Features

Pregnant with fear

07 February 2020

Catriona Jones, Claire Marshall, Colin Martin and Julie Jomeen discuss a clinical pathway for women with fear of childbirth.

Fear of childbirth (FOC) is a continuum: at one end are women who are almost free of fear, and at the other are women with tokophobia, a severe or disabling fear of childbirth and even pregnancy.

For some women, tokophobia has debilitating effects. In the most severe cases, women will avoid pregnancy, despite a lifelong desire to bear children. For those who become pregnant, the fear can overshadow and adversely affect the choices they make for labour and birth. Many women with severe fear have specific risks in relation to their clinical state, including severe levels of anxiety and depression and the risk of post-traumatic stress disorder (PTSD) (NHS London Clinical Networks, 2018; Ayres et al, 2016).

For some women, the risk of self-harm and suicide may increase as the pregnancy progresses, and increasing proximity to delivery is associated with increasing anxiety. Risks to the baby or fetus include termination of pregnancy, difficulties with bonding and attachment, and problems associated with ongoing anxiety in pregnancy, such as a negative impact on emotional and developmental outcomes in the longer term (NHS London Clinical Networks, 2018).

Rates of FOC vary across countries, in part because of how the condition is defined and measured. For some women, worrying about giving birth is common; however, a systematic review found that fear of childbirth at a level that requires intervention was less common at 6.3% to 14.8% (Nilsson et al, 2018). 
A recent meta-analysis estimated that approximately 14% of women may have severe tokophobia, and many more have mild to moderate anxieties about childbirth (O’Connell et al, 2017).

0 to 15 women every month are identified locally with a level of childbirth-related fear that requires additional clinical support

Maternal request for caesarean section (MRCS) due to anxiety and FOC warrants referral to a healthcare professional for perinatal mental health (PMH) support (NICE, 2011). The aim of the referral is to help women address the anxiety and fear in a supportive manner.

In theory, women are empowered to make choices about childbirth, but the reality is that they are routinely denied caesarean sections (Romanis, 2019). When a woman requests a caesarean, particularly in early pregnancy, and without a perceived clinical need, this alerts healthcare staff to the potential presence of FOC. Across the Hull and East Riding of Yorkshire area, approximately 10 to 15 women every month are identified with a level of childbirth-related fear that requires additional clinical support.

Referrals are made with the objective of addressing the woman’s fear and distress, and helping to manage associated psychological symptoms. However, this process takes time, and a significant number of referrals are made in the later stages of pregnancy, with limited time given to the work of the specialist services. Consequently, women are enduring pregnancy and childbirth with moderate to severe levels of fear, anxiety and stress.

Anecdotal evidence indicates that women would benefit from timely referrals for treatment and support, facilitated by a pathway of care. This has been shown to improve the experience of pregnancy, childbirth and the postpartum period significantly (NHS London Clinical Networks, 2018).  


When the fear is severe: tokophobia

Tokophobia is a severe fear of pregnancy and childbirth, which can have short- and long-term consequences for the mother and baby. The condition is either primary (affecting women who have not had a baby before, this is long-standing, often since childhood), and secondary (the more common type, affecting women who have had a baby before – often traumatically).

Tokophobia or severe fear of childbirth (FOC) – terms used interchangeably across the literature – is a strong anxiety about birth that impacts on daily functioning. In the area covered in this article, parts of Yorkshire and the Humber region, the provision for women with severe FOC included referral to either primary mental health care services or specialist perinatal mental health services, with no specific guidance on determining appropriate levels of support. Current practice demonstrated a lack of consistency in the approach from all services in offering support and psychoeducation to this group of women. This led to a recognised need from practitioners and service users (experts by experience) for a robust, integrated pathway of care, the development of which is described here by the authors.  


The development of a pathway for tokophobia

Conversations between midwives, health visitors and specialist PMH practitioners took place across the Hull and East Yorkshire region. It was agreed a pathway of care would be an essential tool to address the key components within current provision that were resulting in the existence of a lottery of access to appropriate interventions for women with FOC. The objectives of the pathway and the steps undertaken to pathway development were informed by, and adapted from, the clinical pathway development work of Cheah (2000).  

Objectives of care pathway Childbirth-related fear presented itself as an ideal case type for a care pathway. The objectives of the pathway were 
as follows:

  • Identify a best practice model for women with varying levels of childbirth-related fear.
  • Define the standard of pregnancy care for women with varying levels of childbirth-related fear.
  • Examine interrelationships among different elements and stages of the pathway and to coordinate strategies that would speed up appropriate referral processes.
  • Provide practitioners with a common goal and help them to understand their roles in the process.
  • Provide a framework for collecting and analysing data to ensure appropriate evaluation processes.
  • Decrease the direct clinical burden on midwives and specialist practitioners.
  • Improve birth satisfaction.

The development of the pathway evolved through eight stages, detailed below in chronological order.

Stage 1: Acknowledgement and assessment of the problem

The initial step in the process took the form of initial discussions between specialist midwifery and PMH  practitioners, followed by canvassing views from patients and the wider midwifery and health-visiting community. The objective was to gain knowledge about recent experiences of supporting women with FOC. The role of a pathway to standardise care was first introduced through these discussions. In early 2017, the need for the pathway was formalised by local NHS trusts, and a proposal to embark on developing the pathway was agreed across the clinical governance forums.

The support from management and leaders across the various organisations involved was critical to the success of the pathway.

Stage 2: Appointment of a steering group and assessment of current practice

Recruitment was undertaken to appoint a steering group, first to discuss the appropriateness of the proposed work, and then to assist in various aspects of pathway development. The initial plan was to convene this group at the start of the process and three months into the development process. The representatives of this group included midwives from community and labour ward settings, academics, perinatal therapists, a HV, a perinatal psychiatrist, perinatal practitioners and professionals from primary, secondary and third sector services, experts by experience (service users) and a consultant obstetrician.

At this initial meeting, an informal review of current practice was conducted to identify specific problem areas that could be resolved by a pathway. The outcomes of these discussions formed the first draft of the pathway template. The key members of the group (specialist midwife, specialist PMH nurse, experts by experience and academics), later called the ‘FOC/tokophobia pathway management group’, met regularly for 18 months to discuss progress and development, make recommendations for future stages and discuss timescales.

The media’s treatment of birth, both mainstream and social, may play a part in setting birth up as a negative experience

Stage 3: Assigning roles, purposes, responsibilities, accountabilities and goals

This was undertaken in the interests of minimising duplication of tasks, and ensuring effective action among all members of the group. One of the key priorities and objectives was to ensure that the goals and objectives of the pathway were reflective of the trust’s overall mission and planning priorities. This was facilitated by key members of the management team and their ongoing engagement with relevant NHS trusts linking with maternity forums and networks and regularly updating and consulting with commissioners, heads of midwifery and perinatal providers.

Primary outcomes achievable by the pathway included reduced psychological symptoms and distress, improved satisfaction with care and improved quality of life. There was an ongoing tension that this pathway may have an impact upon local caesarean rates; however, it was felt that this would be a potential secondary measure and should not be the primary focus of the care pathway, because of the complex competing ethical, legal, economic and medical issues involved in MRCS rates (Romanis, 2019).

Stage 4: Literature review and background information

It was vital that the available options within the pathway were evidence-based and reflected research findings presented in peer-reviewed scientific journals. A scoping literature review was conducted to inform the initial pathway draft. We recognised that while there had been an increased understanding of FOC/tokophobia in academic and clinical fields, the need to coordinate and prioritise the focus of future work in this area was critical.

There was a lack of consistency over the way severe forms of FOC were defined, with different prevalence rates being quoted across the available studies. This may be due in part to the differing measurement scales or outcome measures (Nilsson, 2018), and a lack of agreement about the distinction between secondary tokophobia and childbirth PTSD. Furthermore, from looking at some of the FOC literature, it became clear that the media’s treatment of birth in general, both mainstream and social, may play a part in setting birth up as a negative experience for some women (Stoll et al, 2014; Kjærgaard et al, 2008; Searle, 1996). Decisions had to be made in collaboration with academics, specialist perinatal providers and experts by experience in order to compensate for the lack of research consensus on critical aspects of best practice in supporting women with FOC/tokophobia. Finally, a literature review of existing pathways, which yielded one result from NHS London Clinical Networks (2018), informed the development of some of the options for care and support within the pathway.

Stage 5: Pathway development and design

The early outline of the pathway was developed by the team of professionals identified above. Through the ongoing development process, regular meetings with the management team, combined with continued liaison with the advisory/steering group, any existing and potential organisational, practice and clinical problems that would prevent the smooth running of the pathway were highlighted. The development process was iterative, with repeat cycles of pathway design, proposed options within the pathway, predictions and hypotheses in relation to women engaging with each stage/option of the pathway, and predicted and desired outcomes. A final version was agreed within the team after 16 months.


Key recommendations for health visitor practice

  • HVs are mandated to make contact with women at least once antenatally; this provides the potential to manage those with problematic FOC.
  • These women need to be supported through good pathways of care.
  • Women with pre-existing anxiety and depression are at risk of FOC.
  • HVs can identify FOC by opening up a dialogue with women about their feelings towards pregnancy, labour and childbirth.
  • Women with a previous birth trauma and who are planning another baby may be experiencing secondary tokophobia, and the relationship that they have with their HV may be critical in helping them share their fears.

Stage 6: Governance and approval

A number of organisations both statutory and non-statutory were involved in this pathway development and each organisation’s process was followed in order to consult and seek agreement with the content of the pathway. During the consultation phase, there were no comments or queries about the pathway, and this element appeared to be a smooth process.

Stage 7: Educating the workforce

A plan was developed to educate clinical staff through the delivery of an initial training event. The event was attended by midwives, HVs, experts by experience, mental health staff, service managers and commissioners. Presentations were delivered from members of the pathway steering group and management group. Educational material included an overview of FOC/tokophobia and the challenges of current provision, objectives of the pathway, scope and content. Guidelines on the use of the pathway were written and distributed to all attendees. This will be followed up by a series of road shows in the next six months.

Stage 8: Designing an implementation and evaluation plan

Effective evaluation of the pathway is contingent on the most appropriate, valid and reliable measures. This not only includes selection of the most appropriate measuring of tokophobia, whose definition remains equivocal, but also when such measures are administered, to determine the success of the pathway and associated interventions following referral. Consistent with this is the most appropriate measures and indices to determine whether the objectives of the pathway have been met. This represents an evolution of the pathway through systematic evaluation: for example, the objective of improving birth satisfaction may be initially achieved using a simple Likert-scored single-item. However, as the pathway evolves, multidimensional, psychometrically robust and short measures of birth experience are likely to required, such as the Birth Satisfaction Scale-Revised (Hollins Martin and Martin, 2014) to improve assessment and care.  

Conclusion

Care pathways have much to offer healthcare organisations and individual clinicians (Cheah, 2000). The FOC/tokophobia pathway has huge potential to provide a proactive multidisciplinary approach to implementing a supportive infrastructure for women with FOC, and an efficient resource for all health professionals and practitioners. Through the implementation of the care pathway, best practice in childbirth-related fear can be achieved, and the lottery of access to appropriate interventions for women with childbirth-related fear can be prevented. This work, which is transferable to other geographical areas, outlines the steps involved in the development of a care pathway for women, and provides some insights into the process for developing a set of stages to improve the support for women with childbirth-related fear. The bottom-up approach, which is at the forefront of FOC service provision and research in the UK, aims to ensure that women get the right support, and that their psychological and pregnancy needs are met.  


Key questions to identify tokophobia

  • How do you feel about the pregnancy? Look for anxious, ambivalent or negative emotions.
  • What are your thoughts and plans for childbirth? If she wants a caesarean, and there is no medical indication for it, what are her reasons?
  • What are your feelings towards the baby? Tokophobia and/or birth trauma can make it more difficult to form a bond with the baby.
  • What was your previous experience of childbirth like? Look for PTSD symptoms such as frequent flashbacks, nightmares or avoidance of being reminded of the birth.

London Clinical Networks, 2018


Dr Catriona Jones is a senior lecturer in maternal mental health at the University of Hull; Claire Marshall is specialist nurse and clinical lead, Hull and East Yorkshire perinatal mental health liaison team, Humber Teaching NHS Foundation Trust; Colin Martin is professor of perinatal mental health, and Julie Jomeen is professor of midwifery, both at the University of Hull.  


References: 

Ayers S, Bond R, Bertullies S, Wijma J. (2016) The aetiology of post-traumatic stress following childbirth: a meta-analysis and theoretical framework. Psychological Medicine 46(6): 1121-34. 

Cheah J. (2000) Development and implementation of a clinical pathway programme in an acute care general hospital in Singapore. International Journal for Quality in Healthcare 12(5): 403-12.

Hollins Martin CJ, Martin CR. (2014) Development and psychometric properties of the Birth Satisfaction Scale-Revised (BSS-R). Midwifery 30(6): 610-9.

Kjærgaard H, Wijma K, Dykes A, Alehagen S. (2008) Fear of childbirth in obstetrically low-risk nulliparous women in Sweden and Denmark. Journal of Reproductive and Infant Psychology 26(4): 340-50.

NHS London Clinical Networks. (2018) Fear of childbirth (tokophobia) and traumatic experience of childbirth: best practice toolkit. See: https://www.healthylondon.org/wp-content/uploads/2018/01/Tokophobia-best-practice-toolkit-Jan-2018.pdf (accessed 17 December 2019).

NICE. (2011) Caesarean section (CG132). See: nice.org.uk/guidance/cg132 (accessed 17 December 2019)

Nilsson C, Hessman E, Sjöblom H, Dencker A, Jangsten E, Mollberg M, Patel H, Sparud-Lundin C, Wigert H, Begley C. (2018) Definitions, measurements and prevalence of fear of childbirth: a systematic review. BMC Pregnancy and Childbirth 18(1): 28.

O'Connell MA, Leahy-Warren P, Khashan AS, Kenny LC, O'Neill SM.(2017) Worldwide prevalence of tokophobia in pregnant women: systematic review and meta-analysis. Acta Obstetricia et Gynaecological Scandinavica 96(8): 907-20.

Romanis EC. (2019) Why the elective caesarean lottery is ethically impermissible. Health Care Analysis 27(4): 249-68.

Searle J. (1996) Fearing the worst: why do pregnant women feel at risk? Australian and New Zealand Journal of Obstetrics and Gynaecology 36(3): 279-86. 

Stoll K, Hall W, Janssen P, Carty E. (2014) Why are young Canadians afraid of birth? A survey study of childbirth fear and birth preferences among young Canadian University students. Midwifery 30(2): 220-6.

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