Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-24T12:53:58.622Z Has data issue: false hasContentIssue false
  • English
  • Français

A Qualitative Study Exploring Family Life in Men Following Neurosurgery for Adult Onset Epileptic Seizures

Published online by Cambridge University Press:  27 December 2018

Martin Raffaele
Martin Raffaele*
Affiliation:
Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, Room T-424, 10 Cumberland Campus, 75 East Street Lidcombe, NSW, 2141, Australia
*
Address for correspondence: Martin Raffaele, Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, Room T-424, 10 Cumberland Campus, 75 East Street Lidcombe, NSW, 2141, Australia. E-mail: [email protected]
Get access

Abstract

This study explored family relationship dynamics of men with Adult Onset Epileptic Seizures (AOES) following an elective lobectomy procedure to address their frequent seizure activity. Informants were five Australian men with history of adult-onset epilepsy for which they received neurosurgery (aged 34–59 years). Thematic analysis following semi-structured interviews yielded three themes: role marginalization, role dependency and role enmeshment. All the men reported significant role marginalization in not being consulted about everyday life activities. They also reported to experience decisional role shifting towards their spouses or partners and children post-surgery. Their family role enmeshment experiences included being perceived by spouses or partners as adult–children and by their children as a parent–child. However, some of the men were accepting of these role definitions and to add rather than take away from their health-related quality of life.

Keywords

Adult onset seizuresubjective well-being (SWB)post-neurosurgeryfamily life satisfaction
Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 24 , Issue 2 , December 2018 , pp. 55 - 66
Copyright
Copyright © The Author(s) 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Barber, B., & Buehler, C. (1996). Family cohesion and enmeshment: Different constructs, different effects. Journal of Marriage and Family, 58 (2), 443–441. doi: 10.2307/353507Google Scholar
Barney, L.J., Griffiths, K.M., Jorm, A.F., & Christensen, H. (2006). Stigma and depression and its impact on help-seeking intentions. Australian and New Zealand Journal of Psychiatry, 40 (1), 51–54. doi: 10.1080/j.1440-1614.2006.01741.xGoogle Scholar
Baxter, P., & Jack, S. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 13 (4), 544–59.Google Scholar
Bellon, M., Walker, C., Peterson, C., & Cookson, P. (2013). The “e” word: Epilepsy and perceptions of unfair treatment from the 2010 Australian epilepsy longitudinal survey. Epilepsy & Behaviour, 27 (1), 251–56.Google Scholar
Berridge, K.C., & Kringelbach, M.L. (2011). Building a neuroscience of pleasure and well-being. Psychology of Well Being, 1 (1), 1–26. doi:10.1186/2211-1522-1-3.Google Scholar
Biggerstaff, D., & Thompson, A.R. (2008). Interpretative phenomenological analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5 (3), 214–224.Google Scholar
Billson, J.M. (2005). No owner of soil: Redefining the concept of marginality. In Dennis, R. (Ed.), Marginality, power, and social structure: Issues in race, class, and gender analysis. (pp. 29–47). Boston: Elsevier.Google Scholar
Bressi, C., Cornaggia, C.M., Beghi, M., Iandoli, I.I., & Invernizzi, G. (2007). Epilepsy and family expressed emotion: Results of a prospective study. Seizure, 16 (5), 417–423. doi: 10.1016/j.seisure.2007.02.015Google Scholar
Burman, B., & Margolin, G. (1992). Analysis of the association between marital relationships and health problems: An interactional perspective. Psychological Bulletin, 112 (1), 39–63. ISSN: 0033–2909.Google Scholar
Clusmann, H., Schramm, J., Kral, T., Helmstaedter, C., Ostertun, B., Fimmers, R., Haun, D., & Elger, C.E. (2002). Prognostic factors and outcome after different types or resection for temporal lobe epilepsy. Journal of Neurosurgery. 97 (5), 1131–1141.Google Scholar
Courtenay, W.H. (2000). Constructions of masculinity and their influence on men's well-being: A theory of gender and health. Social Science & Medicine, 50 (10), 1385–1401.Google Scholar
Dickson, P., & Looper, K.J. (2012). Psychogenic non-epileptic seizures: A current overview. Epilepsia, 53 (10), 1672–1689. doi: 10.1111/j.1528-1167.2012.03606.xGoogle Scholar
Diener, E., & Ryan, K. (2009). Subjective well-being: A general overview. South African Journal of Psychology, 39 (4), 391–406.Google Scholar
Elger, G., & Elger, C.E. (2001). Presurgery psychiatric workup. In Lüders, H.O., & Comair, Y.G. (Eds.), Epilepsy surgery. 2nd ed. (pp. 469–475). Philadelphia, PA: Lippincott Williams & Wilkins.Google Scholar
Englot, D.J., Wang, D.D., Rolston, J.D., Shih, T.T., & Chang, E.F. (2012). Rates and predictors of long-term seizure freedom after frontal lobe epilepsy surgery: A systematic review and meta-analysis. Clinical article. Journal of Neurosurgy, 116, 1042–1048. doi: https://doi.org/10.3171/2012.1.JNS111620.Google Scholar
Feddersen, B., Herzer, R., Hartmann, U., Gaab, M.R., & Runge, U. (2005). On the psychopathology of unilateral temporal lobe epilepsy. Epilepsy & Behaviour, 6 (1), 43–49.Google Scholar
Fisher, R.S., van Emde Boas, W., Blume, W., Elger, C., Genton, P., Lee, P., & Engel, J. (2005). Epileptic seizures and epilepsy: Definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia, 46 (4), 470–472. doi: 10.1111/j.0013-9580.2005.66104.xGoogle Scholar
Fisher, R.S. et al. (2000). The impact of epilepsy from a patient's perspective II: Views about therapy and health care. Epilepsy Research, 41 (1), 53–61.Google Scholar
Gilbert, F. (2012). The burden of normality: From ‘chronically ill’ to ‘symptom free’. New ethical challenges for deep brain stimulation postoperative treatment. Journal of Medical Ethics, 38 (7), 408–412.Google Scholar
Green, A., Payne, S., & Barnitt, R. (2004). Illness representations among people with non-epileptic seizures attending neuropsychiatry clinic: A qualitative study based on the self-regulation model. Seizure, 13 (5), 331–339.Google Scholar
Henderson, S., & Segal, E. H. (2013) Visualizing qualitative data in evaluation research. In Azzam, T., & Evergeen, S. (Eds.), Data visualization, part 1. New directions for evaluation, 139, 53– 71.Google Scholar
Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2018). Psychosocial adjustment to multiple sclerosis: Exploration of identity redefinition. Disability and Rehabilitation, 31 (8), 599–606. doi: 10.1080/09638280802243286Google Scholar
Jacoby, A., Ring, A., Whitehead, M., Marson, A., & Baker, G. A. (2014). Exploring loss and replacement of loss for understanding the impact of epilepsy onset: A qualitative investigation. Epilepsy & Behavior, 33, 59–68. doi: 10.1016/j.yebeh.2014.02.015Google Scholar
Johnson, E.K., Jones, J.E., Seidenberg, M., & Hermann, B.P. (2004). The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia, 45 (5), 544–550.Google Scholar
Jonzon, A., & Goodwin, D. (2012). Daughters of mothers with multiple sclerosis: Their experiences with play. Adapted Physical Activity Quarterly, 29 (3), 205–223.Google Scholar
Kellet, D., Mpofu, E., & Madden, R. (2013). Reflective action assessment with a prospective clinical problem solving tool in the context of rehabilitation medicine: An illustrative case study. Disability and Rehabilitation, 35 (13), 1048–1054. https://doi.org/10.3109/09638288.2012.720348Google Scholar
Keyes, C.L.M., Fredrickson, B.A., & Park, N. (2012). Positive psychology and the quality of life. In Land, K.C., Michalos, A.C., & Sirgy, M.J. (Eds.), Handbook of social indicators and quality of life research (pp. 99–112). The Netherlands: Springer.Google Scholar
Kivisto, K.L., Welsh, D.P., Darling, N., & Culpepper, C.L. (2015). Family enmeshment, adolescent emotional dysregulation, and the moderating roles of gender. Journal of Family Psychology, 29 (4), 604–613.Google Scholar
Kung, W. (2016). Culture- and Immigration-related stress faced by Chinese American families with a patient having schizophrenia. Journal of Marital Family Therapy, 42 (3), 409–422.Google Scholar
Madden, R. et al. (2015). In search of an integrative measure of functioning. International Journal of Environmental Research and Public Health, 12 (6), 5815–5832. doi: 10.3390/ijerph120605815.Google Scholar
Mahrer-Imhof, R., Jaggi, S., Bonomo, A., Hediger, H., Eggenschwiler, P., Kramer, G., & Oberholzer, E. (2013). Quality of life in adult patients with epilepsy and their family members. Seizure, 22 (2), 128–135.Google Scholar
Marujo, H.À., & Neto, L.M. (2016). Quality of life studies and positive psychology. In Bruni, L., & Porta, P. (Eds.), Handbook of research methods and applications in happiness and quality of life, Chapter 13 (pp. 279–306). Edward Elgar Publishing.Google Scholar
Maschio, M. (2012). Brain tumor-related epilepsy. Current Neuropharmacology, 10 (2), 124–133.Google Scholar
McAdams, C. et al., (2016). The viability of structural family therapy in the twenty-first century: An analysis of key indicators. Contemporary Family Therapy, 38 (3), 255–261.Google Scholar
McPherson, C.J., Wilson, K.G., Chyurlia, L., & Leclerc, C. (2010). The balance of give and take in caregiver–partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke. Rehabilitation Psychology, 55 (2), 194–203.Google Scholar
Mikati, M.A., Comair, Y.G., Ismail, R., Faour, R., & Rahi, A.C. (2004). Effects of epilepsy surgery on quality of life: A controlled study in a Middle Eastern population. Epilepsy & Behavior, 5 (1), 72–80.Google Scholar
Padrone, F. (1994). Psychotherapeutic issues with family members of persons with physical disabilities. The American Journal of Psychotherapy, 48 (2), 195–207.Google Scholar
Rugg-Gunn, F.J., & Sander, J.W. (2012). Management of chronic epilepsy. BMJ, 345, 41–45.Google Scholar
Scambler, G. (1989). Epilepsy: the experience of illness series. London: Routledge.Google Scholar
Schembri Lia, E., & Abela, A. (2016). Not broken but strengthened: Stories of resilience by persons with acquired physical disability and their families. Australian and New Zealand Journal of Family Therapy, 37 (3), 400–417.Google Scholar
Seidler, Z.E., Dawes, A.J., Rice, S.M., Oliffe, J.L., & Dhillon, H.M. (2016). The role of masculinity in men's help-seeking for depression: A systematic review. Clinical Psychology Review, 49, 106–118. doi: 10.1080/j.cpr.2016.09.002Google Scholar
Shorvon, S.D. (2004). The treatment of epilepsy. In Shorvon, S.D., Perucca, E., Fish, D., & Dodson, E. (Eds.), 2nd Edition. Malden, MA: Blackwell. ISBN 0-632-06046-8Google Scholar
Spencer, S.S., Berg, A.T., Vickrey, B.G., Sperling, M.R., Bazil, C.W., Haut, S., . . . Devinsky, O. (2007). Health-related quality of life over time since respective epilepsy surgery. Annals of Neurology, 62 (4), 327–334. https://doi.ord/10.1002/ana.21131.Google Scholar
Thorbecke, R. (2001). Post-surgery rehabilitation. In Lüders, H.O., & Comair, Y.G. (Eds.), Epilepsy surgery. 2nd ed. (pp. 891–900). Philadelphia, PA: Lippincott Williams & Wilkins.Google Scholar
Voltzenlogel, V. et al. (2016). Giving meaning to illness: An investigation of self-defining memories in patients with relapsing-remitting multiple sclerosis patients. Consciousness and Cognition, 45, 200–209. https://doi.org/10.1016/j.concog.2016.09.010Google Scholar
Wallace, A.F.C. (1972). Paradigmatic processes in culture change. American Anthropologist, 74 (3), 467–78. https://doi.org/10.1525/aa.1972.74.3.02a00160Google Scholar
Warner, D., & Adams, S. (2015). Physical disability and increased loneliness among married older adults: The role of changing social relations. Society and Mental Health, 6 (2), 106–128. doi: 10.1177/2156869315616257.Google Scholar
Wiebe, S., Blume, W.T., Girvin, J.P., & Eliasziw, M. (2001). Effectiveness and efficiency of surgery for temporal lobe epilepsy study group. A randomized, controlled trial of surgery for temporal-lobe epilepsy. New England Journal of Medicine, 345, 311–318.Google Scholar
Wilson, S.J., Bladin, P.F., & Saling, M.M. (2001). The “burden of normality”: Concepts of adjustment after surgery for seizures. Journal of Neurology, Neurosurgery & Psychiatry, 70 (5), 649–656. http://dx.doi.org/10.1136/jnnp.70.5.649Google Scholar
World Health Organization. (2006). Neurological disorders: Public health challenges (pp. 204–07). Switzerland: World Health Organization. ISBN: 978 92 4 156336 9Google Scholar
Yin, R.K. (2009). Case study research: Design and methods. 4th ed. 2009. (vol. 5). Thousand Oaks, CA: Sage.Google Scholar