Limited research has examined the frequency and nature of changes experienced by bereaved parents after the death of a child from cancer. This study used mixed methods to identify and assess the frequency of different types of changes in bereaved parents, on average, within the first year of a child’s death from the perspective of mothers, fathers, and siblings. Consistent with previous studies,12, 13, 15-20
the majority of family members (83%) perceived that parents experienced changes after the death of a child. Changes included personal changes (emotions, perspectives, physical, work, coping behaviors, spiritual beliefs, and feeling something missing), and changes in relationships (family members and others). However, change attributed to the death of a child was not universally reported for bereaved parents.
A major contribution of this study is that data were obtained from bereaved mothers and fathers themselves, as well as from a surviving child, a relatively uncommon methodological approach. This method allowed us to address commonalities of family members’ perspectives, as well as their unique differences. Although differences in reports of parental change were observable across respondents in most categories, statistically significant changes were found only for changes in priorities and perceptions of sadness. A larger sample may be helpful to elucidate additional informant differences across themes. Positive personal changes were reported more frequently by parents, whereas siblings were more cognizant of the negative/observable pain of their parents. Specifically, over 25% of mothers reported changes in their priorities, but no siblings reported these changes in parents. This may reflect parents not sharing changes in priorities directly with siblings, which otherwise would be difficult to observe. Although it is possible that positive and negative changes co-exist, negative effects may be more salient to children who have less communication with their grieving parents.49
Changes in priorities may affect some siblings negatively although the changes may be viewed positively by parents. For example, changes in the parent’s spiritual beliefs may be seen as positive changes by the parent, but not necessarily so the sibling. This may account for why siblings reported more sadness in their parents than parents self-reported.
It is also interesting that almost one-third of siblings reported no changes in their parents, whereas few fathers or mothers reported this. This may be explained, in part, by the chronic nature of the child’s disease and the anticipatory grief parents may have experienced prior to the death. Many parents of children with cancer report severe grief responses even at the time of diagnosis.50
Parents may then develop coping strategies to deal with the uncertainty and despair over time.51
Alternatively, some children, particularly those who are younger, may have genuinely been unaware of changes in their parents. Younger children also may be less able or willing to verbalize observed changes in an interview format.
Taken as a whole, our findings suggest that nearly two-thirds of participants reported that bereaved parents experienced personal changes. Of these, 32% reflected changes in emotions, predominantly increased sadness. This is consistent with research that highlights the prolonged nature of grief5-7
and the higher risk for internalizing problems8-10, 52
for some parents. Considering that two-thirds of parents did not report changes in sadness, it is also possible that grief and sadness may ebb and flow rather than remain persistent. Research suggests that depression is episodic and that regrief is a common phenomenon.5-7
Thus, at any one point in time, some parents may have recently experienced increased sadness or grief, whereas others may have been more stable.
The second most frequent personal change, changes in perspectives, were reported by 26% of participants, most often reflecting changes in parents’ priorities. Other work has highlighted similar changes in the beliefs and priorities of bereaved individuals.13
Interestingly, few parents (only 8% of mothers) spontaneously reported physical changes after their child’s death despite a growing literature supporting the physical toll and health risks for bereaved parents.15-20
It is possible that these physical effects were less salient to parents in the early grief process when emotional changes dominate, or physical effects may emerge later, secondary to persistent negative emotional and social changes over time.
In addition to personal changes, nearly half of participants reported that bereaved parents experienced changes in relationships, most often in family relationships. These changes tended to be positive, such as growing closer and appreciating each other more,28
but there were also reports of negative effects. Most of the literature has focused on negative effects on social relationships suggesting declines in marital relationships and parenting after a child’s death.26, 28, 29, 31-35
Thus, it is important to also consider the assessment of positive family outcomes in future research.
Other changes of note among bereaved parents included feeling something missing in their lives and changes in coping behavior and spiritual beliefs. The feeling of something missing occurred both in the form of missing the physical presence of the child and experiencing a loss of identity after the death. This has been described previously as the “empty space phenomenon.”22
Changes in coping and spiritual beliefs reflected attempts to manage the ongoing pain of the loss, as well as how to make sense of a seemingly senseless death. This may be related to parent’s feeling powerless when faced with the death of a child and subsequent reliance on a superior being. The loss of a child certainly may affect parental perceptions of being a protector and provider for their child.41
In light of perceived failure in this role, parents may attempt to create meaning through recognition of what is fulfilling and important in life.53, 54
Our findings should be considered in light of several limitations. Our sample was primarily White and included bereaved parents and siblings after the death of a child to cancer. This finding may not generalize to more diverse families or individuals bereaved by other means. Data were cross-sectional with relatively little variation in length of time since death, and reports of positive and/or negative aspects of parental change may not persist over time. Interview questions were asked at the end of a long assessment, and responses may have been shorter because of fatigue. Finally, siblings were asked about their perception of changes in their parents and family in general, rather than mothers and fathers specifically, which limited the specificity of the content analysis of their data.
Despite these limitations, this study addressed a gap in the literature by examining similarities and differences in perceptions of parental change reported by bereaved mothers, fathers, and siblings. Other strengths included multiple data collection sites, good recruitment rates that minimized ascertainment bias, and the use of mixed methods. Our findings suggest that health care providers should consider the many changes that occur in families after the death of a child, but realize that change is not universal to all families. Helping bereaved parents and siblings talk about their feelings and the changes they experience can open the door for them to move through the grief process. Families also may gain a sense of normalcy knowing that other families have a continuum of positive and negative responses to loss of a child.
Most studies focus on the pathology of parental bereavement and fail to recognize the human ability to cope with adversity and allow for positive change and growth.39
More research is needed to provide a balanced understanding of parental bereavement. Future research could include longitudinal studies to examine reports of positive and/or negative aspects of parental change over time. Ideally, this would include attention to factors occurring from the time of the child’s diagnosis as antecedents that may affect parental adjustment after the death. Work also should examine the reciprocal nature of family grief and how outcomes vary according to methodological approach (e.g., phone, internet, or face-to-face interview). Overall, studies exploring predictors of positive and negative change in bereaved parents are needed, as well as interviews that promote health adaptation.