'In Our Shoes' - Early Pregnancy Loss Project 2023
![Early Pregnancy Loss Project](/media/tqnkfvzh/small.png)
Early pregnancy loss (i.e., the loss of a pregnancy during the first 23 weeks) is recognised as the most common pregnancy-related complication, estimated to occur in around 15–20% of known pregnancies. The experience of pregnancy loss can be a traumatic event for the parents involved, shown to negatively impact their mental health and well-being.
Early pregnancy loss can have a significant psychological impact on both the woman and her partner and can cause depression, anxiety & even Post Traumatic Stress Disorder (PTSD). A recent study followed 192 women and their male partners 1 month and 9 months after experiencing early pregnancy loss (Farren et al., 2020). This study found that after one month 1 in 3 women had PTSD, 1 in 4 had anxiety and 1 in 10 had depression. Whilst this slightly reduced nine months follow up still revealed 1 in 5 had PTSD, 1 in 6 had anxiety and 1 in 20 had depression (this was none for those who had a healthy pregnancy).
Despite this, pregnancy loss has not and continues not be a major focus for research or treatment. Therefore there is a need to understand what are the challenges faced by parents who experience early pregnancy loss? and what strategies and interventions can be used to improve the psychological wellbeing of parents impacted?
We secured funding from Research England and the University of Bedfordshire to develop a public involvement group to work with those who have been directly impacted by pregnancy loss. When developing research, it is essential that we understand the perspectives of those impacted to ensure that the research is in the best interests of the patient. Therefore we actively engaged with those directly impacted to help us shape future interventions and research.
The Public Engagement Group (PEG) was comprised of a diverse group of thirteen who have all experienced a form of Early Pregnancy Loss (EPL). The frequency of losses ranged between 1-13 per member, types of loss included Miscarriage, Ectopic, Molar and Termination for Medical Reasons. Notably, some of these women had children prior and post EPL. Members reported interest in the project due to their want to improve experiences and psychological outcomes of parents who are faced with EPL.
Public Engagement Training
Two training sessions supported the members’ role in the project in preparation for roundtable workshops, familiarising them with research terms, methodologies and enabled the group to build rapport with one another. Moreover, parents’ skills in participatory research were developed in the training sessions building research capacity and expanding their knowledge.
Round table discussions
Three roundtable meetings were held, which all had literature-based content, providing the opportunity to understand what the research in EPL has contributed so far, such as existing interventions and strategies. Given the limited empirical evidence, members played an active role in identifying the problems and needs of parents in miscarriage care and suggest strategies for implementation. Members were provided with the opportunity to contribute to discussion each session anonymously/non-verbally through utilizing Padlet. An evidence-inspired model, the Logic Model, helped the process throughout the sessions, giving the research team and the PEG members the opportunity to clearly identify and map step by step the problems, needs, desired outcomes and impact of EPL.
The first two roundtable workshops focused on identifying and prioritising the problems and needs of parents in miscarriage care during all stages of loss (prior, during, post), while the third was an open discussion on intervention ideas and group suggestions for strategies in miscarriage care. Enabling the mapping the discussed problems and the needs assisted with the development of realistic and feasible ideas that could be implemented within the health care system, whilst empowering and equipping parents.
Following the roundtable sessions, contributors were given the opportunity to reflect upon their involvement and provide feedback to the facilitators.
Collaboratively, members identified 6 key themes summarising their experiences with Early Pregnancy Loss and areas in need of more attention:
1) A dissatisfaction of psychological and physical care during and post pregnancy loss (Unable to access support 24/7, lack of information given, lack of signposting to relevant services and follow-up).
2) Experiences of lack of consideration and compassion for the loss from healthcare professionals- suggested to be improved through providing co-produced healthcare professional training.
3) Simple changes within organisations may have a positive impact- suggestions of improving communication between healthcare providers may lessen the distress.
4) Recurrent loss is significant and needs to be acknowledged.
5) There is a stigmatisation surrounding pregnancy loss which results in negative feelings such as shame to arise, these negative feelings are expressed to result in the individual not reaching out for support/isolating themselves.
6) Pregnancy loss can impact interpersonal relationships.
Feedback following roundtable discussions identified that members felt a profound benefit from participating, such as ‘personal healing’ and empowerment from ‘adding value’ and having their ‘voice heard’.
The next steps for the 'In Our Shoes' collaborative project involve the dissemination of findings through a multitude of means such as the publication of a written report and presenting the findings at conferences.
Further research into early pregnancy loss will be conducted in 2024 following the team successfully securing funding from Research England. The Sunflower Project will focus on parents who have experienced first-trimester pregnancy loss and the care they have received within England, it will also investigate experiences from key healthcare providers and stakeholders.
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