Emotional aspects of parents of children with dysphagia

Main Article Content

Caroline Santos Rodrigues da Silva
Ruth Ramalho Ruivo Palladino
Fernanda Prada Machado
Esther Mandelbaum Gonçalves Bianchini


Dysphagia is a common swallowing disorder in the pediatric population, which may influence the quality of life and well-being of the family. The literature points to stress, guilt, and social isolation of family members. However, the management of psychosocial aspects involved in the treatment of pediatric dysphagia is rarely discussed. This study aimed to carry out an integrative review of the literature regarding the emotional aspects of parents of children with dysphagia. Therefore a search in the databases SciELO and PubMed was made, from January 2013 to June 2020, using the descriptors in Health Sciences (DeCs): "deglutition disorders" and "child". The search was performed with English and Portuguese language limiters using associated descriptors. The selection of the studies was performed by reading the title, abstract and, if necessary, full text, applying the inclusion and exclusion criteria. There were 2,169 publications, and 8 met the inclusion criteria. The included studies were examined according to the author, type of study, goals, emotional aspects involved in the treatment of swallowing disorders, and conclusions. The analysis was performed according to the presence of certain variables of the emotional aspects presented in the face of swallowing disorders, namely, parental stress, negative impact on parent/child interaction, guilt and frustration, and social isolation. The literature points out that pediatric dysphagia causes an emotional impact on the parents; indicating that it is necessary to offer emotional support and to adapt the clinical management to the different demands present in the clinic.


Download data is not yet available.

Article Details

How to Cite
Silva, C. S. R. da, Palladino, R. R. R., Machado, F. P., & Bianchini, E. M. G. (2023). Emotional aspects of parents of children with dysphagia. ABCS Health Sciences, 48, e023303. https://doi.org/10.7322/abcshs.2021050.1782
Review Articles
Author Biography

Caroline Santos Rodrigues da Silva, Pontifícia Universidade Católica de São Paulo (PUC-SP) – São Paulo (SP), Brazil


Mestranda na Pontifícia Universidade Católica de São Paulo

Linha de pesquisa: Linguagem, corpo e psiquismo


Durvasula VS, O’Neill AC, Ritcher GT. Oropharyngeal dysphagia in children mechanism, source, and management. Otolaryngol Clin. 2014;47(5):691-720. http://doi.org/10.1016/j.otc.2014.06.004

Menezes EC, Santos FAH, Alves FL. Cerebral palsy dysphagia: a systematic review. Rev CEFAC. 2017;19(4):565-74. https://doi.org/10.1590/1982-021620171944317

Freitas JS, Cardoso MCAF. Symptoms of dysphagia in children with cleft lip and/or palate pre- and post-surgical correction. CoDAS. 2018;30(1):e20170018. https://doi.org/10.1590/2317-1782/20182017018

Pavithran J, Puthiyottil IV, Narayan M, Vidhyadharan S, Menon JR, Iyer S. Observations from a pediatric dysphagia clinic: characteristics of children at risk of aspiration pneumonia. Laryngoscope. 2018;129(11):2614-18. https://doi.org/10.1002/lary.27654

Almeida ST, Ferlin EL, Maciel AC, Fagondes SC, Callegari-Jacques SM, Fornari F, et al. Acoustic signal of silent tracheal aspiration in children with oropharyngeal dysphagia. Logoped Phoniatr Vocol. 2018;43(4):169-74. https://doi.org/10.1080/14015439.2018.1487993

Kakodkar K, Schroeder Jr JW. Pedriatric dysphagia. Pediatr Clin North Am. 2013;60(4):969-77. https://doi.org/10.1016/j.pcl.2013.04.010

Heckathorn D, Speyer R, Taylor J, Cordier R. Systematic Review: Non-Instrumental Swallowing and Feeding Assessments in Pediatrics. Dysphagia. 2016;31(1):1-23. https://doi.org/10.1007/s00455-015-9667-5

Jadcherla SR, Shubert TR, Gulati IK, Jensen PS, Wei L, Shaker R. Upper and lower esophageal sphincter kinetics are modified during maturation: effect of pharyngeal stimulus in premature infants. Pediatr Res. 2015;77(1-1):99-106. https://doi.org/10.1038/pr.2014.147

Mahant S, Cohen E, Nelson KE, Rosenbaum P. Decision-making around gastrostomy tube feeding in children with neurologic impairment: engaging effectively with families. Paediatr Child Health. 2018;23(3):209-13. https://doi.org/10.1093/pch/pxx193

Alsaeed D, Furniss D, Blandford A, Smith F, Orlu M. Carers’ experiences of home enteral feeding: A survey exploring medicines administration challenges and strategies. J Clin Pharm Ther. 2018;43(3):359-65. https://doi.org/10.1111/jcpt.12664

Steele CM, Alsanei WA, Ayanikalath S, Barbon CEA, Chen J, Cichero JAY, et al. The influence of food texture and function: a systematic review. Dysphagia. 2015;30(1):2-26. https://doi.org/10.1007/s00455-014-9578-x

Marques JM, Sá LO. A alimentação da criança com paralisia cerebral: dificuldades dos pais. Rev Enferm Ref. 2016;4(11):11-9. http://dx.doi.org/10.12707/RIV16041

Zacarin CFL, Borges AA, Dupas G. Experiência da família de crianças e adolescentes com estomas gastrointestinais. Cienc Cuid Saude. 2018;17(2):1-7. https://doi.org/10.4025/cienccuidsaude.v17i2.41278

Wilken M. The impact of child tube feeding on maternal emotional state and identity: a qualitative meta-analysis. J Pediatr Nurs. 2012;27(3):248-55. https://doi.org/10.1016/j.pedn.2011.01.032

Wright CM, Parkinson KN, Drewett RF. How does maternal and child feeding behavior relate to weight gain and failure to thrive? Data from a prospective birth cohort. Pediatrics. 2006;117(4):1262-9. https://doi.org/10.1542/peds.2005-1215

Lefton-Greif MA, Okelo SO, Wright JM, Collaco JM, McGrath-Morrow SA, Eakin MN. Impact of children’s feeding/swallowing problems: validation of a new caregiver instrument. Dysphagia. 2014;29(6):671-7. https://doi.org/10.1007/s00455-014-9560-7

Malhi H. Dysphagia: warning signs and management. Br J Nurs. 2016; 25(10):546-9. https://doi.org/10.12968/bjon.2016.25.10.546

Colodny N. Validation of the Caregiver Mealtime and Dysphagia Questionnaire (CMDQ). Dysphagia. 2008;23:47-58. https://doi.org/10.1007/s00455-007-9094-3

Oliveira L, Valarelli LP, Caldas CACT, Nascimento WV, Dantas RO. Intervenção fonoaudiológica e anuência familiar em caso de criança com encefalopatia crônica não progressiva. Rev CEFAC. 2015;17(1):286-90. https://doi.org/10.1590/1982-021620157714

Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med. 2009;6(7):e1000097. https://doi:10.1371/journal.pmed1000097

Banhara FL, Farinha FT, Bom GC, Razera APR, Tabaquim MLM, Trettene AS. Parental care for infants with feeding tube: psychosocial repercussions. Rev Bras Enferm. 2020;73(2):1-8. https://doi.org/10.1590/0034-7167-2018-0360

Smith CH, Jebson EM, Hanson B. Thickened fluids: investigation of users’ experiences and perceptions. Clin Nutr. 2014;33(1):171-4. https://doi.org/10.1016/j.clnu.2013.10.012

Cowpe JE, Hanson B, Smith CH. What do parents of children with dysphagia think about their MDT? A qualitative study. BMJ Open. 2014;17;4(10): 1-8. https://doi.org/10.1136/bmjopen-2014-005934

Follent AM, Rumback AF, Ward EC, Marshall J, Dodrill P, Lewindon P. Dysphagia and feeding difficulties post-pediatric ingestion injury: Perspectives of the primary caregiver. Int J Pediatr Otorhinolaryngol. 2017;103:20-8. https://doi.org/10.1016/j.ijporl.2017.09.013

Craig GM. Psychosocial aspects of feeding children with neurodisability. Eur J Clin Nutr. 2013;67(Suppl 2):S17-20. https://doi.org/10.1038/ejcn.2013.226

Arvedson JC. Feeding children with cerebral palsy and swallowing difficulties. Eur J Clin Nutr. 2013;67(Suppl 2):S9-12. https://doi.org/10.1038/ejcn.2013.224

Benfer KA, Weir KA, Ware RS, Davies PSW, Arvedson J, Boyd RN, et al. Parent-reported indicators for detecting feeding and swallowing difficulties and undernutrition in preschool-aged children with cerebral palsy. Dev Med Child Neurol. 2017;59(11):1181-7. https://doi.org/10.1111/dmcn.13498

Conforti A, Valfré L, Falbo M, Bagolan P, Cerchiari A. Feeding and Swallowing Disorders in Esophageal Atresia Patients: A Review of a Critical Issue. Eur J Pediatr Surg. 2015;25(4):318-25. https://doi.org/10.1055/s-0035-1559819

Avitsland TL, Birketvedt K, Bjornland K, Emblem R. Parent-Reported effects of gastrostomy tube placement. Nutr Clin Pract. 2013;28(4):493-8. https://doi.org/10.1177/0884533613486484

Bilgin A, Wolke D. Associations Between Feeding Problems and Maternal Sensitivity Across Infancy: Differences in Very Preterm and Full-Term Infants. J Dev Behav Pediatr. 2017;38(7):538-44. https://doi.org/10.1097/DBP.0000000000000466

Follent AM, Rumbach AM, Ward EC, Marshall J, Dodrill P, Lewindon P. Dysphagia progression and feeding skills following pediatric alkali ingestion injury: two case reports. Disabil Rehabil. 2017;39(23):2452-9. https://doi.org/10.1080/09638288.2016.1231848

Carmona EV, Vale IN, Ohara CVS, Abrão ACFV. Maternal perception regarding hospitalized newborns. Rev Bras Enferm. 2014;67(5):788-93. https://doi.org/10.1590/0034-7167.2014670517

Kuperminc MN, Gottrand F, Samson-Fang L, Arvedson J, Bell K, Craig GM, et al. Nutritional management of children with cerebral palsy: a practical guide. Eur J Clin Nutr. 2013;67(Suppl 2):S21-S3. https://doi.org/10.1038/ejcn.2013.227