Komunikacija v zdravstveni negi v pediatriji je pomembno orodje za vzpostavljanje zaupanja in določa komunikacijske poti med otrokom, družino in zdravstvenimi delavci. Odvisna je od otrokove starosti ...in kognitivnega razvoja, zato medicinske sestre temu prilagajajo način komunikacije. Profesionalna komunikacija omogoča aktivno vključevanje otroka in njegove družine v proces obravnave, kar zagotavlja kakovostno obravnavo v zdravstveni negi v pediatriji.
Communication in pediatric nursing is an important tool for building trust and determining the communication paths between the child, family, and healthcare professionals. It depends on the child‘s ...age and cognitive development, so nurses have to adjust their communication style. Professional communication enables the active inclusion of the child and his family in the treatment process, which ensures quality care in pediatric nursing.
Izhodišča: Cistična fibroza (CF) je najpogostejša kronična avtosomno recesivno dedna bolezen belcev. Kaže se s prizadetostjo številnih organov, zato se bolniki spremljajo v centrih CF s ...specializiranim multidisciplinarnim timom strokovnjakov. Eden takih je center CF Pediatrične klinike Ljubljana, kjer se vodijo vsi otroci in mladostniki s CF v Sloveniji. Od ustanovitve centra dalje vodimo zbirko podatkov o bolnikih, ki nam je v pomoč pri analizi razmer in pri primerjavi kakovosti obravnave naših bolnikov z drugimi evropskimi centri CF.
Metode: Izvedli smo retrospektivno raziskavo z namenom pregledati in oceniti kazalce bolezni otrok in mladostnikov s CF, vodenih na Pediatrični kliniki Ljubljana v letu 2020. Pri 78 vključenih bolnikih smo analizirali podatke o demografskih značilnostih, genetskih mutacijah, pljučni funkciji, prehranjenosti, kroničnih okužbah in zdravljenju s CFTR modulatornimi zdravili (angl. cystic fibrosis transmembrane conductance regulator, CFTR – regulator transmembranske prevodnosti pri cistični fibrozi). Za primerjavo z drugimi evropskimi centri smo uporabili podatke iz letnega poročila Evropskega registra CF za leto 2020.
Rezultati: Leta 2020 smo v našem centru obravnavali 78 bolnikov, izmed katerih je bilo 56 % (44/78) bolnikov moškega spola. Povprečna starost bolnikov je znašala 13,2 leta (SD 6,4 let), z razponom od 1,2 leta do 25,5 leta. Mutacija F508del je bila najpogosteje zastopana, saj je bilo kar 88,5 % nosilcev vsaj ene, pri 64,1 % obolelih pa je bila mutacija prisotna na obeh alelih. Povprečni forsirani izdihani volumen v 1 sekundi (FEV1) naših bolnikov je bil nad evropskim povprečjem, prevalenca kronične okužbe s povzročiteljem Pseudomonas aeruginosa pa nižja od evropskega povprečja. V letu 2020 smo 21 bolnikom uvedli CFTR modulatorno zdravilo, od tega 5 bolnikom lumakaftor/ivakaftor in 16 bolnikom eleksakaftor/tezakaftor/ivakaftor.
Zaključek: Kazalci kakovosti obravnave otrok in mladostnikov s CF v Sloveniji dosegajo in pogosto presegajo evropsko povprečje. Med prvimi državami v Evropi smo pričeli uvajati CFTR modulatorna zdravila, ki obetajo pomembno izboljšanje kliničnega stanja in kakovosti življenja bolnikov s CF.
Zdravstvena vzgoja je del poklicnih aktivnosti zdravstvene nege. Zdravstvena vzgoja na terciarni ravni se razlikuje od zdravstvene vzgoje na primarni in sekundarni ravni. Kronični bolniki – otroci in ...njihovi starši/skrbniki so izjemno občutljiv del prebivalstva, zato potrebujejo skrbno obravnavo. Nujna je celostna obravnava, ki je usmerjena v celotno družino. Pridobivanje znanja mora biti sistematično, načrtovano vnaprej in tudi preverjano. V obravnavo vključimo tudi druge strokovnjake, npr. psihologa, socialnega delavca, patronažno medicinsko sestro, učitelje v šoli ali vzgojitelje v vzgojno-varstvenem zavodu.
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in ...pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.
Conclusions
: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.
What is Known:
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Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.
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Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.
What is New:
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To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.
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The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.
Health education is part of the professional activities of healthcare. Health education at the tertiary level differs from health education at the primary and secondary levels. Chronic patients - ...children and their parents/caregivers are a susceptible population and require even more careful treatment. A comprehensive approach is necessary, which is directed towards the entire family. The acquisition of knowledge must be systematic, pre-planned and also verified. It is appropriate to involve other professionals in the treatment, such as a: psychologist, social worker, community nurse, teachers in school, or educators in a childcare institution.
The acuity of illness of sick children requiring care in hospital is increasing. There are many more children now with disabilities and complicated long term illnesses. Respiratory illness is the ...commonest cause of morbidity in young children. Nurses have a pivotal role in the anticipation of and/or early identification of the sick child with potential or actual respiratory failure through the assessment and measurement of the child's pattern of breathing, including rate, rhythm and effort. It should also be conducted and interpreted in association with other clinical assessments, for example cardiovascular. Record keeping is an essential part of nursing care because it details the patient journey through the healthcare process. Good quality record keeping can improve the quality of patient care and for this reason nurses must seek to ensure that their documentation practices meet high standards. Poor standards of documentation were a contributory factor in the failure to detect patients who were clinically deteriorating. In this article we searched for evidence whether electronic health records has positive impact on quality of nursing care and present our experiences with electronic nursing documentation in the field of respiratory assessment of the children and young people.
Cystic brosis (CF) is a multi-organ disease, affecting mostly lungs and gastrointestinal tract. Data from patient registries show that the survival of patients with CF has progressively improved over ...the past few decades, as a result of advances in antibiotic treatment, supplementation of pancreatic enzymes, better nutrition and a comprehensive approach to treatment in CF centres. The purpose of this review is to survey recent developments in the treatment of lung disease in children and adolescents with CF. We describe newborn screening for CF. Lung disease is the most common cause of morbidity and mortality in CF patients. Emerging new therapies are targeted at all points in the pathogenesis of lung disease, from drugs that treat infection and inammation in the airways to gene transfer studies and to drugs that augment airway surface liquid height. A number of antibacterial agents formulated for inhalation are at various stages of study and there are several anti-inammatory candidate drugs in clinical trials. The most important development in the recent years is the modulation of the abnormal protein that causes CF, the cystic brosis trans-membrane regulator (CFTR), where drugs are targeted at specic defects in the transcription, processing or functioning. When chronic respiratory insufficiency occurs, lung transplantation becomes a very important issue. The role of the CF nurse, who has responsibilities in educating and teaching clinical skills to patients and families, is described.
