Exploration of Neuroscience

From: A longitudinal study over 9 years of the role of social support for people with epilepsy

Table 1. Waves 2, 4, and 5 socio-demographics

Demographic	Wave 2 (2010)	Wave 4 (2016/7)	Wave5 (2019/20)
Age [Mean Median (SD) Range]	46.39 [51.0 (15.56) 20–75]
n	51
Gender
Female	26 (51.0%)
Male	25 (49.0%)
Highest level of education
Year 12 or lower	27 (52.9%)	21 (41.2%)	21 (41.2%)
TAFE/Trade	6 (11.8%)	11 (21.5%)	8 (15.6%)
Tertiary	17 (33.3%)	18 (35.3%)	20 (39.2%)
Missing	1 (2.0%)	1 (2.0%)	2 (4.0%)
Employment
Paid employment	27 (52.9%)	21 (41.2%)	21 (41.2%)
Full-time employed	16 (59.3%)	11 (52.4%)	12 (57.2%)
Part-time employed	6 (22.2%)	5 (23.8%)	5 (23.8%)
Casually employed	5 (18.5%)	5 (23.8%)	4 (19.0%)
Others
^aRetired	10 (19.6%)	11 (21.6%)	9 (17.6%)
Unable to work due to epilepsy	7 (13.7%)	6 (11.8%)	6 (11.8%)
Not working due to a disability	4 (7.8%)	5 (9.8%)	5 (9.8%)
Seeking paid employment	0	0	2 (3.9%)
Homemaker	3 (5.9%)	3 (5.9%)	6 (11.8%)
Missing	0	5 (9.8%)	2 (4.0%)

Return to article view

^a Outside of work columns (e.g., retired, unable to work due to epilepsy, etc.) percentages do not add up to 100% but individually they are portions of the total sample; SD: standard deviation

Declarations

Author contributions

CW and CLP: Conceptualization, Investigation, Writing—original draft, Writing—review & editing. Both authors read and approved the submitted version.

Conflicts of interest

The authors declare they have no conflicts of interest.

Ethical approval

The ethics clearance was gained by Deakin University Australia (HREC 2013-011).

Consent to participate

This is a panel study consisting of the same people from Waves 2 (2010), 4 (2016/7) and 5 (2019/20). Participants are recruited from the Australian Epilepsy Research Register (AERR) which commenced in 2006. Informed consent was gained from participants.

Consent to publication

All participants gave their permission for their data to be published.

Availability of data and materials

Data is protected by ethics requirements and is not available, but the authors are willing to answer readers’ reasonable questions.

Funding

UCB Pharma provided some of the funding for this project. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright

References

Surguchov A, Surgucheva I, Sharma M, Sharma R, Singh V. Pore-Forming Proteins as Mediators of Novel Epigenetic Mechanism of Epilepsy. Front Neurol. 2017;8:3. [DOI] [PubMed] [PMC]

Upton D. Social support and emotional adjustment in people with chronic epilepsy. J Epilepsy. 1993;6;105–11. [DOI]

Walker ER, Barmon C, McGee RE, Engelhard G, Sterk CE, DiIorio C, et al. Perspectives of adults with epilepsy and their support persons on self-management support. Qual Health Res. 2014;24:1553–66. [DOI] [PubMed] [PMC]

Lu B, Elliott JO. Beyond seizures and medications: normal activity limitations, social support, and mental health in epilepsy. Epilepsia. 2012;53:e25–8. [DOI] [PubMed]

Lee H, Oh J, Kawachi I, Heo J, Kim S, Lee J, 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:e023036. [DOI] [PubMed] [PMC]

Saeri AK, Cruwys T, Barlow FK, Stronge S, Sibley CG. Social connectedness improves public mental health: Investigating bidirectional relationships in the New Zealand attitudes and values survey. Aust N Z J Psychiatry. 2018;52:365–74. [DOI] [PubMed]

Gesselman AN, Wion RK, Garcia JR, Miller WR. Relationship and sexual satisfaction are associated with better disease self-management in persons with epilepsy. Epilepsy Behav. 2021;119:107937. [DOI] [PubMed] [PMC]

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;114:31–7. [DOI] [PubMed]

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;16:640–5. [DOI] [PubMed]

10.

Szemere E, Jokeit H. Quality of life is social--towards an improvement of social abilities in patients with epilepsy. Seizure. 2015;26:12–21. [DOI] [PubMed]

11.

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;25:575–84. [DOI] [PubMed] [PMC]

12.

Zhong R, Zhang H, Han Y, Guo X, Lin W. Social support for and features of Chinese adults with epilepsy. Acta Epileptologica. 2022;4:1–6. [DOI]

13.

Berkman LF, Glass T, Brissette I, Seeman TE. From social integration to health: Durkheim in the new millennium. Soc Sci Med. 2000;51:843–57. [DOI] [PubMed]

14.

Palant A, Himmel W. Are there also negative effects of social support? A qualitative study of patients with inflammatory bowel disease. BMJ Open. 2019;9:e022642. [DOI] [PubMed] [PMC]

15.

Amati V, Meggiolaro S, Rivellini G, Zaccarin S. Social relations and life satisfaction: the role of friends. Genus. 2018;74:7. [DOI] [PubMed] [PMC]

16.

Social Support [Internet]. National Cancer Institute; [cited 2024 May 25]. Available from: https://cancercontrol.cancer.gov/brp/research/constructs/social-support

17.

Jacobson D. The cultural context of social support and support networks. Med Anthropol Q. 1987;1:42–67. [DOI]

18.

Manacheril R, Faheem U, Labiner D, Drake K, Chong J. Psychosocial Impact of Epilepsy in Older Adults. Healthcare (Basel). 2015;3:1271–83. [DOI] [PubMed] [PMC]

19.

Sherbourne CD, Stewart AL. The MOS social support survey. Soc Sci Med. 1991;32:705–14. [DOI] [PubMed]

20.

Charmaz K. Constructing grounded theory. London: SAGE Publications Ltd; 2014.

21.

Glaser BG, Strauss AL. The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company; 1967.

22.

Schneidre JW. Disability as moral experience: Epilepsy and self in routine relationships. J Soc Issues. 1988;44:63–78. [DOI]

23.

Mehta R, Mittal A, Singh DC, Patel C. Impact of income on perceived stress, coping, and family functioning in Indian females with pseudoseizures. Int J Epilepsy. 2020;6:43–9. [DOI]

24.

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;20:17–26. [PubMed] [PMC]