Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-11T09:50:10.279Z Has data issue: false hasContentIssue false

A systematic review of instruments measuring grief after perinatal loss and factors associated with grief reactions

Published online by Cambridge University Press:  01 September 2020

M.S. Setubal
Affiliation:
Obstetrics Department, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
R. Bolibio
Affiliation:
Obstetrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
R.C. Jesus
Affiliation:
Obstetrics Department, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
G.G. Benute
Affiliation:
Obstetrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
M.A. Gibelli
Affiliation:
Obstetrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
N. Bertolassi
Affiliation:
Obstetrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
T. Barbosa
Affiliation:
Obstetrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
A. Gomes
Affiliation:
Obstetrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
F. Figueiredo
Affiliation:
Obstetrics Department, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
R. Ferreira
Affiliation:
Pediatrics Department Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
R. Francisco
Affiliation:
Obstetrics Department, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
L. Stein Bernardes*
Affiliation:
Obstetrics Department, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, Brazil
*
Author for correspondence: Lisandra Stein Bernardes, Department of Obstetrics, Faculdade de Medicina, Universidade de Sao Paulo, Av. Dr. Enéas de Carvalho Aguiar, 255 – 10° andar – sala 10086, Brazil. E-mail: [email protected]

Abstract

Objective

Expectant parents who live through perinatal loss experience intense grief, which is not always acknowledged or accepted. A screening tool to detect bereaved parents’ grief reactions can guide professionals, including perinatal palliative care teams, to provide follow-up for those in need. This review's goal is to identify and synthesize the international published literature on existent instruments specifically measuring the grieving process after any perinatal loss and to identify factors that could moderate grief reactions.

Method

Systematic review (PROSPERO # CRD42018092555) with critical synthesis. PUBMED, Cochrane, and PsycINFO databases were searched in English language articles using the keywords “perinatal” AND (“grief” OR “bereavement” OR mourning) AND (“scale” OR “questionnaire” OR “measure” OR “assessment”) up to May 2018. Eligibility criteria included every study using a measure to assess perinatal grief after all kinds of perinatal losses, including validations and translations to other languages and interventions designed to alleviate grief symptoms.

Results

A total of 67 papers met inclusion criteria. Seven instruments measuring perinatal grief published between 1984 and 2002 are described. The Perinatal Grief Scale (PGS) was used in 53 of the selected studies. Of those, 39 analyzed factors associated with grief reactions. Six articles used PGS scores to evaluate pre- and post-bereavement interventions. Studies in English language only might have limited the number of articles.

Significance of results

The PGS is the most used standardized measures to assess grief after perinatal loss. All parents living through any kind of perinatal loss should be screened.

Type
Review Article
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Adolfsson, A (2011) Meta-analysis to obtain a scale of psychological reaction after perinatal loss: Focus on miscarriage. Psychology Research and Behavior Management 4, 2939.CrossRefGoogle ScholarPubMed
Adolfsson, A and Larsson, PG (2006) Translation of the short version of the Perinatal Grief Scale into Swedish. Scandinavian Journal of Caring Sciences 20(3), 269273.CrossRefGoogle ScholarPubMed
Adolfsson, A and Larsson, PG (2010) Applicability of general grief theory to Swedish women's experience after early miscarriage, with factor analysis of Bonanno's taxonomy, using the Perinatal Grief Scale. Upsala Journal of Medical Sciences 115, 201209.CrossRefGoogle ScholarPubMed
Adolfsson, A, Berterö, C and Larsson, PG (2006) Effect of a structured follow-up visit to a midwife on women with early miscarriage: A randomized study. Acta Obstetrician et Gynecologica Scandinavica 85, 330335.CrossRefGoogle ScholarPubMed
Alexandre, M, Votino, C, De Noose, L, et al. (2016) The impact of prior medical termination of pregnancy on the mother's early relationship with a subsequent infant. Journal of Maternal, Fetal, and Neonatal Medicine 29, 12381243.CrossRefGoogle ScholarPubMed
Al-Maharma, DY, Abujaradeh, H, Mahmoud, KF, et al. (2016) Maternal grieving and the perception of and attachment to children born subsequent to a perinatal loss. Infant Mental Health Journal 37, 411423.CrossRefGoogle ScholarPubMed
Barr, P (2006) Relation between grief and subsequent pregnancy status 13 months after perinatal bereavement. Journal of Perinatal Medicine 34, 207211.CrossRefGoogle ScholarPubMed
Barr, P (2012) Negative self-conscious emotion and grief: An actor-partner analysis in couples bereaved by stillbirth or neonatal death. Psychology and Psychotherapy 85, 310326.CrossRefGoogle ScholarPubMed
Barr, P and Cacciatore, J (2008) Problematic emotions and maternal grief. Omega (Westport) 56, 331348.CrossRefGoogle Scholar
Bennett, SA, Ehrenreich-May, J, Litz, BT, et al. (2012) Development and preliminary evaluation of a cognitive-behavioral intervention for perinatal grief. Cognitive and Behavioral Practice 19, 161173.CrossRefGoogle Scholar
Beutel, M, Willner, H, Volkl, K, et al. (1995) Assessment of grief after pregnancy loss: Development and initial results of the validity of the Munich Grief Scale. Psychotherapie, Psychosomatik, Medizinische Psychologie 45, 295302.Google ScholarPubMed
Bonanno, GA and Kaltman, S (2001) The varieties of grief experience. Clinical Psychology Review 21, 705734.CrossRefGoogle ScholarPubMed
Brier, N (2008) Grief following miscarriage: A comprehensive review of the literature. Journal of Women's Health (Larchmt) 17(3), 451464.CrossRefGoogle ScholarPubMed
Burgoine, GA, Van Kirk, SD, Romm, J, et al. (2005) Comparison of perinatal grief after dilation and evacuation or labor induction in second trimester terminations for fetal anomalies. American Journal of Obstetrics and Gynecology 192, 19281932.CrossRefGoogle ScholarPubMed
Cacciatore, J (2013) Psychological effects of stillbirth. Seminar in Fetal & Neonatal Medicine 18, 7682.CrossRefGoogle ScholarPubMed
Campaña, H, Monica Rittler, M, Gili, JA, et al. (2017) Association between a maternal history of miscarriages and birth defects. Birth Defect Research 109, 254261.CrossRefGoogle ScholarPubMed
Capitulo, KL, Cornelio, MA and Lenz, ER (2001) Translating the short version of the Perinatal Grief Scale: Process and challenges. Applied Nursing Research 14, 165170.CrossRefGoogle ScholarPubMed
Conway, K and Russell, G (2000) Couples’ grief and experience of support in the aftermath of miscarriage. The British Journal of Medical Psychology 73, 531545.CrossRefGoogle ScholarPubMed
Cope, H, Garrett, ME, Gregory, S, et al. (2015) Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome. Prenatal Diagnosis 35, 761768.CrossRefGoogle ScholarPubMed
Côté-Arsenault, D and Denney-Koelsch, E (2011) “My baby is a person”: Parents’ experiences with life-threatening fetal diagnosis. Journal of Palliative Medicine 14, 13021308.CrossRefGoogle ScholarPubMed
Côté-Arsenault, D and Denney-Loelsch, E (2016) “Have no regrets”: Parents’ experiences and developmental task in pregnancy with lethal fetal diagnosis. Social Sciences and Medicine 154, 100109.CrossRefGoogle ScholarPubMed
Cowchock, FS, Lasker, JN, Toedter, LJ, et al. (2010) Religious beliefs affect grieving after pregnancy loss. Journal of Religion and Health 49, 485497.CrossRefGoogle ScholarPubMed
Cowchock, FS, Ellestad, SE, Meador, KG, et al. (2011) Religiosity is an important part of coping with grief in pregnancy after a traumatic second trimester loss. Journal of Religion & Health 50, 901910.CrossRefGoogle ScholarPubMed
Cuisiner, MC, Kiupers, JC, Hoogdiun, CA, et al. (1993) Miscarriage and stillbirth: Time since the loss, grief intensity and satisfaction with care. European Journal of Obstetrics & Gynecology and Reproductive Biology 52, 163.CrossRefGoogle Scholar
Cuisinier, M, Janssen, H, de Graauw, C, et al. (1996) Pregnancy following miscarriage: Course of grief and some determining factors. Journal of Psychosomatic Obstetrics and Gyneacology 17, 168174.CrossRefGoogle ScholarPubMed
Curley, M and Johnston, C (2013) The characteristics and severity of psychological distress after abortion among university students. The Journal of Behavioral Health Services & Research 40, 279293.CrossRefGoogle ScholarPubMed
Davies, V, Gledhill, J, McFadyen, A, et al. (2005) Psychological outcome in women undergoing termination of pregnancy for ultrasound-detected fetal anomaly in the first and second trimesters: A pilot study. Ultrasound in Obstetrics & Gynecology 25, 389392.CrossRefGoogle ScholarPubMed
Denney-Koelsch, E, Perry Black, B, Côté-Arsenault, D, et al. (2016) A survey of perinatal palliative care programs in the United States: Structure, processes, and outcomes. Journal of Palliative Medicine 19, 10801086.CrossRefGoogle ScholarPubMed
Druguet, M, Nuño, L, Rodó, C, et al. (2018) Emotional effect of the loss of one or both fetuses in a monochorionic twin pregnancy. Journal of Obstetric, Gynecologic, and Neonatal Nursing 47, 137145.CrossRefGoogle ScholarPubMed
Farrales, L, Cacciatore, J, Jonas-Simpson, C, et al. (2020) What bereaved parents want health care providers to know when their babies are stillborn: A community-based participatory study. BMC Psychology 8, 18.CrossRefGoogle ScholarPubMed
Gentile, J (2004) Pathologic grief at the hospital physician psychiatry board review manual. Psychiatry 8(Part 1), 311.Google Scholar
Gold, KJ, Leon, I, Boggs, M, et al. (2016) Depression and posttraumatic stress symptoms after perinatal loss in a population-based sample. Journal of Women's Health 25, 3.CrossRefGoogle Scholar
Gravensteen, IK, Helgadottir, LB, Jacobsen, EM, et al. (2012) Long-term impact of intrauterine fetal death on quality of life and depression: A case-control study. BMC Pregnancy and Childbirth 12, 43.CrossRefGoogle ScholarPubMed
Harrigan, R, Naber, MM, Jensen, KA, et al. (1993) Perinatal grief responses to the loss of and infant. Neonatal Network 12, 2531.Google Scholar
Hunfeld, JA, Wladimiroff, JW, Passchier, J, et al. (1993) Reliability and validity of the Perinatal Grief Scale for women who experienced late pregnancy loss. The British Journal of Medical Psychology 66, 295298.CrossRefGoogle ScholarPubMed
Hunfeld, JA, Wladimiroff, JW and Passchier, J (1994) Pregnancy termination, perceived control, and perinatal grief. Psychological Reports 74, 217218.CrossRefGoogle ScholarPubMed
Hunfeld, JA, Mourik, MM, Passchier, J, et al. (1996) Do couples grieve differently following infant loss? Psychological Reports 79, 407410.CrossRefGoogle ScholarPubMed
Hunfeld, JA, Wladimiroff, JW and Passchier, J (1997) The grief of late pregnancy loss. Patient Education and Counseling 31, 5764.CrossRefGoogle ScholarPubMed
Hunfeld, JA, Tempels, A, Passchier, J, et al. (1999) Brief report: Parental burden and grief one year after the birth of a child with a congenital anomaly. Journal of Pediatric Psychology 24, 515520.CrossRefGoogle ScholarPubMed
Hutti, MH, DePacheco, M and Smith, M (1998) A study of miscarriage: Development and validation of the perinatal grief intensity scale. Journal of Obstetric, Gynecologic, and Neonatal Nursing 27, 547555.CrossRefGoogle ScholarPubMed
Hutti, MH, Armstrong, DS and Myers, J (2013) Evaluation of the perinatal grief intensity scale in the subsequent pregnancy after perinatal loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing 42, 697706.CrossRefGoogle ScholarPubMed
Hutti, MH, Armstrong, DS, Myers, JA, et al. (2015) Grief intensity, psychological well-being, and the intimate partner relationship in the subsequent pregnancy after a perinatal loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing 44, 4250.CrossRefGoogle ScholarPubMed
Hutti, MH, Myers, J, Hall, LA, et al. (2017) Predicting grief intensity after recent perinatal loss. Journal of Psychosomatic Research 101, 128134.CrossRefGoogle ScholarPubMed
Hutti, MH, Myers, JA, Hall, LA, et al. (2018). Predicting need for follow-up due to severe anxiety and depression symptoms after perinatal loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing 47, 125136.CrossRefGoogle ScholarPubMed
Jansen, HJ, Cuisinier, MC, de Graauw, KP, et al. (1997) A prospective study of risk factors predicting grief intensity following pregnancy loss. Archives of General Psychiatry 54, 5661.CrossRefGoogle Scholar
Johnson, OP and Langford, RW (2015) A randomized trial of a bereavement intervention for pregnancy loss. Journal of Obstetrics, Gynecologic, and Neonatal Nursing 44, 492499.CrossRefGoogle ScholarPubMed
Johnson, MP and Puddifoot, JE (1996) The grief response in the partners of women who miscarry. The British Journal of Medical Psychology 69(Pt 4), 313327.CrossRefGoogle ScholarPubMed
Kennel, J, Slyter, H and Klaus, M (1970) The mourning response of parents to the death of a newborn infant. New England Journal of Medicine 283, 344349.CrossRefGoogle Scholar
Kersting, A and Wagner, B (2012) Complicated grief after perinatal loss. Dialogues in Clinical Neuroscience 14, 187189.CrossRefGoogle ScholarPubMed
Kersting, A, Kroker, K, Steinhard, J, et al. (2007) Complicated grief after traumatic loss: A 14-month follow up study. European Archives of Psychiatry and Clinical Neuroscience 257, 437443.CrossRefGoogle ScholarPubMed
Koch, C, Santos, C and Santos, MR (2012) Study of the measurement properties of the Portuguese version of the Well-Being Questionnaire12 (W-BQ12) in women with pregnancy loss. Revista Latino Americana de Enfermagem 20, 567574.CrossRefGoogle ScholarPubMed
Kroth, J, Garcia, M, Hallgren, M, et al. (2004) Perinatal loss, trauma, and dream reports. Psychological Reports 94(3 Pt 1), 877882.CrossRefGoogle ScholarPubMed
Kulathilaka, S, Hanwella, R and de Silva, VA (2016) Depressive disorder and grief following spontaneous abortion. BMC Psychiatry 16, 100.CrossRefGoogle ScholarPubMed
Lafarge, C, Mitchell, K and Fox, P (2017) Posttraumatic growth following pregnancy termination for fetal abnormality: The predictive role of coping strategies and perinatal grief. Anxiety, Stress, and Coping 30, 536550.CrossRefGoogle ScholarPubMed
Lai, BP, Chung, TK, Lee, DT, et al. (2013) Measuring grief following miscarriage: Psychometric properties of the Chinese version of the Perinatal Grief Scale. Assessment 20, 123129.CrossRefGoogle ScholarPubMed
LaRoche, C, Lalinec-Michaud, M, Engelsmann, F, et al. (1982) Grief Reactions to perinatal death: An exploratory study. Psychosomatics 23(5), 510511, 514, 516–518.CrossRefGoogle Scholar
Lasker, JN and Toedter, LJ (1991) Acute versus chronic grief: The case of pregnancy loss. The American Journal of Orthopsychiatry 61(4), 510522.CrossRefGoogle ScholarPubMed
Lewis, E (1976) The management of stillbirth, coping with an unreality. Lancet 2, 619620.CrossRefGoogle ScholarPubMed
Lewis, E and Page, A (1978) Failure to mourn a stillbirth: An overlooked catastrophe. British Journal of Medical Psychology 51, 237241.CrossRefGoogle ScholarPubMed
Lin, SX and Lasker, JN (1996) Patterns of grief reaction after pregnancy loss. The American Journal of Orthopsychiatry 66, 262271.CrossRefGoogle ScholarPubMed
Lorenzen, J and Holzgreve, W (1995) Helping parents to grieve after second trimester termination of pregnancy for fetopathic reasons. Fetal Diagnosis and Therapy 10, 147156.CrossRefGoogle ScholarPubMed
Maniatelli, E, Zervas, Y, Halvatsiotis, P, et al. (2018) Translation and validation of the Perinatal Grief Scale in a sample of Greek women with perinatal loss during the 1st and 2nd trimester of pregnancy. The Journal of Maternal-Fetal & Neonatal Medicine 31, 4752.CrossRefGoogle Scholar
Moher, D, Liberati, A, Tetzlaff, J, et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine 6(7), e1000097.CrossRefGoogle ScholarPubMed
Paris, GF, Montigni, F and Pelloso, SM (2016) Factors associated with the grief after stillbirth: A comparative study between Brazilian and Canadian women. Revista da Escola de Enfermagem da USP 50, 546553.CrossRefGoogle ScholarPubMed
Potvin, L, Lasker, J and Toedter, L (1989) Measuring grief: A short version of the perinatal grief scale. Journal of Psychopathology and Behavioral Assessment 11, 2945.CrossRefGoogle Scholar
Prigerson, H, Horowitz, M, Jacobs, S, et al. (2009) Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Medicine 6(8), e1000121.CrossRefGoogle ScholarPubMed
Puddifoot, JE and Johnson, MP (1998) Miscarriage: Is vividness of visual imagery a factor in the grief reaction of the partner? British Journal of Health Psychology 3, 137.Google Scholar
Puddifoot, JE and Johnson, MP (1999) Active grief, despair, and difficulty coping: Some measured characteristics of male response following their partner's miscarriage. Journal of Reproductive and Infant Psychology 17, 89.CrossRefGoogle Scholar
Purandare, N, Ryan, G, Ciprike, V, et al. (2012) Grieving after early pregnancy loss: A common reality. Irish Medical Journal 105, 326328.Google ScholarPubMed
Ridaura, I, Penelo, E and Raich, RM (2017) Depressive symptomatology and grief in Spanish women who have suffered a perinatal loss. Psychothema 29, 4348.Google ScholarPubMed
Ritsher, JB and Neugebauer, R (2002) Perinatal Bereavement Grief Scale: Distinguishing grief from depression following miscarriage. Assessment 9, 3140.CrossRefGoogle ScholarPubMed
Roberts, L and Montgomery, S (2016) Mindfulness-based intervention for perinatal grief education and reduction among poor women in Chhattisgarh, India: A pilot study. Interdisciplinary Journal of Best Practices in Global Development 2, 1.Google ScholarPubMed
Rocha, J, Nunes, C, Leonardo, A, et al. (2018) Women generating narratives after an unwanted prenatal diagnosis result: Randomized controlled trial. Archives of Women's Mental Health 21(4), 453459.CrossRefGoogle ScholarPubMed
Scheidt, CE, Hasenburg, A, Kunze, M, et al. (2012) Are individual differences of attachment predicting bereavement outcome after perinatal loss? A prospective cohort study. Journal of Psychosomatic Research 73, 375382.CrossRefGoogle ScholarPubMed
Serrano, F and Lima, ML (2006) Recurrent miscarriage: Psychological and relational consequences for couples. Psychology and Psychotherapy 79(Pt 4), 585594.CrossRefGoogle ScholarPubMed
Setubal, MS, Bolbio, R, Francisco, R, et al. (2018) Factors Associated with Complicated Grief: A Systematic Review. PROSPERO: International prospective register of systematic reviews (CRD42018092555). Available at: http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42018092555.Google Scholar
Shear, MK (2012) Grief and mourning gone awry: Pathway and course of complicated grief. Dialogues in Clinical Neuroscience 14(2), 119128.CrossRefGoogle ScholarPubMed
Swanson, PB, Kane, RT, Pearsall-Jones, JG, et al. (2009) How couples cope with the death of a twin or higher order multiple. Twin Research and Human Genetics 12(4), 392402.CrossRefGoogle ScholarPubMed
Theut, SK, Pedersen, FA, Zaslow, MJ, et al. (1989) Perinatal loss and parental bereavement. American Journal of Psychiatry 146(5), 635639.Google ScholarPubMed
Theut, SK, Zaslow, MJ, Rabinovich, BA, et al. (1990) Resolution of parental bereavement after a perinatal loss. Journal of the American Academy of Child and Adolescent Psychiatry 29(4), 521525.CrossRefGoogle ScholarPubMed
Toedter, LJ, Lasker, JN and Alhadeff, JM (1988) The Perinatal Grief Scale: Development and initial validation. American Journal of Orthopsychiatry 58(3), 435449.CrossRefGoogle ScholarPubMed
Toedter, LJ, Lasker, JN and Jansen, HJ (2001) International comparison of studies using the perinatal grief scale: A decade of research on pregnancy loss. Death Studies 25(3), 205228.CrossRefGoogle ScholarPubMed
Uren, TH and Wastell, CA (2002) Attachment and meaning-making in perinatal bereavement. Death Studies 26(4), 279308.CrossRefGoogle ScholarPubMed
Van, P (2010) Factors related to dimensions of grief intensity among African-American women after pregnancy loss. Journal of National Black Nurses Association 21(2), 18.Google ScholarPubMed
Van Veen-Doornenbal, J, Derks, J, Van Leeuwen, E, et al. (2017) Perinatal mortality: Mourning three-four years after the loss and the need for counseling. Conference: International Stillbirth Alliance Conference, Ireland. BMC Pregnancy and Childbirth 17(Suppl. 1), 147.Google Scholar
World Health Organization | Congenital anomalies WHO (2016) http://www.who.int/mediacentre/factsheets/fs370/en/ (accessed 29 May 2020).Google Scholar
Yan, E, Tang, CS and Chung, T (2010) Validation of the Perinatal Grief Scale for use in Chinese women who have experienced recent reproductive loss. Death Studies 34(2), 151171.CrossRefGoogle ScholarPubMed
Zeanah, CH, Dailey, JV, Rosenblatt, MJ, et al. (1993) Do women grieve after terminating pregnancies because of fetal anomalies? A controlled investigation. Obstetrics & Gynecology 82(2), 270275.Google ScholarPubMed
Supplementary material: File

Setubal et al. supplementary material

Table S2

Download Setubal et al. supplementary material(File)
File 63.8 KB
Supplementary material: File

Setubal et al. supplementary material

Table S1

Download Setubal et al. supplementary material(File)
File 107.2 KB