کاوش سوگ والدین: ترکیب اقدامات کمی و کیفی

Study design The sampling frame for the study consisted of 74 respondents reporting that they experienced the death of a living child. With the exception of standard demographic measures, the quantitative and qualitative items in the instrument were designed specifically for this project. The content validity of the instrument was assessed by a panel of experts on grief. Key quantitative items related to child loss and grief were formatted with between three- and five-point ordinal answer categories. Two types of qualitative items were developed by the authors. The reliability of the instrument designed for this study was not determined.

Results Intensity of Loss Virtually, all respondents reported feeling intense loss in the weeks that followed their child's death (90.5%); most reported that, over time, those feelings became less intense. However, half the sample reported that the intensity level of their current feelings of loss varies, thus defying one descriptor of intensity. Social Support With regard to social support, most of the parents (86%) reported that most people who knew them and knew about the death reached out to them, with only 10% reporting that they felt shunned. However, when asked if people tended to ignore them after the death, one quarter gave an affirmation. Respondents were also asked about the extent to which several resources helped them during the first difficult year after the death of their child. Parents most frequently stated that their own inner strength and the support of family helped “a lot” (73% and 62%, respectively). The support of friends, spirituality or religion, and working were reported to have helped “a lot” by smaller but still notable proportions of the sample (51%, 44%, and 40%, respectively). During the year after death, support groups and individual psychological counseling and therapy were viewed by few parents as having helped “a lot” (5% and 7% respectively). Perceptions Regarding the Continuation of Grief Parents were asked directly about the continuing nature of their grief using the following item developed and pretested specifically for this study: “People have different ideas about grief after the death of a child. Some people say it is a process that has an ending, and others believe that grief never ends. How about you? Would you say your grief has come to an end, or that your grief continues?” A key finding is shown in Table 2: 63.5% of parents, the majority, believe that their grief continues and 36.5% report that their grief had come to an end. Table 2. Comparing Those Whose Grief had Ended With Those Whose Grief Continues With Other Grief-Related Variables All responses Grief had ended Grief continues P Would you say your grief has come to an end or that it continues? 36.5% 63.5% Some people say parents must eventually let go of a child who died (n = 73) Have already let go [n (%)] 37 (50.7) 21 (80.8) 16 (34.0) .000 Will eventually let go [n (%)] 4 (5.5) 1 (3.8) 3 (6.4) Will never let go [n (%)] 32 (43.8) 4 (15.4) 28 (59.6) How much of yourself continues to feel connected to your child? (n = 73) All/Most [n (%)] 22 (30.1) 2 (7.7) 20 (42.6) .001 Some/A little [n (%)] 47 (64.4) 21 (80.8) 26 (55.3) None [n (%)] 4 (5.5) 3 (11.5) 1 (2.1) These days, how often do you think of your child? (n = 74) Constantly [n (%)] 2 (2.7) 0 (0.0) 2 (4.3) .010 Often/Sometimes [n (%)] 58 (78.4) 18 (66.7) 40 (85.1) Rarely/Never [n (%)] 14 (18.9) 9 (33.3) 5 (10.6) Some people feel that part of them is missing because their child died (n = 60) All/Most is missing [n (%)] 4 (6.7) 0 (0.0) 4 (9.8) .089 Some/A little is missing [n (%)] 48 (80.0) 15 (78.9) 33 (80.5) None is missing [n (%)] 8 (13.3) 4 (21.1) 4 (9.8) What is the degree of loss you currently feel regarding your child's death? (n = 73) Intense/Moderate [n (%)] 13 (18) 1 (4) 12 (26) .002 Mild [n (%)] 19 (26) 11 (42) 8 (17) None [n (%)] 4 (5) 4 (15) 0 (0.0) Varies [n (%)] 37 (51) 10 (37) 27 (57) Note. P values were calculated with χ2. Percentages are column percentages. Table options Other Feelings of Loss and the Continuation of Grief To more fully understand the perception and experience of lasting grief, the authors compared parents whose grief had ended with those whose grief continues on a series of other characteristics. The first variable set consists of other feelings of loss, thus providing a preliminary test of the construct validity of the item. As shown in Table 2, the two groups of parents are compared with regard to “letting go” of their deceased child, the level of connection they currently feel with their child, the frequency with which they currently think about him or her, the proportion of themselves that they feel is currently “missing,” and the degree (intensity) of loss they currently feel. On every measure, the group of parents who believe that their grief continues is significantly different from the group of those whose grief had ended, in the expected direction. For example, whereas 34% of those whose grief continues state that they have let go of their child, most (81%) of those whose grief had ended feel that they have done so. Similarly, 43% of those whose grief continues but only 8% of those whose grief had ended report that all or most of them still feel connected to their child. It is interesting to note that most (81%) of those whose grief had ended still feel some connection to their child. Similarly, parents whose grief continues are more likely than those whose grief had ended to think about their child, to feel that part of them is missing at present, and to experience strong feelings of loss at the present time. In contrast, it should be noted that overall life satisfaction does not distinguish the two groups of parents. Indeed, more than 90% of grief enders and grief continuers report that they are very or somewhat satisfied with their life these days. Although the former subjects are more likely to report that they are very satisfied, the difference is not statistically significant (P = .378, not shown). Characteristics of Child Death and the Continuation of Grief The authors examined whether circumstances surrounding a child's death, as well as time since the death, were associated with parents' current feeling regarding the continuation or end of their grief. Table 3 presents these data with mixed results. A higher proportion of those whose grief had ended had children die of congenital problems and prematurity/birth complications (primarily babies). Indeed, more than half of this group (59%), compared with approximately one third of those whose grief continues (32%), had a baby die at an age younger than 1 year. However, this difference only approaches statistical significance and should be interpreted cautiously. Finally, it should be noted there is no significant relationship between the grief continuation/end variable and time since the death among those who lost a child who was older than 1 year. Table 3. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Circumstances of Child Death All responses Grief had ended Grief continues P Cause of death (n = 73) Congenital [n (%)] 9 (12.3) 3 (23.1) 3 (6.4) .006 Prematurity/Birth complications [n (%)] 19 (26.0) 9 (34.6) 10 (21.3) Unexpected [n (%)] 29 (39.7) 8 (30.8) 21 (44.7) Illness [n (%)] 16 (21.9) 3 (11.5) 13 (27.7) Average time since death among those whose child was older than 1 year Mean years since death 18.79 (n = 43) 20.09 (n = 11) 18.34 (n = 32) .650 Age of child (n = 74) ≤1 year [n (%)] 31 (41.9) 16 (59.3) 15 (31.9) .085 >1 year–<21 years [n (%)] 20 (27.0) 4 (14.8) 16 (34.0) ≥21 years [n (%)] 23 (31.1) 7 (25.9) 16 (34.0) Note. P values for expected versus unexpected death were calculated with χ2. P values for (a) child's age at death and (2) years since death were calculated with t test. Percentages are column percentages. Table options Insight from the open-ended items reinforces the notion that circumstances surrounding the death do shape the experience of parental grief. For example, death by suicide was found to add guilt and anger to parental grief, making it complicated for parents to discuss their grief. Other examples include the following: death by homicide had prevented a parent from forgiving the murderer who had shown no remorse; death from profound chronic illness had afforded the parent, while missing her child, a measure of relief by sparing the child prolonged suffering; death of an adult child suffering from mental illness left a parent feeling that if she had lived closer to him she could have secured care that might have saved his life; a parent whose young child died a painful death from cancer expressed relief in releasing him at death as the end to his suffering. Finally, particularly strong regret was expressed by parents who were unable to see or touch their infants. Another parent stated that she was encouraged not to see her deceased child by her spouse, physician, and pastor and now wonders why she ever agreed. Continuation of Grief and Other Parental Characteristics Although it is widely recognized that a child's death has a profound impact on parents, this impact has not been well operationalized. Parents in the study were asked whether they felt their child's death had impacted several specific areas of their lives, including their other roles and relationships as well as internal characteristics. These data are presented in Table 4 and Table 5 for the entire sample and separately for parents whose grief had ended and those whose grief continues. Table 4. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Life and Personality Changes Owing to Death of Child All responses Grief had ended Grief continues P How has your own health changed since the death of your child? (n = 43) Better due to death [n (%)] 0 (0.0) 0 (0.0) 0 (0.0) .226 About the same [n (%)] 37 (86.0) 16 (94.1) 21 (80.8) Worse due to death [n (%)] 6 (14.0) 1 (5.9) 5 (19.2) Total [n (%)] 43 (100.0) 17 (100.0) 26 (100.0) How has your sex life changed since the death of your child? (n = 30) Better due to death [n (%)] 1 (3.3) 0 (0.0) 1 (5.6) .107 About the same [n (%)] 23 (76.7) 12 (100.0) 11 (61.1) Worse due to death [n (%)] 6 (20.0) 0 (0.0) 6 (33.3) Total [n (%)] 30 (100.0) 12 (100.0) 18 (100.0) How has your relationship with your spouse/partner changed since the death of your child? (n = 38) Better due to death [n (%)] 5 (13.2) 1 (6.7) 4 (17.4) .365 About the same [n (%)] 31 (81.6) 13 (86.7) 18 (78.3) Worse due to death [n (%)] 2 (5.3) 1 (6.7) 1 (4.3) Total [n (%)] 38 (100.0) 15 (100.0) 23 (100.0) How has your relationship with surviving children changed since the death of your child? (n = 42) Better due to death [n (%)] 16 (38.1) 2 (13.3) 14 (51.9) .007 About the same [n (%)] 25 (59.5) 12 (80.0) 13 (48.1) Worse due to death [n (%)] 1 (2.4) 1 (6.7) 0 (0.0) Total [n (%)] 42 (100.0) 15 (100.0) 27 (100.0) How has your involvement with friends and the community changed since the death of your child? (n = 46) Better due to death [n (%)] 5 (10.9) 0 (0.0) 5 (15.6) .647 About the same [n (%)] 38 (82.6) 14 (100.0) 24 (75.0) Worse due to death [n (%)] 3 (6.5) 0 (0.0) 3 (9.4) Total [n (%)] 46 (100.0) 14 (100.0) 32 (100.0) How has your employment productivity changed since the death of your child? (n = 23) Better due to death [n (%)] 4 (17.4) 0 (0.0) 4 (26.7) .794 About the same [n (%)] 16 (69.6) 8 (100.0) 8 (53.3) Worse due to death [n (%)] 3 (13.0) 0 (0.0) 3 (20.0) Total [n (%)] 23 (100.0) 8 (100.0) 15 (100.0) Note. P values were calculated with χ2. Percentages are column percentages. Table options Table 5. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Perceived Characteristics of Self All responses Grief had ended Grief continues P Long-lasting effects on respondents include their feeling stronger (n = 72) True [n (%)] 58 (80.6) 23 (85.2) 35 (77.8) .442 False [n (%)] 14 (19.4) 4 (14.8) 10 (22.2) Long-lasting effects on respondents include their feeling more vulnerable (n = 71) True [n (%)] 41 (57.7) 12 (46.2) 29 (64.4) .133 False [n (%)] 30 (42.3) 14 (53.8) 16 (35.6) Long-lasting effects on respondents include their feeling more depressed (n = 70) True [n (%)] 19 (27.1) 2 (7.7) 17 (38.6) .005 False [n (%)] 51 (72.9) 24 (92.3) 27 (61.4) Long-lasting effects on respondents include their feeling more sensitive (n = 73) True [n (%)] 60 (82.2) 21 (77.8) 39 (84.8) .450 False [n (%)] 13 (17.8) 6 (22.2) 7 (15.2) Long-lasting effects on respondents include their feeling more angry (n = 70) True [n (%)] 11 (15.7) 0 (0.0) 11 (25.0) .005 False [n (%)] 59 (84.3) 26 (100.0) 33 (75.0) Long-lasting effects on respondents include their feeling more hopeless (n = 70) True [n (%)] 8 (11.4) 0 (0.0) 8 (18.2) .021 False [n (%)] 62 (88.6) 26 (100.0) 36 (81.8) Long-lasting effects on respondents include their feeling more courageous (n = 70) True [n (%)] 43 (61.4) 17 (65.4) 26 (59.1) .601 False [n (%)] 27 (38.6) 9 (34.6) 18 (40.9) Long-lasting effects on respondents include their feeling more fearful (n = 71) True [n (%)] 22 (31.0) 5 (19.2) 17 (37.8) .103 False [n (%)] 49 (69.0) 21 (80.8) 28 (62.2) Long-lasting effects on respondents include their feeling more detached (n = 69) True [n (%)] 11 (15.9) 2 (7.7) 9 (20.9) .145 False [n (%)] 58 (84.1) 24 (92.3) 34 (79.1) Long-lasting effects on respondents include their feeling more connected to the past than the present (n = 71) True [n (%)] 2 (2.8) 0 (0.0) 2 (4.4) .276 False [n (%)] 69 (97.2) 26 (100.0) 43 (95.6) Long-lasting effects on respondents include their feeling more creative (n = 68) True [n (%)] 21 (30.9) 6 (26.1) 15 (33.3) .541 False [n (%)] 47 (69.1) 17 (73.9) 30 (66.7) Note. P values were calculated with χ2 (two tailed). Percentages are column percentages. Table options As shown in Table 4, the modal response of the sample overall was that their other relationships, health, and community/work involvement stayed the same after the death of their child. This pattern was most pronounced among those whose grief had ended: 80% or more of that group gave the “stayed the same” response for every area discussed. Although the “stayed the same” response was also the modal one among grief continuers, they displayed more variability in their answers. For example, grief continuers were somewhat more likely than enders to report changes in their own health and sex life (worse), relationship with spouse and living children (better), and involvement with community/work productivity (both better and worse). The only statistically significant difference between the two groups was in reported changes in their relationships with surviving children. This area was described as changed by more than half of the grief continuers, and all of them rated that relationship as better. This pattern was reinforced in the qualitative data. When asked if their child's death affected their relationships with other children in the family, 29 respondents described, in an open-ended question, a continuum of reactions including difficulty loving their other children, being anxious and guarded in their relationships, and experiencing a heightened sense of love and attachment with the need to protect them from harm. Qualitative findings from the open-ended items are illustrative and increase understanding of other life changes related to child death. Nearly half the sample (n = 34) reported a wide range of changes, including strained marital relationships, reduced communication with spouses/partners, and significant distancing resulting in divorce. Some reported the strong desire to replace their deceased child. Others reported feeling less competent and less in control whereas some felt stronger, bolder, more sensitive, and more spiritual. Thirteen respondents described the transforming nature of their grief, reflected in changed careers, volunteer efforts, and demonstrations of greater compassion. With regard to perceived characteristics of self, as shown in Table 5, most of the sample overall report that the experience of child death has made them stronger (81%), more sensitive (82%), and more courageous (61%). Of note, grief enders and continuers are quite similar along these dimensions, with most of them reporting these lasting feelings. At the same time, a significantly higher proportion of those whose grief continues report lasting feelings of depression and anger (and, to a lesser extent, vulnerability, hopelessness, and fear) as compared with their counterparts whose grief had ended. Once again, however, it is important to note that most continuers—between 61% and 82%—do not report such feelings. Grief continuers are more likely to report that they have become more spiritual than the grief enders (not shown). Other factors in respondents' culture and backgrounds were explored qualitatively. Important influences noted by 55 respondents that shaped or gave perspective to their experience of grief were clustered into three broad categories: family of origin experience with death, religion and spirituality, and support from others. Many respondents referred to the significance of their nursing education and clinical experience/expertise in helping them with the loss and the associated grief. Images as Measures of Grief Based on clinical experience caring for grieving families subsequent to child death, the authors developed innovative qualitative measures in an attempt to describe with more texture and depth the emotions of parental grief. These measures were conceived as images representing the experience of grief, including an erupting volcano; a well into which one descends; a tree that has lost a limb; and, finally, a hollow or empty space. For each qualitative measure, there was a dichotomous item that asked, “Has this image of grief applied to you since the death of your child?” In addition, a number of open-ended questions provided an opportunity for respondents to describe freely the varying ways their lives were changed by their child's death. Three of the images (a volcano that could erupt, descending into a well, and feeling like their tree of life has lost a limb) had meaning only for a minority of parents, although nearly one quarter responded in the affirmative to the latter construct. For these images, the only difference between parents whose grief continues and those whose grief had ended was observed for the construct of descending into a well, with the former group of parents more likely to feel that the image applied to their experience of grief (21% vs. 4%, table not shown). It should be noted, however, that the relationship only approaches statistical significance (P = .058). In contrast, the fourth image, a hollow or empty space inside, was described by most (∼75%) with regard to their child's death. There was no difference observed between grief continuers and enders related to this last image. Moreover, multiple expressions of emptiness were reported by 45 respondents as a hollow or empty space, specifically describing a hole in the fabric of life, a void, a broken place in the heart forever, empty arms and belly, and an empty chair. Associated emotions included loneliness, never being able to feel pure joy again, hopelessness, an emptiness that can never be filled or recovered, and despair. This critical qualitative finding illustrates the meaning of the quantitative item of a hollow or empty space inside, regardless of whether grief continues or ends, the age of the child at death, and the cause of death. Parents were asked if other images had meaning; 41 responded with a plethora of their own images that seemed to enhance connectedness to their child in a highly individualized fashion. In this way, images are consoling and represent emotions of grief. Some of the images offered included a beautiful child happy in heaven or waiting in heaven to be reunited, angels and cherubs playing in the clouds, an empty space at the table, the absence of light, a soul joining other souls, a broken heart, and being connected to other women past and present who had experienced child death. Parents were asked to share any other information about the death of their child or their grief. Their views of grief are like snapshots taken at a point in time. The survey captures their emotions and reactions at a particular point moment in their lives. Some took the opportunity to express the ways they keep connected to their child by creating memorials, saying goodnight to a photograph, writing poetry, recognizing the need to nurture living things such as taking care of sick birds and animals, smelling the child's hair as an olfactory memory, and reliving the day the child died by wishing to undo what happened and hoping the child could live. There was also recognition that certain songs, hymns, and places intensify the pain of loss. Parents described ways they found to believe that their child was all right in death. A final qualitative survey item asked parents about the word acceptance and its meaning in their grief for their deceased children. The word acceptance triggered two types of responses: one that death must be accepted because it cannot be changed and another that acceptance is not possible because the loss is intolerable. In the first instance, acceptance refers to the inevitability of death because the child's condition was incompatible with life. Acceptance means resignation to the fact of death, an acknowledgement of the finality of death. Implied is the knowledge that the child cannot come back. Acceptance was viewed as active, in contrast to passive resignation. In the second instance, the refusal to accept the death was described as “living next to it” and as not being able to accept but to grieve endlessly. Acceptance has many facets: dealing with the reality and inevitability of death, the necessity of going on without one's child, a measure of God's will, and the inability to accept the death of one's child.