Ulrika Kreicbergs

Anxiety and depression in parents 4–9 years after the loss of a child owing to a malignancy: a population-based follow-up

BACKGROUND Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the child. We investigated parental risk of anxiety and depression 4-9 years after the loss of a child owing to a malignancy. METHOD In 2001, we attempted to contact all parents in Sweden who had lost a child due to a malignancy during 1992--1997. We used an anonymous postal questionnaire and utilized a control group of non-bereaved parents with a living child. RESULTS Participation among bereaved parents was 449/561 (80 %); among non-bereaved 457/659 (69%). We found an increased risk of anxiety (relative risk 1.5, 95 % confidence interval 1.1-1.9) and depression (relative risk 1.4, 95 % confidence interval 1.1-1.7) among bereaved parents compared with non-bereaved. The risk of anxiety and depression was higher in the period 4-6 years after bereavement than in the 7-9 years period, during which the average excess risks approached zero. Psychological distress was overall higher among bereaved mothers and loss of a child aged 9 years or older implied an increased risk, particularly for fathers. CONCLUSIONS Psychological morbidity in bereaved parents decreases to levels similar to those among non-bereaved parents 7-9 years after the loss. Bereaved mothers and parents who lose a child 9 years or older have on average an excess risk for long-term psychological distress.

Symptoms Affecting Children With Malignancies During the Last Month of Life: A Nationwide Follow-up

OBJECTIVE. In a population-based nationwide survey, we aimed to study symptoms in children with malignancies during the last month of their lives. Understanding which symptoms affect children in the terminal phase of disease is crucial to improve palliative care. METHODS. We attempted to contact all parents in Sweden who had lost a child to cancer during a 6-year period. The parents were asked, through an anonymous postal questionnaire, about symptoms that affected the childs sense of well-being during the last month of life. RESULTS. Information was supplied by 449 (80%) of 561 eligible parents. The symptoms most frequently reported with high or moderate impact on the childs well-being were: physical fatigue (86%), reduced mobility (76%), pain (73%), and decreased appetite (71%). Irrespective of the specific malignancy, physical fatigue was the most frequently reported symptom, and pain was among the 3 most frequently reported. Children who died at 9 to 15 years of age were reported to be moderately or severely affected, by a number of symptoms, significantly more often than other children. The gender of the reporting parent had no significant bearing on any of the symptoms reported. CONCLUSIONS. The most frequently reported symptoms in children with malignancies to be aware of and possibly address during the terminal phase are physical fatigue, reduced mobility, pain, and decreased appetite. Children aged 9 to 15 years are reported to be moderately or severely affected by more symptoms than children in other age groups. Mothers and fathers report a similar prevalence of symptoms.

Care-Related Distress: A Nationwide Study of Parents Who Lost Their Child to Cancer

PURPOSE Palliative care is an important part of cancer treatment. However, little is known about how care-related factors affect bereaved intimates in a long-term perspective. We conducted a population-based, nationwide study addressing this issue, focusing on potential care-related stressors in parents losing a child to cancer. METHODS In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer in 1992 to 1997. The parents were asked, through an anonymous postal questionnaire, about their experience of the care given and to what extent these experiences still affect them today. RESULTS Information was supplied by 449 (80%) of 561 eligible parents. Among 196 parents of children whose pain could not be relieved, 111 (57%) were still affected by it 4 to 9 years after bereavement. Among 138 parents reporting that the child had a difficult moment of death, 78 (57%) were still affected by it at follow-up. The probability of parents reporting that their child had a difficult moment of death was increased (relative risk = 1.4; 95% CI, 1.0 to 1.8) if staff were not present at the moment of death. Ten percent of the parents (25 of 251 parents) were not satisfied with the care given during the last month at a pediatric hematology/oncology center; the corresponding figure for care at other hospitals was 20% (33 of 168 parents; P = .0163). CONCLUSION Physical pain and the moment of death are two important issues to address in end-of-life care of children with cancer in trying to reduce long-term distress in bereaved parents.

Looking beyond where children die : Determinants and effects of planning a child's location of death.

While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a childs location of death (LOD) and its effects on patterns of care and parents experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the childs LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the childs end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the childs end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a childs LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.

Unresolved Grief in a National Sample of Bereaved Parents: Impaired Mental and Physical Health 4 to 9 Years Later

PURPOSE To assess unresolved parental grief, the associated long-term impact on mental and physical health, and health service use. PATIENTS AND METHODS This anonymous, mail-in questionnaire study was performed as a population-based investigation in Sweden between August 2001 and October 2001. Four hundred forty-nine parents who lost a child as a result of cancer 4 to 9 years earlier completed the survey (response rate, 80%). One hundred ninety-one (43%) of the bereaved parents were fathers, and 251 (56%) were mothers. Bereaved parents were asked whether or not, and to what extent, they had worked through their grief. They were also asked about their physical and psychological well-being. For outcomes of interest, we report relative risk (RR) with 95% CIs as well as unadjusted odds ratios and adjusted odds ratios. RESULTS Parents with unresolved grief reported significantly worsening psychological health (fathers: RR, 3.6; 95% CI, 2.0 to 6.4; mothers: RR, 2.9; 95% CI, 1.9 to 4.4) and physical health (fathers: RR, 2.8; 95% CI, 1.8 to 4.4; mothers: RR, 2.3; 95% CI, 1.6 to 3.3) compared with those who had worked through their grief. Fathers with unresolved grief also displayed a significantly higher risk of sleep difficulties (RR, 6.7; 95% CI, 2.5 to 17.8). Mothers, however, reported increased visits with physicians during the previous 5 years (RR, 1.7; 95% CI, 1.1 to 2.6) as well as a greater likelihood of taking sick leave when they had not worked through their grief (RR, 2.1; 95% CI, 1.2 to 3.5). CONCLUSION Parents who have not worked through their grief are at increased risk of long-term mental and physical morbidity, increased health service use, and increased sick leave.

Home care of a child dying of a malignancy and parental awareness of a child's impending death.

In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child’s last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief, access to pain relief and access to medications for other physical symptoms. Using an anonymous postal questionnaire, we obtained information from 449 parents in Sweden who had lost a child due to a malignancy between 1992 and 1997, 4 to 9 years before participating in our study. The prevalence of dying at home and being cared for at home during the last month of life was 23.7% when parents realized intellectually more than 1 month in advance that the child would die (versus 12% who did not), 28.7% for parents who sensed that the child was aware of his or her imminent death (versus 7.8% who did not sense this) and 21.9% for those who received information that the child’s illness was incurable (versus 9.4% who did not receive the information). Prevalence of children’s unrelieved pain was 11.6% for those receiving home care and 15.3% for those receiving care outside the home.

Measuring anxiety and depression in the oncology setting using visual-digital scales.

We investigated the feasibility of using single-item visual-digital scales for measuring anxiety and depression for research purposes within the oncology and palliative care setting. Data were retrieved from five nationwide postal questionnaires comprising 3030 individuals (response rate 76%): cancer patients, widows/parents who had lost their husband/child to cancer and population controls. All questionnaires contained the Center for Epidemiological Studies Depression scale (CES-D) and Spielbergers State-Trait Anxiety Inventory (STAI-T) as well as seven-point Visual-Digital Scales (VDS) assessing anxiety and depression. Each stepwise increased score on the VDS-depression provided a statistically significant increase in the mean score on CES-D (Spearmans r=0.582). The VDS-anxiety correlated with mean scores on STAI-T (Spearmans r=0.493), however, not all stepwise increased scores on the VDS-anxiety gave a statistically significant increase on the STAI-T. Positive- and negative predictive values were 51% and 91% for VDS-depression and 64% and 80% for VDS-anxiety. Missing data for STAI-T were 7% and 9% for CES-D; the corresponding figures were 2% for the VDS-depression and 3% for VDS-anxiety. With low attrition and agreement with psychometric scales, the Visual-Digital Scales are a feasible alternative for research in the oncology setting. However, the high negative predictive value and the low positive predictive value suggest that the visual- digital scales mainly detect the absence of the symptoms.

Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.

The objective of this study was to assess long‐term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non‐bereaved siblings from the general population.

Self-injury in Teenagers Who Lost a Parent to Cancer: A Nationwide, Population-Based, Long-term Follow-up

OBJECTIVE To investigate the risk of self-injury in parentally cancer-bereaved youth compared with their nonbereaved peers. DESIGN Population-based study of cancer-bereaved youth and a random sample of matched population controls. SETTING Sweden in 2009 and 2010. PARTICIPANTS A total of 952 youth (74.8%) confirmed to be eligible for the study returned the questionnaire: 622 (73.1%) of 851 eligible young adults who lost a parent to cancer between the ages of 13 and 16 years, in 2000 to 2003, and 330 (78.4%) of 451 nonbereaved peers. MAIN EXPOSURE Cancer bereavement or nonbreavement during the teenage years. MAIN OUTCOME MEASURES Unadjusted and adjusted odds ratios (ORs) of self-injury after January 1, 2000. RESULTS Among cancer-bereaved youth, 120 (19.5%) reported self-injury compared with 35 (10.6%) of their nonbereaved peers, yielding an OR of 2.0 (95% CI, 1.4-3.0). After controlling for potential confounding factors in childhood (eg, having engaged in self-destructive behavior, having been bullied, having been sexually or physically abused, having no one to share joys and sorrows with, and sex), the adjusted OR was 2.3 (95% CI, 1.4-3.7). The OR for suicide attempts was 1.6 (95% CI, 0.8-3.0). CONCLUSIONS One-fifth of cancer-bereaved youth reported self-injury, representing twice the odds for self-injury in their nonbereaved peers, regardless of any of the adjustments we made. Raised awareness on a broad basis in health care and allied disciplines would enable identification and support provision to this vulnerable group.

Anxiety is contagious—symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents†

We studied the relation between unrelieved symptoms in terminally ill children and the psychological well‐being in the bereaved parents 4–9 years after their loss.