Understanding decision-making regarding prenatal diagnostic testing for down syndrome and termination of pregnancy: an interpretive phenomenological study

Scott, Chantelle Jennifer (2018-03)

Thesis (PhD)--Stellenbosch University, 2018.

Thesis

ENGLISH ABSTRACT: Pregnant women or couples who screen high risk for a baby with Down syndrome (DS) are faced with having to make life changing decisions. Firstly, they need to decide whether they want prenatal diagnostic testing to confirm whether the baby has DS or not. If this diagnosis is confirmed, they have the added burden of deciding between a termination of pregnancy (TOP) and giving birth to a baby with DS. The pregnant women and couples often need to make these decisions while feeling emotionally distressed and overloaded by information. This may cause them to make decisions they regret, which may have a long-term negative impact on their psychological well-being and daily lives. Therefore, the current study aimed at gaining a deeper understanding of how women/couples experience their decision-making process around the option of prenatal diagnosis (PND) for DS and TOP, in order to improve their satisfaction with the decisions they make. This study particularly focused on the experiences of women/couples who attend the prenatal clinic at a public sector hospital, Tygerberg Hospital, in Cape Town, South Africa (SA). The study was conducted using a qualitative interpretive phenomenological approach. A total of 27 women and six couples were recruited using purposive sampling. These participants were selected and grouped according to the decisions they made, in order to investigate the decision-making process and impact of each decision. The four groups were: those participants who declined PND, who accepted PND, who declined TOP and who accepted TOP. In-depth interviews were conducted to collect the data. These interviews were conducted at different intervals during and after the outcome of the pregnancy. The interviews were audio-recorded and transcribed. Thematic analysis was used to derive meaning from the data. The findings of the study highlights the complexity of the decision-making processes regarding PND for DS and TOP. The women/couples reported several factors influencing their decision-making processes including their perceived severity of DS, interpersonal relationships, procedure related risks, risk perception, perceived benefit of procedure, family structure, religious values and moral beliefs. It was noted that those women/couples who made decisions which were not in line with their religious beliefs and moral values experienced the most ambivalence and feelings of regret. Each decision was found to have a major impact on the women’s/couples’ psychological wellbeing, interpersonal relationships and daily lives. Therefore, this study also illustrated the additional support these women/couples require, in order to cope with the anxiety caused by their high risk status of DS and their decisions regarding PND and TOP. This study is the first of its kind in SA and will enhance the understanding of the experiences and decision-making processes of women and couples who attend the prenatal clinics within this context. The findings of the current study was integrated into a practice guideline specific to the SA context in order to improve the provision of genetic counselling to better assist women and couples in their decision-making processes regarding PND for DS and TOP.

AFRIKAANSE OPSOMMING: Swanger vroue en paartjies, wat 'n hoë risiko het vir 'n baba met Down sindroom (DS), moet lewensveranderende besluite neem. Eerstens moet hulle besluit of hulle voorgeboorte diagnostiese toetse (VDT) wil ondergaan om te bevestig of hulle baba DS het of nie. As hierdie toetse die diagnose bevestig, moet hulle kies tussen ʼn terminasie van swangerskap (TVS) of om geboorte te skenk aan ʼn baba met DS. Die swanger vroue/paartjies moet dikwels hierdie besluite neem terwyl hulle emosionele angs ervaar en oorlaai word met inligting. Dit kan veroorsaak dat hulle besluite neem waaroor hulle later spyt voel en wat ʼn langtermyn negatiewe impak op hulle sielkundige welsyn en daaglikse lewens het. Daarom was die doel van die huidige studie om ʼn beter begrip te kry van hierdie vroue/paartjies se ervarings en besluitnemingsprosesse rondom die opsie van VDT vir DS en TVS, en sodoende hul tevredenheid met die besluite wat hulle neem, te verbeter. Hierdie studie het spesifiek gefokus op die ervarings van vroue/paartjies wat die voorgeboorte kliniek by 'n staatshospitaal, Tygerberg Hospitaal, in Kaapstad, Suid-Afrika (SA) bywoon. Die studie is uitgevoer met behulp van 'n kwalitatiewe interpretatiewe fenomenologiese benadering. Altesaam 27 vroue en ses paartjies is gewerf vir deelname, deur middel van doelgerigte steekproefneming. Hierdie deelnemers is gekies en gegroepeer volgens die besluite wat hulle geneem het, om die besluitnemingsproses en die impak van elke besluit te ondersoek. Die vier groepe was: die deelnemers wat VDT geweier het, wat VDT ondergaan het, wat TVS geweier het en TVS aanvaar het. In-diepte onderhoude is gevoer om die data te versamel. Hierdie onderhoude is uitgevoer op verskillende tydsdure tydens en na die uitkoms van die swangerskap. Oudio-opnames is van die onderhoude gemaak. Hierdie opnames is getranskribeer en tematiese analise is toegepas om afleidings van die data te maak. Die bevindinge beklemtoon die kompleksiteit van die besluitnemingsprosesse rakende VDT vir DS en TVS. Die vroue/paartjies het verskeie faktore genoem wat hul besluitnemingsprosesse beïnvloed, insluitend hul waargenome erns van DS, interpersoonlike verhoudings, prosedureverwante risiko's, risiko-persepsie, waargeneemde voordeel van prosedure, familie struktuur, godsdienstige waardes en morele oortuigings. Daar is opgemerk dat die vroue/paartjies wat besluite geneem het, wat nie in lyn was met hulle godsdienstige oortuigings en morele waardes nie, die meeste gevoelens van onsekerheid en spyt beleef het. Elke besluit het ook 'n groot impak op die vrouens/paartjies se sielkundige welsyn, interpersoonlike verhoudings en daaglikse lewens gehad. Hierdie studie het dus ook geïllustreer dat hierdie vroue/paartjies addisionele ondersteuning benodig om aan te pas met hulle hoë risiko-status van DS, asook die besluite wat hulle rakende VDT en TVS gemaak het. Hierdie studie was die eerste van sy soort in SA en sal die begrip verbeter van die ervarings en besluitnemingsprosesse van vroue/paartjies, wat die voorgeboorte klinieke binne hierdie konteks bywoon. Die bevindinge is geïntegreer in 'n praktyk riglyn wat spesifiek om ten einde die voorsiening van genetiese berading, om vroue en paartjies te ondersteun in hul besluitnemingsprosesse rakende PND vir DS en TOP, in die SA konteks te verbeter.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/103453
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