Participation of Underage Patients in the Discussion-making Process Regarding Their Health and Stay in Hospital: Social Aspect

41

Abstract

The article dwells to one of the important issues of modern society — the preservation and maintenance of the younger generation’s health treating children as an active subject, endowed with rights and obligations, who are eligible to take part in decision-making process directly related to their lives. The authors of the article focused on the need to revise generally accepted practices in the field of child health protection due to the rapid changes in modern society, the introduction of new digital technologies, including in medicine, the emergence of appropriate behavioral strategies that require scientific justification, changes in regulatory the legal framework, the readiness of social institutions (family, education, healthcare) to change paradigms regarding the autonomy of children. Based on the research of Russian and foreign scientists, the directions of research, educational, managerial and technological activities in the interests of childhood development are highlighted, which will expand the space of children's participation.

General Information

Keywords: child participation; minor patient; health; disease; health care system; autonomy; agency; health protection

Journal rubric: Social Psychology

Article type: scientific article

DOI: https://doi.org/10.17759/ssc.2023040201

Received: 09.10.2023

Accepted:

For citation: Besschetnova O.V., Mayorova-Shcheglova S.N. Participation of Underage Patients in the Discussion-making Process Regarding Their Health and Stay in Hospital: Social Aspect [Elektronnyi resurs]. Sotsial’nye nauki i detstvo = Social Sciences and Childhood, 2023. Vol. 4, no. 2, pp. 7–22. DOI: 10.17759/ssc.2023040201. (In Russ., аbstr. in Engl.)

References

  1. Aksenova E.I., Besschetnova O.V. Pokazateli dostupnosti i kachestva meditsinskoi pomoshchi, obespechivayushchie udovletvorennost' naseleniya meditsinskoi pomoshch'yu v razlichnykh stranakh mira. Ekspertnyi obzor [Indicators of accessibility and quality of medical care, ensuring the satisfaction of the population with medical care in various countries of the world. Expert review.]. Moscow: GBU «NIIOZMM DZM», 2021. 40 p.
  2. Archakova T.O., Garifulina E.Sh. Uchastie detei v Rossii: teoreticheskoe osmyslenie i razvitie praktiki [Elektronnyi resurs] [Child Participation in Russia: Theoretical and Practical Developments]. Sotsial’nye nauki i detstvo = Social Sciences and Childhood, 2020. Vol. 1, no. 1, pp. 68–87. DOI:10.17759/ssc.2020010106
  3. Besschetnova O.V., Volkova O.A., Aliev Sh.I. Organizatsiya obucheniya detei, nakhodyashchikhsya na dlitel'nom lechenii [Organization of education for children undergoing long-term treatment]. Problemy sotsial'noi gigieny, zdravookhraneniya i istorii meditsiny [Problems of social hygiene, healthcare and the history of medicine], 2022. Vol. 30, no. 5, pp. 876–884. DOI:10.32687/0869-866X-2022-30-5-876-884
  4. Besschetnova O.V., Maiorova-Shcheglova S.N. Osvoenie sotsial'noi roli patsienta v period detstva [Mastering the social role of a patient during childhood]. Sotsiologicheskie issledovaniya [Sociological research], 2023. Vol. 49, no. 7, pp. 75–83. DOI:10.31857/S013216250026585-6
  5. Bovina I.B., Dvoryanchikov N.V., Dani L., Em M.-A., Milekhin A.V., Gayamova S.Yu., Yakushenko A.V. Zdorov'e v predstavleniyakh detei i podrostkov [Health in the representations of children and adolescents]. Eksperimental'naya psikhologiya [Experimental psychology], 2018. Vol. 11, no. 1, pp.61–74. DOI:10.17759/exppsy.2018110104
  6. Groshev I.V. Osobennosti vospriyatiya, osoznaniya i formirovaniya vnutrennei kartiny bolezni u devochek i mal'chikov [Features of perception, awareness and formation of the internal picture of the disease in girls and boys]. Sotsiologiya meditsiny [Sociology of Medicine], 2016. Vol. 15, no. 2, pp.91–97.
  7. Erpyleva S. Rozhdayutsya li deti sotsial'nymi aktorami? [Are children born as social actors?]. Antropologicheskii forum [Anthropological Forum], 2019, no. 42, pp. 54–60.
  8. Isaev D.N. Emotsional'nyi stress, psikhosomaticheskie i somatopsikhicheskie rasstroistva u detei [Emotional stress, psychosomatic and somatopsychic disorders in children]. St. Petersburg: Rech' [Speech], 2005. 400 p.
  9. Lomakina I.G. Grazhdansko-pravovoe regulirovanie otnoshenii po okazaniyu meditsinskikh uslug v Rossiiskoi Federatsii [Civil law regulation of relations for the provision of medical services in the Russian Federation]. Dis. … kand. yur. nauk. Moscow: Ros. un-t druzhby narodov (RUDN), 2006. 194 p.
  10. Mayorova-Shcheglova S.N., Mitrofanova S.Yu. Rannee vzroslenie ili infantilizatsiya: paradoks sobytiinosti sovremennogo detstva [Early adulthood or infantilization: the paradox of the eventfulness of modern childhood]. Vestnik Sankt-Peterburgskogo universiteta. Sotsiologiya [Bulletin of St. Petersburg University. Sociology], 2020. Vol. 13, no. 1, pp. 25–39. DOI:10.21638/spbu12.2020.102
  11. Novoselova E.N. Zdorov'e detei: sub"ektivnye otsenki roditelei i ob"ektivnye kharakteristiki [Children's health: subjective assessments of parents and objective characteristics]. Vestnik Moskovskogo universiteta. Ser. 18. Sotsiologiya i politologiya [Bulletin of the Moscow University. Ser. 18. Sociology and Political Science], 2022. Vol. 28, no. 3, pp. 114–131.
  12. Posulikhina N.S. Pravovoe obespechenie stimulirovaniya vnedreniya innovatsii v sistemu zdravookhraneniya: opyt zarubezhnykh stran [Legal support for stimulating the introduction of innovations into the healthcare system: the experience of foreign countries]. Vestnik Universiteta im. O.E. Kutafina [Bulletin of the O.E. Kutafin University], 2020, no. 5(69), pp. 112–121.
  13. Sagalaeva E.S. Pravovoe regulirovanie okazaniya meditsinskikh uslug nesovershennoletnim [Legal regulation of the provision of medical services to minors]. Dis. … kand. yur. nauk. Moscow: Ros. gos. sotsial. in-t, 2007. 166 p.
  14. Semina T.V. Meditsina i obshchestvo: mikrouroven' sotsial'nogo vzaimodeistviya [Medicine and society: micro-level of social interaction]. Vestnik Moskovskogo universiteta. Ser. 18. Sotsiologiya i politologiya [Bulletin of the Moscow University. Ser. 18. Sociology and Political Science], 2020. Vol. 26, no. 3, pp. 43–65. DOI:10.24290/1029-3736-2020-26-3-43-65
  15. Telitsyna A.Yu. Otsenka detskogo blagopoluchiya: mezhdunarodnyi i rossiiskii opyt v ramkakh teorii novoi sotsiologii detstva [Elektronnyi resurs] [Evaluation of Children’s Well-being: International and Russian Experience in the Framework of the Theory of the New Sociology of Childhood]. Sotsial’nye nauki i detstvo = Social Sciences and Childhood, 2022. Vol. 3, no. 2, pp. 120–131. DOI:10.17759/ssc.2022030208
  16. Ulybina E.V., Gruzdeva O.V. Predstavleniya chasto boleyushchikh detei starshego doshkol'nogo vozrasta o zdorov'e i zdorovom obraze zhizni, primenenie idei ortobioza roditelyami na puti preodoleniya bolezni detei [Representations of frequently ill children of senior preschool age about health and a healthy lifestyle, the use of ideas of orthobiosis by parents on the way to overcome the disease of children]. Internet-zhurnal Mir nauki. Pedagogika i psikhologiya [Online Journal World of Science. Pedagogy and psychology], 2018. Vol. 6, no. 5, pp. 1–11. Available at: https://mir-nauki.com/PDF/27PSMN518.pdf (Accessed 13.06.2023).
  17. Ushakova V.R. Perezhivaniya v otnoshenii bolezni u detei s khronicheskimi somaticheskimi zabolevaniyami [Experiences regarding illness in children with chronic somatic diseases]. Problemy sovremennogo obrazovaniya [Problems of modern education], 2021, no. 3, pp. 70–80.
  18. Federal'nyi zakon «O vnesenii izmenenii v otdel'nye zakonodatel'nye akty Rossiiskoi Federatsii» ot 31.12.2017 N 482-FZ (poslednyaya redaktsiya) [Elektronnyi resurs] [Federal Law "On Amendments to Certain Legislative Acts of the Russian Federation" dated 31.12.2017 No. 482-FZ (latest edition)]. Konsul'tantPlyus [ConsultantPlus], 2022. Available at: http://www.consultant.ru/document/cons_doc_LAW_286744/ (Accessed 14.06.2023).
  19. Federal'nyi zakon «Ob osnovakh okhrany zdorov'ya grazhdan v Rossiiskoi Federatsii» ot 21.11.2011 N 323-FZ (poslednyaya redaktsiya) [Elektronnyi resurs]. Konsul'tantPlyus [ConsultantPlus], 2023. Available at: https://www.consultant.ru/document/cons_doc_LAW_121895/ (Accessed 13.06.2023).
  20. Filipova A.G., Bukhtiyarova I.N. O smyslakh, bar'erakh i praktikakh uchastiya detei: razmyshleniya nad sed'mym razdelom natsional'noi strategii deistvii v interesakh detei [On the meanings, barriers and practices of children's participation: reflections on the seventh section of the national strategy of action in the interests of children]. Zhurnal issledovanii sotsial'noi politiki [Journal of Social Policy Research], 2022, no. 1, pp. 23–26. DOI:10.17323/727-0634-2022-20-1-23-36
  21. Khamitova G.M. Grazhdansko-pravovoe polozhenie nesovershennoletnikh patsientov v Rossiiskoi Federatsii [The civil status of minor patients in the Russian Federation]: avtoreferat dis. ... kand. yur. nauk. Kazan: Privolzh. feder. un-t, 2018. 230 p.
  22. Chicherin L.P., Al'bitskii V.Yu., Shchepin V.O. Znachenie teorii pokolenii dlya realizatsii mediko-sotsial'nykh potrebnostei detei i ikh semei v Rossii [The significance of the theory of generations for the realization of the medical and social needs of children and their families in Russia]. Voprosy sovremennoi pediatrii [Issues of modern pediatrics], 2022, no. 21(2), pp. 66–71. DOI:10.15690/pf.v19i2.2403
  23. Beauchamp T., Childress J.F. Principles of biomedical ethics. 5th ed. Oxford, UK: Oxford University Press, 2001. 454 p.
  24. Biin H., Koppel K., Masso M. et al. Lapse Õiguste ja Vanemluse Uuring [Study on Children’s Rights and Parenting] [Electronic resource]. Praxis, 2018. Available at: http://www.praxis.ee/tood/lapse-oigused-ja-vanemlus-2018/ (Accessed 23.06.2023).
  25. Clarke S. An Exploration of the Child’s Experience of Staying in Hospital from the Perspectives of Children and Children’s Nurses using Child-Centered Methodology. Comprehensive child and adolescent nursing, 2021, no. 45(1), pp. 105–118. DOI:10.1080/24694193.2021.1876786
  26. Coyne I. Children’s participation in consultations and decision-making at health service level: A review of the literature. International Journal of Nursing Studies, 2008 a, no. 45, pp. 1682–1689. DOI:10.1016/j.ijnurstu.2008.05.002
  27. Larsson I., Staland‐Nyman C., Svedberg P., Nygren J.M., Carlsson I.M. Children and young people's participation in developing interventions in health and well‐being: a scoping review. BMC Health Services Research, 2018, no. 18(1), pp. 507–527. DOI:10.1186/s12913-018-3219-2
  28. Li Z., Li M., Patton G.C. et al. Global development assistance for adolescent health from 2003 to 2015. JAMA Network Open, 2018, no. 1, pp. e181072. DOI:10.1001/jamanetworkopen.2018.1072
  29. Nordlind A., Sundqvist A.S., Anderzén-Carlsson A., Almblad A.C., Ängeby K. How pediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross-sectional study. Health Expect, 2022, no. 25(1), pp. 384–393. DOI:10.1111/hex.13396
  30. Paron K., Kutsar D. Creation of child-patient’s autonomy in a child-parent-doctor relationship: Medical doctors’ perspectives. Childhood, 2023, no. 30(2), pp. 145–160. DOI:10.1177/09075682231169615
  31. Patientlag [The Patient Law] dated 2014.06.19 no. 2014:821 2014 [Electronic resource]. Regeringskansliets rättsdatabaser, 2023. Available at: http://rkrattsbaser.gov.se/sfst?bet=2014:821 (Accessed 23.06.2023).
  32. Sellars E., Pavarini G., Michelson D. et al. Young people’s advisory groups in health research: scoping review and mapping of practices. Archives of Disease in Childhood, 2021, no. 106, pp. 698–704. DOI:10.1136/archdischild-2020-320452
  33. Shier H. Pathways to participation: openings, opportunities and obligations. Children & Society, 2001, no. 15, pp. 107–117. DOI:10.1002/chi.617
  34. Tsang V.W.L., West L., Woods C., Koh C.J., McCune S., Mullin T., Smith S.R., Gaillard S., Claverol J., Nafria B., Preston J., Dicks P., Thompson C. Role of Patients and Parents in Pediatric Drug Development. Therapeutic Innovation & Regulatory Science, 2019, no. 53(5), pp. 601–608. DOI:10.1177/2168479018820875
  35. Warraitch A., Bruce D., Lee M., Curran P., Khraisha Q., Hadfield K. Involving adolescents in the design, implementation, evaluation and dissemination of health research: an umbrella review protocol. BMJ Open, 2023, no. 13(6), pp. e069695. DOI:10.1136/bmjopen-2022-069695

Information About the Authors

Oksana V. Besschetnova, Doctor of Sociology, Professor of the Department of Sociology and Medaicommunications, Moscow State Humanitarian and Economic University, Moscow, Russia, ORCID: https://orcid.org/0000-0002-4181-9886, e-mail: besschetnovaov@mgupp.ru

Svetlana N. Mayorova-Shcheglova, Doctor of Sociology, Moscow State University of Psychology & Education, Moscow, Russia, ORCID: https://orcid.org/0000-0003-4935-9148, e-mail: sheglova-s@yandex.ru

Metrics

Views

Total: 232
Previous month: 12
Current month: 2

Downloads

Total: 41
Previous month: 1
Current month: 0