The Role of Stigma, Perceived Social Support, and Task-Oriented Coping Style in Relation with Life Satisfaction in Primary Caregivers of Children with Epilepsy: A Multiple Mediation Analysis
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Abstract
Objective: Stigma exacerbates poorer life satisfaction among caregivers of children with epilepsy (CWE); however, the underlying reasons for this connection are still not fully understood. This research aimed to investigate how coping strategies and social support can impact the connection between stigma and life satisfaction.
Method: A cross-sectional descriptive study was conducted on 210 primary caregivers of CWE from August to November 2023. The participants were selected through convenience sampling. The study included information on participants' demographics (such as gender, age, education level, duration of epilepsy, age of onset, seizure frequency) and four established self-report questionnaires. Caregivers completed self-report scales of perceived social support, stigma, life satisfaction, and coping style. We used the PROCESS 4.1 macro proposed by Hayes to analyze the direct and indirect associations between variables. In addition, SPSS-27 software was used to conduct Pearson correlation.
Results: The research findings confirmed that both perceived social support and task-oriented coping mechanisms played a mediating role in the connection between stigma and life satisfaction (β perceived social support = -0.11; 95% bootstrap CI: -0.12 to -0.02; β task-oriented coping = -0.14; 95% bootstrap CI: -0.26 to -0.05), respectively. Furthermore, the results of serial mediation analyses revealed that the link between stigma and life satisfaction is influenced by perceived social support and task-oriented coping in a sequential process (B = -0.029, 95% bootstrapped CI: -0.060 to -0.006).
Conclusion: These findings shed light on the role of perceived social support and task-oriented coping as serial mediators of the relationship between stigma and life satisfaction. Thus, identifying and correctly understanding the sources of support, as well as teaching effective task-oriented coping through mental health professionals, is necessary to reduce the stigma experienced by these caregivers and improve life satisfaction.
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2. Rozensztrauch A, Kołtuniuk A. The Quality of Life of Children with Epilepsy and the Impact of the Disease on the Family Functioning. Int J Environ Res Public Health. 2022;19(4): 2277.
3. Pokharel R, Poudel P, Lama S. Quality of life among caregivers of children with epilepsy: A cross-sectional study at Eastern Nepal. Epilepsia Open. 2021;6(1):120-6.
4. Yu Z, Shao Q, Hou K, Wang Y, Sun X. The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies. Front Psychiatry. 2022;13:987892.
5. Zhang M, Zhang H, Hu S, Zhang M, Fang Y, Hu J, et al. Investigation of Anxiety, Depression, Sleep, and Family Function in Caregivers of Children With Epilepsy. Front Neurol. 2021;12:744017.
6. Toledano-Toledano F, Luna D. The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study. Biopsychosoc Med. 2020;14:29.
7. Toledano-Toledano F, Moral de la Rubia J. Factors associated with anxiety in family caregivers of children with chronic diseases. Biopsychosoc Med. 2018;12:20.
8. Widjaja E, Guttmann A, Tomlinson G, Snead OC, 3rd, Sander B. Economic burden of epilepsy in children: A population-based matched cohort study in Canada. Epilepsia. 2021;62(1):152-62.
9. Rani A, Thomas PT. Stress and perceived stigma among parents of children with epilepsy. Neurol Sci. 2019;40(7):1363-70.
10. Başkale H, Çetinkaya B, Ceylan SS, Öztaş Ü. Satisfaction with life and cope of mothers with epileptic children. 2019.
11. Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess. 1985;49(1):71-5.
12. Jacoby A. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med. 1994;38(2):269-74.
13. Mendes TP, Crespo CA, Austin JK. Family Cohesion, Stigma, and Quality of Life in Dyads of Children With Epilepsy and Their Parents. J Pediatr Psychol. 2017;42(6):689-99.
14. Ghanean H, Nojomi M, Jacobsson L. Public awareness and attitudes towards epilepsy in Tehran, Iran. Glob Health Action. 2013;6:21618.
15. Forsgren L, Ghanean H, Jacobsson L, Richter J. On the experience of stigma by persons with epilepsy in Sweden and Iran--a comparative study. Seizure. 2013;22(9):748-51.
16. Jacobsson L, Ghanean H. Internalized stigma of mental illness in Sweden and Iran—A comparative study. Open J Psychiatr. 2013;2013.
17. Nabi Amjad R, Nikbakht Nasrabadi A, Navab E. Family Stigma Associated With Epilepsy: A Qualitative Study. J Caring Sci. 2017;6(1):59-65.
18. Lee E-J, Qin S, Park J, Ivins-Lukse M. Exploring the relationship between courtesy stigma and life satisfaction among caregivers of youth with intellectual and developmental disabilities. Stigma and Health. 2024.
19. Wang Y, Huang Z, Kong F. Parenting stress and life satisfaction in mothers of children with cerebral palsy: The mediating effect of social support. J Health Psychol. 2020;25(3):416-25.
20. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583-94.
21. Major B, O'Brien LT. The social psychology of stigma. Annu Rev Psychol. 2005;56:393-421.
22. Werner S, Shulman C. Subjective well-being among family caregivers of individuals with developmental disabilities: the role of affiliate stigma and psychosocial moderating variables. Res Dev Disabil. 2013;34(11):4103-14.
23. AboJabel H, Werner P. The mediating effect of social support and coping strategies on the relation between family stigma and caregiver burden among Israeli Arab family caregivers of people with Alzheimer's disease (AD). Aging Ment Health. 2022;26(8):1597-603.
24. Zamanian H, Amini-Tehrani M, Jalali Z, Daryaafzoon M, Ramezani F, Malek N, et al. Stigma and Quality of Life in Women With Breast Cancer: Mediation and Moderation Model of Social Support, Sense of Coherence, and Coping Strategies. Front Psychol. 2022;13:657992.
25. Lu M, Yang G, Skora E, Wang G, Cai Y, Sun Q, et al. Self-esteem, social support, and life satisfaction in Chinese parents of children with autism spectrum disorder. Res Autism Spectr Disord. 2015;17:70-7.
26. Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. J Pers Assess. 1990;55(3-4):610-7.
27. Gebeyehu F, Sahile A, Ayalew M. Burden, Social Support, and Life Satisfaction Among Caregivers of Children With Intellectual Disability: The Case of Felege Abay and Shembt Primary Schools, Bahir Dar, Ethiopia. Int Q Community Health Educ. 2019;39(3):147-53.
28. Jakobsen AV, Elklit A. Self-control and coping responses are mediating factors between child behavior difficulties and parental stress and family impact in caregivers of children with severe epilepsy. Epilepsy Behav. 2021;122:108224.
29. Lazarus RS. Stress, appraisal, and coping: Springer; 1984.
30. Endler NS, Parker J. Coping inventory for stressful situations: Multi-Health systems incorporated; 1990.
31. Zajdel M, Swan T, Robinson T, Keller KR, Mountcastle L, Koehly LM. Stress, Coping, and Physical Health in Caregiving. Transl Issues Psychol Sci. 2023;9(2):123-36.
32. Halstead EJ, Griffith GM, Hastings RP. Social support, coping, and positive perceptions as potential protective factors for the well-being of mothers of children with intellectual and developmental disabilities. Int J Dev Disabil. 2017;64(4-5):288-96.
33. Gamli IS, Sehman H, Gurnal AC, Simsek C. Perceived Social Support and Life Satisfaction Among Caregivers of Children and Adolescents in Health Measure.
34. Luo R, Ji Y, Liu YH, Sun H, Tang S, Li X. Relationships among social support, coping style, self-stigma, and quality of life in patients with diabetic foot ulcer: A multicentre, cross-sectional study. Int Wound J. 2023;20(3):716-24.
35. Hamama-Raz Y, Hamama L. Quality of life among parents of children with epilepsy: A preliminary research study. Epilepsy Behav. 2015;45:271-6.
36. Wolf EJ, Harrington KM, Clark SL, Miller MW. Sample Size Requirements for Structural Equation Models: An Evaluation of Power, Bias, and Solution Propriety. Educ Psychol Meas. 2013;76(6):913-34.
37. Maroufizadeh S, Ghaheri A, Omani Samani R, Ezabadi Z. Psychometric properties of the satisfaction with life scale (SWLS) in Iranian infertile women. Int J Reprod Biomed. 2016;14(1):57-62.
38. Austin JK, MacLeod J, Dunn DW, Shen J, Perkins SM. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy Behav. 2004;5(4):472-82.
39. Gholami Jam F, Eghlima M, Arshi M, Rahgozar M. The relationship between social stigma and life-style in people with epilepsy. Quarterly Journal of Social Work. 2014;3(3):10-5.
40. Besharat MA. Multidimensional scale of perceived social support: Questionnaire, instruction and scoring. 2019.
41. Kakabaraei K, Moradi A, Afrooz G, Hooman H, Shokri O. Factorial validity and measurement invariance of the short version of coping inventory for stressful situations among parents of normal and exceptional children. 2012.
42. Kakabaraei K, Moradi A, Afrooz G, Hooman H, Shokri O. Factorial validity and measurement invariance of the short version of coping inventory for stressful situations among parents of normal and exceptional children. 2012.
43. Hair J. Multivariate data analysis. Exploratory factor analysis. 2009.
44. Byrne BM. Structural equation modeling with Mplus: Basic concepts, applications, and programming: routledge; 2013.
45. Rani A, Thomas PT. Stress and perceived stigma among parents of children with epilepsy. Neurol Sci. 2019;40(7):1363-70.
46. Benson A, O'Toole S, Lambert V, Gallagher P, Shahwan A, Austin JK. The stigma experiences and perceptions of families living with epilepsy: Implications for epilepsy-related communication within and external to the family unit. Patient Educ Couns. 2016;99(9):1473-81.
47. Lim C, Putnam RD. Religion, social networks, and life satisfaction. American sociological review. 2010;75(6):914-33.
48. Siedlecki KL, Salthouse TA, Oishi S, Jeswani S. The Relationship Between Social Support and Subjective Well-Being Across Age. Soc Indic Res. 2014;117(2):561-76.
49. Yang C, Xia M, Han M, Liang Y. Social Support and Resilience as Mediators Between Stress and Life Satisfaction Among People With Substance Use Disorder in China. Front Psychiatry. 2018;9:436.
50. Ghanimi F, Danesh E, Dadkhah A, Taghilu S. Mediation role of coping strategies and perceived social support in relation to stress and quality of life in parents of children with Autism Spectrum Disorder. Journal of applied psychology. 2018;12(2):243-63.
51. van Andel J, Westerhuis W, Zijlmans M, Fischer K, Leijten FS. Coping style and health-related quality of life in caregivers of epilepsy patients. J Neurol. 2011;258(10):1788-94.
52. Holubova M, Prasko J, Ociskova M, Kantor K, Vanek J, Slepecky M, et al. Quality of life, self-stigma, and coping strategies in patients with neurotic spectrum disorders: a cross-sectional study. Psychol Res Behav Manag. 2019;12:81-95.
53. Wei W, Yang R, Zhang J, Chen H, Ye J, Su Q, et al. The Mediating Roles of Family Resilience and Social Support in the Relationship Between Illness Severity and Depressive Symptoms Among Primary Caregivers of Children With Epilepsy in China. Front Neurol. 2022;13:831899.
2. Rozensztrauch A, Kołtuniuk A. The Quality of Life of Children with Epilepsy and the Impact of the Disease on the Family Functioning. Int J Environ Res Public Health. 2022;19(4): 2277.
3. Pokharel R, Poudel P, Lama S. Quality of life among caregivers of children with epilepsy: A cross-sectional study at Eastern Nepal. Epilepsia Open. 2021;6(1):120-6.
4. Yu Z, Shao Q, Hou K, Wang Y, Sun X. The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies. Front Psychiatry. 2022;13:987892.
5. Zhang M, Zhang H, Hu S, Zhang M, Fang Y, Hu J, et al. Investigation of Anxiety, Depression, Sleep, and Family Function in Caregivers of Children With Epilepsy. Front Neurol. 2021;12:744017.
6. Toledano-Toledano F, Luna D. The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study. Biopsychosoc Med. 2020;14:29.
7. Toledano-Toledano F, Moral de la Rubia J. Factors associated with anxiety in family caregivers of children with chronic diseases. Biopsychosoc Med. 2018;12:20.
8. Widjaja E, Guttmann A, Tomlinson G, Snead OC, 3rd, Sander B. Economic burden of epilepsy in children: A population-based matched cohort study in Canada. Epilepsia. 2021;62(1):152-62.
9. Rani A, Thomas PT. Stress and perceived stigma among parents of children with epilepsy. Neurol Sci. 2019;40(7):1363-70.
10. Başkale H, Çetinkaya B, Ceylan SS, Öztaş Ü. Satisfaction with life and cope of mothers with epileptic children. 2019.
11. Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess. 1985;49(1):71-5.
12. Jacoby A. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med. 1994;38(2):269-74.
13. Mendes TP, Crespo CA, Austin JK. Family Cohesion, Stigma, and Quality of Life in Dyads of Children With Epilepsy and Their Parents. J Pediatr Psychol. 2017;42(6):689-99.
14. Ghanean H, Nojomi M, Jacobsson L. Public awareness and attitudes towards epilepsy in Tehran, Iran. Glob Health Action. 2013;6:21618.
15. Forsgren L, Ghanean H, Jacobsson L, Richter J. On the experience of stigma by persons with epilepsy in Sweden and Iran--a comparative study. Seizure. 2013;22(9):748-51.
16. Jacobsson L, Ghanean H. Internalized stigma of mental illness in Sweden and Iran—A comparative study. Open J Psychiatr. 2013;2013.
17. Nabi Amjad R, Nikbakht Nasrabadi A, Navab E. Family Stigma Associated With Epilepsy: A Qualitative Study. J Caring Sci. 2017;6(1):59-65.
18. Lee E-J, Qin S, Park J, Ivins-Lukse M. Exploring the relationship between courtesy stigma and life satisfaction among caregivers of youth with intellectual and developmental disabilities. Stigma and Health. 2024.
19. Wang Y, Huang Z, Kong F. Parenting stress and life satisfaction in mothers of children with cerebral palsy: The mediating effect of social support. J Health Psychol. 2020;25(3):416-25.
20. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583-94.
21. Major B, O'Brien LT. The social psychology of stigma. Annu Rev Psychol. 2005;56:393-421.
22. Werner S, Shulman C. Subjective well-being among family caregivers of individuals with developmental disabilities: the role of affiliate stigma and psychosocial moderating variables. Res Dev Disabil. 2013;34(11):4103-14.
23. AboJabel H, Werner P. The mediating effect of social support and coping strategies on the relation between family stigma and caregiver burden among Israeli Arab family caregivers of people with Alzheimer's disease (AD). Aging Ment Health. 2022;26(8):1597-603.
24. Zamanian H, Amini-Tehrani M, Jalali Z, Daryaafzoon M, Ramezani F, Malek N, et al. Stigma and Quality of Life in Women With Breast Cancer: Mediation and Moderation Model of Social Support, Sense of Coherence, and Coping Strategies. Front Psychol. 2022;13:657992.
25. Lu M, Yang G, Skora E, Wang G, Cai Y, Sun Q, et al. Self-esteem, social support, and life satisfaction in Chinese parents of children with autism spectrum disorder. Res Autism Spectr Disord. 2015;17:70-7.
26. Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. J Pers Assess. 1990;55(3-4):610-7.
27. Gebeyehu F, Sahile A, Ayalew M. Burden, Social Support, and Life Satisfaction Among Caregivers of Children With Intellectual Disability: The Case of Felege Abay and Shembt Primary Schools, Bahir Dar, Ethiopia. Int Q Community Health Educ. 2019;39(3):147-53.
28. Jakobsen AV, Elklit A. Self-control and coping responses are mediating factors between child behavior difficulties and parental stress and family impact in caregivers of children with severe epilepsy. Epilepsy Behav. 2021;122:108224.
29. Lazarus RS. Stress, appraisal, and coping: Springer; 1984.
30. Endler NS, Parker J. Coping inventory for stressful situations: Multi-Health systems incorporated; 1990.
31. Zajdel M, Swan T, Robinson T, Keller KR, Mountcastle L, Koehly LM. Stress, Coping, and Physical Health in Caregiving. Transl Issues Psychol Sci. 2023;9(2):123-36.
32. Halstead EJ, Griffith GM, Hastings RP. Social support, coping, and positive perceptions as potential protective factors for the well-being of mothers of children with intellectual and developmental disabilities. Int J Dev Disabil. 2017;64(4-5):288-96.
33. Gamli IS, Sehman H, Gurnal AC, Simsek C. Perceived Social Support and Life Satisfaction Among Caregivers of Children and Adolescents in Health Measure.
34. Luo R, Ji Y, Liu YH, Sun H, Tang S, Li X. Relationships among social support, coping style, self-stigma, and quality of life in patients with diabetic foot ulcer: A multicentre, cross-sectional study. Int Wound J. 2023;20(3):716-24.
35. Hamama-Raz Y, Hamama L. Quality of life among parents of children with epilepsy: A preliminary research study. Epilepsy Behav. 2015;45:271-6.
36. Wolf EJ, Harrington KM, Clark SL, Miller MW. Sample Size Requirements for Structural Equation Models: An Evaluation of Power, Bias, and Solution Propriety. Educ Psychol Meas. 2013;76(6):913-34.
37. Maroufizadeh S, Ghaheri A, Omani Samani R, Ezabadi Z. Psychometric properties of the satisfaction with life scale (SWLS) in Iranian infertile women. Int J Reprod Biomed. 2016;14(1):57-62.
38. Austin JK, MacLeod J, Dunn DW, Shen J, Perkins SM. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy Behav. 2004;5(4):472-82.
39. Gholami Jam F, Eghlima M, Arshi M, Rahgozar M. The relationship between social stigma and life-style in people with epilepsy. Quarterly Journal of Social Work. 2014;3(3):10-5.
40. Besharat MA. Multidimensional scale of perceived social support: Questionnaire, instruction and scoring. 2019.
41. Kakabaraei K, Moradi A, Afrooz G, Hooman H, Shokri O. Factorial validity and measurement invariance of the short version of coping inventory for stressful situations among parents of normal and exceptional children. 2012.
42. Kakabaraei K, Moradi A, Afrooz G, Hooman H, Shokri O. Factorial validity and measurement invariance of the short version of coping inventory for stressful situations among parents of normal and exceptional children. 2012.
43. Hair J. Multivariate data analysis. Exploratory factor analysis. 2009.
44. Byrne BM. Structural equation modeling with Mplus: Basic concepts, applications, and programming: routledge; 2013.
45. Rani A, Thomas PT. Stress and perceived stigma among parents of children with epilepsy. Neurol Sci. 2019;40(7):1363-70.
46. Benson A, O'Toole S, Lambert V, Gallagher P, Shahwan A, Austin JK. The stigma experiences and perceptions of families living with epilepsy: Implications for epilepsy-related communication within and external to the family unit. Patient Educ Couns. 2016;99(9):1473-81.
47. Lim C, Putnam RD. Religion, social networks, and life satisfaction. American sociological review. 2010;75(6):914-33.
48. Siedlecki KL, Salthouse TA, Oishi S, Jeswani S. The Relationship Between Social Support and Subjective Well-Being Across Age. Soc Indic Res. 2014;117(2):561-76.
49. Yang C, Xia M, Han M, Liang Y. Social Support and Resilience as Mediators Between Stress and Life Satisfaction Among People With Substance Use Disorder in China. Front Psychiatry. 2018;9:436.
50. Ghanimi F, Danesh E, Dadkhah A, Taghilu S. Mediation role of coping strategies and perceived social support in relation to stress and quality of life in parents of children with Autism Spectrum Disorder. Journal of applied psychology. 2018;12(2):243-63.
51. van Andel J, Westerhuis W, Zijlmans M, Fischer K, Leijten FS. Coping style and health-related quality of life in caregivers of epilepsy patients. J Neurol. 2011;258(10):1788-94.
52. Holubova M, Prasko J, Ociskova M, Kantor K, Vanek J, Slepecky M, et al. Quality of life, self-stigma, and coping strategies in patients with neurotic spectrum disorders: a cross-sectional study. Psychol Res Behav Manag. 2019;12:81-95.
53. Wei W, Yang R, Zhang J, Chen H, Ye J, Su Q, et al. The Mediating Roles of Family Resilience and Social Support in the Relationship Between Illness Severity and Depressive Symptoms Among Primary Caregivers of Children With Epilepsy in China. Front Neurol. 2022;13:831899.
| Files | ||
| Issue | Vol 20 No 2 (2025) | |
| Section | Original Article(s) | |
| Keywords | ||
| Coping Skill Epilepsy Life Satisfaction Mediation Analyses Social Stigma Social Support | ||
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How to Cite
1.
Parviniannasab AM, Dehghani F, Bazyari A, Bazrafshan M-R. The Role of Stigma, Perceived Social Support, and Task-Oriented Coping Style in Relation with Life Satisfaction in Primary Caregivers of Children with Epilepsy: A Multiple Mediation Analysis. Iran J Psychiatry. 2025;20(2):145-156.
