| Abstract | Cilj istraživanja
Cilj doktorske disertacije bio je utvrditi mišljenje djece i roditelja o: a) informiranosti
u zdravstvenom sustavu, izvorima informacija i razumijevanju dobivenih informacija; b) tome
tko odlučuje; c) dobi u kojoj djeca mogu odlučivati i sudjelovati u informiranom pristanku; d)
tome u kojoj mjeri demografski podaci, bolest djeteta, izvor informiranja i izvor odlučivanja
objašnjavaju mišljenje djece i roditelja o komunikaciji, odlučivanju djece i boljoj
informiranosti djece.
Sudionici i metode
U ispitivanje su bile uključene dvije grupe sudionika, djeca i roditelji (1602). Od toga 1045
djece (68,4% djevojčica, 31,6% dječaka) i 557 roditelja. Prosječna dob djece je bila 16,18
godina. Sudionici su ispitani u školama (930 djece i 336 roditelja) i bolnicama (115 djece i
184 roditelja) u gradovima Pula, Rijeka, Crikvenica, Zagreb, Osijek i Knin. Na temelju
predistraživanja i literature sastavljen je upitnik za roditelje i djecu. Upitnici su imali dva
dijela. U prvom su dijelu prikupljeni demografski podatci, podatci o bolesti i hospitalizaciji
djece, informiranosti i razumijevanju informacije, informiranoj suglasnoti i odlučivanju djece.
Drugi dio upitnika se sastojao od 28 tvrdnji koje su obrađene faktorskom analizom na
zajedničke faktore s Oblimin rotacijom kako bi se ispitala faktorske strukture upitnika,
posebno za uzorak djece i uzorak roditelja. U dalju analizu su bile uključene tri podskale
upitnika za djecu koje imaju zadovoljavajuće metrijske karakteristike (Komunikacija s
djecom, Odlučivanje djece i Informiranost djece). Za roditelje, u dalju analizu je bila
uključena jedna podskala (Uključivanje djece u odlučivanje).
Rezultati
Informiranost o zdravlju djece. Više od 50% djece je bilo informirano u potpunosti
o svojoj bolesti. Prema mišljenju djece i roditelja, roditelji su najčešće informirali djecu.
II
Međutim, po mišljenju djece liječnici (8.68%) i drugo zdravstveno osoblje (3.99%) su
značajnije više pridonjeli razumijevanju informacije u odnosu na roditelje (0,03%). Teško
oboljela djeca su bila bolje informirana i više su razumijela dobivene informacije. Ta ista
djeca su bolje informacije primila od roditelja i drugih zdravstvenih djelatnika u odnosu na
liječnike i internet. Dječaci koji su tijekom ispitivanja bili hospitalizirani imali su značajno
veću potrebu za informacijom u odnosu na djevojčice.
Odlučivanje o zdravlju djece. Prema mišljenju djece najčešće su odluke donosili
liječnici i roditelji, a prema mišljenju roditelja oni sami su značajno češće odlučivali o
liječenju svoje djece. Dječaci kao i roditelji misle kako bi djeca trebala biti značajno više
uključena u odlučivanje.
Dob u kojoj djeca mogu odlučivati i sudjelovati u informiranom pristanku.
Većina djece misli da bi u dobi od 16 godina trebali odlučivati o svom zdravlju. Roditelji
misle da je prosječna dob djece za informiranje 15 godina, a za odlučivanje 18 godina.
Hijerarhijskom regresijskom analizom odgovora djece utvrdilo se da četiri grupe prediktora
(demografske varijable, bolest, izvor informacija i izvor odlučivanja) objašnjavaju 49%
varijance Komunikacije s djecom, 25% varijance Odlučivanja djece i 41% Informiranosti
djece. Prema mišljenju roditelja, iste četiri grupe prediktora objašnjavaju ukupno 21%
varijabiliteta Sudjelovanja djece u odlučivanju |
| Abstract (english) | Objectives
IV
The purpose of this PhD thesis was to establish the opinion of children and their
parents about: a) the level of provided information in health care system, sources of
information and understanding of information obtained; b) who decide about children’s
health; c) the age of assent; d) if demographic data, illness of child, sources of information
and decision explain their opinion towards communication, children’s decision and better
information of children.
Participants and methods
Two groups of participants were involved in this study, children and their parents, in
total 1602. The number of children were 1045 (68,4% of girls, 31,6 of boys) and 557 of
parents. Average age of children was 16,18 years. Participants were examined in schools (930
children and 336 parents) and hospitals (115 children and 184 parents) in cities of Pula,
Rijeka, Crikvenica, Zagreb, Osijek and Knin.
Based on pilot investigation and literature search about the questionnaires related to
informed assent and parents consent, a questionnaire for children and parents was drawn up.
The questioner had two parts. Demographic data, data about children’s illness and
hospitalization, received information and understanding of this information, informed assent
and children’s’ decision making were collected in the first part of the questionnaire. The
second part of the questionnaire was consists of 28 claims. Factor analysis on common factors
was conducted with Oblimin rotation with the purpose of evaluation of 28 claims factor
structure, separately for the sample of parents and for the sample of children. Three subscales
were included in further analysis with satisfactory metric characteristics (Communication
with children, Children’s’ decision and Level of children’s’ information). For the parents,
one subscale was included in further analysis (childrens inclusion in decision making).
V
Results
Information about childrens health. More than 50% of children were well informed
about their illness. According to the opinion of children and parents, parents were most
common source of information. According to the childrens opinion, physicians (8.68%) and
other health givers (3.99%) significantly contribute to the understanding of information in
comparison to the parents (0.03%). Children with severe diagnose were better informed and
better understood received information. The same children were better informed by parents
and other health care givers in comparison to the doctors and internet. Boys participants
hospitalized during investigation had greater need for information in comparison to the girls.
Decision about children health. According to children opinion, physicians and
parents made decisions most frequently. According to the opinion of parents, parents made
decision most frequently. Boys and parents thought that children should be more frequently
involved in decisions making.
The age of assent and participation in decision making. According to the opinion
of most children, the age of consent is 16 years. According to the opinion of parents the
average age for receiving information is 15 years and for the consent is 18 years. Hierarchic
regression analysis of children answers determinate four group of predictors (demographic
data, illness, source of information and source of decision making) explain 49% of variance
Communication with children, 25% of variance Children decision making and 41% o
Children information. According to the parents opinion, same four groups of predictors
explain totally 21% of variability of Childrens’ participating in decision making.
Conclusions
Information provision about illness is important to parents and children. If the children are
better informed, they can understand the information properly and they will be more involve
VI
in decision making. The children should be informed by the experts. There are many other
factors that can be connected with childrens’ information, such as gender and severity of
disease. The children want to participate in decision making at the age of 16. According to
parents opinion, the age of children for participation in decision making is 18 years. Our
results suggest that both parents and childrens’ need more information and better
communication. We can conclude that physicians and other health care providers as well as
parents should be better informed about rights of children and parents. |
