SalehehTajalli , Noripour ,Sh.Rouzrokh , M.Hajipour ,M Kazemian,M.Predictors of Early Mortality in Esophageal Atresia: A 12-year Cohort Study in Tehran Iranian Journal of Pediatrics: Vol.32, issue 6; e129266, November 11, 2022.
6- Vanhoorn,CE. Kate,CAT. Rietman,AB. Toussaint-Duyster,LCC. Stolker,RJ. H Wijnen,RM. Graaff,JCD. Long-term neurodevelopment in children born with esophageal atresia: a system article review, Diseases of the Esophagus, Volume 34, Issue 11, November 2021.
7- Intissar,Ch. Faouzi,N. Yosra,B. Mariam,M. Tarek,B. Awatef,Ch. Said,J. Esophageal atresia with tracheoesophageal fistula: A novel rare variant, Journal of Pediatric Surgery Case Reports, Volume 64, January 2021, 101691.
8-Abedi,HA. Application of phenomenological research method in clinical sciences, Strategy Quarterly, volume 19, issue 52, 2009, page 207-224
9-Muller,H.Weiss,CH.wanger,A.Schellere,v.Hoernina,A.Diez,s.Association clinical factors with postoperative complications of esophageal atresia, pediatrics and Neonatology journal, volume 62,issue 1.january 2021
10- Mackenzie, C. Lees, a. Ioana Bratu, b . Maryna Yaskina ,c . Michael van, M. Oral feeding outcomes in infants with esophageal atresia and tracheoesophageal fistula, Journal of Pediatric Surgery,53,2018,929-932.
11-Morini,F. Conforti,A. Zani,A. Sindjic-Antunovic,S. Koivusalo,A. Friedmacher., F.vanHeurn, E. Pierro,A Hollwarth,M . Bagolan,.P. the EUPSA Esophageal Atresia Registry. Diagnostic Workup of Neonates With Esophageal Atresia: Results From the EUPSA Esophageal Atresia Registry, Sec. Pediatric Surgery, Volume 8, 2022.
12- Garabedian, C, Sfeir, R. Langlois, C. Bonnard ,A. Khen-Dunlop, N. Gelas, T. Does prenatal diagnosis modify neonatal treatment and early outcome of children with esophageal Artesia? American journal of obstetrics and gynecology. 2015;212(3):340. e1-. e7
13- Prato, AP. Carlucci, M. Bagolan ,P. Gamba, P. Bernardi, M. Leva, EA, cross-sectional nationwide survey on esophageal Artesia and trachea esophageal fistula. Journal of pediatric surgery. 2015;50(9):1441-56.
14-Sadreameli, SC. McGrath-Morrow ,SA. Respiratory Care of Infants and Children with Congenital Trachea esophageal Fistula and esophageal Artesia. Pediatric respiratory reviews. 2015.
15-Sun, LY-C. Laberge, J-M. Yousef ,Y. Baird, R. The Esophageal Anastigmatic Stricture Index (EASI) for the management of esophageal Artesia. Journal of pediatric surgery. 2015;50(1):107-10.
16- Zhu, H. Shen, C. Xiao X, Dong K, Zheng S. Reoperation for anastigmatic complications of esophageal Artesia and trachea esophageal fistula. Journal of pediatric surgery. 2015;50(12).
17- IJsselstijn ,H. Gischler ,SJ. Toussaint, L. Spoel, M. van der Cammen-van, MH. Tibboel ,D. Growth and development after esophageal Artesia surgery: Need for long-term multidisciplinary follow-up. Pediatric respiratory reviews. 2015.
18- Mahoney, L. Rosen, R. Feeding Difficulties in Children with Esophageal Artesia. Pediatric respiratory reviews. 2015.
19- Rosati, SF. Maarouf, R. Oiticica, C. Lange, P. Haynes, J. Lanning D. A treatment program for babies with esophageal Artesia in Belize. Journal of Surgical Research. 2015;199(1):72-6.
20-Connor, MJ. Springford, LR. Kapetanakis ,VV. Giuliani, S. Esophageal Artesia and transitional care, a systematic review and meta-analysis of the literature to define the prevalence of chronic long-term problems. The American Journal of Surgery. 2015;209(4):747-59.
21-Fragoso AC, Martinez L, Estevão-Costa J, Tovar JA. Lung maturity in esophageal atresia: Experimental and clinical study. Journal of pediatric surgery. 2015;50(8):1251-9.
22-Wang, B. Tashiro,J. Allan, BJ. Sola, JE. Parikh, PP. Hogan, AR. A nationwide analysis of clinical outcomes among newborns with esophageal Artesia and trachea esophageal fistulas in the United States. Journal of Surgical Research. 2014;190(2):604-12.
23-Shawyer, AC. Pemberton, J. Flageole, H. Post-operative management of esophageal atresia–tracheoesophageal fistula and gastro esophageal reflux: A Canadian Association of Pediatric Surgeons annual meeting survey. Journal of pediatric surgery. 2014;49(5):716-9.
24-Nabzdyk, CS. Chiu, B., Jackson, C-C. Chwals, WJ. Management of patients with combined trachea esophageal fistula, esophageal Artesia, and duodenal Artesia. International journal of surgery case reports. 2014;5(12):1288-91.
25- Conforti ,A. Morini ,F. Bagolan, P. Difficult esophageal Artesia: Trick and treat. Seminars in pediatric surgery; 2014: Elsevier.
26-Nateghian ,A. Delshad, S. Nasiri, SJ. Farhood ,P. Javanbakht ,M. Investigating respiratory complications and anomalies after esophageal Artesia treatment in Aliasghar Hospital in Tehran during 1995-2009. Razi Journal of Medical Sciences. 2014;21(123):75-82.
27-Sulkowski ,JP. Deans, KJ. Asti ,L. Mattei, P. Minneci ,PC. Using the Pediatric Health Information System to study rare congenital pediatric surgical diseases: development of a cohort of esophageal Artesia patients. Journal of pediatric surgery. 2013;48(9):1850-5.
28-Black, JM. Hawks ,JH. Medical Nursing clinical management for positive outcome .9th: In PAMacdoland Mosbey-Elsevier; 2012.
29-Streubert, HJ. Carpenter, DR. Qualitative Research in Nursing Advancing the Humanistic Imperative 5th: Philadelphia lippincott William and Wikins; 2011.
30-Hiradfar ,M. Bazrafshan, A. Judi, M. Gharavi, M. Shojaeian ,R. An 8-year experience of esophageal Artesia repair in Sarvar children hospital (Mashhad-IRAN). Iranian Journal of neonatology. 2012;3(1):20-2.[in Persian].
31-Huang ,J. Tao, J. Chen, K. Dai, K. Tao, Q. Chan, I. Thoraces scopes repair of esophageal Artesia: experience of patients from two tertiary referral centers. Journal of pediatric surgery. 2012;47(12):2224-7.
32- Martins Pinheiro,PF. Simões ,E. Silva,AC, Pereira,RM. Current knowledge on esophageal atresia, World J Gastroenterol. 2012 Jul 28; 18(28): 3662–3672
33- khalesi ,N. taghipour, R. aflatoonian, M. Frequency of Anomalies in Neonates with Esophageal Atresia in Aliasghar Children's Hospital from 2005 to 2007. Journal of Medical Science Iran. 2009;16(67):40-5.[in Persian]..
34-De Jong, EM, Felix< JF, Deurloo< JA, Van Dooren, MF. Aronson ,DC. Torfs ,CP. Non-VACTERL-type anomalies are frequent in patients with esophageal atresia/tracheo-esophageal fistula and full or partial VACTERL association. Birth Defects Research Part A: Clinical and Molecular Teratology. 2008;82(2):92-7
