Parents who responded to our survey had a high level of complicated grief symptoms 6 months after their child’s death in the PICU. Fifty-nine percent of parents had ICG scores of a magnitude used to indicate complicated grief in prior research.28
These findings must be interpreted with caution, however, because parents from only 23% of families responded to our survey. Respondents may have been those parents having the greatest difficulty adjusting to their child’s death. In 2009, a diagnostic algorithm for complicated grief was proposed, and inclusion of the disorder in the forthcoming Diagnostic and Statistical Manual of Mental Disorders
) has been suggested.1
Although our assessment method did not allow for a formal diagnosis of complicated grief based on these criteria, the severity of symptoms reported by our survey respondents suggests that some parents are at risk for persistent distress and dysfunction following their child’s death in the PICU.
Few studies have investigated complicated grief among bereaved parents,35–37
and to our knowledge, none have investigated complicated grief among parents whose children died in PICUs. Dyregrov et al35
conducted a cross-sectional survey in Norway among 232 parents identified from the national police register of suicide, accident, and sudden infant death syndrome and found that 78% of those bereaved by suicide or accident and 57% bereaved by sudden infant death syndrome had a high level of complicated grief symptoms (ICG scores >25) 18 months after the loss. Wijngaards-de Meij et al36
conducted a longitudinal survey of 219 Dutch couples identified from children’s obituary notices. Mean (SD) ICG scores transformed to a scale of 0 to 100 were 45.2 (19.8) at 6 months, 43.0 (18.7) at 13 months, and 41.5 (18.2) at 20 months indicating a high level of complicated grief symptoms over this period. Keesee et al37
surveyed 157 parents who were recruited up to 40 years after their child’s death from 2 community support groups in the southeastern United States and the Internet; ICG scores were inversely related to time since the loss. Li et al,38
using data from large national registries in Denmark, found increased risk of first psychiatric hospitalization among bereaved parents, most pronounced in the first year, but extending for 5 years after the death.
Demographic and clinical risk factors for complicated grief symptoms identified by multivariable analysis among parents in our study included being the biological mother or female guardian and trauma as the cause of death. Lower education and being unmarried were related to complicated grief symptoms in univariable analysis only. These findings are consistent with prior studies that found female sex,5,35
cause and unexpectedness of death (eg, traumatic or violent death),8,15,36,37
and less education15
to be associated with complicated grief and suggest that single parenthood may also play a role. Our findings showed no relationship between complicated grief symptoms and number of surviving children, although other researchers have suggested that additional children in the household may be a protective factor.35,36
Grief theorists have proposed that individual differences in adjustment to loss can be viewed from the perspective of attachment theory.3,39
Attachment refers to an affectional bond between an individual and an attachment figure through which the individual seeks safety, security, and support. Mental representations of early attachment bonds (eg, infant-parent bonds) form the basis of one’s general attachment style in close relationships. Two underlying dimensions to attachment are anxiety and avoidance.40
Attachment-related anxiety reflects the extent to which one worries that others will be unavailable in times of need. People with high attachment anxiety typically have a very dependent relationship style and handle stress poorly. As such, people with high attachment anxiety have been considered at risk for poor bereavement outcomes. Attachment-related avoidance reflects the extent to which one feels uncomfortable relying on others or being relied on. People with high attachment avoidance strive to maintain autonomy and emotional distance; these characteristics potentially facilitate adaptation to loss. Our findings support the theoretical view that high attachment-related anxiety is a risk factor for severe grief symptoms. In contrast to theoretical views, our findings also suggest that high attachment-related avoidance is associated with more severe grief. Wijngaards-de Meij et al41
reported a similar association between attachment-related avoidance and parental grief. These researchers have suggested that avoidance functions inadequately as a defense mechanism for bereaved parents because of the extreme nature of the loss.
Caregiving is the complement of the attachment system.30
Caregiving behaviors (eg, behaviors intended to provide safety and security to others) mirror attachment behaviors (eg, behaviors intended to attain safety and security from others). Responsive caregiving is characterized by accessibility, sensitivity, and cooperation, whereas compulsive caregiving is characterized by over-involvement and control. For parents, the death of a child represents loss of a caregiving relationship; however, to our knowledge, the association between caregiving style and parental grief has not been previously studied. Although less responsive and more compulsive caregiving were associated with a higher degree of complicated grief symptoms in univariable analysis, caregiving styles were not independent predictors in multivariable analysis. This is likely due in part to the interrelationships between caregiving and attachment.
Grief theorists have also proposed that adjustment involves some degree of grief avoidance as the bereaved oscillate between confronting painful emotions and defensive exclusion of the painful recognition of the loss.42
Among those with complicated grief, however, grief-related avoidance can be excessive and impairing. In a study of 128 adult patients being treated for complicated grief disorder, the extent that patients avoided places, things, and activities that reminded them of their loss and death-related situations that evoked sympathy correlated with ICG scores.43
Similarly, our findings suggest that excessive grief avoidance is related to complicated grief. Rather than a risk factor, excessive grief avoidance may be a component of complicated grief. Research also suggests that excessive rumination over the deceased may contribute to poor bereavement outcomes.32
Social support availability and satisfaction were not associated with the extent of parents’ complicated grief symptoms in multivariable analysis. This finding is consistent with research conducted among elderly widows by Stroebe et al,17
who found no evidence that social support had a buffering or recovery effect on bereavement. However, Kreicbergs et al44
conducted a cross-sectional survey among 449 Swedish parents identified from national registries 4 to 9 years after their child’s death of cancer and found that those reporting greater social support during and after the child’s illness were more likely to have worked through their grief. Our findings suggest that the support of family and friends may be inadequate to ameliorate complicated grief symptoms among parents 6 months after their child’s death.
Limitations of this study include the high percentage of potential participants who either refused or could not be located. The low response rate is typical of surveys of bereaved individuals and may be because of high levels of distress during bereavement and the added burden that research participation may impose. Characteristics of nonrespondents are unknown since medical records were reviewed for parent contact information and primary language only and all data were collected by self-report. Additionally, although the scales used in this study have previously been validated as individual measures, their validity when used together has not been established. Associations between scales may represent collinear rather than predictive relationships. Ideally, potential risk factors for complicated grief should be assessed prior to the child’s death because the death experience itself may affect parents’ responses to some survey measures. Strengths of this study include the racial, ethnic, and geographic diversity of respondents, which increases the generalizability of our findings.
In conclusion, parents who responded to our survey had a high level of complicated grief symptoms 6 months after their child’s death in the PICU. Risk factors include demographic and clinical variables as well as psychological variables related to the attachment system. Better understanding of the prevalence and risk factors for complicated grief among parents will allow those most vulnerable to maladaptive grief responses to receive professional bereavement support. Further research regarding change in complicated grief symptoms over time and their relationship to long-term parent and family outcomes is needed.