Experiences of pregnant women with fetal diagnosis of congenital heart disease
Parent support groups have an important role for women with fetal abnormalities
Parent support groups have an important role for women with fetal abnormalities, with coronary heart disease being the most common
Fetal clinical nurse specialist Miranda Porritt looked at the experiences of pregnant women following diagnosis of coronary heart disease (CHD) as part of her master's degree dissertation and presents an extended abstract of her findings here.
CHD is the most common congenital abnormality, affecting eight of every 1,000 live births in the UK.
The outcome for survival of the baby is significantly increased when the CHD is detected in utero (Blyth et al 2008), but the diagnosis can lead to severe emotional trauma for the pregnant woman (Rychik et al 2013). Studies have confirmed that this trauma can have far-reaching mental health consequences (Solberg et al 2011).
The aim of the study described in this article was to explore the support, experiences and needs of mothers with a fetal diagnosis of CHD, providing useful information for clinical nurse specialists.
This qualitative research involved interviewing two groups of women: those who did not have access to a parent support group after diagnosis (n=4) and those who did (n=3). In-depth semi-structured interviews were undertaken and women were encouraged to talk about their experiences. The interviews were recorded, transcribed verbatim and analysed using the six stages of thematic analysis (Braun and Clarke 2006).
Results and conclusion
This exploratory research provided new evidence that women who had been formally introduced to a parent support group felt better supported following fetal diagnosis. It therefore affirmed that, as part of a fetal cardiology service, these groups can reduce emotional distress, trauma and feelings of isolation among women. This helps them to understand the diagnosis, and prepare for the delivery and care of their baby.
The most important support provided by the group was found to be emotional care that is unique in its relevance to women in similar circumstances. To minimise mental health consequences in antenatal and postnatal phases, clinical practice should facilitate the setting up or signposting of women to reliable sources of information and support from others in similar situations.
Multi-site quantitative research into the role of the parent support group would enable the level of emotional distress families experience following fetal CHD diagnosis to be quantified. It would also allow the effect of the parent support group on maternal and fetal outcomes, including maternal-infant bonding and parenting, to be evaluated.
Children’s nurses working on cardiology wards should observe fetal cardiology clinics to increase awareness of the distress experienced by parents before the birth of a baby with CHD. Teaching by nurse specialists would facilitate greater understanding of the antenatal process and promote family-centred care with greater empathy.
Nurses should have time for reflective practice with psychologists so that emotional distress in parents is discussed and managed effectively, along with the emotional well-being of children’s nurses.
The process of ethical approval when researching vulnerable groups of patients should not be underestimated. The application needs to be robust and reassuring so that anxious participants are not compromised by involvement in research. Psychological support should be made available.
The participant recruitment process taught me to be flexible. I researched the advantages and disadvantages of telephone interviews versus face-to-face interviews and decided to let patients choose their preferred method to minimise disruption while maintaining rich data collection.
I had anticipated the emotional trauma that a CHD diagnosis brings for expectant mothers, but the depth and length of time in which women are affected was something I had underestimated. The isolation and helplessness they feel in their local community allowed me to focus on the support women need following diagnosis. Research is important for evidence-based practice, but it also allows nurses to empathise with their patients at a deeper level.
- Blyth M, Howe D, Gnanapragasam J et al (2008) The hidden mortality of transposition of the great arteries and survival advantage provided by prenatal diagnosis. BJOG: An International Journal of Obstetrics and Gynaecology. 115, 9, 1096
- Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology. 3, 2, 77-101
- Rychik J, Donaghue D, Levy S et al (2013) Maternal psychological stress after prenatal diagnosis of congenital heart. The Journal of Pediatrics. 162, 2, 302-307
- Solberg O, Dale M, Holmstrøm H et al (2011) Long-term symptoms of depression and anxiety in mothers of infants with congenital heart defects. Journal of Pediatric Psychology. 36, 2, 179-187
About the author
Miranda Porritt is a fetal clinical nurse specialist at Great Ormond Street Hospital for Children. This extended abstract is from her master’s degree in clinical research dissertation, supervised by doctors Jo Wray and Lucia Rocca-Ihenaccho, and Suzanne Lee. Written on behalf of the RCN Research in Child Health Forum