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The Grief of Late Pregnancy Loss a Four Year Follow-Up

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The Grief of Late Pregnancy Loss a Four Year Follow-Up The grief of late pregnancy loss A four year follow-up Joke Hunfeld The grief of late pregnancy loss A four year follow-up Rouwreacties bij laat zwangerschapsverlies. Een vervolgstudie over vier jaar. Proefschrift Tel' verkrijging van de graad van doctor aan de Erasmus Universiteit Rotterdam op gezag van de rector magnificus Pro£dr P.W.C. Akkermans M.A. en volgens besluit van het college voor promoties. De open bare verdediging zal plaatsvinden op woensdag 13 september 1995 om 15.45 uur door Johanna Aurelia Maria Hunfeld geboren te Utrecht. Promotiecommissie: Promotoren: Pro£ jhr dr J.w, Wladimiroff Pro£ dr E Verhage Overige leden: Pro£ dr H.P. van Geijn Pro£ dr D. Tibboel Pro£ dr Ee. Verhulst Het onderzoek dat in dit proefschrift is beschreven kon worden uitgevoerd dankzij subsidies van Ontwikkelings Geneeskunde, het Universiteitsfonds van de Erasmus Universiteit en het Nationaal Fonds voor de Geestelijke Volksgezondhcid. CIP-gegevens KDninklijke Bibliotheek, Den Haag Hunfeld, J.A.M. The grief onate pregnancy loss / Johanna Aurelia Maria Hunfeld - Delft Eburon P & L Proefschrift Erasmus Universiteit Rotterdam - met samenvatting in het Nederlands ISBN 90-5651-011-8 Nugi Trefw;: perinatal grief Distributie: Eburon P&L, Postbus 2867, 2601 CW Delft Drukwerk: Ponsen & Looijen BY, Wageningen Lay-out verzorging: A. Praamstra All rights reserved Omslagtekening © P. Picasso, 1995 do Becldrecht Amsterdam © Joke Hunfeld, 1995 Rouwreacties bij laat zwangerschapsverlics Eell vcrvolgstudie over vier jaar Contents 1 Theoretical and empirical background and research objectives 1 1.1 Introduction 1 1.2 Prenatal diagnosis 1 1.2.1 The ultrasound technique 2 1.2.2 The psychological impact of prenatal diagnosis 3 1.2.3 Specific problems oflate - threatened - pregnancy loss 7 1.3 Perinatal grief 8 1.4 Theoretical background of perinatal grief 9 1.4.1 The stress concept 10 1.4.2 The trauma concept 10 1.4.3 Coping with a traumatic event 10 1.5 Grief theories 11 1.5.1 The Stress Response Syndrome 12 1.5.2 A multidimensional model of perinatal grief 15 1.6 Determinants of perinatal grief 15 1.6.1 The obstetric context 17 1.6.2 Individual characteristics 18 1.6.3 The social environment 19 1. 7 Normal versus abnormal grief 20 1.8 Methodological issues in perinatal grief research 22 1. 9 Conclusion 22 1.10 Research objectives 22 References 24 2 Reliability and validity of the Perinatal Grief Scale for women in late pregnancy (24 weeks or longer) following the ultrasound diagnosis of a severe or lethal fetal anomaly 29 2.1 Synopsis 29 2.2 Introduction 29 2.3 Method 30 2.4 Results 31 2.5 Discussion 34 Acknowledgements 36 References 36 3 Prevalence ofpsychological instability and course ofperinatal stress (PEL) and perinatal grief (PGS) in women in late pregnancy (24 weeks or longer) following an unfavourable ultrasound diagnosis 37 3.1 Synopsis 37 3.2 Introduction 37 3.3 Method 38 3.4 Results 40 3.4.1 Prevalence and course ofpsychological instability. perinatal stress and perinatal grief 41 3.4.2 Determinants of perinatal stress and perinatal grief 42 3.5 Discussion 44 3.6 Conclusion 45 References 45 4 Predictors of perinatal stress and perinatal grief three months after the delivelY of an infant with severe or lethal anomalies. An exploratory study 47 4.1 Synopsis 47 4.2 Introduction 47 4.3 Method 49 4.4 Results 51 4.4.1 Prevalence of previous stress, acute psychological defenses, perinatal stress and perinatal grief 51 4.4.2 Relationship between previous stress, acute psychological defenses and perinatal stress and perinatal grief 52 4.4.3 Prediction of perinatal stress and perinatal grief using previous stress and acute psychological defenses 52 4.5 Discussion 53 4.6 Conclusion 55 References 55 5 The disposition for feelings of inadequacy predicts perinatal stress, perinatal grief and general psychological distress (GHQ-28) after perinatal loss. A four year follow-up study 57 5.1 Synopsis 57 5.2 Introduction 57 5.3 Method 58 5.4 Results 61 5.4.1 General psychological distress and characteristics of the grief process four years after perinatal loss 61 5.4.2 Course of perinatal stress and perinatal grief four years after perinatal loss 63 5.4.3 Prediction of perinatal stress, perinatal grief and general psychological distress four years later 63 5.5 Discussion 64 Final comments 66 Acknowledgements 67 References 67 6 Decision-making concerning late pregnancy termination and perinatal grief An exploratory study 69 6.1 Synopsis 69 6.2 Introduction 69 6.3 Method 71 6.4 Results 72 6.4.1 Number and motives ofwomen who wished to terminate or to continue pregnancy 73 6.4.2 The relationship between "perceived control" versus "had no choice" and the intensity of grief (on the Perinatal Grief Scale) 73 6.5 Discussion 74 References 75 7 Threatened late pregnancy loss and the need for assistance. What kind of assistance is desired? At what time? 77 7.1 Synopsis 77 7.2 Introduction 77 7.3 Method 79 7.4 Results 80 7.4.1 Medical information 81 7.4.2 Emotional support 81 7.5 Discussion 81 References 83 8 General discussion 85 8.1 Theoretical background 85 8.2 Method 86 8.3 Psychological instability 86 8.4 Perinatal stress and perinatal grief 87 8.5 Predictors of perinatal stress (PEL), perinatal grief (PGS) and general psychological distress (GHQ-28) 88 8.6 Motives to terminate or continue pregnancy 88 8.7 Prevalence of a need for assistance and recommendations 89 8.8 Future research directions 91 References 93 SummalY 95 Samenvatting 99 Appendix 103 Dankwoord 113 Curriculum Vitae 115 1 Theoretical and empirical background and research objectives 1.1 Introduction In the Netherlands, approximately 200,000 infants are born each year of which 8,000 (4%) display some degree of structural pathology. In approximately 2000 - 2500 (25 - 30%) of those iufants, the malformation will be either lethal or will lead to severe physi­ cal and/or mental handicaps. The largest category ofmalformations concerns anomalies as a result ofa combination ofenvironmental and hereditary factors, such as spina bifid a and congenital heart problems. In the Netherlands pregnant women with a known increased risk of a fetal abnor­ mality, for instance advanced maternal age, a previously affected child, or being a known carrier of a genetic abnormality, are eligible for prenatal diagnosis. This is also the case when fetal problems are discovered dnring a basic ultrasound scan, such as severe growth retardation or polyhydramnion. A considerable number of severe or lethal fetal malformations are diagnosed during the second half of pregn~ncy, sometimes at 24 weeks or later. In the Netherlands, the legal upper limit for pregnancy termination is 24 weeks. At this stage of pregnancy ma­ ternal-fetal bonding, the unexpected emotional trauma of carrying an infant with a se­ vere anomaly and the fact that pregnancy termination beyond 24 weeks is generally illegal, might enhance the psychological burden ofthe bad news about the unborn baby. This chapter deals with the present knowledge on prenatal diagnosis, particularly anomaly scanning, its psychological impact on women and specific problems related to late (threatened) pregnancy loss. Furthermore, perinatal grief and its theoretical frame­ work which provides the background for this study, are introduced. A short review is given regarding the determinants of perinatal grief, views on normal versus abnormal grief, and methodological issues in perinatal grief research. Finally, a compilation ofthe research objectives that will be addressed, is presented. 1.2 Prenatal diagnosis The tests used in prenatal diagnosis are designed to detect genetic diseases or defects in the unborn iufant. The four most important prenatal procedures are: chorionic villus sampling, amniocentesis, cordocentesis, and tertiary centre ultrasonography. A specific test in prenatal diagnosis which is still very much under scrutiny is the maternal serum alpha-fetoprotein test (MSAFP-test). Chorionic villus sampling (CVS) is used to detect genetic defects in the first tri­ mester of pregnancy (9-12 weeks). Fetal cells are extracted from chorionic villi. These are protrusions of a membrane (the chorion) that surrounds the developing unborn infant. The procednre is carried out through a thin tube via the cervix or by a needle inserted into the maternal abdomen, under ultrasound guidance. The collected cells undergo chromosomal, DNA or biochemical analysis for the detection of specific ge- 2 Chapter 1 netic diseases such as Down's syndrome. Results are available within 8-10 days. Experi­ enced centres generally quote a one per cent fetal loss rate following CVS (De Crespigny and Dredge, 1991). Amniocentesis is the most widely used technique in the second trimester of gesta­ tion (between 15-17 weeks). A needle is inserted under ultrasound guidance through the maternal abdomen into the amniotic sac that surrounds the unborn child. A small amount of amniotic fluid containing fetal cells is extracted and cultured. Cells and fluid are then analyzed for genetic abnormalities, such as Down's syndrome or neural tube defects, including anencephaly and spina bifida. Results are available after 2-3 weeks. The fetal loss rate is 0.3-0.5%. Cordocentesis entails blood sampling from the umbilical vein. The procedure is similar to that for CVS and amniocentesis. Adequate fetal blood sampling is possible from 19-20 weeks of gestation. It is often used following the detection of fetal anoma­ lies in late pregnancy, since chromosome results are available as soon as 72 hours. In ultrasonography structural disorders such as neural tube defects, central nerv­ ous system anomalies, skeletal, kidney and urinary tract disorders can be assessed. The accuracy depends on the experience and skill ofthe investigator, the type of equipment and fetal age.
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