The Perinatal Grief Scale (PGS)-Short Version-33 Item
An Introduction
The purpose of this instrument is to measure bereavement in perinatal loss.
The PGS enables practitioners to identify people who are particularly vulnerable because of their loss. Derived from a longer 104 item form (Toedter, Lasker, & Alhadeff, 1988), the 33 item PGS was published by Potvin, Lasker, and Toedter in 1989. The target audience is women and their families that have experienced the effects of pregnancy loss such as spontaneous abortion, ectopic pregnancy, fetal and neonatal death. The instrument has been used to evaluate persons soon after their loss as well as those whose losses occurred as much as 22 years prior to the research. This instrument has been utilized by researchers and health care providers who care for families experiencing perinatal loss. It consists of three subscales- “Active Grief”, “Difficulty Coping”, and “Despair”. Recommended methods of data collection are face-to-face, mailed questionnaires, or online survey.
Conceptual Basis
In 1982, Kirkley-Best and Kellner published a review of the literature with the belief that initial studies of perinatal loss
were confounded by statistical errors, inappropriate research designs and potential misinterpretation of the data collected. The authors recommended the possibility that conclusions may have been on course, however tighter controlled studies needed to be conducted to substantiate how parents were feeling with loss, having experienced stillbirth. Concern that the literature was not systematic and primarily based on psychiatric case files with married middle class couples, scientist moved towards further research in developing of a tool to measure perinatal grief and create opportunities of inquiry outside of case studies, such as open ended questions and unstructured interviews. Kennell, Slyter and Klaus (1970) had patient’s rate six criteria about their mourning of loss, including sadness, loss of appetite, inability to sleep, increased irritability, preoccupation with the lost infant and an inability to return to normal activities of life. All but preoccupation of infant were considered consistent variables to the diagnosis of depression. Through several other studies including parents reactions to critically ill babies (Benfield, Leib and Reuter, 1976), it was clear that parents might score similarly, yet come from totally different places and experiences in attaining their current status of grief. Over the years, many scientists have agreed that perinatal loss has many different components or variables in comparison to general loss. It has been observed that often the public and even loved ones will gloss over a perinatal loss, especially an early pregnancy loss when there is not an object or being to mourn. Guilt has often been a variable of inclusion with perinatal loss, leaving a woman to wonder if she did something wrong, or questioning why her body couldn’t maintain the pregnancy or deliver a healthy newborn. The diversity of variables is immeasurable and certainly not limited to any one individual and yet their impact on perinatal loss and the process of grief is significant. A parent and or family unit may experience grief at varying levels that are completely different than generalized grieving, so a review of variables and their effect on perinatal loss was examined to assist in the development of this specific tool for perinatal grief assessment.
The development of the PGS was undertaken in response to this identified gap.
Many studies mentioned and not limited by this list of references, created the opportunity to create a more precise tool for measurement of grief. A scale that would incorporate a factor structure would support measurement of different pathways an individual might encounter, as well as the evaluation of internal comparison related to findings. For development of the PGS, review of the literature on the concept of grief was undertaken with the first identified source on grief having been published in 1944 (Lindemann). The Expanded Texas Grief Inventory (Zisook, S., Devaul, R.A., & Click, M.A., Jr., 1982) was published as the only known attempt to create a systematic and comprehensive measure of general grief with 58 items utilizing a 5 point likert scale. However this tool did not have the validity or reliability of data and has not been adopted by perinatal loss researchers. Many believe that perinatal loss is a different construct requiring its own measure specific to this type of loss. With information of researchers defining the many variables of generalized grief, as well as perinatal specific grief, the PGS was developed. Twenty four items specific to perinatal loss were extracted from the Expanded Texas Inventory (Zisook et al. 1982) and the six key signs of Kennell et al. as well as the 21 dimensions of perinatal loss, reported in the field by previous researchers (e.g. Borg & Lasker, 1981), were all incorporated into the tool’s development of 104 items. Over time the PGS was shortened to 84 items and then to the current 33 item scale. Validity and reliability were maintained with each new version and have been reported in the subsequent literature. The PGS short version scale continues to be utilized widely today and maintains a concise fit based on definition and population needs. Over the past two decades bereavement care in the community and the hospital has created an increasing awareness for the many dimensions of perinatal loss. As a global society in the U.S.A., we must observe and respect cultural differences in perinatal loss through the lens of the individual, family and community.
Reliability and Validity of the PGS
The results for internal consistency reliability for the PGS and its three subscales are remarkably consistent.
This shorter version of 33 items has been tested for psychometric qualities and factor structure. In the original research in 1989, the authors studied 138 women. The total instrument had excellent internal consistency with an overall alpha of .92. The alpha of the subscales ranged from .86-.92 (Potvin, Lasker, &Toedter, 1989).
The PGS has good factorial validity.
This short form correlates .98 with the longer form. The instrument developers note that the construct validity was highly satisfactory after examining the distribution of scores within each subscale for different subgroups. Each subscale represents a qualitatively different aspect of grieving and there is a progression in the severity of subscales from Active Grief to Despair (Potvin et al., 1989).
Over the years, the PGS continued to demonstrate its reliability.
In 2001, an international comparison of studies using the PGS was published. This article examined 22 studies from 4 countries that used the PGS with a total of 2485 participants. Excellent internal consistent reliability and construct and convergent validity were demonstrated. Regardless of language, type and size of sample, or type of loss, the coefficient for the total PGS ranges from .92 to .96 after repeated uses. The average subscale coefficients are .92 for Active grief, .89 for Difficulty Coping, and .88 for Despair). When comparing different samples from different countries at different moments in time, the PGS proved to have external validity as well (Toedter, Lasker, & Janssen, 2001).
For two decades, the PGS has remained a consistent instrument.
In 2008, Barr and Cacciatore published a study of 612 respondents who completed the PGS. Participants were recruited from internet links, e-mail lists, parent support groups, and other bereaved parent organizations. The questionnaires could be completed online or downloaded and mailed. The authors reported the internal reliability coefficient (Cronbach’s α) was .94 for the entire study population.
Usage
The PGS is simple to use. The length of the survey makes it easy to complete for the user.
The survey may be completed in an office setting or in the comfort of one’s own home. This 33 item Likert- type survey can be administered either electronically, using a service such as Survey Monkey, or by the traditional “paper and pencil” method. It has successfully been translated into Swedish, Spanish, German, Chinese, French, and Thai (Toedter et al., 2001). The English version of the instrument is easily accessed, at no cost, through either the original article or an instrument sourcebook (Fischer & Corcoran, 2007).
Easily scored, items on the 5-point Likert-type scales are summed for each subscale and the total scale.
Of the three subscales, 1=active grief, 2=difficulty coping and 3=despair, each consists of 11 items with a possible range of 11-55. The total PGS score is attained by reversing all items except 11 and 33. The result is a total scale consisting of 33 items with a possible range of 33–165. Higher scores reflect more intense grief. A sum above 90 indicates possible psychiatric morbidity (Zisook, Devaul & Click, 1982).
Advantages and Disadvantages
While shorter than the original 104 item survey, this 33 item PGS proves to be as reliable and comprehensive as its predecessor.
The factor analysis design in the short version of the PGS removed measurements that were not useful, as well as provided an opportunity to measure grief as cited by the individual. The factoral design supports sorting of the items in the scale into three levels of severity allowing the researchers to identify those scoring high in the normal range of grief versus those in a severe range and potentially more debilitating with long lasting concerns. There is potential for adaptation to other types of bereavement questions/questionnaires (Potvin et al., 1989). Easy and open access to the tool on the internet makes this a cost effective and convenient instrument which can be completed at the participant’s leisure. One word of caution: there can be limited or no control over multiple submissions (Barr & Cacciatore, 2008).
The Gold Standard
The Perinatal Grief Scale has proven itself to be a valid and reliable instrument since its inception in 1989.
Although we acknowledge that both the 42 item Multidimensional Fear of Death Scale (MFODS) and the 15 item Perinatal Bereavement Scale (PBS) have demonstrated reliability and validity (Barr & Cacciatore, 2008; Neugebauer & Ritsher, 2005). Results obtained by physicians, social scientists, and nurses using the PGS are widely published across the globe. A partial list of published studies will be provided for your review.
References
Barr, P. & Cacciatore, J. (2008). Problematic emotions and maternal grief. Omega: Journal of Death & Dying,56(4),331-348.
Benfield, D.G., Leib, S.A. & Vollman, J.H.(1978). Grief response of parents to neonatal death and parent’s participation in deciding care.Pediatrics, 62, 171-177.
Borg, S. & Lasker, J. (1981). When pregnancy fails: Families coping with miscarriages, stillbirth and infant death. Boston: Beacon Press.
Fischer, J. & Corcoran, K. (2007). Measures for clinical practice and research: A sourcebook.(4th ed., Vol.1, pp. 405-406). New York, NY: Oxford University Press.
Kennell, J.H., Slyter, H. & Klaus, M.H. (1970). The mourning response of parents to the death of anNewborn infant. New England Journal of Medicine, 283, 344-349.
Kirkley-Best, E. & Kellner, K. (1982). The forgotten grief: A review of the psychology of stillbirth. American Journal of Orthopsychiatry, 52, 420-429.
Neugebauer, R. & Ritsher, J. (2005). Depression and grief following early pregnancy loss. International Journal of Childbirth Education. 20(3), 21-24.
Potvin, L., Lasker, J. N., & Toedter, L. J. (1989). Measuring grief: A short version of the Perinatal Grief Scale. Journal of Psychopathology and Behavioral Assessment, 11, 29-45.
Toedter, L. J., Lasker, J. N., & Alhadeff, J. M. (1988). The Perinatal Grief Scale: Development and initial validation. American Journal of Orthopsychiatry, 58(3), 435-449.
Toedter, L. J., Lasker, J. N., & Janssen, H. J. (2001). International comparison of studies using the Perinatal Grief Scale: A decade of research on pregnancy loss. Death Studies, 25, 205-228.
Zisook, S., Devaul, R.A., & Click, M.A., Jr. (1982). Measuring symptoms of grief and bereavement. American Journal of Psychiatry, 139, 1590-1593.
Publications for Further Reading
Adolfsson, A. & Larsson, P-G. (2006).Perinatal Grief Scale into Swedish. Scandinavian Journal of Caring Science, 20, 269-273.
Barr, P. (2006). Relation between grief and subsequent pregnancy status 13 months after perinatal bereavement. Journal of Perinatal Medicine, 34, 207-211.
Barr, P. & Cacciatore, J., (2008). Personal fear of death and grief in bereaved mothers. Death Studies, 32, 445-460.
Borg, S. & Lasker, J. N. (1988). When pregnancy fails: Families coping with miscarriage, ectopic pregnancy, stillbirth, and infant death. (rev. ed.). New York, NY: Bantam Books.
Burgoine, G., Van Kirk, S., Romm, J., Edelman, A., Jacobson, S., & Jensen, J. (2005). Comparison of perinatal grief after dilation and evacuation or labor induction in second trimester terminations for fetal anomalies. American Journal of Obstetrics & Gynecology, 192(6), 1928-1932.
Capitulo, K., Cornelio, M., & Lenz, E. (2001). Clinical methods. Translating the Short Version of the Perinatal Grief Scale: process and challenges. Applied Nursing Research, 14(3), 165-170.
Goldbah, K.R.C., Dunn, D.S., Toedter, L.J. & Lasker, J.N. (1991). The Effects of Gestational Age and Gender on Grief After Pregnancy Loss. American Journal Of Orthopsychiatry, 61(3), 461-467.
Franche, R.-L. & Bulow, C. (1999). The Impact of a Subsequent Pregnancy on Grief and Emotional Adjustment Following a Perinatal Loss. Infant Mental Health Journal, 20(2), 175-187.
Harrigan, R., Naber, M., Jensen, K., Tse, A., & Perez, D. (1993). Perinatal grief: response to the loss of an infant. Neonatal Network, 12(5), 25-31.
Hunfeld, J., Wladimiroff, J., & Passchier, J. (1997). The grief of late pregnancy loss. Patient Education & Counseling, 31(1), 57-64.
Kroth, J., Garcia, M., Hallgren, M., LeGrue, E., Ross, M., & Scalise, J. (2004). Perinatal Loss, Trauma, and Dream Reports. Psychological Reports, 94(31), 877-882.
Lasker, J.N. & Toedter, L.J. (2000). Predicting Outcomes After Pregnancy Loss: Results from Studies Using the Perinatal Grief Scale. Illness, Crisis, & Loss, 8(4), 350-372.
Lasker, J.N. & Toedter, L.J. (1991). Acute Versus Chronic Grief: The Case of Pregnancy Loss. American Journal of Orthopsychiatry, 61(4), 510-522.
Paton, F., & Wood, R. (1999). Grief in miscarriage patients and satisfaction with care in a London hospital. Journal of Reproductive & Infant Psychology, 17(3), 301.
Patterson, P.R. (2000). Living with Grief after Pregnancy Loss: Perspectives of African American Women. Dissertation Abstracts International: Section B: The Sciences and Engineering, 61(5-B), Nov, 2000, 2473
Serrano, F., & Lima, M. (2006). Recurrent miscarriage: psychological and relational consequences for couples. Psychology & Psychotherapy: Theory, Research & Practice, 79(Part 4), 585-594.
Stinson, K. M., Lasker, J. N., Lohmann, J., & Toedter, L. J. (1992). Parents’ Grief following pregnancy loss: A comparison of mothers and fathers. Family Relations, 41, 218-223.
Swanson, P. B., Pearsall-Jones, J., Hay, D. A. (2002). How mothers cope with the death of a twin or higher multiple. Twin Research, 5(3), 156-164.
Toedter, L.J., Lasker, J.N. & Janssen H.J.E.M. (2001). International Comparison of Studies Using the Perinatal Grief Scale: A Decade of Research on Pregnancy Loss. Death Studies, 25: 205-228.