Download PDF
CC BY-NC-ND 4.0 · International Journal of Epilepsy 2022; 08(01): 006-015
DOI: 10.1055/s-0043-1764396
Original Article

Reassures Me There Are People Around Who Care about Me: Analyzing Meanings of Support for People with Epilepsy

Christine Walker 
1   Department of Medicine, University of Melbourne, Parkville, Victoria, Australia
2   Epilepsy Foundation, Surrey Hills, Victoria, Australia
,
Chris L. Peterson
2   Epilepsy Foundation, Surrey Hills, Victoria, Australia
3   Department of Social Inquiry, La Trobe University, Bundoora, Victoria, Australia
› Author Affiliations
› Further Information
   Permissions and Reprints

Abstract

Aims The study aimed to examine the nature and outcomes of social support for the well-being and quality of life (QoL) of adults with epilepsy.

Methods The Australian Epilepsy Longitudinal Survey's 5th Wave included the Medical Outcomes Study Modified Social Support Survey on four dimensions of social support and the QOLIE-31. Both numerical data and open-ended responses were analyzed quantitatively and qualitatively. A mixed method was used where quantitative analysis used t-tests, analysis of variance and block recursive regression, and qualitative analysis identified themes.

Results Three-hundred thirty-two people with epilepsy (PWE) participated. The quantitative component showed that for emotional/informational support being older and living alone were key factors. These as well as household income were important in tangible support. For affectionate support living alone and household income were factors, but only income was a factor for positive social interaction. In addition, only positive social interaction predicted increased QoL. In the qualitative component of the study both positive and negative supports were identified for the emotional/informational supports. Many reported the benefits of having information, although some reported failure to have their needs taken seriously by health professionals or epilepsy associations. Inability to drive was an important feature of negative tangible support as was finding some assistive services unaffordable. Reports of positive social interaction identified being accepted as a person with epilepsy that is the primary concern. Peer support plays a role here.

Discussion The findings of factors affecting the four dimensions of support in this study have supported a number of studies. This includes the effects of positive social interaction on QoL. The qualitative analysis supports these results, but it also contributes to deeper understanding of support in the lives of PWE.

Conclusion Social support is a particularly important issue for PWE. The results of this study demonstrate the complexities and benefits of obtaining the appropriate forms of support. This survey took place before the coronavirus disease 2019 pandemic and it may well be that this phenomenon affects PWE's support needs.

Keywords

mixed method - support - quality of life


Publication History

Article published online:
10 April 2023

© 2023. Indian Epilepsy Society. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India

 

  • References

  • 1 Szemere E, Jokeit H. Quality of life is social–towards an improvement of social abilities in patients with epilepsy. Seizure 2015; 26: 12-21
    CrossrefPubMedGoogle Scholar
  • 2 Lu B, Elliott JO. Beyond seizures and medications: normal activity limitations, social support, and mental health in epilepsy. Epilepsia 2012; 53 (02) e25-e28
    CrossrefPubMedGoogle Scholar
  • 3 Amir M, Roziner I, Knoll A, Neufeld MY. Self-efficacy and social support as mediators in the relation between disease severity and quality of life in patients with epilepsy. Epilepsia 1999; 40 (02) 216-224
    CrossrefPubMedGoogle Scholar
  • 4 Baker GA. The psychosocial burden of epilepsy. Epilepsia 2002; 43 (Suppl. 06) 26-30
    CrossrefPubMedGoogle Scholar
  • 5 Burkert S, Kendel F, Kiep H, Holtkamp M, Gaus V. Gender differences in social support in persons with epilepsy. Epilepsy Behav 2015; 46: 205-208
    CrossrefPubMedGoogle Scholar
  • 6 Mlinar S, Petek D, Cotič Ž, Mencin Čeplak M, Zaletel M. Persons with epilepsy: Between social inclusion and marginalisation. Behav Neurol 2016; 2016: 2018509
    CrossrefPubMedGoogle Scholar
  • 7 Steiger BK, Jokeit H. Why epilepsy challenges social life. Seizure 2017; 44: 194-198
    CrossrefPubMedGoogle Scholar
  • 8 Wang YH, Haslam M, Yu M, Ding J, Lu Q, Pan F. Family functioning, marital quality and social support in Chinese patients with epilepsy. Health Qual Life Outcomes 2015; 13: 10
    CrossrefPubMedGoogle Scholar
  • 9 Whatley AD, DiIorio CK, Yeager K. Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy. Health Educ Res 2010; 25 (04) 575-584
    CrossrefPubMedGoogle Scholar
  • 10 Unalan D, Soyuer F, Basturk M, Ersoy AO, Elmali F, Ozturk A. Perceived social support systems' and depression's effects on attitudes regarding coping strategies for the disease in patients with epilepsy. Neurosciences (Riyadh) 2015; 20 (01) 17-26
    PubMedGoogle Scholar
  • 11 Sherbourne CD, Stewart AL. The MOS social support survey. Soc Sci Med 1991; 32 (06) 705-714
    CrossrefPubMedGoogle Scholar
  • 12 Southwick SM, Vythilingam M, Charney DS. The psychobiology of depression and resilience to stress: implications for prevention and treatment. Annu Rev Clin Psychol 2005; 1 (01) 255-291
    CrossrefPubMedGoogle Scholar
  • 13 Gottlieb BH, Bergen AE. Social support concepts and measures. J Psychosom Res 2010; 69 (05) 511-5201
    CrossrefPubMedGoogle Scholar
  • 14 Lee HY, Oh J, Kawachi I. et al. Positive and negative social support and depressive symptoms according to economic status among adults in Korea: cross-sectional results from the Health Examinees-Gem Study. BMJ Open 2019; 9 (04) e023036
    CrossrefPubMedGoogle Scholar
  • 15 van Oostrom MA, Tijhuis MA, de Haes JC, Tempelaar R, Kromhout D. A measurement of social support in epidemiological research: the social experiences checklist tested in a general population in The Netherlands. J Epidemiol Community Health 1995; 49 (05) 518-524
    CrossrefPubMedGoogle Scholar
  • 16 Charyton C, Elliott JO, Lu B, Moore JL. The impact of social support on health related quality of life in persons with epilepsy. Epilepsy Behav 2009; 16 (04) 640-645
    CrossrefPubMedGoogle Scholar
  • 17 Epilepsy Foundation. 2021 Accessed February 21, 2023 at: https://epilepsyfoundation.org.au/
    PubMed
  • 18 Peterson CL, Coleman H, Walker C. Needs for aids and equipment for the management of epilepsy in an Australian cohort. Epilepsy Behav 2020; 108: 107062
    CrossrefPubMedGoogle Scholar
  • 19 Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B. Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia 1998; 39 (01) 81-88
    CrossrefPubMedGoogle Scholar
  • 20 Zanini DS, Peixoto EM. Social support scale (MOS-SSS): analysis of psychometric properties via item response theory. Paideia 2016; 26 (65) 359-368
    PubMedGoogle Scholar
  • 21 Walen HR, Lachman ME. Social support and strain from partner, family, and friends: Costs and benefits for men and women in adulthood. J Soc Pers Relat 2000; 17 (01) 5-30
    CrossrefPubMedGoogle Scholar
  • 22 Secor JP, Linke-McLean A, Wright RW. Whose support matters? Support of friends (but not family) may predict affect and wellbeing of adults faced with negative life events. J Relationsh Res 2017; 8 (e10): 1-10
    PubMedGoogle Scholar
  • 23 Cano-López I, Hampel KG, Garcés M, Villanueva V, González-Bono E. Quality of life in drug-resistant epilepsy: relationships with negative affectivity, memory, somatic symptoms and social support. J Psychosom Res 2018; 114: 31-37
    CrossrefPubMedGoogle Scholar