Communicating Down syndrome diagnosis to mothers at prenatal or/and postnatal stage

Downov sindrom (nadalje DS) je ena najpogostejših kromosomskih motenj. Ugotavlja se lahko v prenatalnem ali postnatalnem obdobju. Čeprav prenatalna testiranja omogočajo ugotavljanje motnje, preden je otrok rojen, se velika večina mater z diagnozo seznani postnatalno. Podajanje diagnoze DS staršem pred ali po rojstvu ni lahka naloga za nobenega od strokovnih delavcev. Pri tem pa način podajanja/sporočanja diagnoze predstavlja pomemben del zgodnje obravnave, saj vpliva na to, kako bodo matere in družine doživele prve informacije o novorojencu. Raziskave nakazujejo, da matere način podajanja diagnoze DS zdravstvenih delavcev ocenjujejo kot neučinkovito in pri tem doživljajo občutke strahu, jeze, žalosti. Matere, ki jim je bila diagnoza DS otroka podana »po vnaprej danih napotkih in smernicah« (npr. prisotnost partnerja in otroka ob komunikaciji diagnoze, predstavitev pozitivnih informacij o DS in značilnosti oseb z DS, uporaba primernih izrazov ipd.), pa izkušnjo doživljajo z zadovoljstvom in bolj pozitivnimi mislimi. V magistrskem delu smo želeli ugotoviti, kako matere otrok z DS opisujejo izkušnjo prejema diagnoze DS ob rojstvu otroka in tudi v primeru, ko so matere prejele diagnozo med nosečnostjo. Raziskava se osredotoča na izkušnje mater otrok z DS, in sicer kako ocenjujejo način, kako jim je zdravnik (ali drug zdravstveni delavec) posredoval diagnozo. V raziskavi smo zajeli 88 mater, ki imajo otroka z DS. 81 mater je za diagnozo izvedelo v postnatalnem obdobju, le sedem pa jih je za diagnozo otroka izvedelo v prenatalnem obdobju. V raziskavi ugotavljamo, da je prejem diagnoze DS otroka tako v prenatalnem kot postnatalnem obdobju povezan z negativnimi čustvi (strah, skrbi). Matere velikokrat navajajo nezadovoljstvo s posredovanjem diagnoze DS otroka s strani zdravnika ali drugih zdravstvenih delavcev. Zdravnik ob sporočanju diagnoze DS otroka ne navaja pozitivnih lastnosti ali vidikov DS in v večji meri izpostavlja negativne vidike ter lastnosti DS. Matere, ki so opisovale pozitivne izkušnje s posredovanjem diagnoze DS otroka, nakazujejo, da so zdravniki ravnali v skladu s priporočili, navedenimi v domači in tuji literaturi. Matere, ki so za diagnozo otroka izvedele v prenatalnem obdobju, izpostavljajo predvsem dejstvo, da je zdravnik skušal vplivati na odločitev matere o nadaljevanju nosečnosti.Down syndrome (DS) is one of the most common chromosomal disorders. It can be recognized in the prenatal or postnatal period. Even though the prenatal testing allows detecting the disorder before birth, majority of mothers only learn about their child’s diagnosis after the child is born. Informing the parents about DS diagnosis before or after birth is not an easy task for any professional worker. However, how the diagnosis is communicated / conveyed constitutes an important part of early intervention, as it affects how mothers and families experience the first information about their newly born child. Research shows that mothers assess the methods used by the health professionals to convey the diagnosis of DS as inefficient and often experience fear, anger or sadness in the process. In cases when the diagnosis is conveyed “in accordance with the pre-given instructions and guidelines” (such as conveying the diagnosis in partner’s or child’s presence, presenting the positive aspects and characteristics of the child with DS, using the appropriate terms, etc.), the mothers experience contentment and positive associations. The goal of this thesis is to determine how the mothers of children with DS describe the experience of learning the diagnosis already during pregnancy. The research focuses on the mothers’ experience and their assessment of the method doctors (or other health professionals) use to convey the diagnosis to them. It encompasses eighty-eight mothers with a child diagnosed with DS. Eighty-one of them learned about the diagnosis during the postnatal and only seven during the prenatal period. Results of the research show that negative emotions (fear, anxiety) accompany the acceptance of the diagnosis in both prenatal and postnatal periods. Dissatisfaction with how the diagnosis has been conveyed by the health professionals is often expressedin these cases the positive aspects of characteristics of DS have not been stressed and have been overshadowed by the negative. When the guidelines, published Slovene and foreign scientific writings, have been observed when conveying the diagnosis, the experience is described as more positive. Mothers who learned about their diagnosis during prenatal period primarily stress the fact that the health professional tried influencing their decision on the continuation of pregnancy