Study Confirms that Children of Cancer Patients are Too Often Excluded from the Disease Journey

A cancer diagnosis often abruptly and forever changes the course of daily life for the patient and his or her family. Research to be presented at the upcoming 2021 ESMO Congress suggests that adequate child communication and support for cancer patients remains an important unmet need. [1]

In 2020, an estimated 4.6 million people between the ages of 20 and 54 were diagnosed with the disease at a time in their lives when they are most likely to raise children. [2] The impact of parental cancer on a child’s development varies depending on the child’s age and the evolution of the disease, but also, crucially, depending on how the child is involved in the parent’s disease.

Sharing bad news with their children and dealing with the distress it can cause them is one of the most daunting tasks parents face at a time when they have to process their own emotions about the illness. But according to Professor Carlo Alfredo Clerici, MD, a clinical and child psychology expert from the University of Milan, Italy, who was not involved in the study, “[the] Current psychological perspectives see some measure of information given to children about their parents’ illness, and about the possibility of their death, as helpful and protective against traumatic phenomena.”

Ignorance is not bliss
The social and cultural resistance that often stands in the way of this kind of dialogue with children is shown by the results of a survey of 103 patients in Tunisia, of whom almost 90% reported communication difficulties about the parent’s illness and more than 40% choose so as not to reveal the whole truth about their illness.

According to the study’s author, Sinen Korbi, MD, Salah Azaiez Institute, Tunis, the idea is widespread among patients that they protect their children’s psychosocial balance by protecting them from the reality of the disease.

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“This was cited as a concern by seven of the 18 parents in our survey who chose to completely hide the truth from their children,” Korbi reported, adding that these are missed opportunities to give hope to children in a time when, even in Tunisia where many cancers are diagnosed at an advanced stage, people do recover from the disease.

Sinen Korbi, MD, Salah Azaiez Institute, Tunis,

The study
As part of their study, Korbi and his team interviewed 75 women (72.8%) and 28 men (27.2%), with an average age of 43 years. In total, 40% of the participating patients had children aged 12-18 years, 35% had school-aged children (6-12 years) and 25% had preschoolers (<6 years).

In 82.5% of cases, parents told their children about the disease. Among the children who were unaware of their parents’ illness, the researchers observed significantly more preschoolers (61% versus 17.6%, p=0.001).

Participating patients said that in cases where their children were very young (60%), parents were afraid of causing emotional and behavioral trauma and threatening their psychosocial balance (40%). In 41.7% of cases, parents did not reveal the whole truth to their children. The researchers used a dedramatizing approach with preschoolers in 94.1%, vs 62.5% in school age vs 17.9% in adolescents, p<0.01. Explaining the parents' illness was experienced as a stressful task by half of the participants, with 88.3% reporting communication difficulties with their children.

In Korbi’s study, nearly all study participants (96%) saw behavioral changes in their children, ranging from anxiety in 35.1%, depression in 21.6%, violent behavior and aggression in 21.6%, to academic difficulties in 58, 7% of cases (mainly in children aged 6-12 years) to violence and substance abuse in 6.2% of cases, but only nine parents (8.7%) consulted a child psychiatrist.

The gender of the parent (OR=2.88 [0.38-21]) and educational level (OR=0.59 [0.059-5.894]) did not significantly predict children’s behavioral change. “Many people think they can handle these issues alone or with the help of family members, but they should be encouraged to report these issues to us so we can refer them to specialists if necessary: ​​this could be as simple as asking patients how their children do every time we see them,” Korbi said.

“This research highlights the need to increase knowledge about the role of psychological and emotional dimensions in people’s lives. Efforts should be made to better understand and take into account, in a way that is compatible with social and cultural perspectives, that children build their own interpretation of life and that they can suffer significantly if they do not have adults to support them. help to stay in touch with reality,” explained Professor Clerici.

“Future research should also aim to capture traumatic phenomena that unfold over time and are associated with more distressing long-term consequences than the individual symptoms of distress listed here,” he added. .

Trauma becomes especially likely when a child faces the death of a parent from cancer. Communication with children about the disease should be an ongoing process that should ideally begin shortly after the announcement of an incurable cancer diagnosis and include practical preparations for life after the parent has passed away.

The experts agree that key conversations should be conducted in an age-appropriate manner, but parents, who need guidance from professionals, usually navigate the experience on their own, while health and social care professionals are often unaware of the challenges facing them. they face during this period. [3]

Distinguishing between how much it is possible to prepare a child for the loss of a parent to reduce traumatic phenomena and the extent to which this loss constitutes a traumatic suffering that words cannot prevent or alleviate, Clerici emphasized the importance of recognizing that the support needs of children are not limited to the late stages of the disease and early stages of death.

“Their entire growth path will be shaped by the challenge of finding in the surviving parent, in new social and emotional relationships, opportunities to make up for their loss,” he explained.

“Activating health care tools that ensure long-term psychological support and monitoring of the child could help these individuals cope with the challenges of existence without feeling emotional loneliness or abandonment and while receiving modest reimbursements from health systems, the potential to realize significant health care savings in the long term,” concludes Clerici.

13 diamonds
Korbio’s conclusions, to be presented at the 2021 ESMO Congress, are something the Dutch-born writer Manon Rinsma experienced after losing her mother at a very young age to glioblastoma, a form of brain cancer. In her book, 13 Diamonds – Life before death from a Child’s Perspective, published in 2018, she writes about the trauma, the unmet need, and how losing her mother changed her life.

In an interview with Sonia Portillo and Peter Hofland for The Onco’Zine Brief, Rinsma explained that for her remaining family – finding an answer to the question “how do you help a child when a relative has cancer” was not only difficult. , it was also one without a clear answer. However, she explained that the pain of losing a parent can be worse if a child is not prepared. It can confuse, hurt and anger them that important facts – explained at the level of understanding the child’s age – were not shared with them.

The reason, she explained, is that children really rely on parents to bring order and security into their lives. Parents help them understand the world around them and their place in it. The lagging parent may understand what this means. But what does it mean for a child to lose a parent? Risma said that while it’s not possible to control the reality of dying, it is possible to make a real difference in how a child copes… and move on with his or her life after a parent is passed away.

[1] Abstract 1489P_PR ‘Tunisian children and adolescents coping with cancer in their parents’ will be available as an ePoster from Thursday 16 September at 08:30 CEST. Annals of Oncology, Volume 32, 2021 Supplement 5
[2] Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, Bray F. Global Cancer Statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2021 May;71(3):209-249. doi: 10.3322/caac.21660. Epub 2021 Feb 4 PMID: 33538338.
[3] McCaughan E., Semple CJ, and Hanna JR Don’t forget the children: a qualitative study when a parent is at the end of life due to cancer. Cancer Care Support (2021).

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