Abstract
Children who experience the traumatic (i.e., violent and/or unexpected) death of a loved one are at risk for a range of adverse developmental and mental health problems, including pathological processes of grief. Over the last decades, conceptualizations of maladaptive grief have varied, resulting in a range of assessment tools and no “gold standard” measure to assess symptoms of prolonged grief in children. The current paper is a systematic review of studies that measured grief in children who experienced traumatic loss in order to determine the measures currently used in the literature with children who experience traumatic loss. Searches were conducted according to the preferred reporting items for systematic reviews and meta-analyses in PUBMED, PsycINFO, and OVID and through hand searches of relevant reference lists. Two authors reviewed each study yielded by searches and conducted data extraction on included studies. Studies were included if they were peer-reviewed, included a measure of grief, and consisted of samples of children (age 18 and younger) whereby at least a portion experienced traumatic loss. Thirty-nine studies met inclusion criteria, from which 17 measures were identified. The most commonly used measure was the Inventory of Complicated Grief (n = 10 studies) followed by the Extended Grief Inventory (n = 6). Most studies used different measures and variations of the same measures to assess similar constructs. All but one measure relied on child self-report. More standardization of measurement across studies is needed, along with parent and/or teacher reported measures.
The death of a loved one is among the most stressful life events for children and adolescents (herein those ages 0–18 years old are referred to as children; Boelen et al., 2018). Traumatic death is the most common type of loss among children aged 12 to 18 years (Layne et al., 2017). Due to tremendous loss from the COVID-19 pandemic, scholars warn of a second pandemic of complicated grief among children (Weinstock et al., 2021). Children experiencing the loss of a loved one due to traumatic circumstances (e.g., sudden, unexpected, and/or violent death) are at increased risk for a myriad of adverse developmental and mental health outcomes (Kaplow et al., 2010; Melhem et al., 2011). Various terms describe the psychological processes children may experience after a loss. Bereavement and grief, often used interchangeably, describe the natural process of adapting to loss, whereas complicated grief, childhood traumatic grief, and complex bereavement describe maladaptive reactions to loss (e.g., Mannarino & Cohen, 2011). Several grief-related disorders, including persistent complex bereavement disorder (PCBD) and complicated grief (CG), were proposed in prior iterations of the Diagnostic and Statistical Manual of Mental Disorders (DSM). Recently, prolonged grief disorder (PGD) was included as a disorder in the DSM, Fifth Edition, Text-Revision (DSM-5-TR; American Psychiatric Association, 2022; Boelen et al., 2020). Although each disorder differs somewhat, core overlapping features include persistent emotional distress (e.g., separation distress) that exacerbates over time and interferes with daily functioning following the death of a loved one (Dyregrov & Dyregrov, 2013).
Research in the past decade has advanced our understanding of grief phenomenology in children. For most children exposed to traumatic loss, grief reactions abate over time. However, a subset has been found to continue experiencing distressing and impairing symptoms and may meet criteria for one of the proposed maladaptive grief diagnoses (Boelen et al., 2018; Melhem et al., 2011). Increased research has introduced various tools to assess maladaptive grief in children. Since most were adapted from adult measures, we lack clarity on whether these tools fully capture the developmental impact of childhood traumatic loss (Unterhitzenberger & Rosner, 2016). Grief reactions vary across the lifespan, as loss sequelae can differ based on age and development (Kaplow et al., 2014). Considering their unique psychosocial contexts, child and adult responses to traumatic death may qualitatively differ. Children are susceptible to separation distress, behavioral regression, play imitating loss, and difficulty understanding death and its specific circumstances, among other concerns (Alvis et al., 2022). Furthermore, “high prevalence rates of deaths by accident, suicide, and homicide, coupled with increased autonomy, expanding social networks, increased sensation-seeking, and immature self-regulation, place adolescents at significant risk for traumatic bereavement” (Layne et al., 2017, p. 280). Thus, scholars advocate for developmentally informed tools to assess grief. Despite this call, no systematic review has synthesized the literature to identify measures to assess grief in children exposed to traumatic loss.
Due to varying conceptualizations of maladaptive grief, there is no consensus on a “gold standard” measure of CG in children. Although measures of related constructs, such as posttraumatic stress have been studied (e.g., UCLA PTSD Reaction Index; Pynoos et al., 1998), data suggests the two reactions are clinically distinct. Studies find different responses to trauma-focused versus grief-focused interventions whereby grief therapies were associated with greater grief symptoms reduction compared to traumatic stress reduction (e.g., Cohen et al., 2006; Grassetti et al., 2015). Thus, although the two constructs overlap, there is a clear need to study instruments unique to the assessment of grief.
Identifying measures specifically for children experiencing traumatic (sudden, unexpected, and/or violent) loss is important. Some studies suggest traumatic loss is linked to more complicated and severe psychopathology in children (e.g., Kaltman & Bonanno, 2003) or different symptom profiles (Kokou-Kpolou et al., 2020), whereas others do not (Kaplow et al., 2014; Layne et al., 2017). Mixed findings may be due to methodological limitations (e.g., not assessing for traumatogenic aspects of anticipated death such as witnessing disturbing medical procedures or watching loved one’s progressive deterioration; Kaplow et al., 2014), highlighting that grief research among children is in its infancy, and more research is needed.
To enhance the development, implementation, and evaluation of supports for children exposed to traumatic loss, it is critical that researchers and practitioners have psychometrically valid tools to identify children who may benefit from targeted intervention. A clear understanding of available assessment tools for children is necessary. The current study is a systematic review of measures of grief used in samples of children who have experienced traumatic loss.
Methods
A systematic review was conducted according to the preferred reporting items for systematic reviews and meta-analyses (PRISMA; Moher et al., 2009). Searches were performed in PUBMED, PsycINFO, and OVID for peer-reviewed work published in English between January 1998 and March 2021. The time frame was limited because we aimed to identify current measures used to assess grief in children. Keywords were used for assessment (i.e., assessment tool, measurement tool, measurement scale, psychometrics, instrument, questionnaire, self-report, structured interview), grief (i.e., grief, complicated grief, prolonged grief, complex grief, traumatic grief. bereavement, complicated grief, complex bereavement), and children (child, children, youth, adolescent). Reference lists from relevant papers were also reviewed. Studies were included if: a measure of grief was used; the sample or a subsample was exclusively composed of children (18 years or younger); and a portion of sample experienced the death of someone close to them (e.g., parent, grandparent) due to traumatic circumstances. Due to the limited literature on childhood traumatic grief, inclusion criteria were not restricted to only studies where the entire sample experienced traumatic loss. Articles were screened for inclusion criteria by two authors. The gray literature was not searched because the purpose of this paper was to review scholarly research that used different measures of grief among children to guide future researchers on appropriate measures to select for scholarly work. When there were disagreements (which rarely occurred), a third author was consulted.
Two independent reviewers extracted data from each included study on the following: sample size and demographic characteristics; time since death; cause of death; whether the measure was used to evaluate treatment outcomes; and for measures administered multiple times (e.g., in longitudinal studies, across different cohort waves, in treatment research), the time intervals at which the measure was administered. Psychometric data on measures were extracted from included papers where possible. If psychometric or descriptive data on the measures was not available from included studies, the authors extracted this data from the measures’ development paper or when specified from other studies not included for review. Authors reviewed each other’s work for completeness and accuracy.
Results
Study Characteristics
The search identified 2075 studies published between 1998 and 2021, of which 39 met inclusion criteria (See Supplemental Figure 1. PRISMA flow diagram). Most studies included mixed samples of children exposed to both expected (e.g., long-term illness) and traumatic loss. Only 11 studies were of samples exclusively exposed to traumatic loss. Sample sizes ranged from 8 (Daigle & Labelle, 2012) to 400 (Kaplan et al., 2020). Studies were conducted in the United States (n = 24), the Netherlands (n = 5), Korea (n = 1), Belgium (n = 2), Canada (n = 2), Norway (n = 1), Iran (n = 1), Finland (n = 1), South Africa (n = 2), and Rwanda (n = 2). Study designs were longitudinal (n = 8), cross-sectional (n = 22), uncontrolled trials (n = 7), and randomized controlled trials (n = 3). Seven studies focused on psychometric validation of measures and constructs related to grief.
Measures
Across the 39 studies, 17 unique measures of maladaptive grief were identified (see Table 1). Measures are presented in three sections: (1) pathological grief symptoms, (2) grief-related constructs and sequelae, and (3) developed for certain causes of death. Of note, several measures have adapted versions used within the studies and these adaptations are also described below.
Overview of Instruments Assessing Grief in the Context of Traumatic Loss.
Note. NR = not reported; PCBD = persistent complex bereavement disorder; PGD = prolonged grief disorder; Self = self-report; CARED = Characteristics and responses upon exposure to death.
Measures of Pathological Grief Symptoms
Inventory of Complicated Grief
Ten studies used versions of the Inventory of Complicated Grief (ICG), a measure developed to assess CG in adults (Prigerson et al., 1995). Eight studies (Kaplow et al., 2013; Kaplow et al., 2014; Melhem et al., 2007; Melhem et al., 2011; Melhem et al., 2013; Salloum et al., 2019; Thurman et al., 2017; Thurman et al., 2018) used the ICG-Revised for Children (ICG-RC; Melhem et al., 2007). Three came from Melhem et al.’s (2007, 2011, 2013) 5-year longitudinal study of the impact of parental death on family members. They adapted the original ICG for adults (Prigerson et al., 1995) by modifying the wording to be easier for children to understand and pilot tested the version on eight children bereaved by parental suicide. After examining internal item consistency, three items were dropped due to low item-total correlation. Melhem et al. reported a Cronbach’s alpha of .95 for the resulting 28-item tool. They used a Likert scale to indicate frequency of grief reactions (1 = Almost never [less than once a month], 2 = Rarely [monthly], 3 = Sometimes [weekly], 4 = Often [daily], 5 = Always [several times a day]). Overall scores range from 28 to 140 with higher scores reflecting greater frequency of grief reactions. Sample items include “I find it difficult to love other people since s/he died” and “I cannot believe that s/he died.” The ICG-RC has been administered as an interview and self-report tool. Kaplow et al. (2014; 2013) used Melhem et al.’s ICG-RC as a child self-report measure but stated their version had 36 items. Thurman et al. (2017, 2018) used Melhem et al.’s (2013) six-item ICG-RC version that they translated into Sesotho, the Southern Bantu language, for use in South Africa. Thurman et al. (2017, 2018) reported an alpha of .90 at baseline in their trial of a bereavement support group using a cut-off score of ≥14 for CG.
Using the baseline assessments from their longitudinal study, Melhem et al. (2007) examined the factor structure, internal consistency, and convergent and discriminant validity of the ICG-RC. They found high internal consistency and that total scores correlated highly with each of the three factors they identified (the factors were not named in their study). Regarding convergent and divergent validity, Melhem et al. (2007) reported that higher scores on the ICG-RC were significantly correlated with both self- and clinician-rated functional impairment scores and measures of depression, hopelessness, suicidal ideation, posttraumatic stress disorder (PTSD), and anxiety. After controlling for depression, PTSD, and anxiety, ICG-CR scores continued to significantly positively correlate with clinician-rated measures of impairment, suggesting the measure assesses a construct clinically unique from these disorders.
Cha et al. (2018) used the Korean ICG version consisting of 19 items and measured on a 5-point Likert scale. Although not included in this study for review (unclear if sample consisted of children exposed to traumatic death), Han et al. (2016) examined the psychometric properties of the Korean version of the ICG among adolescents (11–19 years old) and reported high internal consistency (α = .87), adequate test–retest reliability (r = .75, p < .001) over a 2-week period, and concurrent validity with a measure of child depression (r = .75, p < .001).
Dillen et al. (2009) used the Inventory of Complicated Grief-Youngsters (ICG-Y; Spuij, et al., 2005) adapted from the Dutch ICG-R adult version (Boelen et al., 2001; Boelen et al., 2003). The ICG-Y consists of 32-items that map onto the proposed diagnostic criteria for CG disorder and other maladaptive bereavement responses. Respondents self-report the frequency of experiencing each symptom in the past month using a 3-point Likert-scale ranging from 1 (almost never) to 3 (often). Dillen et al. (2009) examined the psychometrics of the ICG-Y and reported excellent internal consistency (α = .95) and good concurrent validity as indicated by moderate correlations with measures of anxiety and depression.
Extended Grief Inventory (Layne et al., 2001)
Extended Grief Inventory (EGI) is a revised version of the Grief Screening Scale (Layne et al., 1998). The full EGI was used in four studies (Boelen et al., 2017; Brown et al., 2008; McClatchey et al., 2009; McClatchey et al., 2014; Spuij, Prinzie et al., 2012) and two studies used only EGI subscales but not the full measure (Brown & Goodman, 2005; Cohen et al., 2006). An additional study used six items from the original Grief Screening Scale (Ortiz et al., 2013). The EGI is a 28-item child self-report tool measuring frequency of traumatic grief reactions over the past 30 days. Responses are rated on a 5-point Likert scale from 0 (almost never, less than once per month) to 4 (always, several times per day). The tool assesses both normal grieving tasks (e.g., “I feel that, even though the person is gone, he/she is still an important part of my life”) and childhood traumatic grief (e.g., “Unpleasant thoughts about how the person died get in the way of enjoying good memories of him/her”), a construct considered to be a combination of traumatic stress and grief (Layne et al., 2001).
The EGI’s factor structure has been examined. EGI developers (Layne et al., 2001) identified three scales, two on maladaptive grief: Positive Connection (5 items), Existentially Complicated Grief Reactions (8 items), and Traumatic Intrusion or Avoidance (11 items). Three items on their 28-item scale did not load on any factor. The scales’ internal consistency ranged from 0.70 and 0.90. In contrast, Brown et al.’s (2008) factor analysis identified three factors in the EGI, with only one mapping onto maladaptive grief: Traumatic Grief (23 items), Ongoing Presence (2 items), and Positive Memory (3 items). The Traumatic Grief scale assesses impact of traumatic stress on children’s ability to tolerate memories of the deceased person. The Ongoing Presence scale measures the presence of the deceased (e.g., “I think I see him/her or feel his/her presence”). The Positive Memory scale consists of items such as “I have pleasant or comforting dreams about the person who died.” To elucidate whether there were two constructs related to maladaptive grief, McClatchey et al. (2014) used a more heterogenous sample than the previous studies and found two constructs in addition to “normal” grief on the EGI. These constructs were labeled CG (items map onto Layne et al.’s [2001] Existentially Complicated Grief Reactions) and Traumatic Grief (items load onto Layne et al.’s Traumatic Intrusion or Avoidance items). According to McClatchey et al. (2014), the Complicated Grief scale items (α = .82) refer to dependency or existential issues following the loss and the Traumatic Grief scale items (α = .86) refer to PTSD symptoms that interfere with the grieving process.
Regarding psychometrics, the overall EGI scale demonstrated strong internal consistency (α = .93). In included studies using Brown et al.’s (2008) factor structure of the EGI, the Traumatic Grief subscale yielded strong internal consistency (Cronbach’s αs ranged from .84 to .94). Brown et al. (2005) reported moderate internal consistency for the Ongoing Presence (α = .62) and Positive Memory scales (α = .73). The EGI has been found to have adequate to good convergent validity with PTSD symptoms, depressive symptoms, loss and trauma reminders, and somatic symptoms (rs ranged between .3 and .6; Layne et al., 2001). Regarding maladaptive grief scales, Brown et al. (2008) found the Traumatic Grief scale was highly correlated with measures of PTSD (r = 0.78, p < .01) and depression (r = 0.69, p < .01), and moderately correlated with measures of anger (r = .24, p < .05).
Inventory of Prolonged Grief (Adolescent, Child)
The Inventory of Prolonged Grief for Adolescent (IPG-A; for ages 13–18 years) and inventory of prolonged grief for children (IPG-C) (for ages 8–12 years) were reported in four included papers (Boelen & Spuij, 2013; Boelen et al., 2017; Spuij, Prinzie, et al., 2012; Spuij, Reitz, et al., 2012). Another study included only the IPG-C and used this with both children and adolescents (Spuij et al., 2017). The IPG-C and IPG-A are 30-item self-report scales adapted from the IPG for adults (Prigerson & Jacobs, 2001) to measure PGD (Spuij, Prinzie, et al., 2012). Respondents rate the frequency they experience each symptom (e.g., “I yearn for him/her and want to be with him/her”; “Memories of him/her are upsetting”) on a 3-point Likert scale (1 = almost never; 2 = sometimes; 3 = always). Items are similar between child and adolescent versions except for minor wording differences. Both tools were originally developed in Dutch but have been translated to English. Spuij et al. found both to consist of a single factor (Spuij, Reitz, et al., 2012) and have adequate temporal stability (test–retest reliabilities at a 4–6 week interval were r = .88 for IPG-C and .72 for IPG-A; Spuij, Prinzie, et al., 2012). Cronbach’s alphas were reported as up to .92 (Boelen & Spuij, 2013) and .94 (Spuij, Reitz, et al., 2012) for the IPG-C and IPG-A, respectively. The IPG-C and IPG-A are positively correlated with measures of depression and PTSD (Boelen & Spuij, 2013; Spuij, Prinzie, et al., 2012; Spuij, Reitz, et al., 2012).
PCBD checklist
The PCBD checklist (Kaplow et al., 2018; Layne et al., 2014), used in four included studies (Dodd et al., 2020; Hill et al., 2019; Hill, Oosterhoff, et al., 2019; Kaplow et al., 2018), is a 39-item self-report measure of grief in children to evaluate symptoms of the PCBD DSM-5 proposed diagnosis. Respondents are asked to indicate the frequency they experience each symptom (e.g., “I feel all alone since ___ died”; “I stay away from things that remind me that ___ died”; “I think about how things could have been different, so that __ wouldn’t have died”) on a 5-point Likert scale ranging from 0 (not at all) to 4 (all the time). It can be scored either according to the provisional PCBD DSM-5 diagnosis or with the primary grief domains of multidimensional grief theory (Separation Distress, Existential Identity, Distress, Circumstance-Related Distress). To score using the latter approach, the average of items on each of the three grief domains is calculated.
The PCBD Checklist was developed and tested by presenting the original item pool to content experts and clinicians for feedback on clarity, developmental appropriateness, and clarity, and qualitative interviews with a small sample (N = 15) of bereaved children (Kaplow et al., 2018). Kaplow et al. (2018) then evaluated the psychometrics of the PCBD Checklist among a sample of 367 bereaved children across the United States. The factor analysis provided support for the two-factor solution representing Criterion B (e.g., preoccupation with the deceased and/or the circumstances of death) and Criterion C (reactive distress and/or social/identity disruption) for the proposed PCBD diagnosis. They found evidence of discriminant and convergent validity with measures of depressive and PTSD symptoms (Kaplow et al., 2018). Noteworthy, the measure’s traumatic bereavement specifier was significantly associated with a measure of PTSD symptoms but not depression, providing further support for the validity of the specifier.
Texas Revised Inventory of Grief
The Texas Revised Inventory of Grief (TRIG) is a self-report measure of negative grief reactions and includes two subscales (Past and Present Feeling; Faschingbauer, 1981). The former measures feelings at the time of death whereas the latter measures current grief-related feelings and behaviors. Three included papers used the TRIG (Myers-Coffman et al., 2019; Sandler et al., 2010; Servaty-Seib & Pistole, 2007). Servaty-Seib and Pistole (2007) used both scales of the measure in their study. Sandler et al. (2010) used the Present Feeling subscale at each of four time points in their 6-year study. The tool was originally developed for adults. Both groups of authors (Sandler et al., 2010; Servaty-Seib & Pistole, 2007) reported they changed the wording of items to be appropriate for children (e.g., modified “I found it hard to work well” to “I found it hard to do well at school”). Sandler et al. also reported they dropped two of the original items (“Sometimes I very much miss my [deceased parent]”; “No one will ever take the place of my [deceased parent] who died”) on the Present Feeling scale due to skewness and kurtosis. Myers-Coffman et al. (2019) used the version adapted by Sandler et al. (2010).
Regarding psychometrics in child samples, Sandler et al. (2010) examined the factor loadings of the Present Feeling scale across two age groups (ages 8–11 and 12–16 years). They found that factor loadings, variances, and intercepts did not vary across age groups. Servaty-Seib and Pistole (2007) reported subscale Cronbach’s alphas as follows: TRIG-Past = .82 and TRIG-Present Feeling = 0.93. Across four time points in their study, Sandler et al. (2010) reported alphas for their 11-item version of the Present Feelings subscale as .89, .89, .92, and .92 for Time 1 to 4. Although no identified studies examined the external validity of the TRIG among children, research from use of the TRIG among adults suggests that the tool is significantly positively correlated with related constructs, such as anxiety and depression (e.g., Holm et al., 2018).
Prolonged Grief Questionnaire for Adolescents
The Prolonged Grief Questionnaire for Adolescents (PGQ-A), is a 36-item self-report measure of grief in children used in two included studies (Unterhitzenberger & Rosner, 2014; 2016). This tool, based on the EGI (Layne et al., 2001), purports to assess childhood traumatic grief (CTG). It includes CTG items according to Cohen et al.’s (2016) criteria and 14 ICG-RC items. Children are instructed to think of their most significant loss when answering each item. Items are rated on a 5-point Likert-scale from 0 (never) to 4 (always; e.g., “his/her death causes me lots of sorrow, pain, or grief”; “I feel that my life is empty without him/her”). Unterhitzenberger and Rosner (2014, 2016) used the measure with children living in rural Rwanda (orally translated by a guidance counselor to Kinyarwanda). Authors reported strong internal consistency (α = .94) for the measure overall. They used ROC-analysis to determine a cut-off score of 82.5 for prolonged grief, finding adequate sensitivity and specificity, and reporting significant correlations between measure and impairment. They found a two-factor fit, identifying the scales as Separation Distress (α = .95) and Secondary Emotions (α = .61), which measures emotions related to the loss such as shame, anger, and guilt.
The Core Bereavement Items Questionnaire
The Core Bereavement Items Questionnaire was used in one study and specifically, only the Grief subscale of the measure was used (Thurman et al., 2017). The measure, originally developed for adults, has items based on the grief and bereavement literatures and the authors’ clinical expertise (Burnett et al., 1997; e.g., “Do reminders of ‘x’, such as photos, situations, music, places, etc., cause you to feel loss of enjoyment?”). The original items were then administered to bereaved parents, bereaved spouses, and adult children via self-report. Thurman et al. (2017) translated the Grief scale into Sesotho and used it as a clinician-administered outcome measure in their randomized controlled trial among female children in South Africa. Authors reported a Cronbach’s alpha of .84. As this scale was only used in one included study, no further psychometric information on the scale for use in samples of children with traumatic loss is available. However, research with adults has found significant positive associations between the Core Bereavement Items and the ICG-R (Holland et al., 2013).
Traumatic Grief Inventory for Children
Traumatic Grief Inventory for Children (TGI-C; Dyregrov et al., 2001). Two included studies (Dillen et al., 2009; Kalantari et al., 2012) used the TGI-C. Kalantari et al. translated the measure into Farsi using a translation back-translation procedure. The self-report tool consists of 23 items to evaluate maladaptive grief in children. Items are rated on a 5-point Likert scale from 1 (almost never) to 5 (always) and total scores are computed by adding raw scores from each item. Kalantari et al. (2012) reported a Cronbach’s alpha of .81 for the scale and used the measure in their RCT of a “Writing for Recovery” group among war-bereaved Afghani refugee children. In their study, Dillen et al. (2009) reported conducting a confirmatory factor analysis and finding that the TGI-C was distinct from measures of depression and anxiety.
Adapted Inventory of Traumatic Grief (Sandler et al., 2010)
This measure was developed to evaluate outcomes at Time 4 (6 years after the post-treatment assessment) of a study of the Family Bereavement Program and was only used in this study. This self-report measure consists of 24-items adapted from the 34-item ITG (Prigerson & Jacobs, 2001). Sandler et al. (2010) consulted with Prigerson to determine items from the measure that best represented the construct of PGD that would also be appropriate for parentally-bereaved children. Sandler et al. reported that Cronbach’s alpha for the scale in their study was .92. Greater scores on the measure indicate greater levels of grief-related distress. No further psychometric details were available for this measure nor were the specific items.
The Bereavement Group Questionnaire for Parents/Guardians (Tonkins & Lambert, 1996)
This parent/guardian-reported measure was used in one included study (Hilliard, 2007). It was developed to assess type and severity of grief symptoms in children and was originally used as an outcome measure in Tonkins and Lambert’s psychotherapy program for bereaved children. The tool intends to assess emotions (e.g., guilt, anger, sorrow, anxiety), behaviors (e.g., withdrawal from others, overactivity), physical symptoms (e.g., headaches, stomach aches), and thoughts (e.g., disbelief regarding death) related to grief. The developers only reported on the tool’s internal consistency (α = .74; Tonkins & Lambert, 1996). No factor analysis or further data on the measure including external validity or sample items were provided in either paper.
Measures of Grief-Related Constructs
Intrusive Grief Thoughts Scale (Sandler et al., 2010)
This nine-item self-report measure assesses the frequency of intrusive, negative, or disrupted grief-related experiences. It was reported in three included articles, each using it to evaluate treatment outcomes. Two articles were from the same project, the Family Bereavement Program (Little et al., 2009; Sandler et al., 2010), with the measure originally developed as an outcome tool for this study. The other study used it to evaluate the effectiveness of a support group program delivered to bereaved girls in South Africa (Thurman et al., 2017). It uses a 5-point Likert scale to assess the frequency of experiences in the past month (e.g., “I think about the death when I don’t want to”; “I have trouble doing things I like because of thinking about the death”). Confirmatory factor analysis suggests the scale measures one factor, with items producing significant factor loadings above 0.50. Factor loadings were invariant across age groups of 8 to 11 and 12 to 16. Internal consistency has been found to be consistently high (αs ranged from .88 to .93). Regarding convergent and divergent validity, Sandler et al. (2010) found the measure had significant moderate positive correlations with the TRIG (r = .69, p < .001), positive correlation with measures of child internalizing and externalizing symptoms, and negative correlations with measures of self-esteem and peer competence (rs ranging from .35 to −.18).
Grief Cognitions Questionnaire for Children
The Grief Cognitions Questionnaire for Children (GCQ-C) was used in one included study (Spuij et al., 2017). Spuij et al. developed the GCQ-C based on the 38-item GCQ for adults developed by Boelen et al. (2003) to assess negative bereavement-related thoughts. They developed the measure in a stepwise procedure by first having two child clinical psychology experts simplify the wording of the original GCQ. Based on this process, authors drafted a 55-item version, which was reviewed by two other child clinical psychologists. This version was then reviewed by a sample of 20 children to select items with the best face validity. The process yielded a 20-item self-report measure that uses a 3-point Likert scale (0 = hardly ever, 1 = sometimes, 2 = always). Respondents are asked to rate the frequency they have experienced each thought in the past 2 weeks (e.g., “I think that the future will be no fun without him/her”; “Since s/he died, I think of myself as a weak person”).
Spuij et al. (2017) examined its psychometrics across two samples of children (ages 8–18 years) in the Netherlands. The 20 items reflected one underlying factor authors referred to as “overall negative loss-related thinking,” which had strong internal consistency (α = .93). They assessed test–retest reliability by having 30 children complete the measure 3 to 9 weeks (T2) and 25 to 34 weeks (T3) after baseline (T1). Between T2 and T3, test–retest reliability was r = 0.84 (p < .001), and r = .73 (p < .001) between T1 and T3. Authors found the CGQ-C was significantly positively correlated with measures of PGD, depression, internalizing problems, and impairment in functioning because of loss. Regarding convergent and divergent validity, they found it was significantly more strongly correlated to measures of internalizing than externalizing symptoms. Authors reported no significant differences as a result of age, gender, whether the death was expected, cause of death, time since loss, or relationship to deceased.
Two Track Bereavement Questionnaire
Subscales from this measure were used in one study (Rubin et al., 2009; Sirrine et al., 2018). Developed based on the Two Track Model of Bereavement, Track I assesses an individual’s biopsychosocial functioning and Track II their ongoing relationship with the deceased (Rubin et al., 2009). The included study only used Track II items, consisting of 30 self-report items and three subscales. Sirrine et al. (2018) modified the wording for use with children and pilot tested the tool with eight bereaved children before using it in their study. The Close and Positive Relationships to the Deceased subscale (eight items) evaluates aspects of an individual’s relationship with the deceased 2 years prior to the death (higher scores indicate a more intense and positive relationship). The Conflictual Relationship to the Deceased subscale (six items) measures the degree of conflict in an individual’s relationship to the deceased in the 2 years before death and their thoughts about conflicts they had the week prior to the death (higher scores indicate greater conflict in the relationship). The Relational Active Grieving subscale (16 items) evaluates the degree to which the individual is shifting their relationship to the deceased from active presence to memory (higher scores indicate greater “intensity of contact in the relationship” (Rubin et al., 2009, p. 324). Sirrine et al. (2018) reported an overall consistency for the 30-item measure as Cronbach’s α = .84 and subscale internal consistencies: Relational Active Grieving (α = .88), Close and Positive Relationship to the Deceased (α = .85); Conflictual Relationship to the Deceased (α = .47). The developers reported convergent validity between this measure and the ITG (Rubin et al., 2009).
Characteristics, attributions, and responses after exposure to death—youth and parent versions
The characteristics, attributions, and responses after exposure to death—youth (CARED-Y) and parent (CARED-P)were used in one included study (Brown et al., 2008) for which the measures were developed (Brown et al., 2003). The CARED-Y is a 39-item self-report measure of childhood exposure to death, report of the most difficult death, and perceptions of and peritraumatic reactions to the most difficult death. The measure also assesses family relationships and caregiver’s emotional functioning and participation in death-related rituals. The CARED-P assesses caregiver’s perception of the most difficult death, child’s trauma history (e.g., number of potentially traumatic events to which the child was exposed to), and length of time since the child’s most difficult death.
Inventory of Youth Adaptation to Loss
The Inventory of Youth Adaptation to Loss (IYAL) was used in one included study that also described its development and validation (Kaplan et al., 2020). This self-report measure (46 items) evaluates bereaved children’s social and emotional support and responses to grief. Items are divided into 10 sections and rated on a 5-point Likert scale. It was pilot tested with 32 children from two schools in North America and the final measure was evaluated in a sample of 400 bereaved children. Authors found a five-factor fit for the measure and adequate internal consistency for each scale: Social Emotional Scale of Loss (α = .79; e.g., “Within the past week, most of the time I felt alone”), Scale of Family Support and Continuing Bonds related to Loss (α = .82; e.g., “I talk about how I feel about the person who died with someone in my family.”), Scale of Peer Support related to Loss (α = .85; e.g., “Someone in my family talks to me about the person who died without me asking them to”), Scale of Self-Identity and Growth related to Loss (α = .73; e.g., “I feel like I get enough help dealing with my feelings about the death from my non-grieving friends”), and Self-Efficacy related to Loss (α = .61; e.g., “I feel in control of my actions when I think about the death”). Kaplan et al. found weak to low moderate positive relationships between the IYAL and the Hogan Sibling Inventory of Bereavement, commenting that convergent validity cannot be fully confirmed.
Measures Developed for Specific Types of Loss
Grief Scale
Daigle and Labelle (2012) constructed a self-report grief scale to evaluate a group therapy program for children bereaved by suicide. They developed the scale based on grief in four categories (feelings, cognitive responses, physical responses, and behaviors), but provided no further information about the scale.
Hogan Sibling Inventory of Bereavement
The Hogan Sibling Inventory of Bereavement was used in three included studies (Dyregrov et al., 1999; Hogan, 1990; Hogan & Greenfield, 1991; Kaplan et al., 2020; Poijula et al., 2001) and has two subscales: Personal Growth (22 items; e.g., “I have a better outlook on life”) and General Grief (24 items; “I don’t care what happens to me”). Items are scored on a Likert scale from 1 (almost always true) to 5 (hardly ever true) with lower scores indicating greater grief and lower personal growth. Originally developed to assess grief among adolescents whose sibling had died, it was adapted by Dyregrov et al. (1999) for use with children whose peer died. Poijula et al. (2001) used the measure to evaluate classmates of a deceased student. Regarding psychometrics, Dyregrov et al. (1999) reported a Cronbach’s alpha for the scale of .77 1 month following death and .78 9 months following death. Poijula et al. (2001) reported a Cronbach’s alpha of .80. In their study, Hogan et al. (1991) reported the measure had concurrent validity because grief intensity significantly predicted measures of self-concept. A cut-off score of 13 is suggested to indicate low grief and below 13 to indicate high intensity grief (Hogan & Greenfield, 1991; Poijula et al., 2001). Of note, Kaplan et al. (2020) used the revised short-form version re-named the Hogan Inventory of Bereavement-Short Form (Hogan et al., 2021) that consists of 20 items.
Discussion
Research over the past decade has advanced our understanding of grief in children bereaved by sudden and traumatic loss. While grief reactions tend to abate over time, some children have enduring trauma- or grief-related symptoms that cause functional impairment in childhood and adolescence (Dillen et al., 2009) and even adulthood (Stikkelbroek et al., 2012). Considering the maladjustment risk associated with traumatic loss, there is need for standardized assessment of grief, loss, and bereavement symptoms in children. Thus, this study reviewed measures of grief used in the field with children and examined their strengths and limitations.
This systematic review identified 39 studies that used 17 unique tools to assess grief in children, many of whom were exposed to sudden, traumatic loss. Measures fit into three different categories: (1) pathological grief symptoms (n = 10); (2) traumatic grief-related constructs (n = 5); and (3) specific types of loss (n = 2). The majority of studies used IGC (n = 10) followed by the EGI (n = 7). One-third of studies used a unique and specific tool to measure grief or loss, with over half of measures being used by only one study that included a traumatic loss sample. Given most studies used distinct tools, strong conclusions are challenging to make, as the measures may be capturing very different aspects of grief and loss in children and adolescents.
Although findings in this review suggest many tools exist for assessing grief and loss in children, the development and use of these measures raises a myriad of questions for the field. Of 17 unique measures in the included studies, none directly map onto the newly proposed criteria for PGD in the DSM-5-Text Revision (DSM-5-TR) and only one mapped directly onto proposed DSM criteria for PCBD (i.e., PCBD Checklist). However, several measures (e.g., IPG-A, IPG-C, Adapted ITG) assess aspects of PGD. With the inclusion of PGD in the DSM-5-TR, PCBD is no longer listed in the DSM appendix and thus, the authors of the PCBD Checklist plan to retire this measure and replace it with a PGD Checklist for Bereaved Children and Adolescents (Layne et al., 2022; Layne, personal communication, March 27, 2022). Similarly, the changing diagnostic conceptualizations of grief have rendered some measures outdated. For example, the EGI is considered to be “retired” because the authors stated it is no longer a “best-practice” tool (Layne, personal communication, March 27, 2022).
Because of the variability in tools and changes in grief conceptualization, it is extremely difficult to connect results of these measures to clinical diagnoses without examining the content of each one directly. Having such variety, without understanding how they diverge or overlap in their factor structure or clinical utility, among other factors, makes comparing findings across studies incredibly challenging and can muddy our understandings of the construct to be assessed. These limitations greatly complicate the field of child grief.
Most studies in this review used measures initially developed for adults and then adapted for child samples (Ennis et al., 2022). Such adaptations were often face-valid (e.g., changing items about work- to school-related dysfunction). Some studies did pilot test the modified measures among children to examine validity with this population—but results from studies that did not pilot adapt tools in children should be interpreted with caution. This is critical, since children’s presentation of grief and loss may differ from adults’ (Nader & Salloum, 2011). Measuring grief with slightly different wording may not be the most adequate approach to assessing these constructs in youth. For example, Kaplow et al. (2018) discussed concern about how the ICG was adapted for use among children (slight wording changes, pilot testing limited to children who lost a parent to suicide; Melhem et al., 2007) and whether the changes adequately captured potential developmental differences in grief among children. They also raised concerns about the applicability of the TRIG, originally developed for adults, as a developmentally appropriate measure of pathological child grief (Kaplow et al., 2018).
Several measures in these studies were either not validated with children at all or were validated with children who had not experienced traumatic loss. This poses significant challenges to generalizability of findings, given measures may not fully capture grief symptoms of children exposed to traumatic loss. The literature is mixed as to whether there are significant differences between children experiencing traumatic and expected loss in both prognosis and risk sequelae (e.g., Kaltman & Bonanno, 2003; Kaplow et al., 2014; Kokou-Kpolou et al., 2020; Layne et al., 2017). Thus, the field could benefit significantly from better understanding this question. Such research necessitates studies using samples uniquely composed of children exposed to traumatic loss compared to those who have experienced “natural” or expected loss.
Relatedly, only two studies were developed for specific loss types. Loss-specific tools may be important given mixed findings regarding whether children respond differently to traumatic versus expected loss. Perhaps, mixed findings may be related to not accounting for traumatogenic aspects of the death in certain expected losses (e.g., gruesome hospital procedure). Development of measures specific to different loss types may assist in further understanding the phenomenology of grief in children. Loss-specific measures related to COVID-19 may be particularly important given the expected increase in loss during the pandemic. COVID-19-related loss is unique—for some, it may be unexpected and death may result relatively quickly. For others, death may result after a prolonged period of hospitalization or medical complications in which the loss becomes expected over time (e.g., loved one on a ventilator for months). Among other unique features in pandemic-related loss that could further exacerbate grief complications may include relatives not being able to be physical present during death or visit due to restrictions. Measures such as the Pandemic Grief Scale (Lee & Neimeyer, 2020) have been developed for adults, but pandemic-specific measures for children would be beneficial.
Measures were also not used among diverse children. Most studies included were conducted in North America with predominantly White English-speaking samples. Rituals and norms around grief may differ across cultures (e.g., Lopez, 2011; Rosenblatt, 2017), racial and ethnic factors (e.g., racial trauma, systemic oppression) may impact bereaved children differently, and certain populations (e.g., refugees, war survivors) may be more exposed to and affected by death. Future research should examine the validity and reliability of these tools across distinct cultures and regions and better explore cultural and linguistic differences in grief presentation in children.
Finally, most measures were self-report instruments. As such, they did not capture multi-informant perspectives (e.g., teacher, caregiver). We found no clinician-administered interview to identify symptoms that map onto DSM criteria. These gaps limit our understanding of the studies’ results, given limitations of only using self-report data (De Los Reyes et al., 2015), particularly in younger samples who may have different perspectives on grief and loss or whose symptoms may better be captured through a combination of multiple informants’ reports. Important to consider in investigating self- and other-reported tools to assess childhood grief are the potential ethical concerns (e.g., timing, recruitment, consent, format) of engaging in research with vulnerable, trauma-exposed children (Dyregrov et al., 2000)
Based on our review, we propose some considerations for researchers and clinicians. The two most used tools (EGI, ICG) have limitations. The EGI is retired and not considered for best practice use. The ICG, although widely used, has raised concerns for the way it was adapted for children. In selecting measures, users should carefully consider what aspects of grief they seek to assess (e.g., pathological symptoms of PGD), for which population (e.g., children bereaved by traumatic, pandemic, or expected loss), and how the tool was developed or adapted for that population. For example, for clinicians aiming to screen children for PGD according to the DSM-5-TR, the PGD Checklist for Bereaved Children and Adolescents may be the most promising tool (Layne et al., 2022). Though it may be tempting to select a more widely used measure, given authors have used different instrument versions, and the literature continues changing its conceptualizations of maladaptive grief, selection purely based on frequency of use is not recommended.
In addition to field limitations in child grief assessment, limitations in our review are important to note. First, studies assessed grief in children under the age of 18 years. However, young children may differ from older adolescents in grief reactions. Authors felt it was important to fully examine the broad range of tools available for children, but results should be interpreted with caution. Further work should disentangle grief assessment for children across different ages. Second, several measures in the literature provide a comprehensive assessment of children’s reactions to traumatic loss beyond grief (e.g., PTSD, depression) but were not included in the current review because they did not measure grief processes specifically. Finally, data on measures included in this review were extracted from included studies and original papers describing measure development. Thus, it is possible data related to measures were missing because these were included in papers not meeting inclusion criteria (e.g., no traumatic loss sample; non-peer-reviewed manuscripts).
Taken together, results of this review suggest a variety of assessment tools exist in the literature to measure grief in children exposed to traumatic loss. However, their development, constructs assessed, and potential utility varies across measures. Thus, needed are studies that compare the psychometric properties of available tools and examine whether these are valid across different groups (e.g., age, demographic, region, loss type, relation to deceased). Given the plethora of loss and death-related rituals and expectations across the world, it is particularly important these tools be examined within the cultural context and norms in which the loss occurred. What is expected and normative grief for a child in one culture could differ from another (Lopez, 2011; Rosenblatt, 2017). Thus, the “adaptiveness” of grief and associated loss sequelae must be considered in context. Finally, we recommend the clinical utility (e.g., accuracy, reliability) of these tools be evaluated for diagnostic purposes (e.g., identifying children who may benefit from intervention following traumatic loss; early screening) and for detecting treatment progress and outcomes (e.g., change in grief-related distress and functioning), given the need for mental health services for children experiencing grief-related problems following traumatic loss (e.g., Pastrana et al., 2020).
In sum, this paper offers an overview of assessment tools to guide the ongoing and future study of traumatic loss in children. Our review found various measures that map onto difficulties in grief and bereavement that have been used with children exposed to traumatic loss. This is encouraging, given that grief in children, particularly when compounded with traumatic loss, has been understudied within the broader trauma and grief literatures. Ultimately, results suggest it is critical for the field that a standardized assessment for maladaptive grief be developed and tested that maps onto DSM criteria and is validated with children that have experienced traumatic loss.
Critical Findings
Children’s grief reactions following traumatic loss have been understudied. Research is likely to increase with the addition of the PGD diagnosis in the International Classification of Diseases-11 (ICD 11) and DSM-5-TR. This paper systematically reviewed the literature to identify measures of grief administered to children exposed to traumatic loss.
17 measures were identified and across reviewed studies (N = 39), various adaptations and variations of measures were used. The most commonly administered measures reported were the child versions of the ICG and the EGI.
Among tools identified, various constructs assessed emerged, including: normal and maladaptive grief reactions (e.g., existentially complex; separation distress); traumatic grief symptoms (e.g., avoidance, intrusive thoughts); relationship quality (e.g., positivity; conflict) with loved one prior to loss; valence of memories and connection to deceased post loss and present; level of exposure to death; and family functioning and support.
Implications for Research, Practice, and Policy
There is no “gold standard” measure of grief for children exposed to traumatic loss. Perhaps, this is due to lack of consensus of what constitutes problems in grief (e.g., duration? intensity?) and changes in proposed diagnostic criteria over the past decades.
Studies on childhood traumatic loss used different measures and variations of those measures to assess similar constructs. Lack of standardization of tools makes comparing across studies challenging, and limits interpretability, generalizability, and replicability.
All but one measure included in the review were self-report instruments. Given the importance of multi-informant assessments, particularly for childhood phenomena, it is imperative to develop tools to assess other informants’ perspectives on the impact of traumatic loss and grief in child and adolescent populations.
Further research is needed on measures that map on to the PGD diagnosis with its inclusion on the DSM-5-TR. This will help clinicians and other providers better identify youth who could benefit from intervention and assess treatment progress and outcomes.
Supplemental Material
sj-docx-1-tva-10.1177_15248380221127256 – Supplemental material for Assessment Tools for Children who Experience Traumatic Loss: A Systematic Review
Supplemental material, sj-docx-1-tva-10.1177_15248380221127256 for Assessment Tools for Children who Experience Traumatic Loss: A Systematic Review by Naomi Ennis, Freddie A. Pastrana, Angela D. Moreland, Faraday Davies, Sara delMas and Alyssa Rheingold in Trauma, Violence, & Abuse
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Naomi Ennis is supported by a Canadian Institutes of Health Research Fellowship (430549). This work was also supported by an Office of Victims of Crime (OVC) Grant (2016-XV-GX-K021).
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