The Psycho-Social Sequelae of a Termination of Pregnancy for Fetal Abnormality

Medicine, Obstetrics

White-Van Mourik, Margaretha C. A

University:University of Glasgow

关键词: Medicine, Obstetrics;   

Others  :  http://theses.gla.ac.uk/77985/1/11003330.pdf

来源: University of Glasgow

【 摘 要 】

Although all couples who embark on a pregnancy hope for a normal child, about 2% will have an abnormal outcome. For a proportion of these couples the abnormality will be detected prenatally and they may elect for termination of pregnancy. In Scotland there are about 200 terminations of pregnancy (TOP) for fetal abnormality (FA) each year and for each couple this represents one of the most difficult times of their lives. This project undertook to examine the current management of TOP for fetal abnormality to identify if there was scope for improvement. The study consisted of two parts; management aspects of detection and termination for neural tube defects (NTD), and a detailed assessment of sequelae of TOP for various FA. In the NTD study, women who had elected for TOP were identified from the West of Scotland Regional Genetics Service. Although the majority (137, 82%) of consultands were satisfied with the way that prenatal diagnosis was handled, more than one third of the women felt ill-prepared for the TOP and entered hospital with no conception of the procedure or timescale of the termination. Care during the termination procedure was perceived as very good by most (126, 76%) and 95% (158) found the staff attending them kind and sympathetic. After the TOP, many (52, 31%) were nursed in the post-natal ward, often in a side room but usually within hearing distance of the newborn nursery and found this very upsetting. On leaving hospital, the post-termination sequelae were discussed or mentioned to only 25 (15%) patients. This left 135 (81%) confused and bewildered by the postpartum reactions of their bodies. The second study was intended; to monitor sequelae, to investigate in more detail why couples perceived aftercare as inadequate, to consider if this is related to specific factors, to ascertain which groups had particular difficulties in coming to terms with the experience and finally, to assess the effect of the TOP for FA on family planning and further reproduction. Common difficulties were encountered in several areas; pain and fear during the termination procedure, the decision whether to see the fetus; the lack of medical and psychosocial advice and support in the post-termination time on leaving hospital; the perceived lack of understanding of the sequelae; and the consultands' own reticence to voice their needs, fears and worries. 24 (28%) women experienced physical pain and 38 (45%) felt very frightened during the termination procedure. 16 (19%) mothers and 18 (26% of 68) husbands (partners) saw the fetus after the delivery and after two years none regretted the decision. This was in contrast to 38 mothers (55% of 68) who did not look. Consultands who had TOP for Trisomy 21, Cystic Fibrosis, or Duchenne Muscular Dystrophy preferred to maintain an abstract notion of the fetus even on reflection two years later. Of the women who had been too frightened to look at the fetus after the termination because there were obvious malformations, 99% regretted the decision. Reassurance and detailed information were given as the most helpful aspects of genetic counselling by 45 (56% of 80). The ideal time for such a consultation was given as 4 to 6 weeks. For 36 (42%) of consultands there had been doubt before, during and just after the TOP about their decision to abort, and after two years 2 women and 3 men still regretted the decision. 81 (96%) would in principle accept prenatal diagnosis in a subsequent pregnancy, and in fact all 55 who had another pregnancy, had prenatal diagnosis. 82% achieved or were trying to achieve their wished for family size, those who were not sure about PND gave up progeny rather than having a pregnancy without testing for fetal disorders. The 15 couples (18%) who experienced reproductive conflict included several unexpected diagnoses (which differed from the one for which they had sought PND), and the older age-group. All these patients had surviving children. Both studies demonstrate scope for improvement in patient management following TOP for FA. The recurring theme which was present in all sections we examined was impaired communication at all levels and a lack of understanding of the psychological sequelae after this traumatic event. Improved education of those involved in the care and support of these families and more information for those in close contact with the couple could help to reduce excessive anxieties and this might well be an area in which a self-help group will be of particular benefit.(Abstract shortened by ProQuest.).