The loss of a child to cancer – focusing on siblings

Aims: The overall aim of this thesis was to investigate the long-term psychological 
health consequences in bereaved families of children who have died from cancer, with 
a focus on the siblings. Further,  we investigated  if health-care and family related 
stressors might affect the long-term psychological health in bereaved siblings. Part of 
the aim was also to examine bereaved siblings’ experience of participation in a research
study about their loss. 



Subjects and Methods: In the initial study, parents who lost a child to cancer four to 
nine years earlier in Sweden were asked to participate in a nationwide follow-up study, 
80% (449/561) participated together with a group of non-bereaved parents from the 
general population, 69% (457/659). A study-specific, anonymous questionnaire 
assessing anxiety, depression, quality-of-life and marital status together with a number 
of  other outcomes were distributed to participating parents. In another nationwide 
follow-up study, we contacted 240 siblings, in Sweden, who had lost a brother or sister 
to cancer between the years 2000 and 2007; among those, 73% (174) participated in our 
study. A control group of non-bereaved siblings, matched for age, gender and place of 
residence, were  also invited, 75% (219/293)  participated. A study-specific and 
anonymous questionnaire assessed the siblings’ experience of participating in the study, 
their psychological health (anxiety, depression), and their communication with family 
and others prior to and after the death  of their brother or sister, together with other 
factors. 



Results: Bereaved parents were more likely to be living with the child’s other parent, 
74% (329/442) compared to non-bereaved parents, 69% (312/452), RR=1.1 (1.0-1.1). 
None, (0/168), of the bereaved siblings thought that their participation in the study 
would effect them negatively long-term. Ninety-nine percent of the siblings (171/173) 
found it valuable to conduct such a study and a vast majority, 84% (142/169) found it 
to be a positive experience. At follow-up self-assessed  low self-esteem (p=0.002), 
difficulties falling asleep (p=0.005) and low personal maturity (p=0.007) were more 
prevalent among bereaved siblings. However, anxiety (p=0.298) and depression 
(p=0.946) according to  the Hospital Anxiety and Depression Scale (HADS) were 
similarly distributed between bereaved and non-bereaved siblings. Siblings who 
avoided the health-care professionals, for fear of being in their way during their brother 
or sisters last month in life, reported an increased risk of anxiety, RR=2.2 (1.1-4.6) as compared with those who did not avoid the health-care professionals. Siblings who 
talked  less  about their feelings regarding their brother or sister’s illness reported an 
increased risk of anxiety, RR=2.8 (1.3-6.2) as compared with those who talked more 
frequently. An increased risk of anxiety was also prevalent among siblings who 
avoided talking to their parents about their deceased brother or sister, out of respect for 
their parent’s feelings, RR=2.4 (1.1-5.4) as compared with those siblings who reported 
talking to their parents about the deceased child.



Conclusions: Parents bereaved due to cancer are  not  more likely to be separated or 
divorced from the child’s other parent compared with non-bereaved parents. Bereaved 
siblings are at increased risk of low self-esteem, low personal maturity and sleeping 
difficulties  as compared with non-bereaved peers. Avoiding health-care professionals 
prior to the brother or sisters death and avoiding talking to their parents following the 
loss increased the bereaved siblings’ risk of long-term (two to nine years following the 
loss) anxiety. Most siblings reported finding it valuable to participate in this type of 
research