PARENTS´ EXPERIENCES AND REACTIONS WHEN AN UNEXPECTED FINDING IN THEIR FOETUS IS REVEALED AT A ROUTINE ULTRASOUND EXAMINATION

Sammanfattning: The overall aim of this thesis was to describe parent’s experiences, reactions and needs in connection with a routine ultrasound examination during pregnancy when the foetus was found to have an abnormal ultrasound finding.

The data collection began in February 2005 and the one year cohort study was completed by March 2006. The participants in this study were each asked if they would also consider participating in the qualitative part of the study. This material was collected from 2005 to 2008. The two studies with a qualitative design comprised of 19 parents (10 mothers and 9 fathers), respectively 16 parents (9 mothers and 7 fathers). The parents were interviewed regarding their experience and how they managed the situation when their foetus was found to have choroid plexus cysts or the foetus was found to have an abnormality at a routine ultrasound examination. The material was collected and analysed using the grounded theory method according to Glaser. The two quantitative questionnaire-based studies have a comparative design with matched controls, respectively the entire cohort abnormal findings compared to normal findings. Also the parents´ psychological well-being was investigated. The questionnaires, one to be filled in before and one after the examination, contained in addition to background variables, the instruments State- Trait Anxiety Inventory (STAI), Sense of Coherence (SOC) and the index in Parents´ Expectations, Experiences, Reactions during Ultrasound (PEER-U State of Mind Index). The STAI-instrument was only used in one of the two quantitative studies.

The interview findings revealed that the parents appreciated the ultrasound examination but they did not consider it as a form for foetal diagnosis even if they knew it is a tool for detecting abnormalities. This could be important to remember when new forms or scanning programmes are introduced in the future. Most parents wanted to know about the findings revealed during the examination immediately, but required the complete information without prolonged delay in order to form a strategy for further management of the situation. They also expressed a need for a meeting with a physician or specialist with competent knowledge of the deviation, in connection with the examination. When a deviation is found the parents need someone to talk to, a midwife, physician and sometimes psychological counselling. Initially it seems as it is the abnormal ultrasound finding in itself that causes the parents anxiety, not the consequences of how severe the finding is. The analysis of the material, according to the ultrasound specific instrument State of Mind Index, showed that the parents who had an ultrasound examination, where abnormal findings were found in their foetus, were more anxious than the parents whose foetus was normal. This was not obvious when using STAI, probably because it is not an ultrasound specific instrument and therefore it seems to be more time-dependent than the State of Mind Index. The instrument State of Mind Index can also give information as to what could have caused the anxiety. The item specific analysis of the State of Mind Index showed that many of the statements in the index could be connected to the routines at the ultrasound department. Therefore, this instrument could be helpful for evaluations or the development of new routines.