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Children of Cancer Patients are Too Often Excluded from the Disease Journey, Research Shows [ESMO Congress 2021 Press Release]

13 Sep 2021

LUGANO, Switzerland – The announcement of a cancer diagnosis abruptly and durably alters the course of daily life – not just for the person receiving it, but also for their family. New research (1) [to be] presented at the ESMO Congress 2021 suggests that adequate communication and support for children of cancer patients still represents a significant unmet need that parents require help to fulfil.

In 2020, an estimated 4.6 million individuals aged 20 to 54 years were diagnosed with the disease (2) at a time of their lives when they are most likely to be raising children. The impact of parental cancer on a child’s development varies according to the child’s age and the evolution of the illness, but also, crucially, depending on how the child has been included in the parent’s disease journey.

Giving bad news to their children and addressing the distress this may cause them is one of the most daunting tasks that parents face at a time when they must process their own emotions about the disease. Yet according to Prof. Carlo Alfredo Clerici, a clinical and child psychology expert from University of Milan, Italy, not involved in the study, “Current psychological perspectives see a certain degree of information to children about their parents’ disease, and about the possibility of their death, as useful and protective against traumatic phenomena.”

Ignorance is not bliss when a parent has cancer

korbi-sinen

The social and cultural resistance that often stands in the way of this type of dialogue with children is evident from the results of a survey of 103 patients in Tunisia, almost 90% of whom reported communication disorders on the subject of the parent’s illness and more than 40% choosing not to disclose the whole truth about their disease. According to study author Dr. Sinen Korbi, Institute Salah Azaiez, Tunis, the idea is widespread among patients that they are protecting their children’s psychosocial equilibrium by shielding them from the reality of the illness: “This was cited as a concern by seven of the 18 parents in our study who chose to conceal the truth from their children entirely,” he reported, adding that these represent missed opportunities to give hope to children at a time when, even in Tunisia where many cancers are diagnosed at an advanced stage, people do recover from the disease.

Almost all study participants (96%) observed behavioural changes in their children ranging from anxiety and depression, through academic difficulties all the way to violence and substance abuse – but only nine parents consulted a child psychiatrist. “Many people think they can handle these issues on their own or with help from relatives, but they need to be encouraged to report these problems to us so we can refer them to specialists if needed: this can be as simple as asking patients how their children are doing every time we see them,” said Korbi.

“This study makes clear 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, the fact that children build their own interpretation of life and that they can suffer significantly when they do not have adults helping them to stay in contact with reality,” said Clerici. “Future research should also aim to capture traumatic phenomena that unfold over time and which are associated with more worrying long-term consequences than the individual symptoms of distress reported here.”

Trauma becomes particularly likely when a child is confronted with a parent’s death from cancer. Communication with children about the disease should be an ongoing process that, ideally, would begin shortly after the announcement of an incurable cancer diagnosis and include practical preparations for life after the parent has died. These key conversations should be addressed in an age-appropriate way, but parents, who need guidance from professionals, mostly navigate the experience on their own, while health and social care professionals are often unaware of the challenges faced 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 suffering that words can neither prevent nor mitigate, Clerici underlined the importance of recognising that the support needs of children are not limited to the terminal phase of the disease and early stages of bereavement. “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 said. “Activating care resources that ensure long-term psychological support and monitoring of the child could help these individuals face the challenges of existence without feeling emotional loneliness or abandonment and, while meeting modest reimbursements from health systems, has the potential to produce significant healthcare savings in the long term.”

Notes to Editors

Please make sure to use the official name of the meeting in your reports: ESMO Congress 2021

Official Congress Hashtag:  #ESMO21

Disclaimer

This press release contains information provided by the author of the highlighted abstract and reflects the content of this abstract. It does not necessarily reflect the views or opinions of ESMO who cannot be held responsible for the accuracy of the data. Commentators quoted in the press release are required to comply with the ESMO Declaration of Interests policy and the ESMO Code of Conduct.

References

  1. Abstract 1489P_PR ‘Tunisian children and adolescents coping with parental cancer‘ will be available as ePoster as of Thursday, 16 September at 08:30 CEST. Annals of Oncology, Volume 32, 2021 Supplement 5
  2. Source: GLOBOCAN 2020 
  3. McCaughan, E., Semple, C.J. & Hanna, J.R. ‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer. Support Care Cancer (2021). https://doi.org/10.1007/s00520-021-06341-3

S. Korbi1, Y. Berrazega2, M. Nesrine2, H. Rachdi3, N. Daoud4, H. Boussen5 

1Department Of Medical Oncology Abderrahman Mami Hospital, Abderrahman Mami Hospital, Tunis, Tunisia, 2Medical Oncology, Hopital Abderrahmane Mami de Pneumophistiologie, Tunis, Tunisia, 3Medical Oncology Department, Hopital Abderrahmen Mami de Pneumo-Phistiologie, Tunis, Tunisia, 4Department Of Medical Oncology Abderrahman Mami Hospital, Hopital Abderrahmane Mami de Pneumophistiologie, Tunis, Tunisia, 5Oncology, Abderrahmen Mami Hospital, Tunis, Tunisia

Background: Children of parents with cancer may respond differently in terms of adjustment and maladjustment. We aimed to investigate the coping mechanisms of children of cancer parents in the Tunisian context where cancer remains a taboo subject in many families. 

Methods: Parents treated for cancer (n=103) who have children<18 years old, were asked to complete a questionnaire between July and December 2020.The questionnaire included items about emotional and behavioral impact on children.

Results: We interviewed 75 women (72.8%) and 28 men (27.2%) , mean age was 43 years old. Forty percent of the patients had adolescents (aged 12-18 years), 35% had school-aged children (6-12 years) and 25% had children preschoolers (<6 years). In our study, 82.5% of parents told their children about the disease. Among the children who were not aware of their parent’s illness, we observed significantly more preschoolers (61% vs 17.6%, p=0.001). The reasons given by the parents in these cases were the young age of their children (60%) and the fear of generating emotional and behavioral trauma and threatening their psychosocial equilibrium (40%). In 41.7% of cases, parents didn’t disclose the whole truth to their kids. De-dramatizing approach was particularly adopted with preschoolers in 94.1%, vs 62.5% in school-aged vs 17.9% in adolescents, p<0.01. The announcement procedure was perceived as a stressful task by half of the participants and 88.3% reported communication disorders with their children when referring to the parental illness. In our study, 96% of participants observed a behavioral change in their kids: anxiety in 35.1%, depression in 21.6%, violent behavior and aggression in 21.6%, emotional dependency in 10.3% and addiction in 6.2% of the cases. School failure was reported in 58.7% of cases mainly seen in children aged 6-12 years. Parent’s gender (OR=2.88 [0.38-21]) and educational level (OR=0.59 [0.059-5.894]) didn’t significantly predict kids’ behavior change. Only nine parents (8.7%) consulted a pedopsychiatrist. 

Conclusions: Tunisian parents with cancer seemed to lift the taboo surrounding their disease by involving their children in the acceptance process of the disease despite the developmental disruption it can generate. 

Legal entity responsible for the study: Korbi Sinan  

Funding: Has not received any funding  

Disclosure: All authors have declared no conflicts of interest. 

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