Development of the Grief Experience Questionnaire
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Development of the Grief Experience Questionnaire
Terence W. Barrett, PhD Moorhead State University
Thomas B. Scott, PhD University of North Dakota
ABSTRACT: The development of the Grief Experience Questionnaire (GEQ) is reported. This questionnaire is an instrument for measuring various components of grief, including somatic reactions, general grief reactions, search for explanation, loss of social support, stigmatization, guilt, responsibility, shame, rejection, self-destructive behavior, and re- actions to a unique form of death. Initial results with the GEQ suggest its potential to differentiate grief reactions experienced by suicide survivors from those experienced by survivors of accidental death, unexpected natural death, and expected natural death. Conclusions support its use in redressing common methodological criticisms of suicide survivor research. Six additional benefits derived from use of this instrument are discussed.
For many years, clinical opinion has been that the experience of grief and its subsequent resolution in cases of suicide are different from that experienced in grief in general. A common opinion is that those intimately associated with a person who completes suicide suffer bereavement that is both qualitatively and quantitatively different from bereavement accompanying other forms of death (Calhoun, Selby, & Selby, 1982; Cantor, 1975; Hauser, 1987; Saunders, 1981; Shneidman, 1971; Solomon, 1981; Wallace, 1973). How can we determine this? Although the study of suicide bereavement has gained momentum since 1980, there have been few serious attempts to empirically evaluate the suspected dif- ferences between suicide survivorship and other forms of bereavement (McIntosh, 1985). The paucity and limitations of the literature regarding survivors of suicide, including lack of measurement tools, has been noted earlier (Calhoun et al., 1982; Foglia, 1977; Hatton & Valente, 1981; Henley, 1984; Henslin, 1971; McIntosh, 1985; Schuyler, 1973).
This paper is based on research conducted with an instrument developed for use in Barretts doctoral dissertation, submitted to the University of North Dakota in partial fulfillment of degree requirements. Request for reprints should be sent to Terence W. Barrett, Moorhead State University Counseling Center, Box 417, Moorhead, MN 56560.
Suicide and Life-Threatening Behavior, Vol. 19(2), Summer 1989 0 1989 The American Association of Suicidology 201
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Instruments measuring grief reactions have been constructed. Scales such as the Texas Inventory of Grief (Faschingbauer, Devaul, & Zisook, 1977) and the Grief Experience Inventory (Sanders, 1982-19831, and checklists of grief feelings, experiences, and behaviors (Glick, Weiss, & Parkes, 19741, have been applied in select grief studies (e.g., Farberow, Gallagher, Gilewski, & Thompson, 1987; Lund, Caserta, & Dimond, 1986). Unfortunately, such instruments are often narrow in scope, sta- tistically cumbersome, or too general to employ in the study of suicide bereavements specific reactions, and none have been used widely.
A major outcome from a study (Barrett, 1987) examining attitudinal and experiential differences across bereavement groups was the de- velopment of an instrument for measuring various components of grief. Titled the Grief Experience Questionnaire (GEQ), the development of that instrument and its description are the topics of this paper.
The GEQ was designed as the primary instrument in a study comparing the bereavement experience of suicide survivors with those of natural- death and accidental-death survivors. A primary focus of investigation was upon the presence or absence of certain factors believed to be unique to suicide bereavement.
The GEQ measures two general types of grief reaction: those expected in any bereavement and those specific to suicide bereavement. Suicide bereavement is, in large part, a natural reaction to a significant loss. In this regard, it is similar to other bereavements. Therefore, suicide bereavement is comprised of grief reactions common to any other be- reavement. Common grief reactions are reflected in two dimensions of the GEQ, Somatic Reactions and General Grief Reactions.
The literature on suicide survivors consistently suggests that certain grief reactions appear to be unique among these survivors; that is, they are uncommon among all other survivors. The dimensions of the GEQ reflecting unique grief reactions include Search for Explanation, Loss of Social Support, Stigmatization, Guilt, Responsibility, Shame, Rejec- tion, Self-Destructive Behavior, and Unique Reactions.
Operational definitions of the 11 GEQ dimensions follow. 1. Somatic Reactions. Bereavement is usually a stressful and long-
enduring experience for most survivors. As such, grief often includes
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concomitant physical reactions typical of stress. Survivors often become ill during bereavement, and many become concerned about their health. It appears that all survivors are more likely to consult a doctor during bereavement than they might have been before the death. Parkes and Weiss (1983) have suggested several somatic symptoms that are likely to be reactions to bereavement. Included among these are running or clogged nose, lump in the throat, chest pain, palpitations, sick feeling, frequent urination, itching, dizziness or fainting, nervousness, trembling or twitching, hot flashes, and inappropriate sweating. This dimension of the GEQ reflects physical reactions common among most survivors and measures the survivor's general perception of his or her physical condition during the bereavement.
2. General Grief Reactions. The manner in which individuals grieve has been reported clearly in the literature (e.g., Bowlby, 1961; Hinton, 1972; Lindemann, 1944; Parkes, 1970). Many of the grief reactions that survivors experience after a death are remarkably uniform. These predictable grief reactions have physical, emotional, behavioral, and psychological components. For example, most survivors experience shock reactions such as numbness, denial, and panic attacks. Survivors also typically display extreme behaviors such as crying, wailing, hostility, and aggression. A survivor's thoughts are likely to be preoccupied with the decedent, and feelings of guilt, rage, despair, and emptiness are to be expected. This dimension, then, reflects research findings indicating that certain reactions are common to most grief experiences, regardless of cause of death.
3. Search for Explanation. Death is most easily accepted when the survivor can intellectually formulate a plausible reason for it. Con- sequently, survivors commonly search for reasons to explain the oc- currence of death. Seeking an understanding for why the death occurred appears to be a significant component of suicide. Frequently concluded is that the many and complex factors involved in suicide make the search for explanation more intense, more solitary, and less easily resolved for suicide survivors than it is in any other form of bereavement (Calhoun et al., 1982; Wallace, 1977). This dimension reflects suicide survivors' engagement in a more difficult and more enduring search for acceptable reasons in the experience of suicidal death.
4. Loss of Social Support. Bereaved individuals often report that friends and family do not seem to be supportive enough during a period of grief. This may take the form of avoidance, abandonment of friendship, an unwillingness to listen, lack of concern and understanding, or iso- lation. Although the real or perceived loss of support from family and friends is commonly considered concomitant with grief, several authors have reported that a family grieving over a suicide is given even less
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overt social support than is normal in other bereavements (Calhoun, Selby, & Faulstich, 1980; Hatton & Valente, 1981; Osterweis, Solomon, & Green, 1984; Sheskin & Wallace, 1967). The increased social isolation and alienation of suicide survivors have been noted often (Rando, 1984; Schuyler, 1973; Wallace, 1973, 1977). Danto (1977) has specifically noted that two sources of support offered under normal death circum- stances- that is, support from neighbors and in-laws-are conspicuously absent in most instances of suicide. This dimension reflects the suggestion that generally negative social perceptions of suicide result in more frequent and severe isolation and alienation of the suicide survivor.
5. Stigmatization. Solomon (1982) has described stigma as a mark upon the survivor that potentially detracts from his or her character or reputation. Hewett (19801, explaining the Greek derivation of the word, states that stigma results from disgrace and reproach expressed by others. A natural death does not typically stigmatize the survivor to any degree. It is frequently suggested, however, that suicide not only stigmatizes the survivor; it also results in more negative views of the family than do other types of death (Calhoun, Selby, & Abernathy, 1984; Charmaz, 1980; Colt, 1987; Hewett, 1980; Rando, 1984; Shneidman, 1976; Worden, 1982). Maris (1981) reports that suicidal death has been routinely stigmatized in our society as cowardly, irresponsible, or nar- cissistic. Therefore, if the suicide survivor encounters gossip, negative attitudes, social avoidance, hints of family discord or mental illness, or overt blame for the death, he or she is likely to feel stigmatized by the suicide. This dimension is based on the common suggestion that suicide reflects negatively upon and permanently marks the survivor as different from other survivors.
6. Guilt. The experience of self-reproach is a common element of most bereavements (Parkes, 1970). Following any death, survivors might be expected to experience some sense of guilt regarding features of their relationship with the decedent. Such guilt derives from things said or done and from things not said or done in the time before the death occurred. It is not that guilt experienced during suicide bereave- ment is unique, but that such guilt is so frequent and intense. In fact, severe guilt is one of the most commonly reported reactions concomitant to suicidal grief. Unlike that which is experienced in other forms of grief, guilt is reported to be more frequent, more intense, and of longer duration in suicide (Battle, 1984; Danto, 1977; Maris, 1981; Rando, 1984; Solomon, 1981; Worden, 1982). This dimension reflects this sug- gestion that guilt is more frequent and severe among suicide survivors.
7. Responsibility. Generally, bereaved survivors seldom believe that a death could have or should have been prevented. They are not likely to believe that their interactions with the decedent either led up to or
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actually caused the death. If a survivor should experience such sensations, they are expected to be of minimal intensity and duration. In contrast, various ways in which a suicide survivor may be burdened with an overwhelming sense of responsibility in the death of a spouse have been described (Battle, 1984; Charmaz, 1980; Fliegel, 1977; Henslin, 1972). Probably the most troubling way a suicide survivor experiences responsibility for the suicide is the perception that somehow he or she directly caused the death. Similarly, a survivor may sense that he or she could have or should have prevented the suicide. A survivor may believe that he or she should have been aware of the suicidal intent of the decedent, or, if the intent had been communicated, should have informed others of such intent. This dimension reflects the suggestion that complicity in the cause of death is often experienced by the suicide survivor.
8. Shame. Worden (1982) has stated that, of all the specific feelings suicide survivors experience, shame is one of the most predominant. Unlike other survivors, survivors of suicide are likely to experience a sense of shame and embarrassment about the nature of the death and report feelings of shame at having to tell others that a family member died by suicide (Buksbazen, 1976; Fisher, Barnett, & Collins, 1976; Hajal, 1977; Hewett, 1980). Ginsburg (1971) reports that suicide is perceived by many people as a shameful event. The experience of shame may result in a frequent denial of the cause of the death and in an inability to talk openly and honestly about the death. Calhoun et al. (1982) add that this sense of shame may generally lead survivors to experience discomfort in social interactions. This dimension reflects the suggestion that the experience of embarrassment regarding the cause, nature, or circumstances of the death is common to suicide be- reavement.
9. Rejection. It is not uncommon for a grieving survivor to experience a sense of having been deserted by the deceased. Typically, this is a fleeting sensation. While most survivors report feeling sometimes that their loved ones deserted them by dying, there is little implication that death or desertion is an intentional act on the part of a decedent. Feeling deserted is usually overcome by the realities surrounding the death. As Schuyler (1973) has explained, a survivor rationally under- stands that the deceased did not leave him or her behind intentionally. After a suicide, however, the feeling of being deserted can be a serious and enduring concern. Y&it (1977) states that, though feelings associated with implied rejection may be present in other forms of death, they are not usually as intense or severe as in the case of suicide. In fact, with suicide, rejection is implied by the very specific act of the decedent, and a suicide survivor often experiences the death as an outright and
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intentional rejection by the decedent (Ostenveis et al., 1984; Rando, 1984; Saunders, 1981). This dimension reflects the suggestion that suicide often implies a deliberate abandonment and rejection of life, the survivor, and the relationship with the survivor by the deceased.
10. Self-Destructive Behavior. Arnold Toynbee (1976) coined the phrase peril of survivorship to describe the observation that a bereaved survivors life is actually in jeopardy. For at least a year after a death, regardless of the type of bereavement, a survivor is more likely to take less adequate care of himself or herself, to become ill, to be hospitalized, to be involved in accidents, to die, or to be killed. Examples of life- threatening behaviors for which any survivor may be at risk during bereavement include such obvious features as suicide attempts, self- inflicted physical injuries, and driving while under the influence of alcohol or narcotics. More subtle behaviors-lack of appropriate hygiene; food, drug, and alcohol abuse; and lack of concern for health-are also common. The peril to suicide survivors has been reported to be greater than normal, for it appears that they face a greater risk of repeating the suicide experience (Cain & Fast, 1966; Lindemann & Greer, 1953; Rounsaville & Weissman, 1980; Schulz, 1978). This dimension reflects the suggestion that suicide survivors are at greater risk for involvement in life-threatening behaviors than are other survivors.
11. Unique Reactions, Some experiences would seem to be intuitively and inherently unique to survivorship of a suicidal death. For example, it is unlikely that other survivors would be sensitive to the mention of cause of death in the media or official reports of the death (although this point may need revision in light of the contemporary acquired immunization deficiency syndrome [AIDS] epidemic). Seldom do other survivors try to conceal the circumstances surrounding the death, and it is inconceivable that they might lie about the cause of death. Some grief reactions are simply unimaginable following any death other than suicide. This dimension, then, reflects the assertion that some grief reactions common among suicide survivors are logically outside the experience of other survivors.
The GEQ (see the Appendix) consists of 55,items arranged to represent the 11 grief dimensions. The items, designed to tap the above-described components of the grief experience, were derived primarily from suicide survivors statements described in the literature and from common expectations of grief reactions. The procedure of defining constructs, and of selecting hard-core items to represent those constructs to produce
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both high content saturation and homogeneity within the scales, was based on the deductive (or rational) approach recommended by Burisch (1984) and used in test construction by Jackson (e.g., 1976). That approach yields scales that have communicability and economy along with validity.
Initially, a list of 100 possible grief reactions was compiled by Barrett. The items were judged for content representativeness and sensitivity by five male, doctoral-level research committee members knowledgeable in methodological and measurement considerations. Reduction of the number of items to 55-11 scales of 5 items each-resulted from a concern about asking survivors too many sensitive questions or about unnecessarily prolonging a potentially emotional interview. Questions that were retained were those whose content appeared to best reflect the 11 grief dimensions and whose interitem correlations and item-to- scale correlations supported that representativeness and reduced re- dundancy.
The internal consistency reliabilities of the scales, using Cronbach's alpha, are presented in Table 1. The scale alphas are moderately high to high, considering that there are only five items per scale. Because of the practical considerations noted above, the decision to proceed with the present instrument was made.
The Grief Experience Questionnaire
The GEQ, as noted above, is divided into 11 subscales representing the 11 grief dimensions. The Somatic Reactions subscale (items 1-5) is comprised of grief experiences common to all bereaved individuals.
TABLE 1. Summary of the Alpha Coefficient Reliabilities for the GEQ and its 11 Subscales
Subscale No. of items Alpha
Total GEQ Somatic reactions General grief reactions Search for explanation Loss of support Stigmatization Guilt Responsibility Shame Rejection Self-destructive behavior Unique reactions
55 5 5 5 5 5 5 5 5 5 5 5
.7910 ,6849 .6945 .8621 ,8793 ,8935 .8803 ,8299 ,8731 .7614 ,7579
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The General Grief Reactions subscale (items 6-10) also includes be- reavement reactions that might be considered common to most grief experiences, regardless of cause of death. The Search for Explanation subscale (items 11-15) reflects the suggestion that suicide survivors engage in a more difficult and more enduring search for acceptable reasons for the death. The Loss of Social Support subscale (items 16- 20) reflects the suggestion that generally negative social beliefs of suicide result in more frequent and severe isolation and alienation of the suicide survivor. The Stigmatization subscale (items 21-25) reflects the common suggestion that suicide negatively and permanently marks the suicide survivor as different from other survivors. The Guilt subscale (items 26-30) reflects the suggestion that guilt is more frequent and severe among suicide survivors. The Responsibility subscale (items 31-35) reflects the suggestion that feelings of complicity in the cause of death are often experienced by the suicide survivor. The Shame subscale (items 36-40) reflects the suggestion that the experience of embarrassment regarding the cause, nature, or circumstances sur- rounding the death is common to suicide bereavement. The Rejection subscale (items 41-45) reflects the suggestion that suicide often implies a deliberate abandonment and rejection of life, the survivor, and the relationship with the survivor. The Self-Destructive Behavior subscale (items 46-50) reflects the suggestion that suicide survivors are at greater risk for involvement in life-threatening behaviors than other survivors. Finally, the Unique Reactions subscale (items 51-55) reflects experiences that seem to be intuitively and inherently outside the grief experience of all other survivors except suicide survivors.
The items are answered on Likert scales, scored 1 = never, 2 = rarely, 3 = sometimes, 4 = often, and 5 = almost always. The questionnaire yields a Total Grief Reactions score and 11 subscale scores. The Total Grief Reactions score is a summation of the answers from items 1 to 55. The subscale scores are obtained by summing the individual items in each of the particular subsections, as described above. The higher the scale score, the greater is the likelihood that a particular survivor reaction has been experienced.
Barrett (1987) employed methodological constraints in order to avoid difficulties that have historically confused interpretation of results in
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survivor research. Controls included the unexpected nature of death, time since death, age of the survivor, and relationship with the deceased.
The nonclinical sample included 57 men and women who had ex- perienced the death of a marital partner by suicide, accident, or natural death (both unexpected and anticipated). The ages of the survivors at the time of the death ranged from 24 to 48 years. The amount of time that had passed since the death had occurred was between 2 and 4 years.
The GEQ was able to differentiate grief reactions experienced by suicide survivors from those experienced by survivors of accidental death, unexpected natural death, and expected natural death. Significant differences between suicide survivors and other survivors were indicated on the Total Grief Reactions score and on 6 of the 11 grief reaction subscales-namely, the Rejection, Unique Reactions, Stigmatization, Shame, Search for Explanation, and Responsibility subscales.
Differences among other survivors on the Somatic Symptoms, General Grief Reactions, Loss of Social Support, Guilt, and Self-Destructive Behavior subscales did not reach statistical significance. Without ex- ception, the differences among the other survivors on the Total Grief Reactions score and the 11 grief reaction subscales did not reach statistical significance.
Finally, significant differences were indicated among survivors on 18 of the 55 GEQ grief reaction items. Suicide survivors were clearly differentiated from the others on eight items: feeling uncomfortable revealing the cause of death (item 371, feeling embarrassed about the death (item 381, feeling like the spouse chose to leave the survivor (item 411, feeling like the spouse never considered what the death might do to the survivor (item 44), feeling that the spouses death was a rejection (item 45), wondering about the spouses motivation for not living longer (item 511, feeling that the spouse was somehow getting even by dying (item 52), and telling someone that the cause of death was something other than what it was (item 54).
Suicide survivors were differentiated from survivors of accidental death and expected natural death on one item: feeling that an early sign of the impending death was missed (item 34). Unexpected-natural- death survivors were also significantly different from natural-death survivors on this item.
Suicide survivors were differentiated from survivors of unexpected and expected natural death on three items: feeling that the death was a negative reflection upon the survivor or family (item 24), feeling that the death was a deliberate abandonment (item 431, and feeling that the survivor could have prevented the death (item 53).
Suicide survivors were differentiated from only the expected-natural- death survivors on six items: questioning why the spouse had to die
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(item ll), feeling like others were wondering about the couples personal problems (item 22), feeling like others blamed the survivor for the death (item 23), wishing that certain things had not been done or spoken during the marriage (item 27), feeling that being a different person would have prevented the spouses death (item 321, and feeling that marital problems contributed to the death (item 35). The accidental- death group was also significantly different from the natural-death group on questioning why the spouse had to die (item 11).
On the remaining 37 items, the differences among all survivors did not reach statistical significance. Except for items 11 and 34, the dif- ferences among the survivors of accidental death, unexpected natural death, and expected natural death on the 55 GEQ grief items did not reach statistical significance.
Although a number of grief measurements have been developed, there currently is no standardized instrument regularly used in the study of grief in general, or in the study of suicide bereavement more spe- cifically. The need for such an instrument has long been recognized.
Using the GEQ allows for a response to two criticisms of current suicide bereavement research- the use of nonstandardized instruments and the lack of operational definitions for the measured reactions. In addition, the lack of control groups, a third common criticism, has received attention (Barrett, 1987) in the development of the GEQ.
Beyond these important considerations, the GEQ offers the following benefits:
1. It is a self-administered questionnaire that inquires about sensitive grief experiences in a nonobtrusive manner. It was routinely completed in less than 20 minutes by the survivors and proved to be a useful framework for conducing interviews with them.
2. It was constructed specifically to measure individual grief elements common within the experience of suicide survivors. This permits straightforward comparisons of suicide bereavement with other be- reavement forms.
3. Analysis by strict statistical methods (two-way analyses of variance) demonstrates the GEQs capability to differentiate survivors by cause of death.
4. The moderately high to high internal consistency reliabilities ob- tained in analysis of the GEQ total scale and its 11 subscales indicate both that its design and use are appropriate for its intended purpose and that it has further research practicality.
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Retesting with these subjects was contrary to their agreement to participate in this research. Therefore, no test-retest correlations are available. Extending the use of the GEQ to various groups of survivors in longitudinal research formats will provide additional information and allow for test-retest options.
5. Apart from the reliability estimates, evidence supporting the content and face validity of the instrument was available. The remarks of survivors as they completed the questionnaire indicated an ability on their part to identify the underlying intent of many of the subscales.
6. The GEQ might prove useful in the clinical identification of survivors experiencing severe or complicated bereavement reactions. It is as yet undetermined whether a high Total Grief Reactions score or a high Self-Destructive Behavior subscale score has predictive value in regard to future suicides among survivors. Further research, as suggested by McIntosh (1987), might provide this information.
The GEQ has demonstrated productive and practical utility. Its con- tinued use, both in research efforts investigating grief and in clinical settings where bereaved individuals are likely to seek support, is en- couraged.
APPENDIX GRIEF EXPERIENCE QUESTIONNAIRE
In completing the items of this questionnaire, please think back upon your experiences since the death of your spouse. You may find that some of the questions asked do not apply to you. For these, you should circle Never. For those experiences that you do remember, please try to determine how long they lasted. You may find that some were brief, while some lasted a long time before they finally stopped. Other items you may find that you are still experiencing. After considering if an item applies to you, try to judge, as best you can, how frequently you experienced it in the first 2 years after your spouses death. Use these answers unless otherwise indicated:
Almost Never Rarely Sometimes Often Always
1 2 3 4 5
Since the death of your spouse, how often did you: 1. Think that you should go see a doctor? 2. Experience feeling sick?
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3. Experience trembling, shaking, or twitching? 4. Experience light-headedness, dizziness, or fainting? 5. Experience nervousness? 6. Think that people were uncomfortable offering their condolences
7. Avoid talking about the negative or unpleasant parts of your mar-
8. Feel like you just could not make it through another day? 9. Feel like you would never be able to get over the death?
10. Feel anger or resentment toward your spouse after the death? 11. Question why your spouse had to die? 12. Find you couldnt stop thinking about how the death occurred? 13. Think that your spouses time to die had not yet come? 14. Find yourself not accepting the fact that the death happened? 15. Try to find a good reason for the death? 16. Feel avoided by friends? 17. Think that others didnt want you to talk about the death? 18. Feel like no one cared t o listen to you? 19. Feel that neighbors and in-laws did not offer enough concern? 20. Feel like a social outcast? 21. Think people were gossiping about you or your spouse? 22. Feel like people were probably wondering about what kind of personal
problems you and your spouse had experienced? 23. Feel like others may have blamed you for the death? 24. Feel like the death somehow reflected negatively on you or your
25. Feel somehow stigmatized by the death? 26. Think of times before the death when you could have made your
27. Wished that you hadnt said or done certain things during your
28. Feel like there was something very important you wanted to make
29. Feel like maybe you didnt care enough about your spouse? 30. Feel somehow guilty after the death of your spouse? 31. Feel like your spouse had some kind of complaint against you at
32. Feel that, had you somehow been a different person, your spouse
33. Feel like you had made your spouse unhappy long before the death? 34. Feel like you missed an early sign which may have indicated to
you that your spouse was not going to be alive much longer? 35. Feel like problems you and your spouse had together contributed
to an untimely death?
spouses life more pleasant?
up to your spouse?
the time of the death?
would not have died?
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36. 37. 38. 39.
40. 41. 42. 43.
47. 48. 49. 50. 51. 52. 53. 54.
Avoid talking about the death of your spouse? Feel uncomfortable revealing the cause of the death? Feel embarrassed about the death? Feel uncomfortable about meeting someone who knew you and your spouse? Not mention the death to people you met casually? Feel like your spouse chose to leave you? Feel deserted by your spouse? Feel that the death was somehow a deliberate abandonment of you? Feel that your spouse never considered what the death might do to you? Sense some feeling that your spouse had rejected you by dying? Feel like you just didnt care enough to take better care of your- self? Find yourself totally preoccupied while you were driving? Worry that you might harm yourself? Think of ending your own life? Intentionally try to hurt yourself? Wonder about your spouses motivation for not living longer? Feel like your spouse was somehow getting even with you by dying? Feel that you should have somehow prevented the death? Tell someone that the cause of death was something different than what it really was? Feel that the death was a senseless and wasteful loss of life?
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