Parents\u27 perspective on a model of family centered care in neonatal and pediatric intensive care units in Slovenia

Uvod: Sprejem bolnega otroka v pediatrično intenzivno enoto povzroča stres in lahko obremenjujoče vpliva na celotno družino. V družino usmerjena skrb je inovativen konstrukt, ki se osredotoča na partnerski odnos med pacientom, družino in zdravstvenim osebjem z namenom empatične, učinkovite in kakovostne zdravstvene oskrbe. Implementacija modela v klinično okolje ostaja izziv. Namen: Preučiti, kakšna je vključenost elementov modela v družino usmerjene skrbi v neonatalnih in pediatričnih intenzivnih enotah v Sloveniji. Metode dela: Uporabili smo deskriptivno metodo dela s pregledom znanstvene in strokovne literature v slovenskem in angleškem jeziku. V empiričnem delu je bila uporabljena kvantitativna metoda raziskovanja. Izveden je bil spletni vprašalnik, ki je bil povzet po že preizkušenem tujem vprašalniku Inštituta za v družino usmerjeno skrb (Patient- and family-centered pediatric intensive care: a self-assessment inventory). Spletno anketiranje je potekalo s pomočjo spletnega orodja EnKlikAnketa. Vzorec je obsegal 122 staršev. Podatke smo statistično obdelali s pomočjo računalniškega programa SPSS (verzija 20.0, operacijski sistem Windows). Za analizo podatkov smo uporabili Hi-kvadrat test in Pearsonov korelacijski test. Veljavnost in zanesljivost vprašalnika smo preverili s koeficientom Cronbach alfa. Rezultati: Pravila enot omejujejo 24-urno prisotnost staršev ob otroku. Starši so zadovoljni s komunikacijo, vendar si želijo večje informiranosti. Večina staršev je imela možnost vključevanja v skrb za otroka. Staršem je najbolj pomemben koncept delitve informacij in najmanj koncept sodelovanja, ki je v kliničnem okolju najslabše zastopan. Starejšim staršem je manj pomembna finančna podpora, bolj pa jim je pomembna zasebnost. Staršem z višjo izobrazbo je pomembno, da so ob otroku 24 ur na dan, da je komunikacija sprotna in da lahko izrazijo svoje skrbi. Staršem z več otroki je manj pomembna enakopravna obravnava očetov. V zadnjih treh letih je manj staršev vedelo, ali so imeli na kliničnih oddelkih možnost sodelovanja s psihologom in socialnim delavcem. Manj jih je vedelo, ali imajo zdravi sorojenci in ostali zdravi družinski člani možnost obiskovanja hospitaliziranega otroka. Razprava in zaključek: Elementi v družino usmerjene skrbi so v slovenskih pediatričnih intenzivnih enotah implementirani neenotno. Staršem je pomembno, da se tekom hospitalizacije upošteva načela v družino usmerjene skrbi. Izpostavljena je potreba po izobraževanju zdravstvenega kadra in nadaljnjih raziskavah.Introduction: Admission of a sick child in pediatric intensive care unit causes stress and it can put burden on the whole family. Family centered care is an innovative construct that focuses on partnership between patient, family and healthcare workers, with intention of emphatetic, effective and quality healthcare. It\u27s implementation in the clinical environment remains a challenge. Purpose of this diploma work is to study how elements of family centered care are implemented in neonatal and pediatric intensive care units in Slovenia. Methods: We used a descriptive method with a review of scientific and professional literature in Slovenian and English language. We used a quantitative research method. In the empirical part data was collected using a structured questionnaire, which was taken from the already tested foreign questionnaire by Insitute for family centered care (Patient- and family-centered pediatric intensive care: a self-assessment inventory). Online surveying was done using online tool EnKlikAnketa. Sample consisted of 122 parents. We statistically analysed data using computer programme SPSS, version 20.0, Windows. Data were analysed using Hi-square test and Pearson correlation coefficient. Validity and reliability of the questionnaire was verified by Cronbach alpha coefficient. Results: Policy of the units restrict 24 hour presence of the parents with the child. Parents are satisfied with the level of communication, but they wish to be informed better. Most od the parents had an oppurtunity to be involved in the care for their child. Parents find the most important concept to be sharing information and the least important concept to be collaboration – it is also the least represented concept in the clinical environment. Older parents find it less important to have financial support, but they think privacy is important more. Parents with a higher level of education find it more important to be with their child, they value timely communication and being able to express their worries. Parents who have more children find it less important, that fathers are treated equally. In the past three years less parents knew if they had an opportunity to work with a psychologist and/or social worker. Less parents knew if healthy children or other healthy family members were able to visit their hospitalised child. Discussion and conclusion: Elements of family centered care are implemented inconsistently in Slovenian pediatric intensive care units. Parents find it important, that during hospitalization of the child, the principles of family centered care are included. There is a prioritising need for education of healthcare workers and further research