Emotional Distress and Subjectively Significant Difficulties in Adolescents with Oncological and Oncohematological Diseases Undergoing Chemotherapy and their Mothers

264

Abstract

The work aims to study emotional distress, the need for information about the disease and treatment, and the need for psychological assistance in adolescents undergoing inpatient treatment for oncological and oncohematological diseases. The paper presents research materials on a sample of patients aged 12—18 (N=28, 12 boys, 16 girls) and their mothers. We used distress scales for children (a version suitable for respondents aged 7—17) and parents with a modified Problem List, and questionnaires for doctors in the chemotherapy department. The results obtained indicate the severity of emotional distress, subjectively significant difficulties, the need for medical information and psychological assistance in patients and parents. Clinically significant distress was detected in 62.8% of adolescents and 64.4% of mothers. No association was found between reports of needs for information, psychological assistance, and overall distress scores in either adolescents or their mothers. Thus, it has been shown that when assessing the adolescent’s need for information and psychological assistance, it is advisable to focus not on the general dis tress score, but on the representation of difficulties associated with treatment, as well as on the adolescent’s own opinion about the presence of these needs. The inclusion in the Problem List of the distress scales of those subjectively significant difficulties that reflect the developmental characteristics of the patients and the specifics of the type of treatment, as well as the introduction of direct questions about the needs for information and psychological assistance, expands the possibilities of identifying adolescents in need of psychological support undergoing inpatient chemotherapy and facilitates their collaboration with the clinic’s multidisciplinary team of specialists.

General Information

Keywords: emotional distress, subjectively significant difficulties in the treatment process, pediatric oncology/oncohematology, adolescents, information needs, need for psychological assistance, distress scales.

Journal rubric: Empirical Researches

DOI: https://doi.org/10.17759/cpp.2021290106

Funding. The reported study was funded by Russian Foundation for Basic Research, project number 19-013-00682.

For citation: Riabova T.V., Klipinina N.V., Nikol'skaya N.S., Shutkova E.S., Stefanenko E.A., Khain A.E. Emotional Distress and Subjectively Significant Difficulties in Adolescents with Oncological and Oncohematological Diseases Undergoing Chemotherapy and their Mothers. Konsul'tativnaya psikhologiya i psikhoterapiya = Counseling Psychology and Psychotherapy, 2021. Vol. 29, no. 1, pp. 92–111. DOI: 10.17759/cpp.2021290106. (In Russ., аbstr. in Engl.)

References

  1. Klipinina N.V., Enikolopov S.N. Issledovanie adaptatsii k provodimomu lecheniyu u materei detei s zhizneugrozhayushchimi zabolevaniyami: rol’ distressa i sovladaniya [Study of adaptation to treatment in mothers of children with life-threatening diseases: the role of distress and coping]. Diagnostika v meditsinskoi (klinicheskoi) psikhologii: traditsii i perspektivy (k 105-letiyu S.Ya. Rubinshtein). Sbornik materialov nauchno-prakticheskoi konferentsii s mezhdunarodnym uchastiem (g. Moskva, 29—30 noyabrya 2016 g.) [Proceedings of the Scientific and Practical conference with international participation Diagnostics in medical (clinical) psychology: traditions and perspectives (on the occasion of the 105th anniversary of Susanna Rubinstein)]. Moscow: MSUPE, 2016, pp. 188—191.
  2. Klipinina N.V., Nikol’skaya N.S., Khain A.E., et al. Modifikatsiya oprosnogo lista Shkaly distressa dlya vyyavleniya trudnostei v raznykh sferakh zhizni u detei/podrostkov s onkologicheskimi/gematologicheskimi zabolevaniyami i soprovozhdayushchikh ikh blizkikh na raznykh etapakh lecheniya [Modification of the Distress Scale questionnaire to identify difficulties in different areas of life in children/adolescents with oncological/hematological diseases and their accompanying relatives at different stages of treatment]. Zeigarnikovskie chteniya. Diagnostika i psikhologicheskaya pomoshch’ v sovremennoi klinicheskoi psikhologii: problema nauchnykh i eticheskikh osnovanii. Materialy mezhdunarodnoi nauchno-prakticheskoi konferentsii (g. Moskva, 18—19 noyabrya 2020 g.) [Proceedings of the Scientific and Practical International conference Zeygarnik readings. Diagnostics and psychological assistance in modern clinical psychology: The problem of scientific and ethical grounds]. Moscow: MSUPE, 2020, pp. 282—285.
  3. Klipinina N.V., Ryabova T.V., Nikol’skaya N.S., et al. Sotsiodemograficheskie faktory i kharakteristiki emotsional’nogo distressa rossiiskikh detei i podrostkov s onkologicheskimi/gematologicheskimi zabolevaniyami i ukhazhivayushchikh vzroslykh [Sociodemographic factors and characteristics of emotional distress in Russian children and adolescents with oncological/hematological diseases and caring adults]. Psikhologiya stressa i sovladayushchego povedeniya: vyzovy, resursy, blagopoluchie. Materialy V Mezhdunarodnoi nauchnoi konferentsii (g. Kostroma, 26—28 sentyabrya 2019 g.) [Proceedings of the Fifth Scientific and Practical International conference Psychology of Stress and Coping Behavior: Challenges, resources, well-being]. Kostroma: KGU, 2019, pp. 264—268.
  4. Oleinikova I.N., Gens G.P., Sirota N.A. Issledovanie distressa u zhenshchin, bol’nykh zlokachestvennymi novoobrazovaniyami [Study of distress in women with malignant neoplasms] [Elektronnyi resurs]. Klinicheskaya i meditsinskaya psikhologiya: issledovaniya, obuchenie, praktika = Clinical and Medical Psychology: Research, Training, Practice, 2014, no. 3. Available at: http://medpsy.ru/ climp/2014_3_5/article13.php (Accessed 20.12.2020).
  5. Petrikov S.S., Kholmogorova A.B., Suroegina A.Yu., et al. Professional’noe vygoranie, simptomy emotsional’nogo neblagopoluchiya i distressa u meditsinskikh rabotnikov vo vremya epidemii COVID-19 [Burnout, symptoms of emotional disorders and distress in health care workers during the COVID-19 epidemic]. Konsul’tativnaya psikhologiya i psikhoterapiya = Counseling Psychology and Psychotherapy, 2020. Vol. 28 (2), pp. 8—45. DOI:10.17759/cpp.2020280202. (In Russ., abstr. in Engl.).
  6. Ryabova T.V., Klipinina N.V., Nikol’skaya N.S., i dr. Tochnost’ otsenki detskogo distressa roditelyami i meditsinskim personalom v protsesse statsionarnogo lecheniya detei s onkologicheskimi/gematologicheskimi zabolevaniyami [Accuracy of assessment of child distress by parents and medical staff in the process of inpatient treatment of children with oncological/hematological diseases]. Yaroslavskaya psikhologicheskaya shkola: istoriya, sovremennost’, perspektivy. Sbornik materialov Vserossiiskoi nauchnoi konferentsii (g. Yaroslavl’, 8—10 oktyabrya 2020 g.) [Proceedings of the Scientific and Practical International Conference Yaroslavl psychological school: History, modernity, prospects]. Yaroslavl’: YarGU; Filigran’, 2020, pp. 312—316.
  7. Ryabova T.V., Nikol’skaya N.C., Stefanenko E.A., i dr. Kontsept “emotsional’nyi distress” kak vozmozhnyi pokazatel’ narushenii adaptatsii u detei/podrostkov s onkologicheskimi i onkogematologicheskimi zabolevaniyami i ukhazhivayushchikh za nimi vzroslykh [The concept of “emotional distress” as a possible indicator of adaptation disorders in children/adolescents with oncological and oncohematological diseases and adults caring for them]. Rossiiskii zhurnal detkoi onkologii i gematologii = Russian Journal of Pediatric Oncology and Hematology, 2019. Vol. 6 (4), pp. 77—83. DOI:10.21682/2311-1267-2019-6-4-76-82
  8. Khain A.E., Kholmogorova A.B., Ryabova T.V. Uroven’ i dinamika distressa v semeinoi sisteme u patsientov podrostkovogo vozrasta, prokhodyashchikh lechenie v otdelenii transplantatsii gemopoeticheskikh stvolovykh kletok (TGSK) [The level and dynamics of distress in the family system in adolescent patients undergoing treatment in the Department of Hematopoietic stem cell Transplantation (HSCT)]. In Zhuravlev A.L., Tarabrina N.V., Sergienko E.A., et al. Psikhologiya povsednevnogo i travmaticheskogo stressa: ugrozy, posledstviya i sovladanie [Psychology of everyday and traumatic stress: Threats, consequences, and coping]. Moscow: Institut psikhologii RAN, 2016, pp. 215—242.
  9. Kholmogorova A.B., Subotich M.I., Rakhmanina A.A., i dr. Ispytyvaemyi uroven’ stressa i trevogi u patsientov mnogoprofil’nogo meditsinskogo tsentra [The experienced level of stress and anxiety in patients of a multidisciplinary medical center]. Zhurnal im. N.V. Sklifosovskogo “Neotlozhnaya meditsinskaya pomoshch’” = N.V. Sklifosovsky Journal “Emergency Medical Care”, 2019, no. 8, pp. 384—390. DOI:10.23934/2223-9022-2019-8-4-384-390
  10. Holland J. Preliminary guidelines for the treatment of distress. Oncology (Williston Park), 1997. Vol. 11, pp. 109—114.
  11. National Comprehensive Cancer Network. Distress management clinical practice guidelines in oncology. Journal of the National Comprehensive Cancer Network, 2003. Vol. 1 (3), pp. 344—374. DOI:10.6004/jnccn.2003.0031
  12. Patel S.K., Mullins W., Turk A., et al. Distress screening, rater agreement, and services in pediatric oncology. Psycho-Oncology, 2011. Vol. 20 (12), pp. 1324—1333. DOI:10.1002/pon.1859

Information About the Authors

Tatiana V. Riabova, PhD in Psychology, Senior Research Fellow, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia, ORCID: https://orcid.org/0000-0002-1517-2978, e-mail: riabova07@mail.ru

Natalia V. Klipinina, Junior Research Fellow, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia, ORCID: https://orcid.org/0000-0003-2975-0406, e-mail: nklip@mail.ru

Natalia S. Nikol'skaya, PhD in Psychology, Senior research fellow, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia, ORCID: https://orcid.org/0000-0002-9640-264X, e-mail: nsnikolskaya@mail.ru

Ekaterina S. Shutkova, Junior research fellow, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia, ORCID: https://orcid.org/0000-0003-3517-6412, e-mail: eshutkova@gmail.com

Ekaterina A. Stefanenko, PhD in Psychology, Senior Research Fellow, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia, ORCID: https://orcid.org/0000-0002-3495-7666, e-mail: matja@yandex.ua

Alina E. Khain, PhD in Psychology, Head of Clinical Psychology Department, Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia, ORCID: https://orcid.org/0000-0003-4217-1564, e-mail: khain.alina@gmail.com

Metrics

Views

Total: 709
Previous month: 16
Current month: 2

Downloads

Total: 264
Previous month: 3
Current month: 0