Teenagers who lose a parent to cancer - experiences, avoidable trauma and long-term health

Every year in Sweden about 3500 children (<18 years) lose a parent and about 40% of these deaths are due to cancer. Losing a parent is one of the most difficult things a child can go through. Although most children will recover over time, there is a group who are at risk of increased morbidity and mortality. However, if and how the children and their families are affected when their illness becomes more serious is insufficiently studied despite the fact that knowledge is needed to guide interventions within healthcare for this group.

Children have the right as family members to receive information, advice and support when a parent is seriously ill or dies unexpectedly as regulated by the Swedish Health and Medical Services Act in 2010.

The aim of the project is to increase knowledge and understanding of the experiences of and possible risk factors for psychological and physical illness in the long term among teenagers who have lost a parent to cancer. We are particularly interested in risk factors that occur alongside the bereavement itself that could be influenced by healthcare professionals; factors related to healthcare (illness, healthcare, information/communication); and the family (cohesion, communication).

Data analysis and preparation of an article are currently ongoing concerning issues related to grief (pent up/delayed/unprocessed), when and how the young people began to grieve, family cohesion, and psychological and physical health.

Results
The research project has so far formed the basis of a PhD thesis containing 4 scientific studies. These show that self-harming behaviour is twice as common among young people who have lost a parent to cancer. Poor family cohesion in the years before and after bereavement are important risk factors for self-harming behaviour. A fifth of the young people stated that they had not felt confident that their parent would receive good medical care during the last week of life. Receiving information from a doctor about the illness, the treatment and about death before the death occurred increased confidence in the parent’s healthcare. In principle, all the young people considered that teenagers should be informed when the parent’s death is imminent (a matter of hours or days, not weeks), but that many had not been informed and the healthcare professionals were rarely present at information sessions.

Forthcoming studies show, provisionally, that despite the fact that 6-9 years had passed since bereavement, almost half of the young people reported that they had not, or only to some extent, processed their grief. The risk was greatest among those who did not start grieving in the first 6 months after the bereavement (i.e. did not find a suitable way to grieve, had frighteningly strong reactions, and felt great concern for their healthy parent’s health). Unprocessed grief was associated with sleep problems and emotional numbness.