Interrelationship of psychological distress, basic beliefs and perceptions of family relationships in informal caregivers of children and adults with epilepsy
- 作者: Shishkova A.M.1, Bocharov V.V.2,1, Tverdokhlebova A.M.1, Chernaya Y.S.2,1, Vuks A.J.1, Mikhailov V.A.1, Sivakova N.A.1
-
隶属关系:
- V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
- St. Petersburg State Pediatric Medical University
- 期: 卷 13, 编号 4 (2022)
- 页面: 115-127
- 栏目: Clinical psychology
- URL: https://journal-vniispk.ru/pediatr/article/view/114943
- DOI: https://doi.org/10.17816/PED134115-127
- ID: 114943
如何引用文章
详细
BACKGROUND: Relatives caring for an epilepsy patient play a significant role in the care system and maintaining the well-being of the chronically ill and often suffer from significant stress.
AIM: The aim of the study was to reveal the relationship of psychological distress, basic beliefs and perceptions of family relationships in relatives taking care of children and adults with epilepsy.
MATERIALS AND METHODS: The study involved 62 relatives caring for patients with epilepsy, 44 relatives of children (mean [±SD] age, 34,64 ± 6,73 years) and 18 relatives of adults (mean [±SD] age, 48,72 ± 10,99 years). The Symptom Checklist-90-Revised (SCL-90-R), the World Assumption Scale and the Family Environment Scale was used as an assessment tools. Also semi-structured interview for assessing socio-demographic and clinical characteristics was applied.
RESULTS: The results of the study revealed significant similarities of the studied groups both in the explication of the psychopathological symptoms and in perception of their own personality, the surrounding world and intra-family interaction. Informal caregivers of such patients demonstrates significant variability and severity of psychopathological symptoms. And their perception of themselves and the surrounding world is characterized by the “façade” tendencies that act as psychological protection that prevents the catastrophizing of the subjective assessment of the situation associated with the chronic disease of a loved one.
CONCLUSIONS: The study demonstrated the need to develop specialized psychotherapeutic interventions aimed at reducing the level of psychological distress in informal caregivers of patients with epilepsy. During the development and carrying out of such interventions, it is important to take into account the subjective assessment of caregiver’s available life situation, as well as his/her personal values and attitudes that largely determine the severity of psychopathological symptoms.
作者简介
Alexandra Shishkova
V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
Email: shishaspb@mail.ru
PhD, Senior Research Associate, Laboratory of clinical psychology and psychodiagnostics
俄罗斯联邦, Saint PetersburgViktor Bocharov
St. Petersburg State Pediatric Medical University; V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
编辑信件的主要联系方式.
Email: bochvikvik@gmail.com
PhD, Head, Department of Clinical Psychology
俄罗斯联邦, Saint Petersburg; Saint PetersburgAnastasia Tverdokhlebova
V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
Email: a-tverd1@mail.ru
Junior Research Associate, Laboratory of Clinical Psychology and Psychodiagnostics
俄罗斯联邦, Saint PetersburgYulia Chernaya
St. Petersburg State Pediatric Medical University; V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
Email: psiheja13@mail.ru
Junior Research Associate, Laboratory of clinical psychology and psychodiagnostics
俄罗斯联邦, Saint Petersburg; Saint PetersburgAleksandr Vuks
V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
Email: a.ja.vuks@gmail.com
Head Specialist, Scientific and organizational Department
俄罗斯联邦, Saint PetersburgVladimir Mikhailov
V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
Email: vladmikh@yandex.ru
MD, PhD, Dr. Sci. (Med.), Head of the Institute of Neuropsychiatry, Chairperson of the Department of treatment of patients with organic mental disorders and epilepsy
俄罗斯联邦, Saint PetersburgNatalia Sivakova
V.M. Bekhterev National Medical Research Centre for Psychiatry and Neurology
Email: dr.sivakovan@gmail.com
MD, PhD, Senior Research Associate of the Department of treatment of patients with organic mental disorders and epilepsy
俄罗斯联邦, Saint Petersburg参考
- Bocharov VV, Shishkova AM. Osobennosti lichnostnogo i semeinogo funktsionirovaniya rodstvennikov narkozavisimykh. Saint Petersburg: Nestor-Istoriya, 2016. 335 p. (In Russ.)
- Bocharov VV, Shishkova AM, Chernaya YuS. Ehmotsional’noe vygoranie u materei detei s khronicheskoi invalidiziruyushchei somaticheskoi patologiei. Proceeding of the All-Russian scientific and practical congress dedicated to the 100th anniversary of the department of psychiatry of the I St. Petersburg State University Academician I.P. Pavlov: “Zhenskoe psikhicheskoe zdorov’e: mezhdistsiplinarnyi status”. Saint Petersburg: Al’ta Astra, 2018. P. 31–33. (In Russ.)
- Guzeva VI. Ehpilepsiya i neehpilepticheskie paroksizmal’nye sostoyaniya u detei. Moscow: Meditsinskoe informatsionnoe agentstvo, 2007. 568 p. (In Russ.)
- Guzeva OV, Guzeva VI, Guzeva VV, et al. The results of an evaluation of quality of care and life in children with epilepsy. Pediatrician (St. Petersburg). 2017;8(2): 32–43. (In Russ.) doi: 10.17816/PED8232-43
- Dorofeeva MYu, Pivovarova AM, Pivovarov DS, et al. Sotsial’nye aspekty ehpilepsii. Vliyanie ehpilepsii na zhizn’ patsientov i ikh rodstvennikov. Dannye oprosa “S mysl’yu o budushchem”. Vestnik ehpileptologii. 2019;(1):75–87. (In Russ.)
- Isaev DN. Ehmotsional’nyi stress. Psikhosomaticheskie i somatopsikhicheskie rasstroistva u detei. Saint Petersburg: Rech’, 2005. 400 p. (In Russ.)
- Karlov VA, Petrukhin AS. Ehpilepsiya u podrostkov. S.S. Korsakov journal of neurology and psychiatry. 2002;102(9):9–13. (In Russ.)
- Padun MA, Kotel’nikova AV. Modifikatsiya metodiki issledovaniya bazisnykh ubezhdenii lichnosti R Yanoff-Bul’man. Psikhologicheskii zhurnal. 2008;29(4): 98–106. (In Russ.)
- Semakina NV, Mikhailov VA, Bagaev VI. Social and psychological characteristics of the quality of life of parents of children with epilepsy. Epilepsy and paroxysmal conditions. 2013;5(1):31–37. (In Russ.)
- Tarabrina NV. Praktikum po psikhologii posttravmaticheskogo stressa. Saint Petersburg: Piter, 2001. 255 p. (In Russ.)
- Chernaya YuS, Shishkova AM, Bocharov VV. Sootnoshenie ehmotsional’nogo vygoraniya i vyrazhennosti zhalob na psikhopatologicheskuyu simptomatiku u materei i ottsov, vospityvayushchikh detei s ogranichennymi vozmozhnostyami zdorov’ya. Proceeding of the international science and practice conference: “Zeigarnikovskie chteniya: Diagnostika i psikhologicheskaya pomoshch’ v sovremennoi klinicheskoi psikhologii: problema nauchnykh i ehticheskikh osnovanii”; 2020 Nov 18–19. Moscow: FGBOU VO MGPPU, 2020. 751 p. (In Russ.)
- Ehidemiller EhG, Dobryakov IV, Nikol’skaya IM. Semeinyi diagnoz i semeinaya psikhoterapiya: uchebnoe posobie. 2 izd. Saint Petersburg: Rech’, 2006. 352 p. (In Russ.)
- www.who.int [Internet]. Ehpilepsiya. Vsemirnaya organizatsiya zdravookhraneniya, 2022 [accessed: 10.08.2022]. Available from: https://www.who.int/ru/news-room/fact-sheets/detail/epilepsy (In Russ.)
- Bailey LD, Schwartz L, Dixon-Salazar T, et al. Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Epilepsy Behav. 2020;112:107377. doi: 10.1016/j.yebeh.2020.107377
- Gonçalves C, Martins S, Fernandes L. Dravet syndrome: Effects on informal caregivers’ mental health and quality of life — A systematic review. Epilepsy Behav. 2021;122:108206. doi: 10.1016/j.yebeh.2021.108206
- Karakis I, Cole AJ, Montouris GD, et al. Caregiver burden in epilepsy: determinants and impact. Epilepsy Res Treat. 2014;2014:808421. doi: 10.1155/2014/808421
- Lai S-T, Tan W-Y, Wo MM–C, et al. Burden in caregivers of adults with epilepsy in Asian families. Seizure. 2019;71:132–139. doi: 10.1016/j.seizure.2019.07.008
- Oliveira MC, Lima EM, de Paiva MLN, Valente KDR. Factors associated with caregiver burden of adults with epilepsy in a middle-income country. Seizure. 2022;98:1–7. doi: 10.1016/j.seizure.2022.03.015
- Pokharel R, Poudel P, Lama S, et al. Burden and its predictors among caregivers of patient with epilepsy. J Epilepsy Res. 2020;10(1):24–30. doi: 10.14581/jer.20005
- Poochikian-Sarkissian S, Sidani S, Wennberg R, Devinset GM. Seizure freedom reduces illness intrusiveness and improves quality of life in epilepsy. Can J Neurol Sci. 2008;35(3):280–286. doi: 10.1017/S0317167100008842
- Walker ER, Barmon С, McGee RE, et al. Perspectives of adults with epilepsy and their support persons on self-management support. Qual Health Res. 2014;24(11): 1553–1566. doi: 10.1177/1049732314548880
- Westphal-Guitti AC, Alonso NB, Vaz Pedroso M, et al. Quality of life and burden in caregivers of patients with epilepsy. J Neurosci Nurs. 2007;39(6):354–360. doi: 10.1097/01376517-200712000-00006
补充文件
