Avoid common mistakes on your manuscript.
The diagnosis of cancer in children is an event of undue stress not only for children themselves, but also for their parents or primary caregivers. Even though this entity is well recognised, this is often not well-explored and has not been systematically studied. The recent article published in IJP by Reshetnikov et al. focused on this often-neglected topic and is an important addition to the existing literature [1].
The study reports the result of a large-scale survey of 237 parents of children diagnosed with cancer from Russia, nearly all of whom (99.1%) reported feeling emotions of fear or stress. Interestingly, the financial difficulties also accounted for a major cause of worry for significant proportion of respondents (55.3%) and parents often resorted to financial assistance. Additionally, difficulty in geographic access to specialized treatment centres was also reported by a considerable number of respondents (50.5%). In an analysis of 22893 children with cancer from 3 centres in India by Bhatia et al. it was observed that sex disparity at diagnosis for pediatric malignancies was more apparent for situations requiring financial hardship and where access to treatment centres is difficult [2]. Similarly, a qualitative study among children with acute lymphoblastic leukemia (ALL) and their caregivers from India also reported similar themes regarding caregiver burden, especially financial distress and stress of relocation for accessing treatment [3]. These observations underscore the importance of equitable distribution of pediatric oncology care across the country, rather than restricting them to specialized centres in major cities. A shared care approach by involvement of local primary care physicians in routine non-intensive oncological care under supervision may be an effective model to allay financial hardship and improve healthcare access.
The results of the survey also highlighted the fact that the diagnosis of cancer in a child affects family dynamics often leading to worsening of interpersonal relations between parents themselves and even with other siblings. A previous study, which assessed health-related quality of life of children with ALL from parents’ perspective, revealed parents often overrated the quality of life of children [4]. This suggests the existence of a possible disconnect between the experience of children and parents during the cancer treatment journey. Hence, psychological support during the course of treatment is imperative not only for children but also for parents during the whole course of treatment. Indeed, 63.3% of parents in the survey by Reshetnikov et al. reported a need for psychological assistance [1].
A pilot randomized trial by Kaushal et al. from India evaluated a parent–child conjoint psychological intervention module among children in maintenance phase of ALL, and showed the feasibility and early efficacy of such systematic intervention in improving psychosocial variables for both children and parents [5]. Such interventions should be expanded to other age-groups and malignancies and systematically studied in different socio-cultural backgrounds for discerning their efficacy and broader acceptability. Incorporation of psychologists as part of oncology care team, for providing necessary interventions for children and caregivers alike, would go a long way for improving holistic care for children with cancer.
References
Reshetnikov A, Gevandova M, Prisyazhnaya N, Vyatkina N. The role of parents in their child’s cancer diagnosis, treatment, rehabilitation, and socialization. Indian J Pediatr. 2022. https://doi.org/10.1007/s12098-022-04387-7.
Bhatia KP, Ganguly S, Sasi A, et al. Sex disparity in childhood cancer in India: a multi-centre, individual patient data analysis. Lancet Oncol. 2023;24:54–63.
Kaushal T, Satapathy S, Chadda RK, Bakhshi S, Sagar R, Sapra S. Hospital based psychosocial support program for children with ALL and their families: a comprehensive triad’s perspective. Indian J Pediatr. 2019;86:118–25.
Bansal M, Sharma KK, Bakhshi S, Vatsa M. Perception of Indian parents on health-related quality of life of children during maintenance therapy of acute lymphoblastic leukemia: a comparison with siblings and healthy children. J Pediatr Hematol Oncol. 2014;36:30–6.
Kaushal T, Satapathy S, Bakhshi S, Sagar R, Chadda RK. A parent-child conjoint psychological intervention for children in maintenance phase of acute lymphoblastic leukemia: Feasibility and preliminary outcomes from a randomized control pilot trial. Arch Pediatr. 2022;29:145–52.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
None.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Ganguly, S., Bakhshi, S. The Journey of Parents during Treatment of Cancer in Children: An Often Neglected but Important Concern. Indian J Pediatr 91, 8–9 (2024). https://doi.org/10.1007/s12098-023-04933-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12098-023-04933-x