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Psychosocial impact of prenatal diagnoses
 

Psychosocial impact of prenatal diagnoses

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This a the brief power point presentation that I used for my presentation for the Capers Conference at Brisbane on May 5th 2011. This was aimed at professionals working with women. For more ...

This a the brief power point presentation that I used for my presentation for the Capers Conference at Brisbane on May 5th 2011. This was aimed at professionals working with women. For more information or questions visit the website at www.prenatal.stephanieazri.com

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  • To conclude this presentation, I would like to highlight that receiving a prenatal diagnosis comes as a shock for women as well as coming with having to make a very traumatic choice. Choosing whether to have a baby with a disability, or only having it for a temporary time or ending a pregnancy is a heartbreaking decision. Both are traumatic and carry long term consequences. If women can be supported during the decision making phase, after the termination or birth and during the grief period, no matter how long this last, they are more likely to feel at peace with their choice and to grieve their pregnancy or baby in a healthy way.

Psychosocial impact of prenatal diagnoses Psychosocial impact of prenatal diagnoses Presentation Transcript

  • Prenatal Diagnosis
    The myths Versus the Facts:
    Top 5 myths
    How to support women receiving poor of fatal diagnoses
    Stephanie Azri
    Clinical Social Worker
    Dip Ed, BHSV, BSW, MHSt, PhD Student
    www.prenatal.stephanieazri.com
  • Background
    A prenatal diagnosis occurs as the result of prenatal screening during a pregnancy.
    The goal of this process is to detect genetic and congenital anomalies.
    Between 2 to 4 % of women in Australia will receive a prenatal diagnosis that requires them to make a decision about a potential termination.
    Need of women are informational, educational and supportive.
  • Myth one: Use only the technical medical terms with women when discussing the diagnosis
    Case studies show that women may not understand the medical jargon used, yet may not feel able to interrupt their doctor/specialist to ask for clarification.
    Medical terms may appear cold and confronting.
  • “He gave me a 1:14 chance of having a Trisomy 13 baby. He also said that my baby had a cystic hygroma and also had exompholece.
    I didn’t even think to ask what Trisomy 13 is”
    Lisa’s story- Extract of “High Risk Pregnancy and Fetal Diagnosis; your journey”. S.Azri, 2006. Free Association books, UK.
  • Myth two: Give women all the information as soon as they receive the diagnosis.
    Case studies show that women who are in shock from receiving a prenatal diagnosis do not retain information shared.
    Women’s cognitive functions may be temporarily slowed down due to the shock and trauma of the diagnosis.
  • “The doctor was really sorry and announced that my baby had some kidney disease and would die at birth, if she even survived until then. Then, I don’t really remember what happened.”
    Talina’s story- Extract of “High Risk Pregnancy and Fetal Diagnosis; your journey”. S.Azri, 2006. Free Association books, UK.
  • Myth three: Women will access support groups once released from the hospital on their own.
    • Not every woman will feel comfortable with all support groups. There are few specific support groups known to women after a prenatal diagnosis. (SAFDA, Prenatal Diagnosis Support Australia, Fetal diagnosis centres-Hospital based).
    • Women in the midst of grief, shock and trauma may feel unable to search and seek for support.
  • “Some days at the shops, people would stare at Lana. I knew they were curious to see her face as she had Down Syndrome. I would feel depressed and I would blow everything out of proportion. I suppose I was suffering from postnatal depression as would any other new mum. I knew there was support out there somewhere, but it all felt just too hard.”
    Lana’s story- Extract of “High Risk Pregnancy and Fetal Diagnosis; your journey”. S.Azri, 2006. Free Association books, UK.
  • Myth four: It is easier to terminate a pregnancy with a poor prognosis.
    Women decide to terminate or carry to term based on various reasons:
    Gestational age at diagnosis
    Age and educational level of parents
    Diagnosis
    Prognosis
    Number of other children
    Religion and values of family
    • “Deciding to terminate our baby, who had anencephaly, was not easy. We couldn’t see the point of giving birth to him and prolonging the terrible heartache. It was our decision and the best we could make.”
    • “I was having such a hard time deciding what to do. I knew in my mind that there was nothing that modern medicine could do to save her, but I felt like such a horrible mother if I didn’t at least try. How could I not try?”
    • “Knowing that the baby’s diagnosis was long term, I didn’t want to burden my family if anything happened to my husband or to me. I told the doctor my decision and he booked me in the following day for my termination.”
  • Myth five: Professionals have no impact on women’s psychosocial health after diagnosis
    Professionals with clear & supportive communication skills make a difference in women’s satisfaction with their care.
    Women appreciate a warm professional who will non-judgmentally support them regardless of their choice.
    Counselling/follow ups organised by professional lead to better psycho-social outcomes of women.
    • “The doctor explained our options but quickly told us that they (the hospital) did not offer terminations. He said we would need to go and see our GP for a referral to a different hospital. We felt like our choice (of termination) was looked down upon. We felt like murderers.”
    • “Our obstetrician was warm and caring. She never judged us and gave us all our options, explaining that both would have different consequences. Although we decided to terminate, she supported us in creating memories of our baby.”
    2011 testimonies of parents of Prenatal Diagnosis Support (PDS) Australia www.prenatal.stephanieazri.com
  • References
    • Abeywardana, S., & Sullivan, E. (2008). Congenital anomalies in Australia 2002–2003 (Vol. 3). Sydney, Australia: AIHW National Perinatal Statistics Unit.
    • Abramsky, L., & Chapple, J. (1994). Prenatal diagnosis : the human side (1st ed.). London ; Melbourne: Chapman & Hall.
    • Azri, S. (2006). High-risk pregnancy and foetal diagnosis your journey. London, UK: Free Association Books.
    • Fonda Allen, J. S., & Mulhauser, L. C. (1995). Genetic counseling after abnormal prenatal diagnosis: Facilitating coping in families who continue their pregnancies. Journal of Genetic Counseling, 4(4), 251-265.
    • Howard, E. D. (2006). Family-centered care in the context of fetal abnormality. The Journal Of Perinatal & Neonatal Nursing, 20(3), 237-242.
    • Hutti, M. H. (2005). Social and Professional Support Needs of Families After Perinatal Loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 34(5), 630-638.
    • Leithner, K., Assem-Hilger, E., Fischer-Kern, M., Löffler-Stastka, H., Thien, R., & Ponocny-Seliger, E. (2006). Prenatal care: the patient's perspective. A qualitative study. Prenatal Diagnosis, 26(10), 931-937.
    • Redlinger-Grosse, K., Bernhardt, B. A., Berg, K., Muenke, M., & Biesecker, B. B. (2002). The decision to continue: The experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. American Journal of Medical Genetics, 112(4), 369-378.
    • White-van Mourik, M., Connor, J. M., & Ferguson-Smith, M. A. (1990). Patient care before and after termination of pregnancy for neural tube defects. Prenatal Diagnosis, 10(8), 497-505.
  • More Information
    Visit Prenatal Diagnosis Australia www.prenatal.stephanieazri.com
    Purchase a copy of “High Risk Pregnancy and Foetal Diagnosis; Your journey” from the Capers bookstore during the conference or online.
    Please email me at s-azri@myoffice.net.au