The need for improved emotional support: A pilot online survey of Australian women’s access to healthcare services and support at the time of miscarriage
Introduction
Miscarriage is a common event estimated to occur in up to 1 in 4 pregnancies [[1], [2], [3]]. The prevalence of miscarriage is difficult to estimate as many early pregnancy losses occur before women are even aware they are pregnant, and they may assume it to be a late or heavy period. In Australia, miscarriage is defined as the loss of a pregnancy up to 20 weeks gestation, with losses at or after 20 weeks classified as stillbirth [4]. In the UK, miscarriage is defined as pregnancy loss up to 24 weeks gestation [5].
The frequency with which miscarriage occurs means it is often viewed medically as a routine, easily managed early pregnancy complication; ‘nature’s way’ of dealing with a nonviable or abnormal pregnancy [2,[6], [7], [8], [9]]. However, this medicalised view of miscarriage fails to recognise the significant psychological impact of miscarriage on many women with international research showing up to 50% of women experience some form of psychological morbidity following miscarriage [3]. Gestational age and other obstetric factors have little association with the level of psychological distress [6,[10], [11], [12], [13]], with up to 40% of women experiencing grief of a similar intensity and duration to other major losses [1], including late or perinatal death [14]. Feelings of anger, distress, self-blame, isolation, sadness, guilt, and shock following miscarriage are common [8,15,16], as are clinical levels of anxiety and depression in the following weeks, months, or even years [3,17,18]. It has been reported 10–50% of women experience some form of major depressive disorder and 20–40% experience heightened anxiety symptoms [3]. Future pregnancies are also often adversely affected due to heightened grief, fear, and anxiety during the pregnancy [19,20]. While almost all studies examining psychological morbidity following miscarriage are based on self-report measures rather than clinical diagnosis, and thus psychological outcomes may be overstated, nonetheless, studies spanning a number of decades, of varying locations and samples have consistently demonstrated adverse psychological outcomes following miscarriage are common [17].
In recent years, there has been increasing attention on improved support, education and care for pregnancy loss after 20 weeks in Australia [21]; however far less so for early pregnancy loss. Before 20 weeks, and particularly before 12 weeks, care tends to focus on women’s physical recovery, with little consideration for any potential psychosocial impacts [16,18]. While in Australia there are many clinical guidelines for HCPs on the medical management of miscarriage, there are no national, evidence based, clinical guidelines for support following miscarriage. The national medical body, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), endorse the UK’s National Health Service (NHS) NICE guidelines which include some aspects of psychosocial support, however the focus is primarily on the physical aspects of care [5]. At a state level, Queensland Health has comprehensive clinical practice guidelines for early pregnancy loss, which include a detailed section around psychosocial support, however these guidelines have not been approved or endorsed by the National Health and Medical Research Council (NHMRC) or RANZCOG, and little is known of their dissemination [22]. Encouragingly however, best practice guidelines, endorsed by RANZCOG and other major Australian perinatal loss and peak body organisations, do exist for stillbirth and neonatal death, and have recently been revised and released by the Perinatal Society of Australia and New Zealand and the Australian Stillbirth Centre for Research Excellence. The Guideline for Respectful and Supportive Perinatal Bereavement Care includes 49 recommendations centring on five key goals of care: good communication, shared decision making, recognition of parenthood, effective support and organisational response [23].
In Australia, if a woman has private health care, her private obstetrician can manage her pregnancy and early pregnancy problems (EPP), while in the public system they may be managed through a local public hospital by different midwives and obstetricians, possibly with the involvement of their general practitioner (GP) (shared care). When EPPs arise in the public system, women are typically managed by a GP, in hospital emergency departments (EDs) or Early Pregnancy Assessment Services (EPASs). Emergency departments are often inappropriate for manageable pain and bleeding due to long waits, unnecessary admissions, and a lack of appropriately trained staff [[24], [25], [26], [27]]. Women who attend ED may be sent home to await a consultation with the EPAS. While EPASs are considered the gold standard for miscarriage management as they aim to provide prompt diagnosis and improved quality of care [25], their standards of care, eligibility, and availability in Australia vary enormously and few offer any counselling services [28].
The interactions between women and healthcare professionals (HCP) play an important role in how their experience of miscarriage is shaped and its associated psychological impact [16,26,29]. Unfortunately, both Australian and international research has shown women frequently feel dissatisfied with the emotional support offered by HCPs, citing issues including: a focus on their physical but not emotional needs; a lack of sensitivity, empathy, and acknowledgement of their loss; use of medicalised terminology; a lack of follow-up care, including lack of referral to support services; poor information provision around causes, physical symptoms, recovery, and subsequent pregnancy prospects; and an expectation that recovery from grief should occur quickly [9,16,26,[30], [31], [32], [33]]. This aligns with a recent Australian study which showed clinicians often do not consider themselves responsible for patients’ emotional care following miscarriage, citing time, resources, desensitisation to women’s losses, and a need for self-protection as restricting their ability to provide this [34].
Currently in Australia, there is very limited data around healthcare service access at the time of miscarriage and what, if any, support is offered. The primary objective of this pilot study was to explore women’s access to healthcare services and support at the time of miscarriage. The two outcome variables of interest were “access to health services” and “support”. Knowing which services women access at the time of miscarriage assists in better understanding women’s pathways of care and the health professionals they access who may be best placed to offer or refer women on for support. The secondary outcome was to examine the effects of demographic and past reproductive history characteristic variables on access to services and support.
Section snippets
Ethics
Ethical approval was sought and granted by the Medicine and Dentistry Human Ethics Sub-Committee at the University of Melbourne (No. 1853086) on the 12th December 2018.
Study design
The self-administered 29 item online survey was completed by women over a three month period from February to April 2019 (S1 Appendix Miscarriage Survey). The survey was developed as a pilot to test question design, participation rates and sample recruitment strategies and population. Three months was considered a reasonable
Results
A total of 494 people commenced the eligibility check for the survey. Of the 494 people, 45 did not meet the eligibility criteria and were unable to proceed any further and 50 women were eligible however did not proceed to the survey proper; 10 exiting the survey before completing the demographic questions and 40 exiting the survey after completing the demographic questions. In total, 399 women were included in the analysis.
In comparing the demographic characteristics of the 40 eligible women
Discussion
This pilot survey provides useful baseline data showing women’s healthcare access and their unmet support needs at the time of miscarriage. Two key findings arose from the study. Firstly, more than half of women were not offered any information about miscarriage or pregnancy loss support organisations or referral/access to counselling services at the time of miscarriage, despite almost all reporting they would have liked various forms of support from items listed. In this study less than a
Strengths and limitations
The strength of this study is that it is the first we are aware of to explore women’s healthcare access and support in Australia at the time of miscarriage. While this survey attracted a large number of women in a relatively short period of time, and highlights considerable need for further support, the results should be interpreted with some caution. There are a number of limitations to this pilot study, largely centring around sample and survey question design. Firstly, the number of
Conclusion
While confirmatory large-scale studies with a broad population of Australian women are still required, the results from this pilot study support existing data, which strongly suggest women are not receiving the support they want and need from HCPs at the time of miscarriage. HCPs across most fields face considerable barriers to support care due to time restraints and high patient loads, a lack of emotional care guidelines, training and resources, and discontinuity of care, which undoubtedly
Disclosure
Dr Jade Bilardi is in receipt of a National Health and Medical Research Council (NHMRC) Early Career Fellowship, No 1013135. The NHMRC had no involvement in this study.
Author contributions
JB, SP & MTS contributed to the conception and design of the study. JB & SP were responsible for the recruitment and data collection. JB, GS and MTS were primarily responsible for data analysis and interpretation. JB was responsible for the first draft of the manuscript. All authors were responsible for critically reviewing and editing the manuscript. All authors read and approved the final manuscript.
Conflicting interests
None declared.
Acknowledgments
We would like to thank all the women who kindly consented to participate in this study and share experience of loss. We would also like to thank the Pink Elephants Support Network for their assistance in recruiting women for this study.
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