Multiple losses in families of children with cancer: A retrospective sociological analysis

Cover Page

Cite item

Full Text

Open Access Open Access
Restricted Access Access granted
Restricted Access Subscription Access

Abstract

BACKGROUND: Current advances in medicine determine the higher survival rate of children with various nosological forms of malignant tumors, which shifts the focus of attention of specialists from the development of treatment protocols to the study of early and long-term effects of antitumor therapy in children and their families. One of the urgent problems of psychological and social rehabilitation in pediatric oncology is the analysis of the psycho-traumatic factors of treatment and the long-term medical and social consequences for the child’s family when developing a strategy for effective psychological support for this observation group at the treatment stage.

OBJECTIVE: We aimed to study the specifics of living with losses in families raising a child with oncopathology and the features of the child’s re-adaptation and resocialization after overcoming an oncological disease (at the remission stage).

MATERIALS AND METHODS: A retrospective analysis of data obtained in the course of a sociological study of parents (n=1298) whose children completed treatment for various malignant tumors is presented. The study, carried out by a questionnaire survey of mothers (n=1131) and fathers (n=167) living in 78 regions of Russia, made it possible to qualify the problems of family members of a child with cancer in terms of multiple loss and grief and substantiate the strategy of psychological assistance to this group.

RESULTS: During the establishment of the oncological diagnosis of the child and their antitumor treatment, the family experiences some traumatic events associated with drastic changes in their lives. According to the findings of the study, the deterioration in normal life concerns health (in total, a third of the respondents: 12.9% of mothers noted a deterioration in their general health and in 15.2% of women, serious reproductive health disorders); work (leaving and dismissal from work affected 25.3% of mothers and 2% of fathers, 11.4% of mothers and 9.6% of fathers were forced to change their job or place of work); and a drop in the level of family income (the proportion of low-income families in the sample was significantly higher than in the Russian population as a whole — 41.8 and 31.4%, respectively, social benefits and pensions accounted for a significant share of income in 57.3% of female respondents and 26.3% of men, and there were changes in life prospects due to graduation, relocation, divorce, and severance of relations with relatives and friends). Each of these events is perceived as stress/loss and triggers a grieving process in family members (primarily parents) that requires the professional help of a clinical psychologist. In general, the range of events triggering the grieving process in the families of the study group is much wider, but the quality and volume of psychological care in domestic cancer hospitals are still extremely low.

CONCLUSION: The dynamics of the development of psychological and social rehabilitation in domestic pediatric oncology determine the need to develop strategies and methods of psychological support for family members of a sick child at the treatment stage, taking into account the early and long-term medical and social consequences of antitumor therapy.

About the authors

Marina A. Guseva

D. Rogachev National Medical Research Center for Pediatric Hematology, Oncology and Immunology

Email: gusmarina@mail.ru
ORCID iD: 0000-0002-3092-8892
SPIN-code: 8370-4218

Cand. Sci. (Soc.), clinical psychologist – head of the group

Russian Federation, Moscow

Elena V. Zhukovskaya

D. Rogachev National Medical Research Center for Pediatric Hematology, Oncology and Immunology

Email: elena_zhukovskay@mail.ru
ORCID iD: 0000-0002-6899-7105
SPIN-code: 8225-6360

MD, Dr. Sci. (Med.), head of the department

Russian Federation, Moscow

Olga L. Lebed

Sechenov First Moscow State Medical University (Sechenov University)

Author for correspondence.
Email: lebed_olga@mail.ru
ORCID iD: 0000-0002-0218-462X
SPIN-code: 9128-6176

Cand. Sci. (Sociol.), associate professor

Russian Federation, Moscow

References

  1. Statistika po detskoi zabolevaemosti v Rossii, otchet 2019 goda [Internet]. Meditsinskaya entsiklopediya [cited 2022 Dec 29]. Available from: https://resursor.ru/content/statistika-po-detskoj-zabolevaemosti-v-rossii-otchet-2019-goda. (In Russ).
  2. Kaprin AD, Starinskii VV, Petrova GV, editors. Zlokachestvennye novoobrazovaniya v Rossiiv 2018 godu (zabolevaemost’ i smertnost’). Moscow: MNIOI im. P.A. Gertsena-Zheludkova OG, Polyakov VG, Rykov MYu, et al. Klinicheskie proyavleniya onkologicheskikh zabolevanii u detei: prakticheskie rekomendatsii. St. Petersburg: Tipografiya Mikhaila Fursova; 2017. (In Russ).
  3. Steliarova-Foucher E, Colombet M, Ries LAG, et al. International incidence of childhood cancer, 2001-10: A population based registry study. Lancet Oncol. 2017;18(6):719–731. doi: 10.1016/S1470-2045(17)30186-9
  4. Siemińska MJ, Greszta E. The family of a child with cancer — changes within the family system. Polish Psychological Bulletin. 2008;39(4):192–201. doi: 10.2478/v10059-008-0023-6
  5. Lavee Y, Mey-Dan M. Patterns of change in marital relationships among parents of children with cancer. Health Soc Work. 2003;28(4):255–263.doi: 10.1093/hsw/28.4.255
  6. Pai AL, Greenley RN, Lewandowski A, et al. A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol. 2007;21(3):407–415. doi: 10.1037/0893-3200.21.3.407
  7. Kylmä J, Juvakka T. Hope in parents of adolescents with cancer — Factors endangering and engendering parental hope. Eur J Oncol Nurs. 2007;11(3):262–271.doi: 10.1016/j.ejon.2006.06.007
  8. Long KA, Marsland AL. Family Adjustment to Childhood Cancer: A Systematic Review. Clin Child Fam Psychol Rev. 2011;14(1):57–88. doi: 10.1007/s10567-010-0082-z
  9. Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: A systematic review. J Pediatr Psychol. 2013;38(8):809–828. doi: 10.1093/jpepsy/jst049
  10. Carlsson T, Kukkola L, Ljungman L, et al. Psychological distress in parents of children treated for cancer: An explorative study. PLoS One. 2019;14(6):e0218860 doi: 10.1371/journal.pone.0218860
  11. Robinson KE, Gerhardt CA, Vannatta K, Noll RB. Parent and family factors associated with child adjustment to pediatric cancer. J Pediatr Psychol. 2007;32(4):400–410. doi: 10.1093/jpepsy/jsl038
  12. Kurtanova YuE, Burdukova YuA, Shcherbakova AM, et al. Social adaptation of children with cancer after prolonged treatment. Journal of Modern Foreign Psychology. 2020;9(3):127–138. (In Russ). doi: 10.17759/jmfp.202009031
  13. Pelletier W, Bona K. Assessment of Financial Burden as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer. 2015;62(Suppl 5):S619–S631. doi: 10.1002/pbc.25714
  14. Beauchemin M, Santacroce SJ, Bona K, et al. Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States. BMC Health Serv Res. 2022;22(1):832. doi: 10.1186/s12913-022-08201-0
  15. Bruce A, Sheilds L, Molzahn A, et al. Stories of Liminality: Living With Life-Threatening Illness. J Holist Nurs. 2014;32(1):35–43. doi: 10.1177/0898010113498823
  16. Kübler-Ross E, Kessler D. On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribner; 2005.
  17. Sem’ya i rozhdaemost’. Osnovnye rezul’taty vyborochnogo obsledovaniya. 2009 god. Moscow: PC «Statistika Rossii»; 2010. (In Russ).
  18. Wijnberg-Williams BJ, Kamps WA, Klip EC, Hoekstra-Weebers JE. Psychological distress and the impact of social support on fathers and mothers of pediatric cancer patients: Long-term prospective results. J Pediatr Psychol. 2006;31(8):785–792. doi: 10.1093/jpepsy/jsj087
  19. Kamibeppu K, Murayama Sh, Ozono S, et al. Predictors of Posttraumatic Stress Symptoms Among Adolescent and Young Adult Survivors of Childhood Cancer. J Fam Nurs. 2015;21(4):529–550. doi: 10.1177/1074840715606247
  20. Gevandova MG. Detskaya onkologiya: stigma diagnoza glazami roditelej. Sociology of Medicine. 2021;20(2):27–35. (In Russ). doi: 10.17816/socm100964
  21. Tseytlin GYa, Guseva MA, Antonov AI, Rumyantsev AG. Medical and social problems of families with a child with oncological disease and their solutions in pediatric oncology practice. Pediatria n.a. G.N. Speransky. 2017;96(2):173–181. (In Russ).
  22. Resler SR, Lacayo NJ, Jo B. A pilot study of an online cognitive rehabilitation program for executive function skills in children with cancer-related brain injury. Brain Inj. 2011;25(1):100–112. doi: 10.3109/02699052.2010.536194
  23. Volodin NN, Kasatkin VN, Tseitlin GYa, et al. Strategy of medical, psychological and social rehabilitation for children with haematological and oncological diseases. Oncohematology. 2015;1:7–15. (In Russ). doi: 10.17650/1818-8346-2015-1-7-15
  24. Reshetnikov A, Gevandova M, Prisyazhnaya N, Vyatkina N. The Role of Parents in Their Child’s Cancer Diagnosis, Treatment, Rehabilitation, and Socialization. Indian Journal of Pediatrics. 2022. (In Russ). doi: 10.1007/s12098-022-04387-7
  25. Rumyantsev AG, Volodin NN, Kasatkin VN, Mitrakov NN. The concept of health, neuro-cognitive and psycho-social rehabilitation of children with oncohematological diseases. Bulletin of Rehabilitation Medicine. 2015;1:65–71. (In Russ).
  26. Lebed` OL, Guseva MA, Tseitlin GYa. V sem`e – tyazhelo bol`noj rebyonok. Izuchenie takoj sem`i i rabota s neyu. Social`naya pedagogika v Rossii. 2014;1:20–26. (In Russ).
  27. Gevandova MG, Amlaev KR, Grinin VM. The public organizations and Internet-community as agents of supporting children with oncologic diseases. Sociology of Medicine. 2018;17(1):49–53. (In Russ). doi: 10.18821/1728-2810-2018-17-1-49-53
  28. Guseva MA, Barchina ET, Tseitlin GYa. The problems of siblings in pediatric oncology. Voprosy gematologii / onkologii i immunopatologii v pediatrii. 2013;12(2):38–47. (In Russ).
  29. Van Dongen-Melman JE, De Groot A, Hählen K, Verhulst FC. Verhulst. Impact of childhood leukemia on family planning. Pediatr Hematol Oncol. 1995;12(2):117–127. doi: 10.3109/08880019509029544

Supplementary files

Supplementary Files
Action
1. JATS XML
Download
2. Fig. 1. Completion of the first marriages in families as a result of divorce or death of one of the parents in relation to the establishment of a diagnosis and the start of antitumor treatment.Note. The division value on the X-axis is 1 year, negative values correspond to the period before the child was diagnosed; 0 — year of diagnosis; positive values on the x-axis — the period after the diagnosis of the child. Median — -4 years; the average number of years between the termination of marriage and the onset of the disease — (4.0 years [mode — 0 years (n=42)]. The standard deviation for the indicator «number of completed marriages» is 8.54, the coefficient of variation — 5.946.

Download (155KB)
Indexing metadata
3. Fig. 2. Incomplete family cycle of a child with cancer.Note. РП — birth of the first child, РПР — birth of the last child, ООР — separation of the first child from parents, РС — family breakdown (divorce, death of one of the spouses), ВДЦ — forced deprivation of one of the parents from the child, ВДЦ2 — forced deprivation of both parents from the patient child, ВРС — forced separation of spouses, ВДС— forced deprivation of siblings from each other, ЗБ — marriage.

Download (93KB)
Indexing metadata

Copyright (c) 2022 Guseva M.A., Zhukovskaya E.V., Lebed O.L.

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
 


This website uses cookies

You consent to our cookies if you continue to use our website.

About Cookies