international comparison of studies using the perinatal grief scale: a decade of research on...

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INTERNATIONALCOMPARISON OFSTUDIES USING THEPERINATAL GRIEFSCALE: A DECADEOF RESEARCH ONPREGNANCY LOSSLori J. Toedter, Judith N. Lasker, HettieJ. E. M. Janssena Moravian College, Bethlehem,Pennsylvania, USAb Lehigh University, Bethlehem,Pennsylvania, USAc University of Nijmegen, Nijmegen,The NetherlandsPublished online: 11 Nov 2010.

To cite this article: Lori J. Toedter, Judith N. Lasker, Hettie J. E. M.Janssen (2001) INTERNATIONAL COMPARISON OF STUDIES USING THEPERINATAL GRIEF SCALE: A DECADE OF RESEARCH ON PREGNANCY LOSS,Death Studies, 25:3, 205-228, DOI: 10.1080/07481180125971

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Death Studies, 25: 205–228, 2001

Copyright 2001 Brunner-RoutledgeÓ0748-1187/01 $12.00 1 .00

` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` `

INTERNATIONAL COMPARISON OF STUDIES USINGTHE PERINATAL GRIEF SCALE: A DECADE OF

RESEARCH ON PREGNANCY LOSS` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` ` `

LORI J. TOEDTER

Moravian College, Bethlehem, Pennsylvania, USA

JUDITH N. LASKER

Lehigh University, Bethlehem, Pennsylvania, USA

HETTIE J . E. M. JANSSEN

University of Nijmegen, Nijmegen, The Netherlands

The Perinatal Grief Scale ( PGS ) has been used in many studies of loss in preg-nancy, including miscarriag e, stillbirth, induced abortion, neonatal death, and relin-quishment for adoption. This article describes 22 studies f rom 4 countries that usedthe PGS with a total of 2485 participants. Studies that report Cronbach’s alpha fortheir own samples give evidence of very high internal consistency reliability. Evidencefor the validity of the PGS is also reviewed, such as converg ent validity seen in itsassociation with measures of mental health, social support, and marital satisfaction.The standard errors of the means f or the total scale and for the subscales revealfairly consistent scores, in spite of very di¡erent samples and types of loss ; compu-tation of means and standard deviations for the studies as a whole permits us toestablish normal score ranges. Signi�cantly higher scores were found in studies thatrecruited participants f rom support groups and self-selected populations rather thanfrom medical sources, and f rom U .S. studies compared with those in Europe.

In recent years there has been increasing attention to the e¡ects ofpregnancy loss ( spontaneous abortion, ectopic pregnancy, fetal andneonatal death ) on women and their families. Although bereaved

Received 5 November 1999; accepted 5 May 2000.

Address correspondence to Dr. Lori J. Toedter, Department of Psychology, Moravian

College, 1200 Main Street, Bethlehem, PA 18018. E-mail : edumeljt01@moravian.

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206 L . J . Toedter et al.

women have written about their own experiences as far back as the19th century ( Simonds, 1992 ), the current attention by researchersto the consequences of loss began with a few clinical reports frompsychiatrists in the 1960s ( Cain, Erickson, Fast, & Vaughan, 1964;Malmquist, Kaij, & Nilsson, 1969; Solnit & Stark, 1961 ), andseveral important small-scale studies by physicians ( primarilypediatricians ) in the 1970s ( Ben� eld, Leib, & Vollman, 1978;Helmrath & Steinitz, 1978; Kennell, Slyter, & Klaus, 1970; Lewis,1979; Lewis & Page, 1978; Rowe, Clyman, Green, Mikkelsen,Haight, & Ataide, 1978 ). In the early 1980s, a shelf full of bookswritten by bereaved parents and social scientists began to appearfor the � rst time; these were directed primarily at bereaved parentsand secondarily at professionals ( Berezin, 1982; Borg & Lasker,1981; Friedman & Gradstein, 1982; I lse & Burns, 1985; Jimenez,1982; Peppers & Knapp, 1980; Pizer & O’Brien-Palinski, 1980 ).

This tremendous burst of interest in the topic was motivated bymany changing social conditions, which became more prominentin the 1970s. This included greater parental demand for educationand control over many issues surrounding pregnancy and child-birth, a more open attitude toward dying and bereavement begunprimarily by the work of Kubler-Ross ( 1969 ), and an increasedopenness to discussing personal crises, fostered by large numbers ofself-help books, support groups, and media attention.

Not surprisingly, this increased attention to the crisis of preg-nancy loss has led many social scientists, particularly in sociologyand psychology, and health care providers, particularly in nursing,to investigate the impact on families more systematically, in greaterdetail, with larger samples, and sometimes with longitudinaldesigns. Zeanah ( 1989 ) and others (Kirkley-Best & Kellner, 1982 )decried the lack of well-designed systematic research and moreadequate outcome measures. Correcting this de� ciency has beenthe major agenda of the late 1980s and 1990s ( Zeanah, 1989 ), asbetter designed research has appeared in countries throughout theworld as well as in the United States.

Although there is a general consensus in the literature on thepotentially powerful social and psychological impact of perinatalloss, there are widely diverse � ndings on the types of variables thatbest predict grief following a loss. The disagreement amongresearchers on issues such as the importance of prior and sub-

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A Decade of Research on Pregnancy Loss 207

sequent childbirth, previous loss, age, and social class is partly aresult of widely di¡ering designs and samples as well as di¡erencesin the measures used to assess grief ( Lasker & Toedter, 1991 ).

In this article, we will describe and compare the results of 22studies carried out in the United States, in the Netherlands, inGreat Britain, and in Germany that have used a common measure,the Perinatal Grief Scale ( PGS ; Toedter, Lasker, & Alhade¡,1988 ). The PGS, developed originally in connection with the Peri-natal Loss Study at Lehigh University, is currently being used in awide variety of research projects in the United States and in manyother countries. These studies address not only the issue of peri-natal loss but also of induced abortion and placement for adoption.Until now, only one report ( Hunfeld, Wladimiro¡, Passchier,Venemavanuden, Frets, & Verhage, 1993 ) has addressed thescale’s validity and reliability in the context of a di¡erent studyfrom the one for which it was originally created.

The availability of 22 studies allows us to accomplish severalgoals : ( a ) to compare internal consistency reliability of the PGS inwidely varying samples and to obtain further indications of themeasure’s validity ; ( b ) to develop norms allowing practitioners tointerpret PGS scores that might indicate people who are especiallytroubled following the loss ; and ( c ) to compare results from di¡er-ent types of samples—men and women, early and late loss, samplesrecruited from medical practices compared with those fromsupport groups and Internet sources, interviews versus mailedquestionnaires, and studies in Europe compared with those in theUnited States. Previous studies, including our own, indicate thatgender and time of the loss di¡erentiate grief scores ( e.g., Kirkley-Best & Kellner, 1982; Goldbach, Dunn, Toedter, & Lasker, 1991;Cuisinier, Kuijpers, Hoogduin, deGrauuw, & Janssen, 1993 ) ; theother comparisons have not yet been made.

PGS

The PGS was constructed to incorporate the many di¡erentdimensions of grief mentioned in the literature. The original scaleconsisted of 104 Likert-type items whose answers vary from 1( strongly agree ) to 5 ( strongly disag ree ). The measure was constructed

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based on items used by other perinatal loss researchers, some ques-tions from the Texas Inventory of Grief ( Zisook, Devaul, & Click,1982 ), and additional items constructed to � t the dimensions ofperinatal grief we considered, based on the literature and our ownprior research (Borg & Lasker, 1988 ), to be most important.Analyses of results led to a paring down of the original 104-itemscale to a long version of 84 items (a 5 0.97 ) and a short version of33 items (a 5 0.95; Potvin, Lasker, & Toedter, 1989 ). The shortversion was used in all the analyses reported here.

The Subscales

Although the PGS was built on theoretical dimensions of grief,such as disbelief, anger, loneliness, and guilt, factor analysis of thedata collected resulted in a very di¡erent three-factor structure( Potvin et al., 1989 ). We labeled the � rst subscale Active Grief , as itincludes items regarding sadness, missing the baby, and crying forthe baby. The second subscale, Diff iculty Coping , includes items sug-gesting difficulty in dealing with normal activities and with otherpeople ; it appears to indicate withdrawal and depression. Thethird subscale, Despair, represents feelings of worthlessness andhopelessness. These three subscales consist of 11 items each in theshort version of the PGS. The means of the subscales are progres-sively smaller, and analyses have supported the idea that they rep-resent increasingly severe responses to grief ; scores on the DifficultyCoping and Despair subscales at the time of the � rst interview werethe best predictors of long-term grief as measured by the total scale( Lasker & Toedter, 1991 ). The 33 items of the short version of thePGS and scoring instructions can be found in the appendix.

Literature Search Strategy

A variety of methods was used to ensure that all published researchusing the PGS was reviewed for this article. A PsycLIT search wasconducted for keywords related to pregnancy loss and grief. SCI-

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SEARCH and SOCIAL SCISEARCH were used to identify allarticles in which one of the principal investigators ( Lori J . Toedteror Judith N. Lasker ) was cited in the references. Abstracts and, inmany cases, articles were reviewed to con� rm that the PGS wasactually used in the research reported. A WorldCat search wasused to identify doctoral dissertations using the PGS. Finally,anyone who requested the scale from either of the principal investi-gators was surveyed in 1993 and again in 1998 to ascertain thestatus of the research for which the scale was requested.

Using this procedure, we were able to identify 33 reports ofempirical studies using the PGS. This number was reduced to 22studies by removing from further analysis any study that represent-ed an additional report using data from the same sample ( n 5 8 ) oruse of the PGS in substantially altered format ( n 5 3 ). As seen inTable 1, the 22 studies cover a variety of types of losses and werecarried out in three European countries as well as throughout theUnited States. Seven of the studies ( Beutel, Deckardt, Schaudig,Franke, & Zauner, 1992; Coyle and Enright, 1997; Harrigan,Naber, Jensen, Tse, & Peres, 1993; Hunfeld, Wladimiro¡, & Pass-chier, 1997; Janssen, Cuisinier, deGraauw, & Hoogduin, 1997;Toedter et al., 1988; Zeanah, Danis, Hirshberg, & Dietz, 1995 ) arelongitudinal, incorporating at least one follow-up interview intothe design. Data from subsequent waves is not always available,and thus the grief scores reported here are from the � rst wave ofdata in each case. The one exception is the report in Figure 1 oflongitudinal data from two studies. Only one study is truly pro-spective in that women were recruited during pregnancy and fol-lowed subsequent to a loss (Cuisiner, Janssen, deGraauw, Bakker,& Hoogduin, 1996; Janssen et al., 1997 ).

Table 1 documents the variety of studies that have used thePGS. Summary data for the samples from the 22 studies are pre-sented, including total sample size, types of loss, mean and rangefor length of pregnancy, study and recruitment methods, andlength of interval between loss and assessment. A total of 2,457participants—1,803 women and 654 men—is represented in thesestudies. The studies vary in size of sample from 10 to 363, and inmeans of recruiting participants, with some researchers solicitingvolunteers in support groups, newspaper and magazine ads, and onthe Internet, whereas others recruited participants through hospi-

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FIGURE 1 Mean PGS scores from longitudinal studies.

tals and/or physician practices. The method of data collectionincluded face-to-face interviews and mailed questionnaires. Somestudies were carried out soon after the loss ( as soon as 1 to 2 days )and others included people whose losses occurred as much as 22years prior to the research, although the majority fell within the� rst year following the loss. Twelve of the 22 studies includedpeople who had experienced miscarriages, 9 included stillbirth,and 11 studied people who experienced newborn loss. Two studiesrecruited parents who had experienced a death following a multi-ple gestation pregnancy in which at least one baby had survived.One studied parents who had received a diagnosis of a severe fetalcondition and two assessed parents who had chosen to terminate apregnancy because of such a diagnosis. Finally, one study eachfocused on parents who experienced ectopic pregnancy, motherswho had relinquished babies for adoption, and men whose partnershad gone through an elective abortion. Nine of the studies werecarried out in Europe—� ve in the Netherlands, one in Germany,and three in Great Britain—whereas the remainder was conductedin di¡erent areas of the United States.

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Reliability of the PGS

Internal Consistency Reliabili ty

Table 2 presents reliability coefficients (Cronbach’s alpha ) for thePGS and its three subscales, for each of the studies that computedinternal reliability for its own sample. The results are remarkablyconsistent. Regardless of language, type and size of sample, or typeof loss, the coefficient for the total PGS score ranges from .92 to.96. Only once does a subscale coefficient fall below .80 ( .70 forDifficulty Coping in Lukas’ [1998] study of 15 men ). The averagesubscale coefficients are .92 for Active Grief, .89 for DifficultyCoping, and .88 for Despair.

Test–Retest Reliabili ty

Potvin et al. ( 1989 ) computed test–retest reliability, comparing thescores for the 112 women who participated in both the � rst inter-view and in the second interview one year later. Unlike other scalesthat attempt to measure a stable trait, it was hypothesized that thecorrelation would re� ect the decline of grief over time; it wasexpected to be signi� cant but not as high as the initial internal

TABLE 2 Internal Reliability ( Cronbach’s Alpha ) of PGS

PGS Active Di¡icultyStudy name total grief coping Despair

Toedter et al., 1988 .95 .92 .91 .86Cuisinier et al., 1993 .96 .92 .88 .91Janssen et al., 1997 .96 .92 .89 .90Hunfeld et al, 1998 .96 .92 .89 .90Beutel et al., 1992a .93 .90 .87 .87Rich, 1999 .94 .88 .90 .88Long, 1992 .94 .90 .97 .83Brodzinsky, 1992 .93 .92 .93 .90Coyle & Enright,1997 .95 .91 .94 .85Lukas, 1998 .93 .93 .70 .90Engler, 1998 .92

a The authors did their own factor analysis on the 33 Perinatal Grief Scale

(PGS) items, and therefore the subscales are not identical to those in other

studies. Their second subscale is called Working Through Guilt.

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reliability. This proved to be the case. Correlations for the threefactors and for the total scale ranged from .59 to .66, all at asigni� cance level of p , .001.

Normative Data

Table 3 provides mean PGS total scores, as well as the mean valuesfor each of the three subscales (where available ) obtained fromeither the published article or dissertation or directly from the

TABLE 3 Perinatal Grief Scale and Subscale Means

PGS Active Di¡icultyAuthors total Grief Coping Despair

Toedter et al., 1988 81.97 35.67 24.07 22.2367.91 27.67 20.62 19.62

Cuisinier et al., 1993 60.1 24.9 18.7 16.4Janssen et al., 1997 67.5 28.1 21.4 18.3Cuisinier et al., 1996 75.90 32.12 23.98 19.8

66.99 28.27 21.12 17.82Hunfeld et al., 1997 82.5 35.6 24.7 22.0Hunfeld et al., 1996 73.6 33.1 22.4 18.1

72.8 32.0 22.6 18.2Beutel et al., 1992 65.1 31.0 15.4 16.6Paton & Wood, 1997 85.78 35.76 25.73 24.29Johnson &Puddifoot, 1998 78.4 23.7 27.4 27.4Johnson &Puddifoot, 1996 83.8 27.6 27.8 28.4Zeanah et al., 1993 84.26 36.19 26.29 21.78Zeanah et al., 1995 121.55 38.83 40.70 42.02Coyle & Enright, 1997 97.73Beil, 1992 74.7 30.5 23.1 21.1Engler, 1998 102.6 42.4 32.0 28.1Lukas, 1998 88.73 36.13 28.06 24.53Long, 1992 111.35 30.42 38.82 42.11

113.12 32.62 39.12 41.38Rich, 1999 92.48 38.09 29.41 24.98

73.99 30.96 22.93 20.10Brodzinsky, 1992Sitrin, 1994 77.84 32.03 24.39 21.42Heikkinen, 1995 120.14Harrigan et al., 1993 ( comb. ) 77.11 33.22 23.21 20.68

N ote. Where available, scores are reported separately for females (the ® rst score) and

then for males.

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author of the study when necessary. Data are presented separatelyby gender wherever possible. In the case of those longitudinalstudies for which scores are available from more than one wave ofdata collection, we have used the � rst wave, usually 1–2 monthsfollowing the loss. This maximizes the number of participants andprovides some consistency across studies. The study of relin-quishment described above and in Table 1 (Brodzinsky, 1992 ) isnot included here because of the unavailability of PGS scores. Thussubsequent analyses are based on 2,243 rather than 2,457 partici-pants.

Table 4 presents the results of standard error of the mean(SEM ) calculations for the total scale. The SEM provides an indexof the consistency of PGS scores across the 21 studies included inthe analysis for normative purposes. The results of the analysis pre-sented in Table 4 suggest that, based on data from 1,589 bereavedwomen and 654 bereaved men, 95% of the time the PGS totalscore will fall between 78 and 91. Therefore, for normative pur-poses, a score above 91 can be considered to re� ect a high degree ofgrief.

TABLE 4 Perinatal Grief Scale Total : Mean Scores, Standard Error of theMean, and Upper Bound of 95% Interval, by Characteristics of Samples

M 1 2

Participants M SD SEM (SEM) t df p

All samples ( n 5 2243 ) 84.3 16.26 3.08 90.5Gender 0.48 25 n.s

Female ( n 5 1589 ) 86.0 18.36 4.60 95.2Male ( n 5 654 ) 82.7 14.33 4.77 92.2

Recruitment method 2.38 23 , .03Hospital/Dr. ( n 5 1147 ) 78.7 13.81 3.54 85.8Support/Advert. ( n 5 642 ) 93.3 16.36 5.85 105.0

Gestational age 2 0.36 20 n.s.Early ( n 5 1032 ) 81.5 18.57 6.56 94.6Late ( n 5 539 ) 84.0 14.49 4.19 92.4

Data collection 2 0.51 26 n.s.Mailed ( n 5 1538 ) 82.7 15.94 4.25 91.2Interview ( n 5 626 ) 86.0 17.73 5.12 96.2

Study location 2.96 26 , .007Europe ( n 5 1028) 75.0 8.56 2.47 80.0U.S. ( n 5 1215 ) 90.4 16.96 4.55 99.5

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TABLE 5 Descriptive Statistics for Subscales of the Perinatal Grief Scale

Scale M SD SEM M 1 2(SEM )

Scale 1 : Active grief 32.1 4.90 0.96 34.0Scale 2 : Di¡iculty coping 26.5 6.75 1.32 29.1Scale 3 : Despair 23.7 7.27 1.42 26.5

Note. Means and standard errors are based on the 19 studies from which sub-

scale data were available.

Table 5 provides descriptive statistics for the three subscales ofthe PGS, based on the 19 studies that reported mean scores separa-tely by subscale. Using the same logic as for the total scale scoredescribed above, high scores for the individual subscales are 34 forActive Grief, 30 for Difficulty Coping, and 27 for Despair.

Construct Validity of the PGS

Stability of Factor Structure

In almost all studies that report subscale scores, there is a progres-sive decline in scores from Active Grief to Difficulty Coping toDespair. This is consistent with our � nding ( Lasker & Toedter,1991 ) that the subscales represent increasingly problematicresponses to the loss, with fewer people experiencing the moredebilitating e¡ects of difficulty coping and despair. The few excep-tions include Long ( 1992; see concerns noted below ), Zeanah et al.( 1995 ), and the two studies by Johnson and Puddifoot ( 1996,1998 ). In the latter case ( both studies of men ) there is practicallyno di¡erence among subscales, whereas in the Zeanah study thedeviation from the general pattern is found only among the men. Itis not possible to know why a few studies di¡er from the majority inthis pattern of subscale scores, but it is striking that so many of thestudies are as consistent as they are.

Group Comparisons

Table 3, which presents the means for the PGS and subscales foreach of the studies for which these data are available, illustrates anumber of common patterns. In all studies but one ( Long, 1992 ),

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in which data are presented separately for men and women, thewomen’s scores are higher. Given the extraordinarily high totalPGS score for Long’s sample, and the anomaly in both sex di¡er-ences and in subscale di¡erences noted below, we suspect that it ispossible the item scoring was not reversed in the analysis as isrequired, but it was not possible to substantiate this possibility.

Table 4 contains the results of comparing study means bygender of participants, how participants were recruited, the gesta-tional age of the baby at the time of the loss, the method by whichthe data were collected, and whether the samples were from theUnited States or Europe. Only two of these variables yielded sig-ni� cant di¡erences : 1 ) the source of the sample, with parentsrecruited primarily from support groups, advertisements, and theInternet being signi� cantly higher on total grief score than parentsasked to participate by their doctor or by hospital personnel, and2 ) country of study, with United States samples showing higheraverage scores than European samples.

Convergent Evidence

In a separate paper ( Lasker & Toedter, 2000 ) we examined pre-dictors of grief in the 22 studies and found remarkable convergencein results. The most notable � ndings are indicated below.

Patterns of Grief Over TimeThe two longitudinal studies of grief ( Janssen et al., 1997;

Lasker & Toedter, 1991 ) demonstrated that grief scores, asexpected, decline over the 2 years following a loss for the totalsample of bereaved parents. ( See Figure 1. ) This e¡ect holds truefor both early and late losses. Coyle and Enright’s ( 1997 ) forgive-ness intervention study with bereaved men following a partner’sabortion demonstrated that PGS scores also decline as a result ofsuccessful treatment. This was a strong e¡ect, yielding signi� cantdi¡erences in a sample of just 10 men.

Social Support and Marital QualityConvergent evidence for the PGS is also found in all studies that

examined the role of social support in the grief response ( Beutel etal., 1992; Brodzinsky, 1992; Cuisinier et al. 1993; Engler, 1998;

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Janssen & Cuisinier, 1992; Lasker & Toedter, 1991; Zeanah et al.,1995; Rich, 1999 ). The perception of support from friends andfamily was consistently related to lower PGS scores. This was truedespite the use of widely varying means of assessing social support.Examples include a single-item measure by Cuisinier et al. ( 1993 ),correlating 2 0.23 with total PGS score, and the Nethelp measureused by Zeanah et al. that in his sample of fathers correlated2 0.31 with the total PGS score.

A strong marital relationship has also been found to be nega-tively related to the total PGS score ( Cuisinier et al., 1993; Janssen& Cuisinier, 1992; Lasker & Toedter, 1991; Zeanah et al., 1995 )with typical correlations ranging from the upper 0.20s to low 0.30s.

Mental HealthAll nine studies that included mental health as a variable

( Beutel et al., 1992; Brodzinsky, 1992; Harrigan et al., 1993;Hunfeld et al., 1997; Hunfeld et al., 1993; Toedter et al., 1988;Zeanah et al., 1995; Zeanah, Dailey, Rosenblatt, & Devereux,1993; Janssen et al., 1997 ), found poorer mental health to berelated to higher PGS scores. As an example, the prospective studyby Janssen et al. ( 1997 ) found that pre-loss neuroticism ( as mea-sured by the Dutch Personality Questionnaire ) was the mostimportant predictor of grief intensity 2 months after the loss. This� nding is consistent with that of Toedter et al. ( 1988 ) who assessedpre-loss mental health using the Symptom Checklist 90 in aretrospective pretest design. Pre-loss mental health predicted totalPGS score at 2 months post-loss, as well as at the two-year follow-up (Toedter, Lesker, & Campbell, 1990 ).

Discussion

This survey of all available reports on studies using the PGS hasproduced information on 22 such studies carried out in three lan-guages ( Dutch, German, and English ) in three European countriesand in many parts of the United States. The 1,803 women and 654men had losses including miscarriage, stillbirth, ectopic pregnancy,newborn death, diagnosis of fetal anomalies, abortion, and place-ment for adoption. The methods of study and of recruitment ofparticipants also vary considerably.

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Despite this enormous diversity, Table 2 indicates that the PGSis a highly reliable measure in terms of internal consistency. Thealpha coefficients are remarkably high across studies, types of loss,and languages.

Table 4 indicates the mean scores for the total sample and thestandard error of the mean. By adding two times the SEM to themean, we can for the � rst time indicate what would appear to bean upper bound to the normal range of scores for the total sampleand for subgroups within the studies. Table 5 demonstrates thesame for the subscales.

What does it mean to indicate that a score above 91 on the totalPGS may be reason for concern ? Simply that 97.5% of peoplestudied so far have scores that are lower than that number. Practi-tioners may � nd it helpful to attend particularly to people whohave this score or higher, as they may indeed be particularly vul-nerable because of the loss. We have not indicated a lower boundto the 95% interval, because it is not possible to know, based onresearch to date, whether a low score means that someone is func-tioning well or is potentially in more trouble because of denial.

Statistical comparisons of di¡erences in means among groupsthat we expected, based on the literature and our own research, tohave di¡erent scores indicate that the only signi� cant di¡erencesare to be found by source of recruitment and continent. Samplesconsisting of volunteers who respond to requests made on theInternet, in advertisements, or through support groups are, notsurprisingly, people for whom the loss is more troubling and moresalient in their lives. These are highly self-selected participants,compared with studies in which all, or a sampling of all, patientswho experience a loss in a particular medical site are asked to par-ticipate in a study. The di¡erence between the European and U.S.studies is confounded by di¡erences in recruitment, with manyU.S. samples having been obtained through support groups andthe Internet, whereas all European samples ( except for the pro-spective study of Janssen et al., 1997 ) were recruited throughhospitals.

Translations pose, of course, an interesting challenge in research,particularly when one wants to compare results across di¡erentcountries. Personal communications from researchers indicate thatthe PGS has been translated into French, Spanish, Chinese, and

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Thai for studies in the United States, Canada, Hong Kong, andThailand. Beutel ( 1993, personal communication ) indicated that‘‘some items were extremely difficult to translate into German.’’Researchers in Hong Kong and Thailand indicated the necessity ofchanging the scale to more closely � t their cultures. For example, aresearcher in Hong Kong reported that she changed the ratingscale from the original version, which uses a Likert format, rangingfrom strongly agree to strongly disag ree, to one which asks respondentsto indicate the frequency with which they experience the symptom,ranging from none to always. Her explanation was that the termsdisag ree and strongly disag ree are not appropriate to ‘‘the Chinesetendency to give moderate answers,’’ and that the women in herpilot study were better able to respond regarding the frequency ofthe symptoms. However, she also noted that ‘‘The initial impres-sion is that the result of the scale is quite comparable with the datagathered in the clinical interview.’’

The absence of di¡erences by gender and by early versus laterloss within the total group of participants in the reported studies isprobably a re� ection of di¡erent patterns of recruitment. Althoughwithin almost every study the women’s scores are higher ( see Gold-bach et al., 1991; Stinson, Lasker, Lohmann, & Toedter, 1992 )and people who experienced late losses have higher scores( Goldbach et al., 1991 ), across the entire group of studies there isno di¡erence in scores. This may be accounted for by the fact thatmen are much less likely to agree to participate in such studies orto attend support groups ; thus men who do participate are likelyto be more self-selected as particularly a¡ected by the loss.

Conclusion

The PGS has provided researchers in many sites in di¡erent coun-tries with a standard measure to assess grief following a variety oftypes of pregnancy loss. Since its development, it has beenrequested frequently and continues to be widely used in ongoingstudies of pregnancy loss.

The studies discussed in this article show that the PGS and itssubscales appear to have excellent internal consistency reliability as

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well as construct and convergent validity. The PGS has further-more proved to have external validity ( generalizability ), as theresults are comparable in di¡erent studies with di¡erent samples indi¡erent countries where assessments have been taken at di¡erentmoments in time.

It would be valuable to have additional studies of loss related topregnancy that come from diverse samples, including from non-European countries, and to be able to compare results from di¡er-ent cultures. It would be useful to explore further, for example,whether any of the di¡erences in scores between American andEuropean samples could be attributed to cultural di¡erences in theexpression of grief or to better support systems in countries thathave universal health systems. Social class disparities are alsogreater in the United States ; in the Lehigh study the poorerwomen, those served by hospital clinics, had signi� cantly highergrief scores ( Lasker & Toedter, 1994 ).

Studies representative of subpopulations within the UnitedStates are also lacking ; despite e¡orts by some researchers, theAmerican studies are overwhelmingly dominated by White partici-pants, many of them highly educated and middle to upper-middleclass. This speaks, once again, to the problem of recruitment inAmerican samples, which rely heavily on support groups andInternet sources. Most studies still focus on women ; those that donot suggest that fathers are experiencing signi� cant grief reactionsas well. Further studies of ectopic pregnancy, elective abortion,and other types of loss are also needed.

One must be cautious in making comparisons across studies, yetour review suggests striking commonalities among studies in thepredictors of grief ( see also Lasker & Toedter, 2000 ). The resultsare also strongly suggestive of the value of the PGS as both a clini-cal and research measure.

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Appendix

T he Perinatal Grief Scale (33-Item Short Version )

Present Thoughts and Feelings About Your LossEach of the items is a statement of thoughts and feelings that

some people have concerning a loss such as yours. There are noright or wrong responses to these statements. For each item, circlethe number that best indicated the extent to which you agree ordisagree with it at the present time. If you are not certain, use the‘‘neither’’ category. Please try to use this category only when youtruly have no opinion.

Neither

Agree

Strongly nor Strongly

Agree Agree Disagree Disagree Disagree

1. I feel depressed. 1 2 3 4 5

2. I ® nd it hard to get 1 2 3 4 5

along with certain people.

3. I feel empty inside. 1 2 3 4 5

4. I can’t keep up with my 1 2 3 4 5

normal activities.

5. I feel a need to talk 1 2 3 4 5

about the baby.

6. I am grieving for the baby. 1 2 3 4 5

7. I am frightened. 1 2 3 4 5

8. I have considered suicide 1 2 3 4 5

since the loss.

9. I take medicine for my 1 2 3 4 5

nerves.

10. I very much miss the baby. 1 2 3 4 5

11. I feel I have adjusted 1 2 3 4 5

well to the loss.

12. It is painful to recall 1 2 3 4 5

memories of the loss.

13. I get upset when I think 1 2 3 4 5

about the baby.

14. I cry when I think about 1 2 3 4 5

him/her.

15. I feel guilty when I 1 2 3 4 5

think about the baby.

16. I feel physically ill 1 2 3 4 5

when I think about the baby.

17. I feel unprotected in a 1 2 3 4 5

dangerous world since

he/she died.

18. I try to laugh, but 1 2 3 4 5

nothing seems funny anymore.

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Neither

Agree

Strongly nor Strongly

Agree Agree Disagree Disagree Disagree

19. Time passes so slowly 1 2 3 4 5

since the baby died.

20. The best part of me died 1 2 3 4 5

with the baby.

21. I have let people down 1 2 3 4 5

since the baby died.

22. I feel worthless since 1 2 3 4 5

he/she died.

23. I blame myself for the 1 2 3 4 5

baby’s death.

24. I get cross at my 1 2 3 4 5

friends and relatives

more than I should.

25. Sometimes I feel like I 1 2 3 4 5

need a professional

counselor to help me

get my life back together

again.

26. I feel as though I’m just 1 2 3 4 5

existing and not really

living since he/she died.

27. I feel so lonely since 1 2 3 4 5

he/she died.

28. I feel somewhat apart and 1 2 3 4 5

remote, even among friends.

29. It’s safer not to love. 1 2 3 4 5

30. I ® nd it di� icult to 1 2 3 4 5

make decisions since the

baby died.

31. I worry about what my 1 2 3 4 5

future will be like.

32. Being a bereaved parent 1 2 3 4 5

means being a ‘‘Second-

Class Citizen.’’

33. It feels great to be alive. 1 2 3 4 5

Scoring InstructionsThe total PGS score is arrived at by � rst reversing all of the

items except 11 and 33. By reversing the items, higher scores nowre� ect more intense grief. Then add the scores together. The resultis a total scale consisting of 33 items with a possible range of33–165.

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The three subscales consist of the sum of the scores of 11 itemseach, with a possible range of 11–55.

Subscale 1 Subscale 2 Subscale 3Active Grief Di¡iculty Coping Despair

1 2 93 4 155 8 166 *11 177 21 18

10 24 2012 25 2213 26 2314 28 2919 30 3127 *33 32

* Do not reverse.

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international comparison of studies using the perinatal grief scale: a decade of research on...

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