Abstract
Psychosocial care of pediatric cancer patients and their families is as critical as the medical and surgical components of their therapies. Strains on family communication and structure and financial need are linked to poorer psychological outcomes for both patients and families. It is critical that children remain as connected as possible to their communities and extended families during therapy. For Ukrainian pediatric cancer patients receiving care outside of their nation's borders on February 24, 2022, the Russian invasion of Ukraine compounded these problems. Based on conversations with patients and parents, we evaluated the psychosocial impact of war on pediatric Ukrainian cancer patients and their families who had left their country before the onset of the conflict to undergo treatment of pediatric malignancies at our medical center. These families shared with us the problems they have experienced after the Russian invasion of Ukraine. Their concerns can be summarized in 4 categories: (
1
) emotional stress experienced by the patients, families and relatives related to the dangers of war; (2
) difficulties in obtaining previous hospital records in Ukraine; (3
) medical expenses; and (4) uncertainty regarding the patient's and their family's future and the ability of the children to ever return to their homes. Psychosocial distress relating to the violence of war will hopefully pass in near future, but our pediatric patients and their families will continue to face stressors related to displacement and financial concerns for some time to come.Introduction
Psychosocial care of pediatric cancer patients and their families is as critical as the medical and surgical components of their therapies. Strains on family communication and structure and financial need are linked to poorer psychological outcomes for both patients and families. It is critical that children remain as connected as possible to their communities and extended families during therapy.1 In the best of circumstances, these issues present significant challenges. For Ukrainian pediatric cancer patients receiving care outside of their nation's borders on February 24, 2022, the Russian invasion of Ukraine compounded these problems.
Methods and Materials
Turkey ranks among the one of the top ten medical tourism destinations in the world. Our hospital, Acibadem Maslak Hospital, has a dedicated Pediatric Oncology Unit that treats both Turkish children as well as numerous patients from outside Turkey, including the Ukraine. Based on conversations with patients and parents, we evaluated the psychosocial effect of war on pediatric Ukrainian cancer patients and their families who had left their country before the onset of the conflict to undergo treatment of pediatric malignancies at our medical center.
Results
During our conversations with the families of pediatric cancer patients from Ukraine who were being treated in our hospital, these families also shared with us the problems they have experienced after the Russian invasion of Ukraine. Their concerns can be summarized in 4 categories: (
1
) emotional stress experienced by the patients, families, and relatives; (2
) difficulties in obtaining previous hospital records in Ukraine; (3
) medical expenses; and (4) uncertainty regarding the patient's and their family's future and the ability of the children to ever return to their homes (Table 1).Emotional stressors
Parents of children undergoing cancer therapies are at risk of developing stress disorders.2 The added strain of worrying about family members who remained behind in Ukraine has placed additional burdens on our patients and their family members. At critical time when a parent's attention would normally be focused on the plight of their child, the dangers of the war to family members at home in Ukraine has created a stressful distraction. One of our mothers stated that the stability of the emotional bond between a mother and her child is critical to the child's emotional well-being. She noted that emotional stress experienced by a mother is reflected by her child and has deep effects. Our patient's mother stated that she was grateful that she and her husband were in Turkey for the treatment of their children, but she was constantly worried about the physical safety of her brother (who was conscripted in Ukraine), and her 69-year-old father. Her unresolved worries upset her and in turn were felt by her child at time when she thought her child needed more peace to cope with the emotional demands of cancer therapy.
However, not all comments we heard from families were negative. One of our patient's mothers told us that the hospital they would have preferred had been bombed and “thank God (that) they were here.” Parents have commented on their good fortune in gaining access to the resources to treat their child outside of Ukraine as they reported that there were grave difficulties in accessing drugs there, where there are shortages of essential medications for oncology treatment, for both curative and palliative purposes. Another patient's family remarked that their child would have been treated in an air raid shelter in trying conditions had they stayed in Ukraine rather than on a dedicated pediatric oncology ward.
Disruption of the transfer of medical records
The physical destruction of Ukrainian cities and medical facilities, dispersion of clinic staff, and generalized disruption of the normal functioning of civil society by the war has created challenges in obtaining medical records detailing past radiation treatments of children. One patient presented to our clinic for recurrent disease who needed reirradiation. However, the patient arrived without records of prior treatment fields and isodose distributions and we were forced to decline to treat them due to the absence of this information.
Financial toxicities
Payment for cancer treatment costs, and other necessities, is a major issue for displaced children and their parents. Typically, our patients’ families are able to afford the cost of their therapies by relying on assistance from relatives and traditional aid organizations. Now, with the widespread disruption caused by the war, they are not able to access these resources. One of our families, expecting the coming war, asked to transfer all funds from treatment out of the country as they anticipated being unable access bank accounts in Ukraine after the invasion. There has been an outpouring humanitarian aid from around the world, however, and some of our patients have been able to obtain financial assistance from international aid organizations who have dedicated funds for the medical relief of Ukrainian refugees.
Inability to return home after the war
In normal times, the removal of a child from their support network of family and friends to spend time at a distant tertiary care facility creates emotional distress. Separation from their home is a particular source of anxiety. Additionally, the interruption that occurs in a child's education can also have a lasting, negative effect. Adolescent patients are at risk from social isolation from their peers, in addition to being isolated from their extended family.3 The ongoing war and the conditions likely to be present in Ukraine at its cessation create a unique set of challenges for patients and their families. In addition to the uncertainty parents face regarding the ultimate success of their child's cancer treatment, our families now face great uncertainty, both emotionally and financially, regarding where they will live and if they will ever see their homes and other family members in the future. Many of the families under our care have stated they will not return to Ukraine at the end of their child's treatment but will settle outside of the country in nations such as Germany. They have related that being physically unable to return home due to both the danger and physical destruction of transport infrastructure in Ukraine has caused them lasting anxiety and uncertainty, which in turn distresses their children.
Conclusion
At the time this manuscript was written, there is not yet a solution to the problems outlines above. In all likelihood, even in the event of the end of the war, it will take considerable time for the infrastructure needed to resume routine pediatric oncological care to recuperate. Psychosocial distress relating to the violence of war will hopefully pass in near future, but our pediatric patients and their families will continue to face stressors related to displacement and financial concerns for some time to come. There are nonprofit foundations such Tabletochki (https://tabletochki.org),
4
currently trying to help displaced Ukrainian pediatric cancer patients receive care and treatment. We are now taking action to increase the number of such patients accepted by our hospital as the number of Ukrainian children fleeing their country increases. We hope for cessation of war in Ukraine and urge everyone to support and help the displaced population of Ukraine in their time of need.Tabletochki. Available at: https://tabletochki.org, 2022. [Accessed March 22, 2022].
Table 1Psychosocial stressors on pediatric cancer patients and their families being treated in Turkey during the war in Ukraine
| 1. Emotional stress from added uncertainties related to the physical dangers of the war to family members remaining in Ukraine 2. Medical record transfer interruptions caused by the ongoing hostilities and damage to cancer treatment centers 3. Financial strain owing to disruption of Ukraine's financial system and loss of income 4. Inability to return a child to their home and extended family after treatment due to the war and likelihood of widespread destruction of medical and civil infrastructure |
References
- Pediatric Palliative Care in Oncology.J Clin Oncol. 2020; 38: 954-962
- Acute stress in parents of children newly diagnosed with cancer.Pediatr Blood Cancer. 2008; 50: 289-292
- Social isolation and connection in adolescents with cancer and survivors of childhood cancer: A systematic review.J Adolsec. 2021; 87: 15-27
Tabletochki. Available at: https://tabletochki.org, 2022. [Accessed March 22, 2022].
Article info
Publication history
Published online: April 01, 2022
Accepted:
March 28,
2022
Received:
March 21,
2022
Footnotes
Sources of support: Dr Ozyar receives honorarium and research funding from Viewray.
Disclosures: Dr Miller reports income from ASTRO.
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Copyright
© 2022 The Author(s). Published by Elsevier Inc. on behalf of American Society for Radiation Oncology.
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