Paediatric medical traumatic stress (PMTS) is a set of children’s and their parents’ psychological and physiological responses to pain, injury, serious illnesses, and other experiences with the medical environment. Paediatric cancer patients have the highest prevalence of PMTS as the illness involves a set of stressors that trigger many negative psychological reactions. Posttraumatic stress symptoms (PTSS) are one of the most common psychopathologies among cancer patients. We examined the incidence of PMTS in children with cancer and their parents due to coping with a serious illness and treatment complications. We analysed the following risk factors for PTSS: selected groups of individuals, medical interventions, complications, and treatment modalities. The study involved 183 parents of 133 children and 63 children and adolescents who were treated between 2009 and 2019 at Clinical Department of Paediatric Haematology and Oncology of Paediatric Clinic in Ljubljana. We collected the data using The Intensity of treatment rating scale 2.0 [IRT-2], PTSD checklist for Children/Parent [PCL-C/PR], The PTSD Checklist for DSM-5 [PCL-5] and The Child PTSD Symptoms Scale for DSM-5 [CPSS-5]. PMTS is frequently present in both, children and their parents, regardless of the cancer type, treatment duration, treatment outcome, and child’s age. Mothers, patients with relapse, patients who were diagnosed after age 5, patients with more intensive treatment, and parents of the latter are at higher risk for PMTS occurrence. Additionally, we found a decreasing trend of traumatic responses after five or more years post cancer diagnosis and that parents are more traumatized than children. Our findings will contribute to the systematic prevention of PMTS and medical trauma and to endeavour to use trauma-informed care.
Dogodki, povezani z različnimi boleznimi, poškodbami in kroničnimi stanji ter z njimi povezano zdravljenje in medicinske intervencije, predstavljajo najpogostejše potencialne travmatske izkušnje v otroštvu. V članku se avtorice sprašujemo o pojavu travmatskega stresa in medicinske travme pri otrocih in njihovih družinah. Pri prepoznavanju medicinske travme si lahko pomagamo s teoretičnim modelom dolgotrajne somatske grožnje, ki je bil oblikovan z namenom razločevanja med medicinsko in nemedicinsko travmo (ki je niso povzročili medicinski dogodki). Različne raziskave poročajo, da kar do 80 % otrok in njihovih družin doživlja nekoliko travmatskega stresa pri soočanju z življenjsko ogrožajočimi boleznimi, poškodbami ali bolečimi medicinskimi postopki. Približno 20–30 % staršev ter 15–25 % otrok in njihovih sorojencev pa celo doživlja trajen travmatski stres, ki ovira vsakodnevno delovanje in vpliva na sam potek zdravljenja ter okrevanja. Razvoj in potek pediatrične medicinske travme ponazarja model pediatričnega medicinskega travmatskega stresa, ki za posamezno fazo poteka navaja tudi cilje intervencij. Poleg psihologa ima pri preprečevanju travme, ki se lahko pojavi pri obravnavi otrok, mladostnikov in njihovih staršev, pomembno vlogo tudi zdravstveno osebje. Vsi strokovni oziroma zdravstveni delavci si moramo prizadevati, da obravnava in oskrba otrok vključuje zavedanje in ozaveščanje o travmi. Na ta način lahko namreč pomembno preprečimo ali zmanjšamo negativne posledice travme, do katere lahko pride v medicinskem okolju.
Raziskave kažejo, da je primeren čas za začetek toaletnega treninga po 2. letu, saj takrat otroci dosežejo nadzor nad mišicami medeničnega dna in analnega sfinktra, vendar pa mora otrok prej osvojiti določene veščine, ki jih bo potreboval za toaletni trening. Te otroci dosežejo vsak ob svojem času. Zato klasifikacije opredelijo motnje izločanja šele po 4. oziroma 5. letu. Motnje izločanja so v mednarodni klasifikaciji DSM 5 opredeljene v dveh kategorijah: enureza in enkopreza (American Psychiatric Association, 2013). V psihološki praksi se z motnjami izločanja srečamo v okviru sistematskih pregledov ali pa so otroci napoteni zaradi negativnega vpliva, ki ga imajo motnje izločanja na otrokov socialni in čustveni razvoj. Pregled literature kaže, da je med najbolj učinkovitimi načini obravnave motenj izločanja vedenjska terapija oziroma izbrane tehnike, ki jih bomo v prispevku tudi predstavili.
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:• 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.• 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:• 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.• 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.
Na zaposlenost bolnikov s kronično ledvično boleznijo (KLB), ki so zboleli v otroštvu, vpliva celoten potek razvoja bolezni med odraščanjem in tudi kasneje v odraslosti. Pogoste odsotnosti od pouka, slabše nevrokognitivno delovanje in težave s telesnim zdravjem prispevajo k slabšemu učnemu uspehu, nižji stopnji dosežene izobrazbe in čustvenim težavam, kot so slabša samopodoba, občutek osamljenosti, anksioznost in depresivnost. Mladi odrasli s KLB so manj samostojni in dosežejo manj razvojnih mejnikov ter kasneje kot zdravi vrstniki. Zaradi nižje dosežene izobrazbe in predvideno pogostih bolniških odsotnosti so manj privlačni za delodajalce. Na kakovost življenja in zaposljivost bolnikov s KLB pomembno vplivata tudi starost, pri kateri nastopi končna ledvična odpoved, in način nadomestnega zdravljenja. Kljub vsem težavam se večina bolnikov čuti sposobne za delo in si želi zaposlitve. Smiselno je ozaveščati učitelje in delodajalce o omejitvah KLB ter pomagati bolnikom pri iskanju zaposlitve.
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