Literature review

A search of the Medline, Cancerlit, and PsychInfo databases was conducted with the search terms bereavement and grief in combination with any of the following: (assessment, audit, outcome, measurement, interview, questionnaire, survey, or scale) and (palliative care, terminally ill, or terminal care). In addition, we selected references from the methods sections of the articles reviewed, and we searched an online catalogue for relevant books.

I. Listing of potential instruments

Based on the review of the literature, 24 potential instruments were identified.

10-Mile Mourning Bridge (Huber and Bryant 1996)- a visual analogue scale ranging from 0 to 10 intended as a self-assessed measure of progress through bereavement. "Mile 0" marks the point prior to grieving, and "mile 10" signifies the point at which grieving no longer is the primary focus of life. The intervening miles are not labeled so as to allow for individualized grieving processes.

Anticipatory Grief Scale, AGS (Theut et al. 1991)- a 27-item self-report tool designed to assess the bereavement experience of women whose spouses have been diagnosed with dementia. Items are scored on a 5-point Likert scale, ranging from "strongly disagree" to "strongly agree." (See "Review of Potential Instruments" below for a more detailed summary.)

Bereavement Experience Questionnaire, BEQ (Demi & Schroder 1987)- a 67-item self-report measure with eight theoretically derived sub-scales (guilt, anger, meaninglessness, yearning, depersonalization, stigma, morbid fears, isolation). Items are scored on a 4-point Likert scale corresponding to the frequency of occurrence, ranging from never to almost always.

Bereavement Experience Questionnaire, Short-form, BEQ-24 (Guarnaccia & Hayslip 1998)- a 24-item measure intended to assess a variety of aspects of grief and bereavement in both clinical and research settings. Factor analysis reveals three sub-scales: existential loss/emotional needs, built/blame/anger, and preoccupation with thoughts of deceased. Items are coded on a 4-point response scale with anchors.

Bereavement Phenomenology Questionnaire, BPQ (Byrne and Raphael 1994)- a 22-item self-report measure intended to rate the frequency of bereavement phenomena in the prior two weeks. The measure is self-reported but has been administered by interviewers. Items are scored on a 4-point Likert scale (never, rarely, sometimes, and often).

Bereavement Response Scale II, BR-II (Weiss and Richards 1997)- a 6-item measure to predict recovery from bereavement of the loss of a long-term partner (hetero- or homosexual). The instrument is intended as a guide for coding narrative data about the bereavement process in order to predict an outcome of the recovery process.

Brief Symptom Inventory, BSI (Derogatis and Melisaratos 1983)- a 53-item self-report inventory of 9 dimensions (somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, psychoticism) and 3 global indices of distress. Items are rated on a 5-point scale of distress, ranging from "not at all" to "extremely". The instrument is a shortened version of SCL-90-R.

Complicated grief symptoms questions (Horowitz et al. 1997)- 30 possible symptoms of complicated grief divided into three clinically derived categories (avoidance, intrusion, and failure to adapt). These questions were added to an interviewer-rated assessment using the SCID-NP.

Composite International Diagnostic Interview, CIDI (Robins et al. 1988)- a fully structured psychiatric interview. A modified version including the somatization, anxiety, and depression modules has been used to assess depressive symptoms and episodes in recently widowed older men (see Byrne & Raphael 1999).

Core Bereavement Items, CBI (Burnett et al. 1997)- a 17-item questionnaire that measures the intensity and evolution of bereavement experiences among a variety of bereaved persons (e.g., spouses, adult children losing parents, parents losing children). Items are rated on 4-point scales and fit within three sub-scales--images and thoughts, acute separation, and grief.

Expanded Texas Inventory of Grief, ETIG (Zisook 1982)- a 58-item instrument to assess a variety of behaviors, feelings, and symptoms associated with bereavement. Items are rated on a 5-point scale (from completely false to completely true) and concern both present feelings and feelings when the loved one died. (Also see Texas Inventory of Grief and Texas Revised Inventory of Grief.)

Grief Experience Questionnaire, GEQ (Barrett & Scott 1989)- a 55-item self-administered questionnaire representing 11 dimensions of grief (somatic reactions, general grief reactions, search for explanation, loss of support, stigmatization, guilt, responsibility, shame, rejection, self-destructive behavior, unique reactions). Items are scored on a 5-point Likert scale measuring frequency of experience (from never to almost always). The instrument originally was developed to compare bereavement experience of suicide vs. non-suicide survivors.

Grief Measurement Scale, GMS (Jacobs et al. 1986)- a 38-item structured interview developed to assess grief numbness/disbelief and separation anxiety (as conceptualized by attachment theory) as well as sadness and despair (as constructed by the CES-D). Interviewers recorded the frequency of each item within the past week (never/rarely, 1-2 days/week, 3-4 days/week, 5-7 days/week).

Grief Resolution Index, GRI (Remondet & Hansson 1987)- a 7-item measure focusing on behaviors associated with grief resolution and the transition into widowhood. Items are rated on a 5-point scale, ranging from very poorly to very well. (See "Review of Potential Instruments" below for a more detailed summary.)

Hogan Grief Reactions Checklist (Hyrkas et al. 1997)- a 61-item measure assessing a range of topics related to the bereavement process. Topics include fears of loss of control, difficulty with concentration, culpability and survival guilt, panic attacks, and desire to die to be with the deceased person. Items are scored on a 5-pont scale, ranging from "does not describe me at all" to "describes me very well."

Impact of Event Scale, IES (Horowitz et al. 1979)- a 15-item scale intended to assess response to stressful life events, including the death of a loved one. Two sub-scales (intrusion and avoidance) are theoretically suggested and empirically supported through factor analysis. Responses are coded on a 4-point scale, ranging from "not at all" to "often," and the reference period is the past seven days.

Inventory of Complicated Grief, ICG (Prigerson et al. 1995)- a 19-item assessment of symptoms of complicated grief. Items describe an emotional, cognitive, or behavioral state associated with complicated grief. Respondents rate the frequency with which they experience each item on a 5-point scale, ranging from "never" to "always."

Monologue questionnaire (Field & Horowitz 1998)- a 13-item questionnaire measuring unresolved grief and relating to an empty-chair monologue task undertaken before the completion of the questionnaire. Items are 5-point unipolar rating scales and address 5 domains (self-blame, helplessness, blame toward the deceased, non-acceptance, and being at peace).

Psychological Adjustment to Physical Illness, PAIS, (Morrow et al. 1978) adjusted to assess loss (Gilbar 1998)- a 45-item questionnaire which, after adjusting to assess loss, contains six sub-scales: health care orientation, vocational environment, domestic environment, extended family relationships, social environment, and psychological distress. Each item consists of four statements rated on a 4-point scale, ranging from no problems to many difficulties.

Revised Grief Experience Inventory, REGI (Lev et al. 1993)- a 22-item scale measuring four domains (existential concerns, depression, tension and guile, and physical distress) of the grief experience of bereaved persons with a variety of relationships to the deceased. Responses are scored on a 6-point scale, ranging from slight disagreement to strong agreement.

Satisfaction with Bereavement Experiences Questionnaire, SBEQ (Warren 1998)- a 24-item self-report measure developed to assess family members’ satisfaction with bereavement experiences both before and after the death of a loved one in a critical care unit. Items are rated on a Likert scale, and factor analysis reveals four components—hospital experiences, personal experiences, ritual experiences, and post-hospital experiences.

Semantic Representation of Others Scale, SROS (Bonanno et al. 1998)- a 16-item measure of interpersonal ambivalence. Respondents rate another person on 8 positive traits and 8 corresponding negative traits. Instrument has been used to examine the relationship between ambivalence during conjugal bereavement and prolonged grief.

Texas Inventory of Grief, TIG (Faschingbauer et al. 1977)- a 7-item scale to measure the extent of unresolved grief in response to the loss of a family member. Items are rated on a 5-point scale, ranging from completely true to completely false. The measure is intended to serve as a brief screening tool and is based on the theory that grief resolution is a function of time. (Also see Expanded Texas Inventory of Grief and Texas Revised Inventory of Grief.)

Texas Revised Inventory of Grief, TRIG (Fashingbauer et al. 1987)- a self-report measure that includes demographic questions about the deceased and bereaved persons, 26 items regarding the bereaved person’s feelings and actions at the time of the death and presently, and an open-ended question to communicate additional issues. Scale items are rated on a 5-point scale (from completely true to completely false) or as dichotomous true/false statements. The instrument is intended to measure past adjustment, present feelings, and progress through stages of grief. (Also see Texas Inventory of Grief and Expanded Texas Inventory of Grief.)

II. Review of potential instruments

I [MJR] am recommending the Grief Resolution Index and the Anticipatory Grief Scale for inclusion in the Toolkit.

A. Grief Resolution Index

i. Conceptual and Measurement model (Does the scale represent a single domain or do model scales measure distinct domains? Is the variability of the scale reported? What is the intended level of measurement i.e. ordinal, interval, ratio or category?)

The purpose of this Index is to identify individuals who are experiencing prolonged psychological distress associated with the death of a spouse. The Toolkit's purpose seems to best fit this Index rather than measuring grief itself. The grief process is complicated and cannot be properly measured by a short set of questions. This index of grief resolution seems to give a good indication of how well or poorly the individual was able to go through process of grief. It was able to predict both short-term and long-term adjustment to widowhood. This makes the index a useful longitudinal tool.

This is an interview assessment, but it could easily be self-administered. Although not reported, it should only take 5 minutes to complete. The statements were designed for use with widows, but, with the exception of item 2--Stopped saying "we"-- it could be worded to refer to any relationship. The 7 item index is a 5 point continuous scale from '1' being very poorly to '5' being very well. The mean score was 24.4 and standard deviation was 7.5. The factor loading for item '2' is the lowest of the 7 items in the index (.67). I believe it is reasonable to assume that dropping this item when using it with individuals other than spouses would not reduce the internal reliability of the index significantly. This of course would have to be bore out with analysis. As with all the measures of grief, the main focus of research has been with elderly widows. Very few studies have had samples of younger widows or of widowers for that matter. Studies that have had such samples, find differences in the intensity of grief, but the process or feelings are the same. Both young widows and men make the same types of statements about their feelings about the death of a loved one as older women and women. Therefore, I don't see why this index could not be used with men.

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

Internal consistency was assessed using Cronbach's Alpha. The Alpha level for the scale is good at .87.

iii. Validity (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

Content validity was assessed by correlating the index with measures of short-term adjustment: Survival Expectations Index, Fear Index, Preparation Index and Desperation Index. The Grief Resolution Index was statistically significantly associated with all three short-term adjustment measures. Long-term adjustment, measured by: Beck Depression Inventory, Anxiety Index, Adjustment to Widowhood Index and Health Index. the GRI had statistically significant associations with all of these long-term adjustment measures. The index was constructed with input from members of the American Association of Retired Persons' widowed persons service which gives it face validity.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, what populations?)

This scale is meant to be used as an outcome measure.

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

This scale was used with a sample of widows, median age 75.5 and a median length of widowhood of 10.3 years. The women were recruited from senior adult recreation nutrition centers and were not randomly selected, nor, are they necessarily representative of all widows. Given these biases, I still feel that the index is a good tool for measuring psychological adjustment to a death.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does the survey take to complete? Response rates? Any problems with missing data?)

This 7 item scale can be administered in 5 minutes.. No information about missing data was available.

vii. Alternative Forms (What are the modes of administration? Alternatives? Of alternatives exist, provide what is known for each of the above categories)

Intended as interview questions, however, I see no reason why it couldn't be self-administered.

viii. Cultural and Language Adaptations (Any information?)

The grief process is culturally defined and it would be not be reasonable to assume this scale or any of those mentioned in this report could be translated into different cultures. All the scales mentioned here measure the grief process in modern industrialized western cultures. Indicators of grief resolution may also be culturally defined, so this index would not be appropriate for other cultures.

ix. Conceptual Rational for Recommendation

After reviewing the literature, it is my opinion that, for clinicians, trying to quickly identify an individual having difficulty adjusting to the death of a loved one should be a higher priority than measuring the grief process itself. The GRI is a quick and effective way to assess difficulty in adjustment. The GRI is a good starting point for clinicians to begin the intervention process where more in depth assessment on the grief process and adjustment could take place.

x. Future Research

The downfall of the GRI is that it does not give any indication of adjustment with the different dimensions of grief. Constructing a resolution index that tapped into different dimensions of grief, would help in pinpointing what grief component the person is having difficulty with, and then interventions could be tailored to that component. It may be that some individuals are no longer preoccupied with thoughts about the loved one, but they have a high level of anger about the death which produces a high level of stress. Looking at the relationship and predictability of anticipatory grief in grief resolution is an area which has had a lot of theoretical work, but little empirical research. I would, therefore, like to recommend the Anticipatory Grief scale for be considered for inclusion into the Toolkit. I will go into further detail of the Anticipatory Grief Scale and give my reasons for recommending it along with the Grief Resolution Index below.

B. Anticipatory Grief Scale (click here to download)

i. Conceptual and Measurement model

This scale represents the major domains cited in the literature on grief. It is the first Anticipatory Grief Scale cited in the literature. Anticipatory Grief has usually been measured using 'time since death' as a proxy for this process. However, anticipatory grief has been cited in the literature as having important implications for outcomes after the death of a loved one, no one had attempted to quantify the process until now.

Grief is a multi-dimensional process, and, therefore a scale measuring the different aspects is important. The scale is a 27 item 5-point Likert scale: 1 = Strongly Disagree, 2= Disagree, 3 = Somewhat Agree, 4 = Agree, and 5 = Strongly Agree. No mean scores were reported.

This is a self-administered questionnaire and can be completed in 10 - 15 minuets. The questions are worded with reference to the dying patient and to the disease diagnosis. In this sample of women it was 'dementia', but the wording could be changed to include any diagnosis. It could also be re-worded to use a different point of reference (i.e. instead of relative, spouse, child could be used). It could also be used after the death by leaving out "since...was diagnosed" and replacing with "since the death of....". I will discuss this further later.

ii. Reliability

Internal consistency was assessed using Cronbach's Alpha. The Alpha level for the scale is good at .84.

iii. Validity

Content validity was assessed by correlating the scale with the SCL-90-R depression, anxiety and hostility sub-scales. These measures of psychological distress have been shown to be outcomes of grief. The correlations were not reported, but the p levels were and they showed statistical significance at the .001 level for each of the psychological distress measures.

iv. Responsiveness

This scale has not been used as an outcome measure.

v. Interpretability

This scale was used with a sample of wives whose spouses were diagnosed with dementia. The mean age of the respondent was 68.1 and the mean age of the patient was 72.3. The average time the patients had symptoms of dementia was 3.8 years.

The use of Likert scales have been widely used as outcome variables.

vi. Burden

This 27 item scale can be administered in 10 - 15 minutes. No information about missing data was available.

vii. Alternative Forms

Intended as a self-administered questionnaire. However, I see no reason why it could not be administered by an interviewer of intake person.

viii. Conceptual Rational for Recommendation

Since one of the purposes here is to find instruments which can be used in the last month of life and can help in the assessment of quality of care, I think that it is important to assess anticipatory grief. The advantages are that clinicians, social workers and counselors can identify problems an individual may be having before the death of the loved one so that interventions can take place to avert long term bad outcomes after the death. Someone who is having intense grief before the death may be at greater risk for abnormal grief after the death which leads to both psychological and physical bad health. At the same time, someone who does not experience any prior grief may have greater problems with acceptance after the death, which could also lead to poor outcomes.

Measuring anticipatory grief and then grief would allow for the assessment of areas which may need improvement for the care of family members of someone who dies. Using the Anticipatory Grief Scale as a predictor of Grief Resolution could give clinicians a handle on the effectiveness of their grief intervention programs.

ix. Future Research

This Anticipatory Grief Scale seems to be multi-dimensional; however, there was not any factor analysis done to assess the independent dimensions. I think this would be an important piece to be done. In the grief literature, time and time again we see that anger and guilt over the death are strong predictors of psychological distress. It would be beneficial if this scale could be scored on each dimension to be able to identify specific areas which need to be addressed with interventions. A person may have 'normal' feelings of sadness, but may have very intense feelings of anger or guilt.

Research on interventions with family members who are loosing a loved one has not been fully explored. Some studies which have been done have not shown interventions to be effective, but they have tended to only measure grief at two time periods after the death and have not measured grief before. Very little has been done in research to develop interventions before the death of a loved one.

Research also needs to be done with samples of younger women and men of all ages. Also, samples of widows and widowers whose loved one died from various medical conditions needs to be explored. Grief and resolution of grief may vary depending on the condition of the loved one. Little has been done in this area.

References

Barrett TW & Scott TB. Development of the Grief Experience Questionnaire. Suicide and Life-Threatening Behavior. 1989; 19(2): 201-215.

Bonanno GA, Notarius CI, Gunzerath L, Keltner D, Horowitz MJ. Interpersonal ambivalence, perceived relationship adjustment, and conjugal loss. Journal of consulting and clinical psychology. 1988; 66, 6: 1012-1022.

Burnett P, Middleton W, Raphael B, Martinek N. Measuring core bereavement phenomena. Psychological Medicine. 1997; 27: 49-57.

Byrne GJA & Raphael B. A longitudinal study of bereavement phenomena in recently widowed elderly men. Psychological Medicine. 1994; 24: 411-421.

Byrne GJA & Raphael B. Depressive symptoms and depressive episodes in recently widowed older men. International Psychogeriatrics. 1999; 11, 1: 67-74.

Demi AS & Schroeder MA. Bereavement Experience Questionnaire. Unpublished manuscript. Georgia State University, Atlanta. 1987.

Derogatis LR & Melisaratos N. The Brief Symptom Inventory: an introductory report. Psychological Medicine. 1983; 13: 595-605.

Faschingbauer TR, DeVaul RA, Zisook S. Development of the Texas inventory of grief. American Journal of Psychiatry. 1977 June; 134, 6: 696-698.

Faschingbauer TR, Zisook S, DeVaul R. The Texas revised inventory of grief. Chapter 7 in Biopsychosocial aspects of bereavement, Zisook S (ed). 1987. Washington, DC: American psychiatric press.

Field NP & Horowitz MJ. Applying an empty-chair monologue paradigm to examine unresolved grief. Psychiatry. Winter 1998; 61: 279-287.

Gilbar O. Length of cancer patients’ stay at a hospice: does it affect psychological adjustment to the loss of the spouse? Journal of Palliative Care. 1998; 14, 4: 16-20.

Guarnaccia CA & Hayslip B. Factor structure of the bereavement experience quesitonnaire: the BEQ-24, a revised short-form. Omega. 1998; 37, 4: 303-316.

Horowitz MJ, Siegel B, Holen A, et al. Diagnostic criteria for complicated grief disorder. American Journal of Psychiatry. July 1997; 154, 7: 904-910.

Horowitz M, Wilner N., and Alvarez W. Impact of event scale: a measure of subjective stress. Psychosomatic Medicine. May 1979; 41, 3: 209-218.

Huber R, Bryant J. The 10-Mile Mourning Bridge and the Brief Symptom Inventory: Close Relatives? The Hospice Journal 1996; 11: 31-46.

Hyrkas K, Kaunonen M, Paunonen M. Recovering from the death of a spouse. Journal of Advanced Nursing. 1997; 25: 775-779.

Jacobs SC, Kasl SV, Ostfeld AM, et al. The Measurement of Grief. The Hospice Journal. 1986; 2: 21-36.

Lev E, Munro BH, McCorkle R. A shortened version of an instrument measuring bereavement. International Journal of Nursing Studies. 30, 3: 213-226.

Morrow GR, Chiarello RJ, Derogatis LR. A new scale for assessing patients’ psychosocial adjustment to medical illness. Psychological Medicine. 1978; 8: 605-610.

Prigerson HG, Maciejewski PK, Reynolds CF et al. Inventory of complicated grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research. 1995; 59: 65-79.

Remondet JH & Hansonn. Assessing a widow’s grief – a short index. Journal of Gerontological Nursing. 1987; 13, 4: 31-34.

Robins LN, Wing J, Wittchen HU. The composite international diagnostic interview. Archives of General Psychiatry. Dec 1988; 45: 1069-1077.

Theut SK, Jordan L, Ross LA and Deutsch SI. Caregiver's Anticipatory Grief in Dementia: A Pilot Study. International Journal of Aging and Human Development 1991; 33, 2: 113-118.

Warren, NA. Critical care family members’ satisfaction with bereavement experiences: Development and psychometric evaluation of a new instrument. Dissertation Abstracts International. Sep 1998; 59, 3: 1049-B.

Weiss RS & Richards TA. A scale for predicting quality of recovery following the death of a partner. Journal of Personality and Social Psychology. 1997; 72, 4: 885-891.

Zisook S, DeVaul RA, Click MA. Measuring symptoms of grief and bereavement. American Journal of Psychiatry. 1982 Dec; 139, 12: 1590-1593.

Section prepared by Mary Jo Roach.

Updated by Lisa C. Welch,  9/1/2000

This web site is published by the Center for Gerontology and Health Care Research, Brown Medical School. For further information, e-mail Dr. Joan Teno or contact her at Brown Medical School, Box G-HLL, Providence, RI, 02912, USA. For questions or comments regarding this website, please e-mail the webmaster. Last edited February 17, 2004.