Interdisciplinary nursing care for a child with a rare disease on the example of a patient with Apert’s syndrome

Agnieszka Sprycha; Małgorzata Roman; Katarzyna Młynarska; Krzysztof Dowgierd

eISSN: 2084-9850
ISSN: 1897-3116

Pielęgniarstwo Chirurgiczne i Angiologiczne/Surgical and Vascular Nursing

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2/2022
vol. 16

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abstract:

Case report

Interdisciplinary nursing care for a child with a rare disease on the example of a patient with Apert’s syndrome

Agnieszka Sprycha

¹

,

Małgorzata Barbara Roman

^{1, 2}

,

Katarzyna Młynarska

^{2, 3}

,

Krzysztof Dowgierd

^{1, 4}

Klinika Chirurgii Głowy i Szyi Dzieci i Młodzieży, Wojewódzki Specjalistyczny Szpital Dziecięcy im. prof. dr. S. Popowskiego, Olsztyn, Polska

Katedra Pielęgniarstwa, Wydział Nauk o Zdrowiu, Collegium Medicum Uniwersytetu Warmińsko-Mazurskiego, Olsztyn, Polska

Szpitalny Oddział Ratunkowy dla Dzieci, Wojewódzki Specjalistyczny Szpital Dziecięcy im. prof. dr. S. Popowskiego, Olsztyn, Polska

Klinika Pediatrii Klinicznej, Wydział Lekarski, Uniwersytet Warmińsko-Mazurski, Olsztyn, Polska

Pielęgniarstwo Chirurgiczne i Angiologiczne 2022; 16(2): 66-72

Online publish date: 2022/07/08

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Introduction
Apert syndrome is the genetically determined occurrence of several large congenital abnormalities that build up the clinical picture. It is a disease that occurs rarely.

Aim of the study
Attempt to develop and present a comprehensive nursing care plan over a child with Apert syndrome, taking into account the patient’s bio-psycho-social spheres and his family.

Material and methods
An individual case study method was used in the work. Documentation analysis medical supervision, direct observation of the patient, an interview, and the necessary measurements were made vital signs were used to gather the information to research techniques.

Results
The most important health problems of a patient with Apert syndrome are life-threatening as a result of increased intracranial pressure, apnoea, retention secretions in the airways, tracheostomy tube in the trachea, and difficulties with food intake.

Conclusions
There is a risk that the child is excluded by their peers and society because of their different appearance.

keywords:

Interdisciplinary nursing care for a child with a rare disease on the example of a patient with Apert’s syndrome

Agnieszka Sprycha 1 , Małgorzata Barbara Roman 1, 2 , Katarzyna Młynarska 2, 3 , Krzysztof Dowgierd 1, 4

nursing diagnosis, case study, Apert syndrome

Agnieszka Sprycha

¹

,

Małgorzata Barbara Roman

^{1, 2}

,

Katarzyna Młynarska

^{2, 3}

,

Krzysztof Dowgierd

^{1, 4}