Perinatal loss: What therapists need to know MODULE 4

Loss & the biopsychosocial model of perinatal mental health

© The Perinatal Loss Centre theperinatallosscentre.com.au facebook.com/theperinatallosscentre Loss & the biopsychosocial model of perinatal mental health

Lesson 1 When clients present: From pre-conception to the postpartum.

Lesson 2 The Biopsychosocial model of perinatal mental health.

Lesson 3 Loss in the context of perinatal mental health.

Lesson 4 Diagnostic considerations.

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Losses from conception to the postpartum

Psychiatric history Personality Past experiences REPRODUCTIVE STORIES & ATTACHMENT Previous losses

Preconception Pregnancy Birth Postpartum

Recurrent Miscarriage Complications of birth Baby in NICU Trying to conceive after loss Anticipating childbirth after loss Loss of fallopian tube Baby died Starting IVF Pregnant after loss Unexpected hysterectomy Parenting subsequent baby Ongoing IVF Fetal diagnosis Traumatic birth after loss Donor conception Termination Premature birth …………………………………… Infertility - childlessness Late term loss Stillbirth Death of baby or toddler

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© The Perinatal Loss Centre Module 4 1 When a baby dies

Life stress

“The moment we were told there was no heartbeat was surreal. We’ll never forget it”.

“My heart was racing” “I was in shock”.

“Our world was shattered”.

“I felt broken”.

“I felt like I’d been stabbed in the heart”. I sobbed to my partner, “I won’t survive this”.

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Why Loss is a stressful life event

• Decisions a couple makes, big or small, include the newest member of the family. • This baby’s life has begun for the couple, their families. • The narrative of the greater family incorporates this new member. • This little person has been mentalized. • Hearts have opened up. • The baby might have a name or a nickname. • The couple and family may be following pictures of developing fetus online. • A bond has been formed. • Conception may not have been an easy road. • A woman’s age may be an added stressor. • Feeling left behind in peer group. • The reproductive story is shattered. • TRAUMA.

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© The Perinatal Loss Centre Module 4 2 When supporters are not supportive

Friends and family can respond in ways that reduce or deny the importance of the event, leaving the grieving woman feeling alone, with little sense of support.

“Because nobody wants to talk about it. Unsure of what to say, friends, relatives, and coworkers often feel uncomfortable around bereaved parents. They aren’t sure how to respond to emotional expression, often avoid asking parents about it, and may ultimately avoid the parents as well. Such attitudes merely compound the parents’ and isolation”. (Davis, 2016. p. 2)

Suffering can be intensified when other people don’t recognize parents’ bond with their child.

Ø Friends and families may fail to recognize the bereaved parent’s need for support. Ø Bereaved parents may reject the potential support of others by not expressing their needs.

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Biopsychosocial model: Cultural/spiritual factors

Genetic / Cultural biological Spiritual vulnerability

Complicated Grief Sensitivity to Depression hormonal change Life stress Anxiety PTSD

Psychological vulnerability Social support

Adapted from Milgrom, Martin, & Negri (1999) and Wenzel (2011). © The Perinatal Loss Centre

© The Perinatal Loss Centre Module 4 3 Loss in the context of perinatal mental health

After the initial shock and distress, the majority of individuals or couples who experience perinatal loss, adjust well, and regain a sense of purpose.

(Leon, 2001)

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Loss in the context of perinatal mental health

• Post-loss mental health complications include chronic or complicated grief, depression, anxiety, and PTSD. (Bennett et al., 2008; Hutti, et al., 2017) • 15 – 30% of women who experience perinatal loss have enduring adjustment problems. (Bennet et al., 2008; Hughes et al., 2002; Hutti et al., 2017; Klier, et al., 2000; Swanson, 1999)

• Relationship breakdown is common after miscarriage and stillbirth as compared to live births. (see Hutti, et al., 2017)

• 25% of women who suffered stillbirth, developed clinically significant symptoms of depression, anxiety or PTSD. (Scheidt et al., 2007)

• Early pregnancy loss increases risk for developing anxiety, depression and PTSD. Particularly when: Ø psychiatric history, low support, multiple , subfertility. (Farren, et al., 2018)

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© The Perinatal Loss Centre Module 4 4 Loss in the context of perinatal mental health

• Depressive symptoms have been found in women who failed to achieve a subsequent pregnancy within one year post-miscarriage. (Swanson, 2000)

• Women who miscarried reported more depressive symptoms, more anxiety symptoms and lower satisfaction than women with no fertility difficulties. (in McGee et al., 2018).

• Recurrent miscarriage increases the risk for experiencing depression and stress. (Kolte, et al., 2015, cited in Rich, 2018)

• One third of women attending recurrent miscarriage clinics were clinically depressed and had high levels of anxiety. (Rai, Rega, & Backos, 2011, cited in Rich, 2018)

• High risk of complicated grief after termination of pregnancy due to fetal anomalies. (Kersting & Wagner, 2012)

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Risk factors for poor mental health outcomes

• Previous history of depression and anxiety is the strongest predictor of psychological functioning after loss (and in a subsequent pregnancy).

• Loss is a risk factor in and of itself (without psychiatric history).

• Not enough time spent with the baby after birth.

• Longer than 6 months to fall pregnant again.

• Advanced gestational age.

• History of previous trauma.

• Loss irrespective of gestation, increases risk of anxiety, depression and stress in subsequent pregnancies.

Rich (2018)

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© The Perinatal Loss Centre Module 4 5 Cumulative sources of stress • Recurrent miscarriages

• Other reproductive losses

• Infertility

• Antenatal depression or anxiety Life stress • Traumatic birth

• Relationship problems / domestic violence

• Family problems

• Ill health

• Housing issues

• Financial pressures

• Other stressful life events / losses

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Other losses in perinatal mental health • Loss of old self (pre-loss)

• Loss of naivety around having babies

• Loss of relationships

• Loss of trust in the world

• Loss of faith or belief in God

• Loss of trust in body

• Loss of control (body, life)

• Loss of positive body image

• Loss of work identity

• Loss of a loved one

• Other losses in the life of the client

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© The Perinatal Loss Centre Module 4 6 Loss histories

• Earlier life losses.

• ‘Motherless mothers’.

• Trauma histories.

• Estranged family relationships.

• Intergenerational losses.

• Insecure attachment style

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Protective factors

• Resilience

• Hardiness

• Coping skills

• Relationship support

• Social support

• Secure attachment style

• Support groups

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© The Perinatal Loss Centre Module 4 7 Diagnostic issues DSM-5

Historically

• DSM-1V-TR (2000) included a ‘bereavement exclusion’ to diagnoses of Major Depressive Disorder

• If met criteria for MDD with bereavement in the past 2 months, could not be diagnosed as MDD

Current

• The bereavement exclusion removed.

• Commentators are concerned that the removal of this exclusion criterion could lead to pathologizing normal grief, over-diagnosing depression, and inappropriate use of medications.

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Why bereavement criterion was removed

1. Normal adjustment to bereavement can last for years therefore little data to support a 2 month exclusion.

2. There is now greater knowledge on how to distinguish normal bereavement from depression.

3. Bereavement is a recognized stressor for precipitating a depressive episode.

4. When major depression occurs in the context of bereavement, it represents Ø additional risk for suffering Ø feelings of worthlessness Ø poorer functioning Ø increased suicidality Ø a more prolonged and complicated trajectory

5. Bereavement-related major depression most likely to occur with psychiatric history or family history of depression.

Hall (2014)

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© The Perinatal Loss Centre Module 4 8 Distinguishing between bereavement & depression

• Sad mood, anhedonia, disturbed sleep, guilt and can be present in both.

• Overlap in symptomatology between bereavement and depression can make it challenging to clinically disentangle grief from MDD.

• Bereavement can occur without depression.

• Bereavement and depression can co-occur.

• Clients with complicated bereavement are not necessarily depressed.

Hall (2014)

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Bereavement Depression Ø Sadness in waves Ø Sadness more pervasive Ø Capacity to identify positive Ø Meaninglessness emotions (e.g. love for the baby) and Ø Loss of pleasure (anhedonia) global and memories (e.g. how it felt being pregnant) more pervasive Ø Loss of pleasure (anhedonia) associated Ø “My life is worthless” with yearning for the baby Ø “I must have done something wrong. I Ø “My life has changed forever always ruin things, I don’t deserve to have a Ø “What did I do wrong? If only I had…” baby” Ø Suicidal thoughts about being with the Ø Suicidal thoughts associated with baby worthlessness Ø Preserved self esteem Ø Self-loathing Ø Sense of purpose Ø Lack of purpose

Adapted from Hall (2014)

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© The Perinatal Loss Centre Module 4 9 Persistent Complex bereavement disorder DSM 5 Persistent Complex Bereavement Disorder, is listed in the DSM-5 as a ‘condition for further study’.

Ø Distinguishes normative grief from complicated grief by chronicity and severity Ø Intense sorrow Ø Persistent yearning and longing for the deceased Ø Significant functional impairment in excess of 12 months Ø Other possible symptoms– emotional numbness, anger, excessive avoidance of reminders of the loss, belief that life is meaningless, self blame

Arizmendi & O’Connor (2015); Hall (2014); Maciejewski, et al. (2016); Shear, et al. (2011)

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Prolonged grief disorder ICD 11

• Proposed for inclusion in ICD 11

• Characterized by core symptoms

Ø Longing for or preoccupation with the deceased Ø Emotional distress (anger, guilt, feeling that part of oneself died) Ø Significant functional impairment Ø Persists longer than a minimum of 6 months (Killikelly & Maercker, 2017) or 1 year (Carmassi, Bertelloni, & Dell’Osso, 2018) • Proposed criteria subject to change

Killikelly & Maercker (2017); Lenferink, & Eisma (2018)

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© The Perinatal Loss Centre Module 4 10 Complicated grief

Shear (2015) definition

Complicated grief is a persistent form of intense grief in which maladaptive thoughts and dysfunctional behaviors are present along with continued yearning, longing and sadness and/or preoccupation with thoughts and memories of the person who died. Grief continues to dominate the person’s life and the future seems bleak and empty.

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Identifying complicated grief

Inventory of Complicated Grief (ICG). (Prigerson, et al., 1995)

Brief Grief Questionnaire. (Shear, 2015)

Clinical interview. (Shear, 2015)

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© The Perinatal Loss Centre Module 4 11 Perinatal scales Scales designed to measure perinatal loss (in Wenzel, 2016)

Ø Perinatal Grief Scale (PGS; Toedter, Lasker, & Alhadeff, 1988)

Ø Perinatal Grief Intensity Scale (Hutti, dePacheco, & Smith, 1998)

Ø Munich Grief Scale (MGS, Beutal et al., 1995)

Ø Perinatal Bereavement Grief Scale (PBGS; Ritsher & Neugebauer, 2002)

Ø See Brier (2008) and Covington (2006) for reviews

• Perinatal PTSD Questionnaire (Callahan, Borja, & Hyman, 2006)

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The question of time

Rests on clinical judgment based on

Ø Severity of symptoms

Ø Impairment

Ø The trajectory of adaptation to the loss

Ø Attitude of the bereaved person, partner, friends, family

Ø Is the client on a course that is progressing towards integration?

Shear (2015)

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© The Perinatal Loss Centre Module 4 12 Complicated grief and PTSD in brief

• Overlapping symptoms • Differences

Ø Preoccupying thoughts about the loss Ø PTSD characterized by thoughts and Ø Avoidance memories relating to the traumatic event Ø Negative emotional states Ø Complicated grief characterized by Ø Negative beliefs about oneself or others thoughts and memories relating to the Ø Feeling detached from others baby who is not here Ø PTSD - avoidance relating to reminders of the event Ø Complicated grief - avoidance relating to pregnancy, babies Ø PTSD involves alterations in physiological arousal and reactivity Ø Complicated grief – intense sorrow Frumkin & Robinaugh (2018)

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Traumatic bereavement

• Incorporates elements of trauma and bereavement.

• Acknowledges the circumstances of the loss and the relationship to the deceased.

• Affects biological (physical, somatic), behavioural, cognitive, emotional, intrapersonal and interpersonal ways of being in the world.

• Traumatic bereavement is a risk factor for complicated grief and other mental health complications.

Neria & Litz (2004); Rubin, Witztum, & Malkinson (2017)

Also called “traumatic grief” • Incorporates core symptoms of separation distress and traumatic distress (Prigerson, et al., 1999)

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© The Perinatal Loss Centre Module 4 13 Post-traumatic Stress • Miscarriage related to intrusive, trauma-related symptoms (e.g., flashbacks, bad dreams, intense feelings related to the event). (See McGee et al 2018) • There can be pain, blood, other terrifying sensations and sights, and a fully formed (or malformed) dead baby. • There can be confusion, loss of control, fear for one’s own safety. • A sense of loss of control has been identified as a major contributor to the traumatic effects of pregnancy loss. • Women who experience uncaring clinicians during miscarriage are at higher risk of developing PTSD. (Beck, et al., 2013) • Mothers who deliver preterm and whose babies are in NICU, have been found to have post-traumatic stress symptoms. (Beck, et al., 2013) • Post-traumatic stress disorder following stillbirth has been reported in the literature. (see Bennett, et al., 2008; Cheung & Reed, 2017) • Childbirth itself can be traumatic for both women and men. (Beck, et al., 2013) © The Perinatal Loss Centre Wenzel, 2016

Traumatic birth

Birth trauma is an experience of labor and delivery that involves actual or threated serious injury or death to the mother or her infant. The birthing woman experiences intense fear, loss of control, helplessness and horror, and/or feels stripped of her dignity.

Women with diagnoses of PTSD reported: • Feeling powerless • Lack of information about procedures being used • Physical pain • Perceived unsympathetic healthcare providers • Invasive procedures • Death of their babies

See Beck (2004); Beck, et al. (2013); Gamble, et al. (2002)

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© The Perinatal Loss Centre Module 4 14 Risk factors for birth trauma

• Depression and anxiety in pregnancy.

• Previous psychiatric problems.

• Prior trauma (especially childhood sexual abuse).

Note. Women who meet criteria for PTSD are at increased risk for depression.

Beck, et al. (2013)

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Biopsychosocial model

Genetic / biological vulnerability

Complicated Grief Sensitivity to Life stress / Depression hormonal change trauma Anxiety PTSD

Psychological vulnerability Social support

Adapted from Milgrom, Martin, & Negri (1999) and Wenzel (2011). © The Perinatal Loss Centre

© The Perinatal Loss Centre Module 4 15 Anxiety

• Anxiety is the hallmark of pregnancy after loss. (Black et al., 2016)

• Across cultures, pregnancy specific anxiety is fuelled by fears of loss. (Coté-Arsenault & Dombeck, 2001; Suttan & Miskam, 2012)

• Anxiety disorders can be exacerbated in pregnancy after loss. (Austin & Priest, 2005)

• Anxiety in pregnancy is a risk factor for poor postnatal adjustment. (Wenzel, 2011)

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Module 4 References Austin, M. P., & Priest, S. R. (2005). Clinical issues in perinatal mental health: new developments in the detection and treatment of perinatal mood and anxiety disorders. Acta Psychiatrica Scandinavica, 112(2), 97-104. Arizmendi, B. J., & O’Connor, M. F. (2015). What is “normal” in grief?. Australian Critical Care, 28(2), 58-62. Banker, J. E., & La Coursiere, D. Y. (2014). Postpartum depression: risks, protective factors, and the couple's relationship. Issues in mental health nursing, 35(7), 503-508. Beck, C. T. (2004). Post-traumatic stress disorder due to childbirth: the aftermath. Nursing research, 53(4), 216-224. Beck, C. T., Driscoll, J. W., & Watson, S. (2013). Traumatic childbirth. Routledge. Bennett, S. M., Litz, B. T., Maguen, S., & Ehrenreich, J. T. (2008). An exploratory study of the psychological impact and clinical care of perinatal loss. Journal of Loss and Trauma, 13(6), 485-510. Black, B. P., Wright, P. M., & Limbo, R. (2016). Perinatal and paediatric bereavement in nursing and other health professions. Springer Publishing Company. Callahan, J. L., Borja, S. E., & Hynan, M. T. (2006). Modification of the Perinatal PTSD Questionnaire to enhance clinical utility. Journal of Perinatology, 26(9), 533. Carmassi, C., Bertelloni, C. A., & Dell’Osso, L. (2018). Grief reactions in diagnostic classifications of mental disorders. In Clinical handbook of bereavement and grief reactions (pp. 301-332). Humana Press, Cham. Chung, M. C., & Reed, J. (2017). Posttraumatic stress disorder following stillbirth: Trauma characteristics, locus of control, posttraumatic cognitions. Psychiatric Quarterly, 88(2), 307-321. Côté-Arsenault, D., & Dombeck, M. T. (2001). Maternal assignment of fetal personhood to a previous pregnancy loss: Relationship to anxiety in the current pregnancy. Health Care for Women International, 22(7), 649-665. Crunk, A. E., Burke, L. A., & Robinson, E. M. (2017). Complicated grief: An evolving theoretical landscape. Journal of Counselling & Development, 95(2), 226-233. Davis, D. (2016). Empty cradle, broken heart: Surviving the death of your baby. Fulcrum Publishing. Farren, J., Mitchell-Jones, N., Verbakel, J. Y., Timmerman, D., Jalmbrant, M., & Bourne, T. (2018). The psychological impact of early pregnancy loss. Human reproduction update, 24(6), 731-749.

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Frumkin, M. R., & Robinaugh, D. J. (2018). Grief and Post-Traumatic Stress Following Bereavement. In Clinical Handbook of Bereavement and Grief Reactions (pp. 19-44). Humana Press, Cham. Gamble, J. A., Creedy, D. K., Webster, J., & Moyle, W. (2002). A review of the literature on debriefing or non-directive counselling to prevent postpartum emotional distress. Midwifery, 18(1), 72-79. Hall, C. (2014). Bereavement and depression in the DSM-5. InPsych, 36, 22-23. Hutti, M. H., Myers, J., Hall, L. A., Polivka, B. J., White, S., Hill, J., Kloenne, E. Hayden, J. & Grisanti, M. M. (2017). Predicting grief intensity after recent perinatal loss. Journal of Psychosomatic Research, 101, 128-134. Kersting, A., & Wagner, B. (2012). Complicated grief after perinatal loss. Dialogues in clinical neuroscience, 14(2), 187. Killikelly, C., & Maercker, A. (2017). Prolonged grief disorder for ICD-11: the primacy of clinical utility and international applicability. European journal of psychotraumatology. Klier, C. M., Geller, P. A., & Neugebauer, R. (2000). Minor depressive disorder in the context of miscarriage. Journal of affective disorders, 59(1), 13-21. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer publishing company. Leon, I. G. (2001). Perinatal loss. Psychological aspects of women's health care: The interface between psychiatry and obstetrics and gynaecology, 141-173. Lenferink, L. I., & Eisma, M. C. (2018). 37,650 ways to have “persistent complex bereavement disorder” yet only 48 ways to have “prolonged grief disorder”. Psychiatry research, 261, 88-89. Maciejewski, P. K., Maercker, A., Boelen, P. A., & Prigerson, H. G. (2016). “Prolonged grief disorder” and “persistent complex bereavement disorder”, but not “complicated grief”, are one and the same diagnostic entity: an analysis of data from the Yale Bereavement Study. World Psychiatry, 15(3), 266-275. McGee, K., PettyJohn, M. E., & Gallus, K. L. (2018). Ambiguous Loss: A Phenomenological Exploration of Women Seeking Support Following Miscarriage. Journal of Loss and Trauma, 23(6), 516-530. Milgrom, J., Martin, P. R., & Negri, L. M. (1999). Treating postnatal depression: A psychological approach for health care practitioners. Chichester: Wiley.

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Neria, Y., & Litz, B. T. (2004). Bereavement by traumatic means: The complex synergy of trauma and grief. Journal of Loss and Trauma, 9(1), 73-87. Prigerson, H. G., Shear, M. K., Jacobs, S. C., Reynolds, C. F., Maciejewski, P. K., Davidson, J. R., ... & Widiger, T. A. (1999). Consensus criteria for traumatic grief: A preliminary empirical test. The British Journal of Psychiatry, 174(1), 67-73. Rich, D. (2018). Psychological Impact of Pregnancy Loss: Best Practice for Obstetric Providers. Clinical obstetrics and gynaecology, 61(3), 628-636. Ross, L. E., Sellers, E. M., Gilbert Evans, S. E., & Romach, M. K. (2004). Mood changes during pregnancy and the postpartum period: development of a biopsychosocial model. Acta Psychiatrica Scandinavica, 109(6), 457-466. Rubin, S. S., Witztum, E., & Malkinson, R. (2017). Bereavement and traumatic bereavement: working with the two-track model of bereavement. Journal of Rational-Emotive & Cognitive-Behaviour Therapy, 35(1), 78-87. Scheidt, C. E., Waller, N., Wangler, J., Hasenburg, A., & Kersting, A. (2007). Mourning After Perinatal Death-Prevalence Symptoms and Treatment-A Review of the Literature. Psychother Psychosom Med Psychol., 57(1), 4. Shear, M. K., Simon, N., Wall, M., Zisook, S., Neimeyer, R., Duan, N., ... & Gorscak, B. (2011). Complicated grief and related bereavement issues for DSM‐5. Depression and anxiety, 28(2), 103-117. Shear, M.K. (2015). Complicated grief treatment: Instruction manual used in NIHM grants. New York: Columbia Centre for Complicated Grief, Columbia University. Sutan, R., & Miskam, H. M. (2012). Psychosocial impact of perinatal loss among Muslim women. BMC women's health, 12(1), 15. Swanson, K. M. (1999) Effects of caring, measurement, and time on miscarriage impact and women’s well-being. Nursing Research, 48, 288–298. Swanson, K. M. (2000). Predicting depressive symptoms after miscarriage: A path analysis based on the Lazarus paradigm. Journal of women's health & gender-based medicine, 9(2), 191-206. Wenzel, A. (2011). Anxiety in childbearing women: Diagnosis and treatment. American Psychological Association. Wenzel, A. (Ed.). (2016). The Oxford handbook of perinatal psychology. Oxford University Press.

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