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Exploring Parental Grief: Combining Quantitative and Qualitative Measures
Exploring Parental Grief: Combining Quantitative and Qualitative Measures Joan Arnold, Penelope Buschman Gemma, and Linda F. Cushman
Purpose. This study explores parental grief on the death of a child of any age. 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. This survey of parents who experienced the death of a child during their lifetime explores and extends current understanding of the complex emotional response of grief. The study offers empirical support for the notion of grief as ongoing in the life of a parent whose child had died. The findings have significant implications for further clinical research supporting studies to explore commonalities in the experience of grieving families regardless of the cause of and time since the death of their child. In addition, the findings may serve to inform the development and provision of services for bereaved parents. D 2005 Elsevier Inc. All rights reserved.
G
RIEVING IS A universal human experience. Historically, grief has been defined as a response to loss and death that is organized by sequential steps, stages, or phases and bound by the dimension of time, requiring closure for resolution (Kubler-Ross, 1969; Lindemann, 1944; Worden, 1982). In this perspective, grief is a quantifiable, episodic event related to the crises of loss and death, described as a human response to these events (Parad, 1965; Worden, 1982) and characterized as a temporary condition, requiring crisis intervention, treatment for resolution, and emotional disengagement from the lost object to overcome it (Bowlby, 1961; Engel, 1961, 1964; Freud, 1957, 1963; Parkes, 1965, 1975). The experience of clinicians providing care for the bereaved has not been consistent with this view of grief as an episode that must come to an end through resolution (Arnold, 1995, 1996; Benoliel,
1983; Cody, 1991; Cowles & Rodgers, 1991, 2000; Davies, 2004; Klass, Silverman, & Nickman, 1996; Lindgren, Burke, Hainsworth, & Eakes, 1992; Martocchio, 1985; McClowry, Davies, May, Kulenkamp, & Martinson, 1987; Miles & Crandall, 1983; Miles & Demi, 1986; Murphy, 1983; Pilkington, 1993). Grief is described as paramount in the lives of bereaved parents; grieving, as a process of maintaining connectedness (Arnold & Gemma, From The College of New Rochelle School of Nursing, New Rochelle, NY 10805, Columbia University School of Nursing; and Columbia University Mailman School of Public Health. Address reprint requests to Joan Arnold, PhD, RN, The College of New Rochelle School of Nursing, 29 Castle Place, New Rochelle, NY 10805. E-mail address: [email protected] B 2005 Elsevier Inc. All rights reserved. 0883-9417/1801-0005$30.00/0 doi:10.1016/j.apnu.2005.07.008
Archives of Psychiatric Nursing, Vol. 19, No. 6 (December), 2005: pp 245–255
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1983, 1994; Davies, 2004; Hutti, 1984; Martinson, 1992; Miles, 1985; Miles & Demy, 1986; Uren & Wastell, 2002). Child death is viewed by parents as an empty space within (McClowry et al., 1987). In a landmark study comparing adult bereavement following the death of a parent, spouse, and child, Sanders (1980) found significantly higher intensities of grief among those surviving the death of a child and subsequently developed an integrated theory detailing phases of grief (Sanders, 1989). Following the lead of such research, the authors seek to expand and support the understanding of parental grief. PURPOSE
This study explores the ongoing nature of parental grief. Few empirical studies have examined this evolving view of the grieving process with a combination of quantitative and qualitative measures. Moreover, this study includes parents whose child had died regardless of the years that had passed since the death, the age of the child at the time of death, and the cause of the child’s death. STUDY DESIGN AND METHODS
This is a cross-sectional, retrospective, selfadministered survey by mail. An adaptation of the Dillman method was used to maximize the respondents’ understanding of and participation in the project (Dillman, 1978). The primary eligibility requirement was having experienced the death of a natural-born or adopted child. Data Collection An introductory letter with a self-addressed stamped postcard was sent to the entire sampling frame, which was composed of 5,211 nursing alumni (described in the Sample section). Among them, 74 respondents (72%) reported that they experienced the death of a living child and 29 (28%) reported that they experienced a stillbirth. The 74 respondents constitute the sample population of this study. Instruments The study used a new survey instrument designed to explore the premises that child death has lasting effects on parents and that parental grief is an ongoing process (Arnold, Gemma, & Cushman, 2000). In addition to standard demographic items (17 items), the questionnaire included
quantitative (52 items) as well as qualitative (11 items) measures of grief, loss, and related variables. Key quantitative items related to child loss and grief were formatted with between threeand five-point ordinal answer categories (e.g., intense, moderate, mild, and no feelings of loss). Qualitative items allowed respondents to provide details in their own words after answering a precoded item and to describe how specific images of grief related to their experiences of loss. A panel of experts on grief reviewed the quantitative and qualitative items for content and completeness. Two rounds of pretesting were conducted. Finally, the construct validity of the key outcome variable (whether respondents felt that their grief had ended or continues) received preliminary support in the bivariate analysis. The reliability of the instrument was not tested. Analysis All quantitative data were entered into an SPSS data file, cleaned for wild codes and inconsistencies, and analyzed by the authors using standard bivariate techniques. All associations should be interpreted as preliminary, owing to the sample size. Qualitative data were analyzed by the clinical authors, who independently read all open answers and developed a coding scheme. Once this was accomplished, coded domains were compared and reconciled. Sample The sampling frame for the study consisted of the comprehensive list of members of the Columbia University–Presbyterian Hospital School of Nursing Alumni Association (1926 –2000). By design, all parents in the sample had experienced the death of a child at some point during their adult lives. Sociodemographic characteristics are summarized in Table 1. Causes of Child Death Specific causes of death were wide ranging in this sample, reflecting all the common as well as a number of rare reasons for death in infancy, childhood, adolescence, and adulthood. For analytic purposes, causes of death were assigned to one of four categories: congenital (12%), prematurity/ birth-related complications (26%), unexpected (40%), and illness (22%). In the congenital
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
Table 1. Sociodemographic Characteristics of the Sample Race White Sex Female Age Mean age Age range Education Baccalaureate degree or higher Completed some graduate study or graduate degree Marital status Legally married Widowed Divorced Religion Protestant Very/Somewhat religious Births Live births Two–four live births Nature of work in the past year Employed Volunteered Household composition Two individuals Alone Between three and five individuals Income z$75,000 $35,000–74,999 b$35,000
99% 97% 66 years 42–90 years 84% 54%
68.5% 36% 35%
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regarding the most recent death. Approximately 40% of the sample reported that their child had died at the age of 1 year or younger. The age at the time of child death ranged from 0 to 48 years (M = 13 years). The mean age of children older than 1 year who died was 22 years. When asked if their child’s death was expected or not, 15% of the parents said that it was. The range of years since the child’s death was 1 year or less to 62 years. The mean number of years since the child’s death at the time of the survey was 24.4 years. The parents’ ages ranged from 22 to 80 years at the time of death (M = 42 years). RESULTS
59% 66% 1–10 74% 40% 84% 51% 31% 18% 45% 30% 25%
category, causes of death included congenital heart diseases, Down syndrome, metabolic renal disease, and multiple birth defects. The prematurity/ birth-related complications category encompassed hyaline membrane disease, RH incompatibility/ erythroblastosis, vasa previa, anencephaly, and atelectasis. Unexpected deaths were attributed to murder, suicide, drug overdose, drowning, horseback riding accident, car accident, being hit by a car, farm equipment accident, heat stroke during football practice, and Sudden Infant Death Syndrome. Illnesses causing death ranged from septic shock, medulloblastoma, non-Hodgkins lymphoma, brain tumor, leukemia, breast cancer, esophageal cancer, seizures, diabetes mellitus, and HIV/AIDS to complications related to cardiac surgery and cardiomyopathy. Characteristics Related to Child Death Six respondents had experienced the death of two children and were asked to discuss experiences
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 ba lot Q (73% and 62%, respectively). The support of friends, spirituality or religion, and working were reported to have helped ba lot Q 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 b a lot Q (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: bPeople have different ideas about grief after the
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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? Q 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. 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 bletting goQ 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 bmissingQ, 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
Table 2. Comparing Those Whose Grief had Ended With Those Whose Grief Continues With Other Grief-Related Variables All responses
Would you say your grief has come to an end or that it continues? Some people say parents must eventually let go of a child who died (n = 73) How much of yourself continues to feel connected to your child? (n = 73) These days, how often do you think of your child? (n = 74) Some people feel that part of them is missing because their child died (n = 60) What is the degree of loss you currently feel regarding your child’s death? (n = 73)
Have already let go [n (%)] Will eventually let go [n (%)] Will never let go [n (%)] All/Most [n (%)] Some/A little [n (%)] None [n (%)] Constantly [n (%)] Often/Sometimes [n (%)] Rarely/Never [n (%)] All/Most is missing [n (%)] Some/A little is missing [n (%)] None is missing [n (%)] Intense/Moderate [n (%)] Mild [n (%)] None [n (%)] Varies [n (%)]
Note. P values were calculated with v 2. Percentages are column percentages.
37 4 32 22 47 4 2 58 14 4 48 8 13 19 4 37
(50.7) (5.5) (43.8) (30.1) (64.4) (5.5) (2.7) (78.4) (18.9) (6.7) (80.0) (13.3) (18) (26) (5) (51)
Grief had ended
Grief continues
36.5%
63.5%
21 (80.8) 1 (3.8) 4 (15.4) 2 (7.7) 21 (80.8) 3 (11.5) 0 (0.0) 18 (66.7) 9 (33.3) 0 (0.0) 15 (78.9) 4 (21.1) 1 (4) 11 (42) 4 (15) 10 (37)
16 (34.0) 3 (6.4) 28 (59.6) 20 (42.6) 26 (55.3) 1 (2.1) 2 (4.3) 40 (85.1) 5 (10.6) 4 (9.8) 33 (80.5) 4 (9.8) 12 (26) 8 (17) 0 (0.0) 27 (57)
P
.000
.001
.010
.089
.002
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
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Table 3. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Circumstances of Child Death All responses
Grief had ended
Cause of death (n = 73) Congenital [n (%)] 9 (12.3) 3 (23.1) Prematurity/Birth complications [n (%)] 19 (26.0) 9 (34.6) Unexpected [n (%)] 29 (39.7) 8 (30.8) Illness [n (%)] 16 (21.9) 3 (11.5) 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) Age of child (n = 74) V1 year [n (%)] 31 (41.9) 16 (59.3) N1 year V 21 years [n (%)] 20 (27.0) 4 (14.8) z21 years [n (%)] 23 (31.1) 7 (25.9)
Grief continues
3 10 21 13
P
(6.4) (21.3) (44.7) (27.7)
.006
18.34 (n = 32)
.650
15 (31.9) 16 (34.0) 16 (34.0)
.085
Note. P values for expected versus unexpected death were calculated with v 2. P values for (a) child’s age at death and (2) years since death were calculated with t test. Percentages are column percentages.
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
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
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) 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) 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) 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) 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) 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) 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 v 2. Percentages are column percentages.
P
.226
.107
.365
.007
.647
.794
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ARNOLD ET AL.
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. 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
Table 5. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Perceived Characteristics of Self All responses
Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)]
on respondents include their 58 (80.6) 14 (19.4) on respondents include their 41 (57.7) 30 (42.3) on respondents include their 19 (27.1) 51 (72.9) on respondents include their 60 (82.2) 13 (17.8) on respondents include their 11 (15.7) 59 (84.3) on respondents include their 8 (11.4) 62 (88.6) on respondents include their 43 (61.4) 27 (38.6) on respondents include their 22 (31.0) 49 (69.0) on respondents include their 11 (15.9) 58 (84.1) on respondents include their 2 (2.8) 69 (97.2) on respondents include their 21 (30.9) 47 (69.1)
Grief had ended
Grief continues
feeling stronger (n = 72) 23 (85.2) 35 (77.8) 4 (14.8) 10 (22.2) feeling more vulnerable (n = 71) 12 (46.2) 29 (64.4) 14 (53.8) 16 (35.6) feeling more depressed (n = 70) 2 (7.7) 17 (38.6) 24 (92.3) 27 (61.4) feeling more sensitive (n = 73) 21 (77.8) 39 (84.8) 6 (22.2) 7 (15.2) feeling more angry (n = 70) 0 (0.0) 11 (25.0) 26 (100.0) 33 (75.0) feeling more hopeless (n = 70) 0 (0.0) 8 (18.2) 26 (100.0) 36 (81.8) feeling more courageous (n = 70) 17 (65.4) 26 (59.1) 9 (34.6) 18 (40.9) feeling more fearful (n = 71) 5 (19.2) 17 (37.8) 21 (80.8) 28 (62.2) feeling more detached (n = 69) 2 (7.7) 9 (20.9) 24 (92.3) 34 (79.1) feeling more connected to the past than the present (n = 71) 0 (0.0) 2 (4.4) 26 (100.0) 43 (95.6) feeling more creative (n = 68) 6 (26.1) 15 (33.3) 17 (73.9) 30 (66.7)
Note. P values were calculated with v 2 (two tailed). Percentages are column percentages.
P
.442
.133
.005
.450
.005
.021
.601
.103
.145
.276
.541
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
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 Tables 4 and 5 for the entire sample and separately for parents whose grief had ended and those whose grief continues. 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 bstayed the sameQ response for every area discussed. Although the bstayed the sameQ 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.
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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, bHas this image of grief applied to you since the death of your child?Q 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.
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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
ARNOLD ET AL.
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 bliving next to itQ 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. DISCUSSION
This survey of nurses who experienced the death of a child during their lifetime explores and extends our current understanding of the complex emotional response of grief. Specifically, the study offers empirical support for the notion of grief as ongoing in the life of a parent whose child had died. Tantamount to documenting that most parents believe that their grief continues at present are several noteworthy comparisons between this group and those parents who state that their grief had come to an end. First, the significant correlations between continuing grief and other feelings of loss are methodologically and substantively important. These associations are perhaps to be expected: it is not surprising that those who report that they are still grieving are more likely than others to feel they will never let go of their child, that part of them is missing, and that they are still strongly connected to their child. Similarly, although only a minority of current grievers report feeling that the death of their child made them more depressed, hopeless, or angry, the proportions were nonetheless higher than in the group of parents whose grief had ended. Thus, the suggested
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
construct validity of the newly devised bend/ continueQ is promising and should be explored with larger and more diverse samples of grieving parents. Cause of death as an influence on grief proved an interesting variable suggesting that parents whose child died in infancy may be more likely than others— in later years —to view their grief for that child to have ended rather than to be continuing. In contextualizing this finding, it is likely that most infant deaths in this sample occurred within a social and health care context that did not recognize the grief of parents, particularly parents grieving the death of an infant. Indeed, prior to the 1970s, when perinatal grief programs were developed, parents of a deceased baby were often isolated and discharged without any support service whatsoever. Parents were encouraged by health care professionals to suppress their grief or at least end it quickly. Thus, the authors interpret this association between infant death and grief ending as a potential methodological artifact. These data overall support the position that grief on the death of a child, regardless of the cause of death, the age of the child at death, and the time since the death, is universal and ongoing. These findings have implications for care of bereaved parents and can serve to guide evidence-based clinical practice. Overall, other comparisons between parents whose grief continues and those whose grief had ended reveal similarities that are striking and suggest that continuing grief can be and is combined with positive, life-affirming feelings. For example, parents whose grief continues are no more likely than their counterparts to feel that important areas of their lives (e.g., their health and involvement with friends and community) are worse due to their child’s death. Moreover, those who report that their grief continues are equally likely to feel that their child’s death made them stronger and more courageous and sensitive overall. Those who continue to feel grief are significantly more likely than others to report that the experience of child death has improved their relationship with their remaining children and made them more spiritual overall. In addition, parents who say their grief had ended are just as likely to respond to the image of a hollow or empty space inside and have similar levels of overall life satisfaction as those whose grief continues. These
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data yield a picture of continuing grief that includes more intense feelings of loss and related emotions than are reported by other parents, yet similar levels of courage, strength, sensitivity, and increased spirituality and improved relationships with surviving children. Those parents who said that their grief had ended also described ongoing feelings of loss and emptiness when responding to the open-ended questions. The authors view this disparity as a revealing paradox. LIMITATIONS
This study has several limitations that should be considered in interpreting the results. These limitations lie in three areas: sample, time frame, and omitted questions. First, the size of the sample limits generalizability. The sample is composed exclusively of nurses, predominately female, who graduated from one school of nursing, with very similar demographic characteristics. Second, the extended time frame for the study spans the entire 20th century. This was a time during which there were dramatic changes in services, policies, and procedures for childbirth and for hospitalized children and their families. Despite high infant and child mortality rates, perinatal and child death were devalued and parents were not given support for the expression of their grief. Data presented here are undoubtedly influenced and shaped by this milieu. A study with a shorter and more well-defined time frame would have standardized the effect of the milieu. Another limitation addresses a small number of respondents who stated that they wished there had been attention given to the somatic reactions of grief, surviving sibling reactions, parental dreams following the death of a child, and peer contact with other bereaved parents. It should be noted that this study did not collect in-depth data from parents who experienced miscarriage and stillbirth. Clearly, these profound losses need to be studied; however, at this juncture, the authors cannot generalize the findings to these losses. Furthermore, the impact of multiple child death was not explored. This also requires further investigation. SUMMARY
Overall, the findings of this study support an understanding of parental grief as complex, nonlinear, and ongoing. Correlates of continued
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parental grieving were identified and include feeling connected to one’s child, feeling they will not let go of their child, feeling part of them is missing, and experiencing a hollow empty space inside them. These emotions form a composite of parental grief. Findings suggest that grieving continues and can be associated with a myriad of other emotions, including those that are positive and life transforming. Continued grieving is highly individualistic and is associated with heightened and variable emotionality, life satisfaction, and improved relationships with surviving children. Furthermore, parental grief on the death of a child is profound, regardless of the years since the death, the age of the child at the time of death, and the cause of the child’s death. CALLOUTS b This research supports parental grief as a non-linear,
Suggested Clinical and Research Implications Recognize the importance of including child death as part of family history; Provide support services and resources on an ongoing basis over the life course of the family in all health care settings; Treat child death, regardless of age, cause, or time since the death, not only as a woman’s health concern in obstetric and gynecological care but also in pediatrics, men’s health, and geriatrics; Explore grief as an ongoing process with diverse sample populations of bereaved parents; Support studies involving loss of a child in pregnancy, at birth, in infancy, in childhood, in adolescence, and in adulthood to explore commonalities in the experience of grieving parents, regardless of the cause of death, the time since the death, or the age of the child
individualized, ongoing process.Q b Continued grieving can be associated with a wide range of emotions, many of which are positive and life transforming.Q b Parental grief is profound regardless of the years that have passed since death, the age of the child at the time of death, and cause of the childTs death.Q b The death of a child is a significant loss with implications for further clinical research and practice considerations.Q
ACKNOWLEDGMENTS
We are profoundly grateful to the following organizations for their support in funding the development of the Grief Over a Lifetime Instrument: Lucie S. Kelly Research Award Grant, Alpha Zeta Chapter of Columbia University, Sigma Theta Tau International (2000); Frances G. Crane Research Grant, Foundation of the New York State Nurses Association (2000); Nursing Research Grant, Columbia University–Presbyterian Hospital School of Nursing Alumnae Association (1998); Faculty Fund, The College of New Rochelle (1996–1997; 1999–2000). We also thank the Columbia University–Presbyterian Hospital School of Nursing Alumnae Association for providing access to the alumni who so graciously participated in this study. Our gratitude goes to Kimary Kulig, PhD, and Curt Malloy, MPH, for assisting with the computer-based analysis.
REFERENCES Arnold, J. (1995). A reconceptualization of the concept of grief for nursing: A philosophical analysis. Unpublished doctoral dissertation. New York University, New York. Arnold, J. (1996). Rethinking grief: Nursing implications for health promotion. Home Health Care Nurse, 14(10), 777 – 783. Arnold, J., & Gemma, P. B. (1983). A child dies. A portrait of family grief. Rockville, MD7 Aspen. Arnold, J., & Gemma, P. B. (1994). A child dies. A portrait of family grief. (2nd ed.). Philadelphia, PA7 Charles Press. Arnold, J., Gemma P. B., & Cushman, L. F. (2000). Grief over a lifetime: A study of the lifelong effects of child death on parents. Unpublished research instrument. Benoliel, J. Q. (1983). Nursing research on death, dying, and terminal illness: Development, present state, and prospects. In H. Werley, & J. Fitzpatrick (Eds.), Annual review of nursing research, I. New York7 Springer Publishing Company 101 – 130. Bowlby, J. (1961). Processes of mourning. International Journal of Psychoanalysis, 42, 317 – 340. Cody, W. K. (1991). Grieving a personal loss. Nursing Science Quarterly, 4(2), 61 – 68. Cowles, K. V., & Rodgers, B. L. (1991). The concept of grief: A foundation for nursing research and practice. Research in Nursing & Health, 14, 119 – 127. Cowles, K. V., & Rodgers, B. L. (2000). The concept of grief: An evolutionary perspective. In B. L. Rodgers, & K. A. Knafl (Eds.), Concept development in nursing: Foundations, techniques, and applications (pp. 103-118). Philadelphia7 Saunders. Davies, R. (2004). New understandings of parental grief: Literature review. Journal of Advanced Nursing, 46(5), 506 – 513. Dillman, D. A. (1978). Mail and telephone surveys: The total design method. New York7 Wiley.
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Engel, G. (1961). Is grief a disease? Psychosomatic Medicine, 23, 18 – 22. Engel, G. (1964). Grief and grieving. American Journal of Nursing, 64(9), 93 – 98. Freud, S. (1957). Mourning and melancholia. In J. Strachey (Ed.). The standard edition of the complete psychological works of Sigmund Freud, Vol. XIV, 243 – 258. London7 Hogarth Press. Freud, S. (1963). General psychological theory. New York7 Collier Books. Hutti, M. H. (1984). An examination of perinatal death literature: Implications for nursing practice and research. Health Care for Women International, 5, 387 – 400. Klass, D., Silverman, P., & Nickman, S. (1996). Continuing bonds: New understandings of grief. Washington, DC7 Taylor & Francis. Kubler-Ross, E. (1969). On death and dying. New York7 Macmillan. Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of Psychiatry, 101, 141 – 148. Lindgren, C. L., Burke, M. L., Hainsworth, M. A., & Eakes, G. G. (1992). Chronic sorrow: A lifespan concept. Scholarly Inquiry for Nursing Practice: An International Journal, 6(1), 27 – 40. Martinson, I. M. (1992). Response to bChronic sorrow: A lifespan conceptQ. Scholarly Inquiry for Nursing Practice: An International Journal, 6(1), 41 – 42. Martocchio, B. C. (1985). Grief and bereavement: Healing through hurt. Nursing Clinics of North America, 20(2), 327 – 341. McClowry, S. G., Davies, E. B., May, K. A., Kulenkamp, E. J., & Martinson, E. M. (1987). The empty space phenom-
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enon: The process of grief in the bereaved family. Death Studies, 11, 361 – 374. Miles, M. S. (1985). Emotional symptoms and physical health in bereaved parents. Nursing Research, 34(2), 76 – 81. Miles, M. S., & Crandall, E. K. B. (1983). The search for meaning and its potential for affecting growth in bereaved parents. Health Values: Achieving High Level Wellness, 7(1), 19 – 23. Miles, M. S., & Demi, A. S. (1986). Guilt in bereaved parents. In T. A. Rando (Ed.), Parental loss of a child. 97 – 118. Champaign, IL7 Research Press. Murphy, S. (1983). Theoretical perspectives on bereavement. In (Ed.). Advances in nursing theory development. 191– 206. Maryland7 Aspen Systems Corporation. Parad H. J. (Ed.), (1965). Crisis intervention: Selected readings. New York7 Family Services Association of America. Parkes, C. M. (1965). Bereavement and mental illness. British Journal of Medical Psychology, 38, 1 – 26. Parkes, C. M. (1975). Determinants of outcome following bereavement. Omega, 6, 303 – 323. Pilkington, F. B. (1993). The lived experience of grieving the loss of an important other. Nursing Science Quarterly, 6(3), 130 – 139. Sanders, C. M. (1980). A comparison of adult bereavement in the death of a spouse, child, and parent. Omega, 10, 303 – 322. Sanders, C. M. (1989). Grief: The mourning after: Dealing with adult bereavement. New York7 Wiley-Interscience. Uren, T. H., & Wastell, C. A. (2002). Attachment and meaningmaking in perinatal bereavement. Death Studies, 26, 279 – 308. Worden, J. W. (1982). Grief counseling and grief therapy: A handbook for the mental health practitioner. New York7 Spring Publishing Co.
Purpose. This study explores parental grief on the death of a child of any age. 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. This survey of parents who experienced the death of a child during their lifetime explores and extends current understanding of the complex emotional response of grief. The study offers empirical support for the notion of grief as ongoing in the life of a parent whose child had died. The findings have significant implications for further clinical research supporting studies to explore commonalities in the experience of grieving families regardless of the cause of and time since the death of their child. In addition, the findings may serve to inform the development and provision of services for bereaved parents. D 2005 Elsevier Inc. All rights reserved.
G
RIEVING IS A universal human experience. Historically, grief has been defined as a response to loss and death that is organized by sequential steps, stages, or phases and bound by the dimension of time, requiring closure for resolution (Kubler-Ross, 1969; Lindemann, 1944; Worden, 1982). In this perspective, grief is a quantifiable, episodic event related to the crises of loss and death, described as a human response to these events (Parad, 1965; Worden, 1982) and characterized as a temporary condition, requiring crisis intervention, treatment for resolution, and emotional disengagement from the lost object to overcome it (Bowlby, 1961; Engel, 1961, 1964; Freud, 1957, 1963; Parkes, 1965, 1975). The experience of clinicians providing care for the bereaved has not been consistent with this view of grief as an episode that must come to an end through resolution (Arnold, 1995, 1996; Benoliel,
1983; Cody, 1991; Cowles & Rodgers, 1991, 2000; Davies, 2004; Klass, Silverman, & Nickman, 1996; Lindgren, Burke, Hainsworth, & Eakes, 1992; Martocchio, 1985; McClowry, Davies, May, Kulenkamp, & Martinson, 1987; Miles & Crandall, 1983; Miles & Demi, 1986; Murphy, 1983; Pilkington, 1993). Grief is described as paramount in the lives of bereaved parents; grieving, as a process of maintaining connectedness (Arnold & Gemma, From The College of New Rochelle School of Nursing, New Rochelle, NY 10805, Columbia University School of Nursing; and Columbia University Mailman School of Public Health. Address reprint requests to Joan Arnold, PhD, RN, The College of New Rochelle School of Nursing, 29 Castle Place, New Rochelle, NY 10805. E-mail address: [email protected] B 2005 Elsevier Inc. All rights reserved. 0883-9417/1801-0005$30.00/0 doi:10.1016/j.apnu.2005.07.008
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1983, 1994; Davies, 2004; Hutti, 1984; Martinson, 1992; Miles, 1985; Miles & Demy, 1986; Uren & Wastell, 2002). Child death is viewed by parents as an empty space within (McClowry et al., 1987). In a landmark study comparing adult bereavement following the death of a parent, spouse, and child, Sanders (1980) found significantly higher intensities of grief among those surviving the death of a child and subsequently developed an integrated theory detailing phases of grief (Sanders, 1989). Following the lead of such research, the authors seek to expand and support the understanding of parental grief. PURPOSE
This study explores the ongoing nature of parental grief. Few empirical studies have examined this evolving view of the grieving process with a combination of quantitative and qualitative measures. Moreover, this study includes parents whose child had died regardless of the years that had passed since the death, the age of the child at the time of death, and the cause of the child’s death. STUDY DESIGN AND METHODS
This is a cross-sectional, retrospective, selfadministered survey by mail. An adaptation of the Dillman method was used to maximize the respondents’ understanding of and participation in the project (Dillman, 1978). The primary eligibility requirement was having experienced the death of a natural-born or adopted child. Data Collection An introductory letter with a self-addressed stamped postcard was sent to the entire sampling frame, which was composed of 5,211 nursing alumni (described in the Sample section). Among them, 74 respondents (72%) reported that they experienced the death of a living child and 29 (28%) reported that they experienced a stillbirth. The 74 respondents constitute the sample population of this study. Instruments The study used a new survey instrument designed to explore the premises that child death has lasting effects on parents and that parental grief is an ongoing process (Arnold, Gemma, & Cushman, 2000). In addition to standard demographic items (17 items), the questionnaire included
quantitative (52 items) as well as qualitative (11 items) measures of grief, loss, and related variables. Key quantitative items related to child loss and grief were formatted with between threeand five-point ordinal answer categories (e.g., intense, moderate, mild, and no feelings of loss). Qualitative items allowed respondents to provide details in their own words after answering a precoded item and to describe how specific images of grief related to their experiences of loss. A panel of experts on grief reviewed the quantitative and qualitative items for content and completeness. Two rounds of pretesting were conducted. Finally, the construct validity of the key outcome variable (whether respondents felt that their grief had ended or continues) received preliminary support in the bivariate analysis. The reliability of the instrument was not tested. Analysis All quantitative data were entered into an SPSS data file, cleaned for wild codes and inconsistencies, and analyzed by the authors using standard bivariate techniques. All associations should be interpreted as preliminary, owing to the sample size. Qualitative data were analyzed by the clinical authors, who independently read all open answers and developed a coding scheme. Once this was accomplished, coded domains were compared and reconciled. Sample The sampling frame for the study consisted of the comprehensive list of members of the Columbia University–Presbyterian Hospital School of Nursing Alumni Association (1926 –2000). By design, all parents in the sample had experienced the death of a child at some point during their adult lives. Sociodemographic characteristics are summarized in Table 1. Causes of Child Death Specific causes of death were wide ranging in this sample, reflecting all the common as well as a number of rare reasons for death in infancy, childhood, adolescence, and adulthood. For analytic purposes, causes of death were assigned to one of four categories: congenital (12%), prematurity/ birth-related complications (26%), unexpected (40%), and illness (22%). In the congenital
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
Table 1. Sociodemographic Characteristics of the Sample Race White Sex Female Age Mean age Age range Education Baccalaureate degree or higher Completed some graduate study or graduate degree Marital status Legally married Widowed Divorced Religion Protestant Very/Somewhat religious Births Live births Two–four live births Nature of work in the past year Employed Volunteered Household composition Two individuals Alone Between three and five individuals Income z$75,000 $35,000–74,999 b$35,000
99% 97% 66 years 42–90 years 84% 54%
68.5% 36% 35%
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regarding the most recent death. Approximately 40% of the sample reported that their child had died at the age of 1 year or younger. The age at the time of child death ranged from 0 to 48 years (M = 13 years). The mean age of children older than 1 year who died was 22 years. When asked if their child’s death was expected or not, 15% of the parents said that it was. The range of years since the child’s death was 1 year or less to 62 years. The mean number of years since the child’s death at the time of the survey was 24.4 years. The parents’ ages ranged from 22 to 80 years at the time of death (M = 42 years). RESULTS
59% 66% 1–10 74% 40% 84% 51% 31% 18% 45% 30% 25%
category, causes of death included congenital heart diseases, Down syndrome, metabolic renal disease, and multiple birth defects. The prematurity/ birth-related complications category encompassed hyaline membrane disease, RH incompatibility/ erythroblastosis, vasa previa, anencephaly, and atelectasis. Unexpected deaths were attributed to murder, suicide, drug overdose, drowning, horseback riding accident, car accident, being hit by a car, farm equipment accident, heat stroke during football practice, and Sudden Infant Death Syndrome. Illnesses causing death ranged from septic shock, medulloblastoma, non-Hodgkins lymphoma, brain tumor, leukemia, breast cancer, esophageal cancer, seizures, diabetes mellitus, and HIV/AIDS to complications related to cardiac surgery and cardiomyopathy. Characteristics Related to Child Death Six respondents had experienced the death of two children and were asked to discuss experiences
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 ba lot Q (73% and 62%, respectively). The support of friends, spirituality or religion, and working were reported to have helped ba lot Q 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 b a lot Q (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: bPeople have different ideas about grief after the
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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? Q 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. 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 bletting goQ 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 bmissingQ, 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
Table 2. Comparing Those Whose Grief had Ended With Those Whose Grief Continues With Other Grief-Related Variables All responses
Would you say your grief has come to an end or that it continues? Some people say parents must eventually let go of a child who died (n = 73) How much of yourself continues to feel connected to your child? (n = 73) These days, how often do you think of your child? (n = 74) Some people feel that part of them is missing because their child died (n = 60) What is the degree of loss you currently feel regarding your child’s death? (n = 73)
Have already let go [n (%)] Will eventually let go [n (%)] Will never let go [n (%)] All/Most [n (%)] Some/A little [n (%)] None [n (%)] Constantly [n (%)] Often/Sometimes [n (%)] Rarely/Never [n (%)] All/Most is missing [n (%)] Some/A little is missing [n (%)] None is missing [n (%)] Intense/Moderate [n (%)] Mild [n (%)] None [n (%)] Varies [n (%)]
Note. P values were calculated with v 2. Percentages are column percentages.
37 4 32 22 47 4 2 58 14 4 48 8 13 19 4 37
(50.7) (5.5) (43.8) (30.1) (64.4) (5.5) (2.7) (78.4) (18.9) (6.7) (80.0) (13.3) (18) (26) (5) (51)
Grief had ended
Grief continues
36.5%
63.5%
21 (80.8) 1 (3.8) 4 (15.4) 2 (7.7) 21 (80.8) 3 (11.5) 0 (0.0) 18 (66.7) 9 (33.3) 0 (0.0) 15 (78.9) 4 (21.1) 1 (4) 11 (42) 4 (15) 10 (37)
16 (34.0) 3 (6.4) 28 (59.6) 20 (42.6) 26 (55.3) 1 (2.1) 2 (4.3) 40 (85.1) 5 (10.6) 4 (9.8) 33 (80.5) 4 (9.8) 12 (26) 8 (17) 0 (0.0) 27 (57)
P
.000
.001
.010
.089
.002
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
249
Table 3. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Circumstances of Child Death All responses
Grief had ended
Cause of death (n = 73) Congenital [n (%)] 9 (12.3) 3 (23.1) Prematurity/Birth complications [n (%)] 19 (26.0) 9 (34.6) Unexpected [n (%)] 29 (39.7) 8 (30.8) Illness [n (%)] 16 (21.9) 3 (11.5) 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) Age of child (n = 74) V1 year [n (%)] 31 (41.9) 16 (59.3) N1 year V 21 years [n (%)] 20 (27.0) 4 (14.8) z21 years [n (%)] 23 (31.1) 7 (25.9)
Grief continues
3 10 21 13
P
(6.4) (21.3) (44.7) (27.7)
.006
18.34 (n = 32)
.650
15 (31.9) 16 (34.0) 16 (34.0)
.085
Note. P values for expected versus unexpected death were calculated with v 2. P values for (a) child’s age at death and (2) years since death were calculated with t test. Percentages are column percentages.
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
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
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) 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) 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) 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) 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) 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) 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 v 2. Percentages are column percentages.
P
.226
.107
.365
.007
.647
.794
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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. 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
Table 5. Comparing Those Whose Grief had Ended With Those Whose Grief Continues on Perceived Characteristics of Self All responses
Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)] Long-lasting effects True [n (%)] False [n (%)]
on respondents include their 58 (80.6) 14 (19.4) on respondents include their 41 (57.7) 30 (42.3) on respondents include their 19 (27.1) 51 (72.9) on respondents include their 60 (82.2) 13 (17.8) on respondents include their 11 (15.7) 59 (84.3) on respondents include their 8 (11.4) 62 (88.6) on respondents include their 43 (61.4) 27 (38.6) on respondents include their 22 (31.0) 49 (69.0) on respondents include their 11 (15.9) 58 (84.1) on respondents include their 2 (2.8) 69 (97.2) on respondents include their 21 (30.9) 47 (69.1)
Grief had ended
Grief continues
feeling stronger (n = 72) 23 (85.2) 35 (77.8) 4 (14.8) 10 (22.2) feeling more vulnerable (n = 71) 12 (46.2) 29 (64.4) 14 (53.8) 16 (35.6) feeling more depressed (n = 70) 2 (7.7) 17 (38.6) 24 (92.3) 27 (61.4) feeling more sensitive (n = 73) 21 (77.8) 39 (84.8) 6 (22.2) 7 (15.2) feeling more angry (n = 70) 0 (0.0) 11 (25.0) 26 (100.0) 33 (75.0) feeling more hopeless (n = 70) 0 (0.0) 8 (18.2) 26 (100.0) 36 (81.8) feeling more courageous (n = 70) 17 (65.4) 26 (59.1) 9 (34.6) 18 (40.9) feeling more fearful (n = 71) 5 (19.2) 17 (37.8) 21 (80.8) 28 (62.2) feeling more detached (n = 69) 2 (7.7) 9 (20.9) 24 (92.3) 34 (79.1) feeling more connected to the past than the present (n = 71) 0 (0.0) 2 (4.4) 26 (100.0) 43 (95.6) feeling more creative (n = 68) 6 (26.1) 15 (33.3) 17 (73.9) 30 (66.7)
Note. P values were calculated with v 2 (two tailed). Percentages are column percentages.
P
.442
.133
.005
.450
.005
.021
.601
.103
.145
.276
.541
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
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 Tables 4 and 5 for the entire sample and separately for parents whose grief had ended and those whose grief continues. 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 bstayed the sameQ response for every area discussed. Although the bstayed the sameQ 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.
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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, bHas this image of grief applied to you since the death of your child?Q 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.
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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
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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 bliving next to itQ 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. DISCUSSION
This survey of nurses who experienced the death of a child during their lifetime explores and extends our current understanding of the complex emotional response of grief. Specifically, the study offers empirical support for the notion of grief as ongoing in the life of a parent whose child had died. Tantamount to documenting that most parents believe that their grief continues at present are several noteworthy comparisons between this group and those parents who state that their grief had come to an end. First, the significant correlations between continuing grief and other feelings of loss are methodologically and substantively important. These associations are perhaps to be expected: it is not surprising that those who report that they are still grieving are more likely than others to feel they will never let go of their child, that part of them is missing, and that they are still strongly connected to their child. Similarly, although only a minority of current grievers report feeling that the death of their child made them more depressed, hopeless, or angry, the proportions were nonetheless higher than in the group of parents whose grief had ended. Thus, the suggested
EXPLORING PARENTAL GRIEF: COMBINING QUANTITATIVE AND QUALITATIVE MEASURES
construct validity of the newly devised bend/ continueQ is promising and should be explored with larger and more diverse samples of grieving parents. Cause of death as an influence on grief proved an interesting variable suggesting that parents whose child died in infancy may be more likely than others— in later years —to view their grief for that child to have ended rather than to be continuing. In contextualizing this finding, it is likely that most infant deaths in this sample occurred within a social and health care context that did not recognize the grief of parents, particularly parents grieving the death of an infant. Indeed, prior to the 1970s, when perinatal grief programs were developed, parents of a deceased baby were often isolated and discharged without any support service whatsoever. Parents were encouraged by health care professionals to suppress their grief or at least end it quickly. Thus, the authors interpret this association between infant death and grief ending as a potential methodological artifact. These data overall support the position that grief on the death of a child, regardless of the cause of death, the age of the child at death, and the time since the death, is universal and ongoing. These findings have implications for care of bereaved parents and can serve to guide evidence-based clinical practice. Overall, other comparisons between parents whose grief continues and those whose grief had ended reveal similarities that are striking and suggest that continuing grief can be and is combined with positive, life-affirming feelings. For example, parents whose grief continues are no more likely than their counterparts to feel that important areas of their lives (e.g., their health and involvement with friends and community) are worse due to their child’s death. Moreover, those who report that their grief continues are equally likely to feel that their child’s death made them stronger and more courageous and sensitive overall. Those who continue to feel grief are significantly more likely than others to report that the experience of child death has improved their relationship with their remaining children and made them more spiritual overall. In addition, parents who say their grief had ended are just as likely to respond to the image of a hollow or empty space inside and have similar levels of overall life satisfaction as those whose grief continues. These
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data yield a picture of continuing grief that includes more intense feelings of loss and related emotions than are reported by other parents, yet similar levels of courage, strength, sensitivity, and increased spirituality and improved relationships with surviving children. Those parents who said that their grief had ended also described ongoing feelings of loss and emptiness when responding to the open-ended questions. The authors view this disparity as a revealing paradox. LIMITATIONS
This study has several limitations that should be considered in interpreting the results. These limitations lie in three areas: sample, time frame, and omitted questions. First, the size of the sample limits generalizability. The sample is composed exclusively of nurses, predominately female, who graduated from one school of nursing, with very similar demographic characteristics. Second, the extended time frame for the study spans the entire 20th century. This was a time during which there were dramatic changes in services, policies, and procedures for childbirth and for hospitalized children and their families. Despite high infant and child mortality rates, perinatal and child death were devalued and parents were not given support for the expression of their grief. Data presented here are undoubtedly influenced and shaped by this milieu. A study with a shorter and more well-defined time frame would have standardized the effect of the milieu. Another limitation addresses a small number of respondents who stated that they wished there had been attention given to the somatic reactions of grief, surviving sibling reactions, parental dreams following the death of a child, and peer contact with other bereaved parents. It should be noted that this study did not collect in-depth data from parents who experienced miscarriage and stillbirth. Clearly, these profound losses need to be studied; however, at this juncture, the authors cannot generalize the findings to these losses. Furthermore, the impact of multiple child death was not explored. This also requires further investigation. SUMMARY
Overall, the findings of this study support an understanding of parental grief as complex, nonlinear, and ongoing. Correlates of continued
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parental grieving were identified and include feeling connected to one’s child, feeling they will not let go of their child, feeling part of them is missing, and experiencing a hollow empty space inside them. These emotions form a composite of parental grief. Findings suggest that grieving continues and can be associated with a myriad of other emotions, including those that are positive and life transforming. Continued grieving is highly individualistic and is associated with heightened and variable emotionality, life satisfaction, and improved relationships with surviving children. Furthermore, parental grief on the death of a child is profound, regardless of the years since the death, the age of the child at the time of death, and the cause of the child’s death. CALLOUTS b This research supports parental grief as a non-linear,
Suggested Clinical and Research Implications Recognize the importance of including child death as part of family history; Provide support services and resources on an ongoing basis over the life course of the family in all health care settings; Treat child death, regardless of age, cause, or time since the death, not only as a woman’s health concern in obstetric and gynecological care but also in pediatrics, men’s health, and geriatrics; Explore grief as an ongoing process with diverse sample populations of bereaved parents; Support studies involving loss of a child in pregnancy, at birth, in infancy, in childhood, in adolescence, and in adulthood to explore commonalities in the experience of grieving parents, regardless of the cause of death, the time since the death, or the age of the child
individualized, ongoing process.Q b Continued grieving can be associated with a wide range of emotions, many of which are positive and life transforming.Q b Parental grief is profound regardless of the years that have passed since death, the age of the child at the time of death, and cause of the childTs death.Q b The death of a child is a significant loss with implications for further clinical research and practice considerations.Q
ACKNOWLEDGMENTS
We are profoundly grateful to the following organizations for their support in funding the development of the Grief Over a Lifetime Instrument: Lucie S. Kelly Research Award Grant, Alpha Zeta Chapter of Columbia University, Sigma Theta Tau International (2000); Frances G. Crane Research Grant, Foundation of the New York State Nurses Association (2000); Nursing Research Grant, Columbia University–Presbyterian Hospital School of Nursing Alumnae Association (1998); Faculty Fund, The College of New Rochelle (1996–1997; 1999–2000). We also thank the Columbia University–Presbyterian Hospital School of Nursing Alumnae Association for providing access to the alumni who so graciously participated in this study. Our gratitude goes to Kimary Kulig, PhD, and Curt Malloy, MPH, for assisting with the computer-based analysis.
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