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Journal of Clinical Oncology, Vol 25, No 22 (August 1), 2007: pp. 3307-3312 © 2007 American Society of Clinical Oncology. DOI: 10.1200/JCO.2006.10.0743 Parental Grief After Losing a Child to Cancer: Impact of Professional and Social Support on Long-Term Outcomes
From the Phyllis F. Cantor Center; Department of Pediatric Oncology; the Center for Outcomes and Policy Research, Dana Farber Cancer Institute; Department of Medicine, Children's Hospital, Boston, MA; Department of Women and Child's Health; Division of Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden; and the Department of Psychology, Universität Bern, Berne, Switzerland Address reprint requests to Ulrika Kreicbergs, RN, PhD, The Phyllis F. Cantor Center, Dana Farber Cancer Institute, 44 Binney St, CP 306, Boston, MA 02115; e-mail: ulrika_kreicbergs{at}dfci.harvard.edu
Purpose It is still uncertain whether or not parents can ever come to terms with the loss of a child and whether professional or social support facilitate the long-term grief process. Methods A Swedish population-based study, which sent an anonymous, mail-in questionnaire to parents who had lost a child to a malignancy 4 to 9 years earlier, gained the participation of 449 (80%) of 561 parents. Parents were asked whether, and to what extent, they had worked through their grief. Questions were also asked regarding those who provided parents with support. We examined candidate factors to determine their associations with greater likelihood of working through parental grief. Results Overall, most parents (74%) stated that they had worked through their grief "a lot" or "completely" at the time of the follow-up. Parents who had shared their problems with others during the child's illness (fathers: relative risk [RR], 3.0; 95% CI, 1.8 to 5.0; mothers: RR 1.9; 95% CI, 1.2 to 2.8) and who had access to psychological support during the last month of their child's life (fathers: RR 1.4; 95% CI, 1.0 to 1.8; mothers: RR 1.3; 95% CI, 1.1 to 1.6) were more likely to have worked through their grief. In cases where health care staff offered parents counseling during the child's last month, the parents were more likely to have worked through their grief (fathers: RR 1.5; 95% CI, 1.2 to 1.8; mothers; RR 1.2; 95% CI, 1.1 to 1.4). Conclusion Most parents eventually work through the grief associated with losing a child to cancer. In the long term, sharing the emotional burden with others facilitates the grieving process.
Losing a child is one of life's most difficult experiences. It defies our expectations of the natural order of things. Although the loss of a child affects individuals differently, grief is an expected outcome. Most often, psychological, physical, social, and/or behavioral reactions are observed as components of grief.1 Parental grief has been recognized as more intense and longer lasting than other types of grief.2-5 Rando2 suggests that criteria typically used to identify abnormal grief are normal components of parental grief. In general, parents state that life will never be the same as it was before the loss of their child. Although several theorists suggest models of the grief process—many of which include a last stage of grief that signifies its resolution6-8—very few studies have assessed whether or not parents ever work through their grief.9 Furthermore, previous research has shown that grief intensity and quality differ significantly between mothers and fathers.10-12 Grief is not solely a very painful and excruciating experience on a subjective level. In fact, it has actually been shown to increase the risk of psychological and physical illness, and even mortality.13,14 Bereaved parents seem to be particularly susceptible to such risks.15,16 Kreicbergs et al17 reported that bereaved parents are likely to suffer from long-term anxiety and depression. Therefore, it would appear essential to find ways to support parents. Recent meta-analyses18,19 have shown that grief counseling is mostly ineffective. Yet several studies emphasize the importance of health care staff remaining in a close relationship with families throughout the illness of their child.20-22 It is still unknown whether the support of hospital staff, or that of other individuals such as relatives, friends, and neighbors, is of importance for the outcome of the parental grief process. We carried out a population-based study involving parents who had lost their child to cancer 4 to 9 years earlier and sought to examine the impact of palliative care interventions on long-term parental grief. We focused on parents' self-assessment of whether they had worked through their grief over the long term and whether professional and social support facilitated this process.
The Swedish Cause of Death Register and the Swedish Cancer Registry were used to identify children in Sweden who had been diagnosed with a malignancy before the age of 17 and who died before turning 25 any time between 1992 and 1997 in Sweden. Permission was given by the child's former physician to contact all parents. The parents of the deceased children were located through the Swedish Population Registry. Parents were defined as a parent if they were legal guardians of the child at the time of the child's diagnosis. To be eligible for the study, parents had to understand and speak Swedish, have a registered phone number, and have been born in one of the Nordic countries. Between August and October 2001, a letter of introduction was sent out to 561 eligible bereaved parents to inform them about the study and invite them to participate. Ten days after the letter was sent, parents were called and asked if they would like to participate and receive an anonymous, mail-in questionnaire. If they agreed, the questionnaire was sent to them, followed by a thank-you card 10 days later. The thank-you card also served as a reminder for parents who had not yet returned the questionnaire. Mothers and fathers received separate questionnaires. Parents' anonymity was maintained by having them return the questionnaire separately from a response card on which they stated their names and birth date; both items of mail were prepaid. In this way it was possible to identify which parents returned the questionnaires without compromising the anonymity of their questionnaire responses. As a last reminder, phone calls were made to parents who had not returned their questionnaire 10 days after receiving the thank-you card. In the development of the questionnaire, interviews were conducted with parents who had lost a child to cancer and discussions were held with health care professionals. The questionnaire was then tested face-to-face with 15 bereaved parents. An investigator was present while the parents filled out the questionnaire to assess whether the questions were interpreted and understood as intended by the investigator. Questions were refined throughout this process. Shortly thereafter, a pilot study was performed to test participation rate, failure to respond to certain questions, and logistics. The questionnaire included 129 questions and a total of 365 items. It was divided into three parts, with part 1 covering issues such as information about the disease and its treatment, the child's symptom control, communication with the child about death and the time of awareness of the child's impending death. Part 2 covered the time after the loss of the child. Detailed information regarding if, when, and from whom the parents received bereavement support and both professional and social support was assessed. Part 3 included questions on parents' perception of their current mental health, such as self-assessed anxiety and depression, along with demographic data. The Ethics Committee of Karolinska Institutet approved the study. First and foremost, the study focused on whether parents had worked through their grief at the time of the follow-up (ie, 4 to 9 years after the loss of their child). We also explored potential social and professional factors associated with having worked through their grief. The study's primary question was formulated as follows: "Do you think that you have worked through your grief?" (as determined by a professional translator). The answer categories were "not at all," "somewhat," "a lot," and "completely." In the analysis, parents responding "a lot" or "completely" were examined more closely—such parents were referred to as "having worked through their grief." Sixteen potential factors were examined in relation to parents reporting that they had worked through their grief. Responses were reported as percentages and relative risks (RR) with 95% CIs. Parents were also asked about their marital status, age, sex, number of children, education, employment status, region of residence, and their history of anxiety and/or depression in the year before their child's diagnosis using the seven-point Visual Digital Scale.17,23 Multivariable regression analyses with forward selection and backward elimination were used to identify variables that independently contributed to the outcome. The Mantel-Haenszel method was used to adjust for demographic factors to provide relative risks and confidence intervals. SPSS versions 13 and 14 (SPSS Inc, Chicago, IL) were used for the statistical analysis.
Participants Of 561 eligible parents, 449 (80%) participated. The sociodemographic characteristics of participating parents are summarized in Table 1. Of those who responded, 191 (43%) were men and 251 (56%) women. Seven did not state their sex. Four hundred thirty-eight (98%) were the biologic parents of the deceased child.
Working Through Grief Three hundred twenty-five (74%) of 441 parents reported that they had worked through their grief 4 to 9 years after the loss of their child; 276 (63%) stated "a lot" and 49 (11%) "completely" (Figure 1). Fathers were no more or less likely than mothers to report having worked through their grief (fathers, 72%; mothers, 75%; P = .512). The only sociodemographic variable found to be significant was education; parents with higher education were more likely to report having worked through their grief (P = .01). Prior loss (child, partner, parents, relative, or friend) was not found to affect the bereavement outcome.
Social Support and Personal Factors Table 2 summarizes associations between social support and personal factors with having worked through grief. In general, parents who stated that they had shared their problems with others during the child's illness were more likely to have worked through their grief. Specifically, among fathers, talking with the child's mother about the impending death was a significant factor.
A large group of the parents who had worked through their grief stated that they had not had a need to talk to anyone about their problems during the month before being interviewed for the study. However, among parents who felt the need for ongoing communication about their problems, the opportunity to talk to someone was associated with a higher likelihood of having worked through their grief. Fathers who had a longer period of intellectual and emotional awareness of their child's impending death (more than a few hours) were more likely to have worked through their grief. A history of anxiety or depression in the year preceding the child's diagnosis was not found to be associated with parents' ability to work through grief 4 to 9 years after the death of their child (Table 2).
Among fathers, multivariable regression analysis (forward selection) showed that having shared their problems with others during the child's illness explained most of the variance for having worked through grief (P < .001;
Professional Support
Among fathers, multivariate regression analysis using forward selection of professional support measures showed that health care staff taking the initiative to offer counseling in the child's last month explained most of the variance of having worked through grief (P < .001;  2 = 12.6; df = 1). Results were confirmed using backward elimination. Among mothers, most of the variance was explained by the occurrence of closure talks with health care staff after the child's death (P = .005; 2 = 10.7; df = 2), also confirmed using backward elimination.
Our study suggests that most parents who lost a child to cancer have worked through their grief 4 to 9 years after the death. Although women and men generally do not differ in the likelihood of working through their grief, there are some differences in terms of factors facilitating this process. Kissane21 recommends family-focused grief therapy. According to Kissane, planning bereavement care should begin when palliative care services are first being introduced, rather than after the death of the child. We found that parents who reported having had access to psychological support during the last month of their child's life were more likely to have worked through their grief in the long-term. Furthermore, when parents felt that staff were taking the initiative to offer them counseling during their child's illness, and when parents felt that they had the opportunity to discuss their child's condition with the attending staff, they were more likely to have worked through their grief. Health care staff may need education about the importance of providing support throughout the terminal stage and after the loss, because this appears to have a positive impact on parents' long-term grief outcome. Among fathers, increased opportunities to become aware of the child's impending death earlier may be associated with a higher likelihood for working through their grief. Notably, Wolfe et al24 found that physicians are aware of the child's dismal prognosis 3 months before the parents are. It may be a natural impulse to protect parents from information that the child no longer has a realistic chance for cure. However, our findings suggest that physicians should make an active effort to help parents to become aware of their child's impending death to facilitate long-term grief adjustment. Fathers seem to have greater difficulties in becoming aware, possibly because of less involvement in the direct care of the child.25,26 In the present study based on parental reports, interaction with staff and provision of professional support was not the only important factor associated with parents' long-term grief outcome. In contrast to a more recent meta-analysis27 reporting a lack of evidence for social support as a factor facilitating the grief process, the findings of this study underline the importance of social support for the parents. In cases where parents stated that they had shared their emotional problems with others during the child's illness, they were more likely to have worked through their grief compared with those who did not. In fact, sharing problems with others during the child's illness proved to be the strongest social support factor for the likelihood of working through grief. Among fathers, those who talked regularly with their spouse about the child's impending death were more likely to have worked through their grief. This was not the same for mothers, who may have broader opportunities for support. Recent studies have reported that, in the postdeath period, formal psychological interventions are not particularly helpful.18,19 This study, however, suggests that closing sessions with the attending staff after the death of the child, are beneficial, in particular for mothers. Notably, closure talks with a psychologist or social worker from the child's care team were found to provide the best support for mothers over the long term. These observations point to the importance of postdeath support from the professionals who are well-known to the parents. Although there may be an acute phase of grieving, in which parents are not receptive to support, this study strengthens the notion of ongoing opportunities to support bereaved parents for several years beyond the death, preferably by members of the care team known to the family.28 Some fathers and mothers stated that they had no need to talk to anyone about their problems and concerns during the month before being interviewed for the study and they had worked through their grief. However for others, ongoing social support 4 to 9 years after the loss still proved to be beneficial. Mothers reported having talked to friends, other bereaved parents and family members, whereas fathers remained confined to the family for bereavement support. These differences are consistent with other findings about sources of support for men compared with women.29 Anxiety or depression in the year preceding the child's diagnosis as reported by the parents was not found to influence the long-term grief outcome, nor was previous history of bereavement. Thus, in this study, psychological characteristics that predated the child's illness were not associated with parents' ability to work through their grief. However, it is also possible that parents with a history of psychological morbidity received more professional support than did those without such a history and, as a result of enhanced support, did as well as others. Although the response rate in our population-based investigation was high, our study has a number of limitations. It can be argued that all data relies on self-report from the parents and that standardized scales30-32 should have been used instead of a single item asking parents to assess their grief outcome. However, the simple way in which parents were asked to provide an assessment of their grief status can also be regarded as a strength. Indeed, the preceding face validation of this survey item showed that the parents understood and interpreted the question as was intended by the investigators. Another concern is the potential for recall bias. Given the cross-sectional retrospective nature of this study, it is possible that parents who do better at follow-up recall their experience of support received in a more positive manner. In addition, unknown parent characteristics may have increased both the likelihood of accepting support and the likelihood of improved bereavement outcomes. Such confounders cannot be identified with the current study design however support the need for further investigation using a prospective study design. Finally, this study was done with a homogeneous population in the cultural setting of Sweden and may not be generalizable to other populations. Parental grief has been reported to be more intense and longer lasting than that after losing other loved ones,2-5 underscoring the need for understanding how best to support bereaved parents. Our study results suggest that although health care staff will not be able to spare families the pain of their loss, they still can have an impact on parents' long-term grief outcomes. Several clinical implications may be drawn from this study. It appears critically important that staff support of parents begins before the child's death as an integral part of an interdisciplinary palliative care plan. Health care staff should offer parents opportunities for effective communication about the child's prognosis. Likewise, they should inform parents when the child's death is imminent to help parents prepare for this eventual outcome. Health care staff should also remain available for closure talks after the child's death. Finally, staff can encourage parents to talk to others about their experience should they have the need to do so. In mobilizing these resources, it may be possible to further increase the number of parents who successfully work through their grief after losing a child to cancer.
Although all authors completed the disclosure declaration, the following authors or their immediate family members indicated a financial interest. No conflict exists for drugs or devices used in a study if they are not being evaluated as part of the investigation. For a detailed description of the disclosure categories, or for more information about ASCO's conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors. Employment: N/A Leadership: N/A Consultant: N/A Stock: N/A Honoraria: N/A Research Funds: Ulrika C. Kreicbergs, Swedish Children's Cancer Foundation, the Swedish Society for Medical Research; Patrizia Lannen, Swiss Cancer League (KLS-01645-02-2005); Joanne Wolfe, National Cancer Institute (No. NCI 5 K07 CA 096746), Child Health Research Grant from the Charles H. Hood Foundation, Inc. Testimony: N/A Other: N/A
Conception and design: Ulrika C. Kreicbergs Provision of study materials or patients: Ulrika C. Kreicbergs Collection and assembly of data: Ulrika C. Kreicbergs Data analysis and interpretation: Ulrika C. Kreicbergs, Patrizia Lannen, Erik Onelov, Joanne Wolfe Manuscript writing: Ulrika C. Kreicbergs, Patrizia Lannen, Erik Onelov, Joanne Wolfe Final approval of manuscript: Ulrika C. Kreicbergs, Patrizia Lannen, Erik Onelov, Joanne Wolfe
We thank the parents who made this study possible by bravely sharing their experiences with us.
Supported by grants from the Swedish Children's Cancer Foundation, the Swedish Society for Medical Research, the Swiss Cancer League (KLS-01645-02-2005), the National Cancer Institute (NCI 5 K07 CA 096746), and a Child Health Research grant from the Charles H. Hood Foundation. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
