Developing a care pathway for women with fear of

Dr Catriona Jones - Senior Lecturer: Maternal Mental Health. University of Hull.

Claire Marshall - Senior Specialist Perinatal Mental Health Nurse, Hull and East Yorkshire Perinatal Mental Health Liaison Service. January 2018 (The unknowns/uncertainties) • The definition(s) • The population impacted and prevalence • How tokophobia might be measured • The relationship between tokophobia and posttraumatic stress disorder (PTSD; specifically, secondary tokophobia) • Interventions within pathways of care, including requests for Useful definitions • Fear of labour and birth so overwhelming that it overshadows a and affects daily functioning (Jones, Wadephul, Marshall, Jomeen 2018)

• Tokophobia is characterised as an unreasoning dread of childbirth in women and a specific and harrowing condition, a pathological dread and an avoidance of childbirth (Hoffberg 2000, 2003) Prevalence of fear of childbirth varies, this may be due in part, to the differing measurement scales

Very severe FOC 7.1% (WDEQ) Severe 11.1% Moderate 25.3 – 26.2% Nilsson et al., (2018) How does it manifest itself to practitioners? Women presenting with increased levels of anxiety about the pending birth.

Commonly by an unexpected maternal request for caesarean section at antenatal consultation (with no medical indication).

Women being extremely anxious about contraception use.

Ambivalent engagement with maternity or sexual health services. Primary Tokophobia

• Women who are going to be giving birth at term for the first time • Deep fear of childbirth often conflicting with strong maternal desire • Originates in childhood/adolescence. Sex education, menstruation • More common in women with anxious/perfectionist personalities • Avoidance of pregnancy • Scrupulous use of contraception • Distressed request for termination of pregnancy • If pregnancy occurs, an early request for CS will be made, or concealed pregnancy • Influence of family, friends and media – exposure to attitudes to birth

(O’Connell et al 2017, Raisanen et al 2014, Laursen et al 2008, Haines et al 2015, O’Connell et al 2015, Lukasse et al 2014, Hildingsson et al 2017, Nerum et al 2006) Secondary tokophobia

• A consequence of trauma relating to previous birthing process at any gestation • Not necessarily “abnormal” from the clinicians perspective • Emergency CS or instrumental delivery increases risk • Symptoms align with Post Traumatic Stress Disorder symptoms - nightmare, flashback, avoidance, hypervigilance • Consider the impact on previous miscarriage, termination of pregnancy, assisted conception, sexual abuse, gynaecological procedures etc Fear of being abandoned and alone Fear of not being able to cope with the pain Fear of not knowing and not being able to plan for the unpredictable

Fear of not being Fear of harm or stress heard to the baby

Fear of my bodys ability to give birth Fear of being “done to”

Fear of harm to self in labour or postnatally Themes: Construct of fear: (Slade et al., 2019) Predisposing factors (Striebich et al., 2018) • History of mental health problems in particular depression or anxiety • Advanced maternal age • High socio economic status • Poor social support • History of sexual, emotional or physical abuse • Dissatisfaction with current partnership • Women with an anxious personality type • Fearing the worst around physical problems • Being exposed to negative or horror stories about childbirth (Melender, 2002; Fisher, 2006) Morbidity (O’Connell et al, 2015) For mother •Insomnia/sleeplessness •Antenatal depression and increased risk of postnatal depression •Requests for caesarean section •Requests for termination of pregnancy •Longer labours (related to increased use of epidural analgesia) •Increased instrumental births •Post-traumatic stress disorder (PTSD) •No further or large gap between pregnancies •Subsequent sterilization For infant •Higher neonatal ICU admissions •Reduced birth weight •Reduced infant bonding and attachment Morbidity Updated (Striebich et al., 2018)

• Recurring aggravating and painful thoughts • Thoughts occurring day or night • Feeling tense, nervous or restless • Experiencing nightmares • Increased physical symptoms • A lack of concentration at home and at work • Feeling tearful and wanting to speak about their fears Clinical presentation • Reluctance to attend appointments • Describing significant symptoms of anxiety • Anxiety symptoms around childbirth most troubling • Moderate low mood • Poor sleep • Difficulty in concentrating at work • Increased irritability • Struggling to communicate her fears to partner The challenges with current practice guidelines • Women are being referred into PMH services as late as 41 weeks • Opportunities for earlier referrals or other options for support are being missed • Specifically with secondary tokophobia, some women have a legitimate concern about their next labour and birth not related to fear per se but more linked to the logistics of getting into hospital on time • Inconsistencies in the approaches for caring for women Development of a care pathway

Aim of the pathway: To raise awareness of the issues To provide a number of evidence based options of care/treatment for women Provide support and treatment (where needed) within a stepped model of care Not to reduce caesarean section rates directly To rethink the idea that caesarean section is a woman's only option Pathway development group Members: Midwives Service representatives Obstetricians Academics Perinatal mental health practitioners Health visitors Perinatal psychiatrist The different stages of pathway development • Acknowledgement and assessment of the problem • Appointment of a steering group and assessment of current practice • Assigning roles, responsibilities and accountabilities • Literature review and background information • Pathway development and design • Governance and approval • Educating the workforce • Designing and implementation and evaluation plan Key elements of the pathway

1. Routine conversation at booking and at regular points during antenatal care which prompt the woman to consider labour and birth. 2. Midwife/HCP making own assessment of clinical need to either manage women in the community OR refer to additional services. 3. Options including 1:1 birth prep classes and continuity of care or referral to SPMH team at 12 weeks. 4. 20 – 36 weeks: Where needed, apt with anaesthetics team, labour ward or tour of maternity unit. 5. 20 – 28 weeks: Consultant apt and decision about model of delivery. 6. 34 – 36 weeks: Consultant apt to finalise birth plan. 7. Where appropriate the use of a validated measures: for example, the fear of birth scale FOBs (Haines et al 2015), A 2 item visual analogue scale that includes the constructs of worry and fear. Or an equivalent measure such as the Oxford Worries about Labour Scale (OWLS) … Clinical pathway development queries and dilemmas

• Referral for psychological support: primary or secondary care? • Psychological treatment: CBT or counselling? • Peer support: at what point and where would this come from? • Exposure to clinical environment: how? • Referral and subsequent management: depends on its aetiology and severity? • Continuity of carer: how? For mild primary tokophobia, listening to fears, dispelling common myths about labour and birth and offering reassurance of adequate support in labour may be of great benefit. For secondary tokophobia an opportunity to reflect and de-brief following a traumatic birth experience may be cathartic; alongside explanations as to why things happened – this may be sufficient to alleviate anxiety. Patient representative perspective • Reinforcing confidence in birth, giving time for questions • Discussing previous experiences • Continuity of care from health professionals • The opportunity to visit labour ward • The opportunity to meet anaesthetist • CS may be needed in some cases • Or “Special Requests” to help enable vaginal delivery. For example early epidural/no forceps. • Don’t underestimate the value of CS as an “Insurance Policy” • An MDT birth plan developed before 36 weeks of pregnancy. Finally …

• Pathway and guidance have been accepted across the various organisations that need to be involved in implementation • Next steps: Training of HCP’s, sharing information with the public, improving our knowledge of a woman's experience of fear of birth and maternity care • Ongoing work around development of a suitable measure (Professor Colin Martin and Professor Julie Jomeen, University of Hull, UK, Southern Cross University, Australia) References Hofberg KM, Brockington IF. Tokophobia: a morbid dread of childbirth. Its presence in Great Britain and Grand Cayman, British West Indes. J Psychosom Obstet Gynaecol; 22:96 (book of abstracts, suppl 1) Haines HM, Rubertsson C, Pallant JF, Hildingsson I. Women’s attitudes and beliefs of childbirth and association with birth preference: a comparison of a Swedish and an Australian sample in mid-pregnancy. Midwifery. 2012; 28: e850–6 Haines et al (2015) Identifying women who are afraid of giving birth: A comparison of the Fear of Birth Scale with the WEDQ-A. In a large Australian cohort. Sexual and Reproductive Healthcare 6 pp 204-210 Hoffberg, Ward (2003) Fear of Pregnancy and Childbirth. Postgrad Med J 2003; 79: 505–510 Jones C, Wadephul F, Marshall C, Jomeen J (2018) Tokophobia: what its like to have a fear of pregnancy and childbirth. Available online at https://www.hull.ac.uk/work-with-us/more/media-centre/news/2018/tokophobia O’Connell M, et al (2017) Nordic Federation of Societies of and Gynecology, Acta Obstetricia et Gynecologica Scandinavica 96 (2017) 907–920 O’Connell M, et al (2015) Tocophobia e the new hysteria?, Obstetrics, Gynaecology and Reproductive Medicine http://dx.doi.org/10.1016/j.ogrm.2015.03.002 Hildingsson I, Haines H, Karlstrom A, Nystedt A (2017) Presence and process of fear of birth during pregnancy – findings from a longitudinal cohort study. Women and Birth, 30, pp 242 – 247 Laursen M, Hedegaard M, Johansen C (2007) Fear of childbirth: predictors and temporal changes among nulliparous women in the Danish National Birth Cohort. British Journal of Obstetrics and Gynaecology, 115, pp 354 – 360 Raisanen S, Lehto SM, Nielsen HS, Gissler M, Kramer MR, Heinonen S (2014) Fear of childbirth in nulliparous and multiparous women: a population based analysis of all singleton births in Finland in 1997 – 2010. Royal College of Obstetricians and Gynaecologists, pp 965 – 970 Sheen K, Slade P. Examining the content and moderators of women’s fears for giving birth: a meta synthesis. J Clin Nurs 2017; 27 (13-14) 2523 – 2535: doi: 10.1111/jocn.14219.