Abstract | Nasljedne bulozne epidermolize (EB) obuhvaća bolesti koje zahvaćaju kožu i sluznicu, a karakterizira ju ponavljajuće stvaranje mjehura i rana na koži i sluznici. EB je složena bolest koja utječe na zdravstveni, socijalni i psihološki status osobe i cijele njene obitelji, stoga pristup bolesti treba biti holistički. Rana intervencija je proces pružanja podrške djetetu s teškoćama u razvoju od rođenja do sedme godine. Suvremeni pristup rane intervencije u središte stavlja djetetovu obitelj koja je mjesto razvoja djeteta i idealna je okolina za poticanje razvoja.
Cilj istraživanja bio je dobiti uvid u potrebe, prepreke i kvalitetu rane intervencije u buloznoj epidermolizi iz perspektive roditelja i stručnjaka. Korištena je kvalitativna analiza podataka. Metoda prikupljanja podataka bio je polustrukturirani intervju. Intervju je sniman, prepisan, analiziran i interpretiran. U istraživanju se koristio namjerni uzorak, sudjelovala su četiri roditelja i dva stručnjaka, prikupljeni su po principu snježne grude.
Rezultati pokazuju da stručnjaci prepoznaju važnost informiranja, educiranja, savjetovanja roditelja, važnost timskog rada, savjetovanja s drugim stručnjacima i praćenja literature, smatraju da pristup obitelji i osobama s EB-om treba biti holistički s ciljem povećanja kvalitete života. Kao izazov u radu navode neosviještenost populacije i ostvarivanje odnosa s roditeljima. Učlanjenje u udrugu DEBRA Hrvatska smatraju korisnim zbog dobivanja potrebnih informacija i podrške. Roditelji navode da od rođenja djeteta nisu uvijek imali ugodna iskustva sa stručnjacima, većinu informacija pronalazili su na internetu gdje su se susreli s problemom previše informacija, a istovremeno s nedostatkom praktičnih informacija. Kao izazove u danu prepoznaju dugotrajnost brige, probavu, hranjenje i previjanje rana. Govore o nedostatku informacija za ostvarenje prava, kao nužnu podršku navode psihološku podršku, a najvažniju neformalnu podršku prepoznaju u obitelji. Zadovoljni su inkluzijom svoje djece u sustav odgoja i obrazovanja. Kao izazov prepoznaju neosviještenost okoline i stručnjaka te odrastanje djeteta. Prepoznaju važnost učlanjenja u Udrugu, ali smatraju da bi ona trebala raditi puno više.
Iako roditelji i stručnjaci prepoznaju slične potrebe u ranoj intervenciji u buloznoj epidermolizi, neke izjave su oprečne, stoga je bitno raditi na komunikaciji između roditelja i stručnjaka kako bi roditelji i djeca dobili podršku koja im je potrebna. Nadalje, bitno je raditi na osnaženju roditelja kako bi se osnažila djeca kroz odrastanje. Zaključno, mnogo se radi na osvještavanju opće populacije o EB-u, ali potrebno je još rada kako bi se senzibilizirala javnost. |
Abstract (english) | Inherited Epidermolysis Bullosa (EB) includes diseases that affect the skin and the mucus membrane. They are characterized by a repetitive apparition of blisters and wounds on the skin and the mucus membrane. Epidermolysis Bullosa (EB) is a complicated disease that affects social, psychological and health status of the patient and his/her whole family. Therefore, the approach has to be holistic. Early intervention is a process of providing support for a child with developmental difficulties from birth until the age of seven. The modern approach of early intervention focuses on the child’s family as the place where the child grows and which is the perfect environment for his/her further development.
The research aims to gain insight into the needs, obstacles and quality of early intervention in Epidermolysis Bullosa from the parents’ and experts’ point of view. Qualitative data analysis has been used and the method of data gathering has been a half-structured interview. The interview has been recorded, transcribed, analyzed and interpreted. The research used a intentional sample, four parents and two experts who were recruited through snowball sampling participated in the research.
The results show that the experts have recognized the importance of information, education, parents advising, teamwork, consulting other experts and literature. Further, they believe that the approach to families and patients with Epidermolysis Bullosa has to be holistic, aiming at improving the quality of patient’s life. As a challenge in their work, they state unawareness of the population and difficulties in communication with parents. They find membership in DEBRA Croatia association useful because it provides them with necessary information and support. Parents state that since childbirth, they haven’t always had pleasant experiences with experts. Therefore, they would find most of the information on the Internet, which sometimes offers one too many irrelevant pieces of information, lacking the practical ones. As their daily challenges, they mention a long-term commitment to the patient, digestion, feeding and taking care of wounds. They also mention the lack of information regarding their legal rights. They refer to psychological support as their essential need, while the most important informal support in their opinion is the family itself. They are satisfied with their children’s inclusion in the education system. As a challenge, they mention the unawareness of the population and experts as well as the child’s upbringing. They recognize the significance of DEBRA membership, but they also think that it should do much more.
Although both parents and experts recognize similar needs in the early intervention in Epidermolysis Bullosa, some of their statements are contradictory. Therefore, it is crucial to work on the communication between parents and experts so that parents and their children could get the support they need. Further, it is important to give strength to parents so that children could grow stronger as well. To conclude, a lot of work has been done to inform the population about the Epidermolysis Bullosa, but a lot more is to be done to make them fully aware of its challenges. |