Palliative Care of Babies Suffering from Congenital Malformation: Maternal Feelings and Difficulties
Keywords:congenital malformation, palliative care, nursing assistance
Objective: To describe the feelings experienced by mothers of babies suffering from congenital malformation in need of palliative care; to identify the difficulties experienced by mothers of babies with congenital malformation in need of palliative care. Methodology: it concerns an exploratory research, of a qualitative nature, conducted at the Neonatal Intensive Care Unit and at the Neonatal Intensive Treatment Unit of a reference maternity hospital located in the northeast of Brazil. The data were collected between September and October 2015, through a semi-structured interview, and analyzed through content analysis technique, by means of the following main themes: feelings of mothers of babies with congenital malformation in need of palliative care; difficulties related to a need for care outside the hospital environment. Results: The feelings of sadness, anxiety, insecurity and fear of losing the child were the ones most highlighted by the mothers. The main difficulties reported were those regarding financial aspects due to the necessity of acquiring the essential input to provide the baby with care, and the impossibility to return to their work due to the need of exclusive dedication to the child under palliative care. Conclusion: The necessity of a warm and humanized nursing assistance was highlighted; such assistance can contribute to the positive confrontation of the reality of having a baby suffering from an incurable problem that threatens life.
Nardi CGA, Rodrigues OMPR, Melchiori LE, Salgado MH, Tavano LD. BebÃªs com SequÃªncia de Pierre Robin: saÃºde mental materna e interaÃ§Ã£o mÃ£e-bebÃª. Estudos de Psicologia. 2015;32(1):129-40. Available from: http://dx.doi.org/10.1590/0103-166X2015000100012.
Rojas M, WALKER L. Malformaciones congÃ©nitas: aspectos generales y genÃ©ticos. Int. J. Morphol. 2012;30(4):1256-65. Available from: http://dx.doi.org/10.4067/S0717-95022012000400003.
Mlakar J, Korva M, Tul N, PopoviÄ‡ M, PoljÅ¡ak-Prijatelj M, Mraz J, et al. Zika Virus Associated with Microcephaly. Engl J Med. 2016;374(10):951-58. Available from: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1600651.
Center of Disease Control and Prevention. World Birth Defects. Morbidity and Mortality Weekly Report. Academic Onefile. 2016;191. Available from: http://www.cdc.gov/mmwr/index.html.
Knops RR, Kramer LC, Verhagen AA. Paediatric palliative care: recomendation for treatment of symptoms in the Netherlands. BMC Palliative Care. 2015;14(57). Available from: 10.1186/s12904-015-0054-7.
Bergstraesser E, Hain RD, Pereira JL. The development of an instrument that can identify children with palliative care needs: the Paediatric Palliative Screening Scale (PaPaS Scale): a qualitative study approach. 2013; 12(20):1-14. Available from: http://www.biomedcentral.com/1472-684X/12/20.
Bernardo CM, Bernardo DM, Costa IA, Silva LR, AraÃºjo WGP, Spezan RS. The importance of palliative care provided by the nurse for children with cancer in terminal phase. J. res.: fundam. care. 2013;6(3):1221-1230. Available from: http://www.seer.unirio.br/index.php/cuidadofundamental/article/view/1561.
Frota MA, Silva PFR, Moraes SR, Martins EMCS, Chaves EMC, Silva CAB. Alta hospitalar e o cuidado do recÃ©m-nascido prematuro no domicÃlio: vivÃªncia materna. Esc. Anna Nery (Internet). 2013;17(2). Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414-81452013000200011.
Gomes R. Pesquisa qualitativa em saÃºde. SÃ£o Paulo: Instituto sÃrio-libanÃªs de Ensino e pesquisa, 2014. Available from: http://ensino.hospitalsiriolibanes.com.br/downloads/caderno-pesquisa-qualitativa-mestrado-2014.pdf.
Bardin L. AnÃ¡lise de ConteÃºdo. 70Âª ed. SÃ£o Paulo;2011.
Bonanno L, Bennett MJ, Pitt A. The experience of parents of newborns diagnosed with a congenital anomaly at birth: A systematic review protocol. JBI Database of Systematic Reviews and Implementation Reports. 2013;11(11):100-11.Available from: 10.11124/jbisrir-2013-903.
Lemacks J, Fowles K, Mateus A, Thomas K. Insights from Parents about Caring for a Child with Birth Defects. International Journal of Environmental Research and Public Health. 2013;10(8):3465-3482. Available from: 10.3390/ijerph10083465.
Colleman PK. Diagnosis of Fetal Anomaly and the Increased Maternal Psychological Toll Associated with Pregnancy Termination. Issues in Law & Medicine. 2015; 30(1);3-23. Available from: http://www.ncbi.nlm.nih.gov/pubmed/26103706.
Fonseca A, NazarÃ© B, Canavarro MC Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: A controlled comparison study with parents of healthy infants. Disability and Health Journal. 2012; 5(2):67-74. Available from: http://dx.doi.org/10.1016/j.dhjo.2011.11.001.
Teixeira LG, Lemos MF. A relaÃ§Ã£o mÃ£e-bebÃª: um vÃnculo necessÃ¡rio. Perspectivas em Psicologia. 2012;16(1):25-45.
Methiesen ER, Hod M, Ivanisevic M, Garcia SD, BrÃ¸ndsted L, JovanoviÄ L, et al. Maternal Efficacy and Safety Outcomes in a Randomized, Controlled Trial Comparing Insulin Detemir With NPH Insulin in 310 Pregnant Women With Type 1 Diabetes. Diabetes Care. 2012;35(10):2012-17. Available from: http://dx.doi.org/10.2337/dc11-2264.
Crozier F, Lauren E. Hancock Pediatric Palliative Care: Beyond the End of Life. Pediatric Nursing. 2012; 38(4):198-203. Available from: http://pediatricnursing.net/ce/2014/article3804198227.pdf.
Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, et al. Pediatric Palliative Care Programs in Childrenâ€™s Hospitals: A Cross-Sectional National Survey. Pediatrics. 2013; 132(6): 1063-1070. Available from: http://pediatrics.aappublications.org/content/pediatrics/132/6/1063.full.pdf.
Dias TKC, Guedes ATA, Batista, TNL, Vieira DS, Albuquerque TM, Santos NCCB, et al. Kangaroo Mother Care: Feelings and perceptions of mothers in stage three. International Archives of Medicine. 2016; 9(7):1-10. Available from: http://imed.pub/ojs/index.php/iam/article/view/1457/1159.
Silva MEA, Gomes IP, Machado AN, Vaz EMC, Reichert APS ; Collet N. ImplicaÃ§Ãµes da condiÃ§Ã£o crÃ´nica da crianÃ§a para sua famÃlia. CiÃªncia, Cuidado e SaÃºde (Online). 2014;13(4):697-704. Available from: 10.4025/cienccuidsaude.v13i4.20816.
Kang TI, Munson D, Hwang J, Feudtner C. Integration of Palliative Care Into the Care of Children With Serious Illness. Pediatrics in Review. 2014; 35(8). Available from: http://pedsinreview.aappublications.org/content/35/8/318.
Authors who publish with this journal agree to the following terms:
- Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under aÂ Creative Commons Attribution LicenseÂ that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
- Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
- Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (SeeÂ The Effect of Open AccessÂ and Benefits of Publishing Open Access).