Expectant mothers who suffer from eating disorders are hiding their lived experiences from family, friends and health care providers for fear of being stigmatised or being perceived as bad caregivers.
That’s what preliminary research findings are showing Terri Burton, PhD researcher at the University of Notre Dame Australia, who is working to give pregnant women with eating disorders a voice and improve maternity care.
Ms Burton, a registered nurse and midwife, says pregnant women with eating disorders experience mental anguish over the impact their eating behaviours have on their developing babies and feelings of not being an effective mother.
“Eating disorders are a global phenomenon and an escalating public health concern, as they carry the highest rate of mortality among mental health disorders. They also have major implications for pregnancy outcomes,” Ms Burton said.
“There has been an evidenced link between eating disorders and perinatal depression, so expectant mothers may have a low mood, lack energy, have an inability to concentrate, feel overwhelmed or miserable, and have thoughts of being ‘a failure’.
“Women may also have episodes of anxiety or panic attacks, and could also withdraw from family and friends.”
Ms Burton’s research also identified cases of negative, impersonal and selective care delivered to expectant mothers with eating disorders.
Many study participants stated that their pregnancy experience would have been improved with access to continuous care and a greater understanding of their personal battles by health care staff.
“It is important that health care providers are aware that pregnant women may be undergoing personal distress and are sensitive to the specific needs of women with eating disorders. I am hoping that by providing the women’s perspective on what it is like to be pregnant with an eating disorder, the door will open for discussions on how we can best provide women-centred empathetic care for these mothers,” Ms Burton said.
The research so far has involved in-depth interviews of 10 women lasting between one and four hours’ duration, whereby the women discussed their experiences in living through their pregnancy with an eating disorder.
The interviews were then analysed to see if there were any clusters or patterns of information that had emerged.
These were then grouped into themes which highlighted the messages which were significant to the women.
“This in-depth approach to research focused on the lives of the women involved and enabled us to see the richness of the experience in terms of their baby and their eating disorders more than a survey approach would provide,” Ms Burton said.
“Many women said that this was the only opportunity that they had been given to talk about their experience and they were most appreciative to have been given this opportunity to do so. This would have been missed had these women only been given a survey to complete.”
Passionate about promoting confidence in parenting and health, Ms Burton says she hopes her research can give women “a voice” to improve maternity care across the board.
“While existent literature demonstrates the aetiology, incidence and outcomes of eating disorders in women, with evidence showing the impacts on pregnancy, the foetus and parenthood adjustment, there is a paucity of research regarding how women make meaning of the experience,” she said.
Director of Notre Dame’s Institute for Health Research Professor Beth Hands said the Institute was committed to undertaking health-related research which aims to enhance the health and wellbeing of people and communities in need.
“Terri’s research is exploring an issue that is often swept under the carpet as many health professionals are unsure on how to treat women with these emotional experiences, or even if an eating disorder is a concern for a mother and their unborn child,” Professor Hands said.
“Such is the uniqueness of her research at this point in time; Terri will present her preliminary findings at four forthcoming conferences. Clearly this is a topic of interest in the community.”
Terri Burton is seeking additional participants for her research. If you have an eating disorder, either active or in remission, have given birth in the past 12 months, and would like to take part in the study, please email Terri at: terri.burton1@my.nd.edu.au.