Hostname: page-component-848d4c4894-75dct Total loading time: 0 Render date: 2024-06-07T21:42:06.295Z Has data issue: false hasContentIssue false
  • English
  • Français

Men with adult-onset epilepsy: Their experiences of health care provider relationship qualities following neurosurgery

Published online by Cambridge University Press:  22 December 2020

Martin Raffaele Open the ORCID record for Martin Raffaele [Opens in a new window]  and
Charity Tinofirei
Martin Raffaele*
Affiliation:
Centre for Disability Research and Policy, Discipline of Rehabilitation Counselling, School of Health Sciences, Faculty of Medicine and Health, University of Sydney, Lidcombe, NSW, 2141, Australia
Charity Tinofirei
Affiliation:
Rehabilitation and Health Services Department (Health Services Research), College of Health and Public Service, University of North Texas, Denton, TX76201, USA
*
*Corresponding author. Email: martin.raffaele@gmail.com
Get access

Abstract

The success of a lobectomy procedure for adult-onset epileptic seizure (AOES) would depend on the quality of the patient’s relationship with the health care provider. This ethnographic multiple case study explored patient and health professional relationship contexts following surgery for seizure activity reduction treatment. We interviewed five Australian men (aged 34–59) with a history of AOES and neurosurgery regarding the quality of their relationship with health care providers. Interpretive phenomenological analysis (IPA) of the data yielded three interrelated relationship themes of Timeliness (promptness of necessary care), Support (availability, understanding, and empathy), and Responsibility (adaptive communication, self-care, and decision-making ownership). Self-directed relationship resourcing enhanced subjective well-being in the patients.

Keywords

Epilepsyseizuressubjective wellbeing (SWB)
Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 26 , Issue 2 , December 2020 , pp. 105 - 119
Check for updates
Copyright
© The Author(s) 2020. Published by Cambridge University Press and The Australian Journal of Rehabilitation Counselling

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

Abramson, C. M., & Dohan, D. (2015). Beyond text: Using arrays to represent and analyse ethnographic data. Sociological Methodology, 1–48. https://doi.org/10.1177/0081175015578740 Google Scholar
Baider, L., & Bengel, J. (2001). Cancer and the spouse: Gender-related differences in dealing with health care and illness. Critical Reviews in Oncology/Hematology, 40 (2), 115–123. https://doi.org/10.1016/S1040–8428(01)00137–8 CrossRefGoogle ScholarPubMed
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 & Behavior, 27 (1), 251–256. https://doi.org/10.1016/j.yebeh.2013.01.016 CrossRefGoogle ScholarPubMed
Bending, Z. J. (2015). Reconceptualising the doctor–patient relationship: Recognising the role of trust in contemporary health care. Bioethical Inquiry 12, 189–202. https://doi.org/10.1007/s11673–014–9570-z CrossRefGoogle ScholarPubMed
Bielen, I., Friedrich, L., Sruk, A., Prvan, M. P., Hajnšek, S., Petelin, Z., … Jacoby, A. (2014). Factors associated with perceived stigma of epilepsy in Croatia: A study using the revised Epilepsy Stigma Scale. Seizure, 23 (2), 117–121. https://doi.org/10.1016/j.seizure.2013.10.008 CrossRefGoogle ScholarPubMed
Bishop, M., & Allen, C. A. (2003). The impact of epilepsy on quality of life: A qualitative analysis. Epilepsy and Behavior, 4 (3), 226–233. https://doi.org/10.1016/S1525–5050(03)00111–2 CrossRefGoogle ScholarPubMed
Bodenheimer, T., Lorig, H., Holman, H., & Grumbach, K. (2002). Patient self-management of chronic disease in primary care. The Journal of American Medical Association, 288 (19), 2469–2475. https://doi.org/10.1001/jama.288.19.2469 CrossRefGoogle ScholarPubMed
Bond, K. S., Mpofu, E., & Millington, M. (2015). Treating women with genito-pelvic pain/penetration disorder: Influences of patient agendas on help-seeking. Journal of Family Medicine, 2 (4), 1033–1041. https://www.researchgate.net/publication/282854857 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: European Journal of Epilepsy, 16 (5), 417–423. https://doi.org/10.1016/j.seizure.2007.02.015 CrossRefGoogle ScholarPubMed
Bromfield, E. B., Cavazos, J. E., & Sirven, J. I. (Eds). (2006). An introduction to epilepsy. American Epilepsy Society, Chapter 4, Epilepsy Surgery. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK2514/ Google Scholar
Buckner, R. L., Andrews-Hanna, J. R., & Schacter, D. L. (2008). The brain’s default network: Anatomy, function and relevance to disease. Annals of the New York Academy of Sciences, 1124 (1), 1–38. https://doi.org/10.1196/annals.1440.011 CrossRefGoogle ScholarPubMed
Burke-Doe, A., & Smith, T. J. (2013). Impact of drug therapy on patients receiving neurological rehabilitation. In Umphred, D. A., Lazaro, R. T., Roller, M., & Burton, G. (Eds.). Umphred’s neurological rehabilitation, (6th ed., vol. 36, pp. 1085–1102). Elsevier Mosby.CrossRefGoogle Scholar
Burkert, S., Kendel, F., Kiep, H., Holtkamp, M., & Gaus, V. (2015). Gender differences in social support in persons with epilepsy. Epilepsy & Behavior, 46, 205–208. https://doi.org/10.1016/j.yebeh.2015.02.041 CrossRefGoogle ScholarPubMed
Caligtan, C. A., Carroll, D. L., Hurley, A. C., Gersh-Zaremski, R., & Dykes, P. C. (2012). Bedside information technology to support patient-centered care. International Journal of Medical Informatics, 81 (7), 442–51. https://doi.org/10.1016/j.ijmedinf.2011.12.005 CrossRefGoogle ScholarPubMed
Cassin, S. E., Sockalingam, S., Wnuk, S., Strimas, R., Royal, S., Hawa, R., & Parikh, S. V. (2013). Cognitive behavioral therapy for bariatric surgery patients: Preliminary evidence for feasibility, acceptability, and effectiveness. Cognitive and Behavioral Practice, 20 (4), 529 – 543. https://doi.org//10.1016/j.cbpra.2012.10.002 CrossRefGoogle Scholar
Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. In Valle, R. S. & King, M. (Eds.), Existential-phenomenological alternatives for psychology (pp. 48–71). Oxford University Press.Google Scholar
Coleman, H., McIntosh, A., & Wilson, S. J. (2019). Identifying the trajectory of social milestones 15-20 years after epilepsy surgery: Realistic timelines for postsurgical expectations. Epilepsia Open, 4 (3), 369–381. https://doi.org/10.1002/epi4.12341 CrossRefGoogle ScholarPubMed
Crepeau, A. Z., & Sirven, J. I. (2017). Management of adult onset seizures. Mayo Clinic Proceedings, 92 (2), 306–318. https://doi.org/10.1016/j.mayocp.2016.11.013.CrossRefGoogle ScholarPubMed
Cummings, R. A. (2013). The relationship between subjective wellbeing and health. InCaltabiano, M. L., & Ricciardelli, L. (Eds.), Applied topics in health psychology (pp. 101–111). Wiley-Blackwell.Google Scholar
de Barros, A. C. S., Furlan, A. E. R., Marques, L. H. N., & de Araújo Filho, G. M. (2018). Gender differences in prevalence of psychiatric disorders, levels of alexithymia, and coping strategies in patients with refractory mesial temporal epilepsy and comorbid psychogenic nonepileptic seizures. Epilepsy & Behavior, 82, 1–5. https://doi.org/10.1016/j.yebeh.2018.02.026 CrossRefGoogle ScholarPubMed
Delev, D., Hakvoort, K., Grote, A., Neuloh, G., Clusmann, H., & von Lehe, M. (2020). Quality of life in elderly patients after surgery for drug-resistant epilepsy – The impact of seizure outcome, neurological deficits and anxiety. Epilepsy & Behavior, 112, 107410. https://doi.org/10.1016/j.yebeh.2020.107410 CrossRefGoogle ScholarPubMed
Diener, E. (2013). The remarkable changes in the science of subjective well-being. Perspectives on Psychological Science, 8 (6), 663–666. https://doi.org/10.1177/1745691613507583 CrossRefGoogle ScholarPubMed
Diener, E., & Ryan, K. (2009). Subjective well-being: A general overview. South African Journal of Psychology, 39 (4), 391–406. https://doi.org/10.1177/008124630903900402 CrossRefGoogle Scholar
Elliott, J. O., & Richardson, V. E. (2014). The biopsychosocial model and quality of life in persons with active epilepsy. Epilepsy and Behavior, 41, 55–65. https://doi.org/10.1016/j.yebeh.2014.09.125 CrossRefGoogle ScholarPubMed
Englot, D. J., Wang, D. D., Rolston, J. D., Shih, T. T., & Chang, E. F. (2012). Rates and predictors of long-term seizure freedom and frontal lobe epilepsy surgery: A systematic review and meta-analysis. Journal of Neurosurgery, 116 (5), 1114–1120. https://doi.org/10.3171/2012.1.JNS111620 CrossRefGoogle ScholarPubMed
Epilepsy Action Australia. (2020). Facts and statistics. Retrieved from https://www.epilepsy.org.au/about-epilepsy/facts-and-statistics/ Google Scholar
Fiest, K. M., Birbeck, G. L., Jacoby, A., & Jette, N. (2014). Stigma in epilepsy. Current Neurology and Neuroscience Reports, 14 (5), 444. https://doi.org/10.1007/s11910–014–0444-x CrossRefGoogle ScholarPubMed
Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., … Wiebe, S. (2014). ILAE official report: A practical clinical definition of epilepsy. Epilepsia, 55 (4), 475–482. https://doi.org/10.1111/epi.12550 CrossRefGoogle ScholarPubMed
Grewe, P., Schulz, R., Woermann, F. G., Brandt, C., Doll, A., Hoppe, M., … Bien, C. G. (2019). Very long-term outcome in resected and non-resected patients with temporal lobe epilepsy with medial temporal lobe sclerosis: A multiple case-study. Seizure, 67, 30–37. https://doi.org/10.1016/j.seizure.2019.02.015 CrossRefGoogle ScholarPubMed
Gaus, V., Kiep, H., Holtkamp, M., Burkert, S., & Kendel, F. (2015). Gender differences in depression, but not in anxiety in people with epilepsy. Seizure, 32, 37–42. https://doi.org/10.1016/j.seizure.2015.07.012 CrossRefGoogle 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 and Behavior, 33, 59–68. https://doi.org/10.1111/j.1528.1992.tb01769.x CrossRefGoogle ScholarPubMed
Jobst, B. C. (2015). Beyond pills, machines and surgery: Rehabilitation after epilepsy surgery. Epilepsy Currents, 15 (1), 28–29. https://doi.org/10.5698/1535–7597–15.1.28 CrossRefGoogle ScholarPubMed
Kaklauskas, A. (2015). Biometric and intelligent decision making support. Springer International Publishing.CrossRefGoogle Scholar
Kemp, S., Garlovsky, J., Reynders, H., Caswell, H., Baker, G., & Shah, E. (2016). Predicting the psychosocial outcome of epilepsy surgery: A longitudinal perspective on the ‘burden of normality’. Epilepsy & Behavior, 60, 149–152. https://doi.org/10.1016/j.yebeh.2016.04.029 CrossRefGoogle ScholarPubMed
Keyes, C. L. M., Fredrickson, B. A., & Park, N., (2012). Positive psychology and the quality of life. In Keyes, C., Fredrickson, B., & Park, N. (Eds.), Handbook of social indicators and quality of life research (pp. 99–112). Springer.CrossRefGoogle Scholar
Kilinç, S., van Wersch, A., Campbell, C., & Guy, A. (2017). The experience of living with adult-onset epilepsy. Epilepsy & Behavior, 73, 189–196. https://doi.org/10.1016/j.yebeh.2017.05.038 CrossRefGoogle ScholarPubMed
Lee, E. O., & Emanuel, E. J. (2013). Shared decision making to improve care and reduce costs. The New England Journal of Medicine, 368 (1), 6–8. https://doi.org/10.1056/NEJMp1209500 Google Scholar
Leeman-Markowski, B. A., & Schachter, S. C. (2017). Cognitive and behavioral interventions in epilepsy. Current Neurology and Neuroscience Reports, 17 (5), 42. https://doi.org/10.1007/s11910–017–0752-z CrossRefGoogle ScholarPubMed
Lelorain, S., Brédart, A., Dolbeault, S., & Sultan, S. (2012). A systematic review of the associations between empathy measures and patient outcomes in cancer care. Psycho-Oncology, 21 (12), 1255–1264. https://doi.org/10.1002/pon.2115 CrossRefGoogle ScholarPubMed
Leung, A. K., Hon, K. L., & Leung, T. N. (2018). Febrile seizures: An overview. Drugs in Context, 7. https://doi.org/ 10.7573/dic.212536 CrossRefGoogle Scholar
Lin, P. T., Yu, H. Y., Lu, Y. J., Wang, W. H., Chou, C. C., Hsu, S. P., … Lee, C. C. (2020). Social functioning and health-related quality of life trajectories in people with epilepsy after epilepsy surgery. Epilepsy & Behavior, 103, 106849. https://doi.org/10.1016/j.yebeh.2019.106849 CrossRefGoogle ScholarPubMed
Liu, Z., Yin, R., Fan, Z., Fan, H., Wu, H., Shen, B., … Kuang, F. (2020). Gender differences in associated and predictive factors of anxiety and depression in people with epilepsy. Frontiers in Psychiatry, 11. https://doi.org/10.3389/fpsyt.2020.00670 Google ScholarPubMed
Martin, R. (2016). The burden of normality in the epilepsy postsurgery setting: Out with the old and in with the new (…Roles). Epilepsy Currents, 16 (6), 375–377. https://doi.org/10.5698/1535–7511–16.6.375 CrossRefGoogle Scholar
Matud, M. P. (2004). Gender differences in stress and coping styles. Personality and Individual Differences, 37 (7), 1401–1415. https://doi.org/10.1016/j.paid.2004.01.010 CrossRefGoogle Scholar
Michaelis, R., Niedermann, C., Reuber, M., Kuthe, M., & Berger, B. (2018). “Seizures have become a means of somehow learning things about myself” – A qualitative study of the development of self-efficacy and mastery during a psychotherapeutic intervention for people with epilepsy. Epilepsy & Behavior, 84, 152–161. https://doi.org/10.1016/j.yebeh.2018.04.019.CrossRefGoogle ScholarPubMed
Miles, M. B., Huberman, A. M., & Saldaña, J. (2014). Qualitative data analysis, a methods sourcebook, (3rd ed.). Sage Publications.Google Scholar
Myers, L., Trobliger, R., Bortnik, K., & Lancman, M. (2018). Are there gender differences in those diagnosed with psychogenic nonepileptic seizures? Epilepsy & Behavior, 78, 161–165. https://doi.org/10.1016/j.yebeh.2017.10.019 CrossRefGoogle ScholarPubMed
National Institute of Neurological Disorders and Stroke. (2020). What are febrile seizures? National Institutes of Health. Retrieved fromhttps://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Febrile-Seizures-Fact-Sheet Google Scholar
Nimmon, L., & Stenfors-Hayes, T. (2016). The “handling” of power in the physician-patient encounter: Perceptions from experienced physicians. BMC Medical Education, 16 (114). https://doi.org/10.1186/s12909–016–0634–0 CrossRefGoogle ScholarPubMed
Neale, J. (2016). Iterative categorization (IC): A systematic technique for analysing qualitative data. Addiction, 111 (6), 1096–1106. https://doi.org/10.1111/add.13314 CrossRefGoogle ScholarPubMed
Nystrup, J., Larsen, J., & Risør, O. (2010). Developing communication skills for the general practice consultation process. Sultan Qaboos University Medical Journal, 10 (3), 318–325. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074725/ Google ScholarPubMed
Ozanne, A., Graneheim, U. H., Ekstedt, G., & Malmgren, K. (2016). Patients’ expectations and experiences of epilepsy surgery – A population-based long-term qualitative study. Epilepsia, 57, 605–611. https://doi.org/doi:10.1111/epi.13333 CrossRefGoogle ScholarPubMed
Pennbrant, S. (2013). A trustful relationship – The importance for relatives to actively participate in the meeting with the physician. International Journal of Qualitative Studies on Health Well-being, 20 (8). https://doi.org//10.3402/qhw.v8i0.20608 Google Scholar
Pickrell, W. O., Elwyn, G., & Smith, P. E. (2015). Shared decision-making in epilepsy management. Epilepsy & Behavior, 47, 78–82. https://doi.org/10.1016/j.yebeh.2015.01.033 CrossRefGoogle ScholarPubMed
Privetera, G. J., & Ahlgrim-Delzell, L. (2019). Research methods for education. Sage Publications.Google Scholar
Raffaele, M. P. (2009). An exploration of the psychosocial effects that school-age children with child absence epilepsy (CAE) experience when their condition is misdiagnosed as attention-deficit/hyperactivity disorder (ADHD). Unpublished MPhil (Psychology) dissertation. The Faculty Education and Social Work, The University of Sydney, Australia.Google Scholar
Raffaele, M., Mpofu, E., Smith-Merry, J., & Mackey, M. (2017). Men with adult onset seizures: Their coping strategies and sense of subjective wellbeing following elective neurosurgery. The Australian Journal of Rehabilitation Therapy, 23 (1), 19–36. https://doi.org/10.1017/jrc.2017.1 Google Scholar
Ramanathan, S., Bleasel, A., Parratt, J., Orr, C., Dale, R. C., Vincent, A., & Fung, V. (2014). Characterisation of a syndrome of autoimmune adult onset focal epilepsy and encephalitis. Journal of Clinical Neuroscience, 21 (7), 1169–1175. https://doi.org/10.1016/j.jocn.2013.09.024 CrossRefGoogle ScholarPubMed
Richardson, J., Letts, L., Chan, D., Officer, A., Wojkowski, S., Oliver, D., … Kinzie, S. (2012). Monitoring physical functioning as the sixth vital sign: Evaluating patient and practice engagement in chronic illness care in a primary care setting—A quasi-experimental design. BMC Family Practice, 13 (29). https://doi.org/10.1186/1471–2296–13–29 CrossRefGoogle Scholar
Ridge, D., Emslie, C., & White, A. (2011). Understanding how men experience, express and cope with mental distress: Where next? Sociology of Health & Illness, 33, 145–159. https://doi.org/10.1111/j.1467–9566.2010.01266.x CrossRefGoogle ScholarPubMed
Ryvlin, P., & Rheims, S. (2008). Epilepsy surgery: Eligibility criteria and presurgical evaluation. Dialogues in Clinical Neuroscience, 10 (1), 91. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181859/ Google ScholarPubMed
Sirven, J. I. (2015). Epilepsy: A spectrum disorder. Cold Spring Harbor Perspectives in Medicine, 5 (9), a022848. https://doi.org/10.1101/cshperspect.a022848 CrossRefGoogle ScholarPubMed
Smith, J. A., & Osborn, M. (2015). Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain. British Journal of Pain, 9 (1), 41–42. https://doi.org/10.1177/2049463714541642 CrossRefGoogle ScholarPubMed
Stafstrom, C. E., & Carmant, L. (2015). Seizures and epilepsy: An overview for neuroscientists. Cold Spring Harbor Perspectives in Medicine, 5 (6), a022426. https://doi.org/10.1101/cshperspect.a022426 CrossRefGoogle ScholarPubMed
Stake, R. E. (2006). Multiple case study analysis. The Guilford Press.Google Scholar
Tanriverdi, T., Poulin, N., & Olivier, A. (2008). Life 12 years after temporal lobe epilepsy surgery: A long-term, prospective clinical study. Seizure, 17 (4), 339–349. https://doi.org/10.1016/j.seizure.2007.11.003 CrossRefGoogle ScholarPubMed
Taylor, P. N., Sinha, N., Wang, Y., Vos, S. B., de Tisi, J., Miserocchi, A., … Duncan, J. S. (2018). The impact of epilepsy surgery on the structural connectome and its relation to outcome. NeuroImage: Clinical, 18, 202–214. https://doi.org/10.1016/j.nicl.2018.01.028 CrossRefGoogle Scholar
VandenBos, G. R. (2015). The APA dictionary of psychology. Vol. 2. American Psychology Association.CrossRefGoogle Scholar
Veretennikoff, K., Walker, D., Biggs, V., & Robinson, G. (2017). Changes in cognitive and decision making capacity following brain tumour resection: Illustrated with two cases. Brain Sciences, 7 (10), 122. https://doi.org/10.3390/brainsci7100122 CrossRefGoogle ScholarPubMed
Wedlund, E. W., Nilsson, L., Tomson, T., & Erdner, A. (2013). What is important in rehabilitation for persons with epilepsy? Experiences from focus group interviews with patients and staff. Epilepsy & Behavior, 28 (3), 347–353. https://doi.org/10.1016/j.yebeh.2013.05.022 CrossRefGoogle Scholar
Wheless, J. W. (2006). Intractable epilepsy: A survey of patients and caregivers. Epilepsy & Behavior, 8 (4), 756–764. https://doi.org/10.1016/j.yebeh.2006.03.010 CrossRefGoogle ScholarPubMed
Wilson, S. J., Rayner, G., & Pieters, J. (2020). Positive illusions determine quality of life in drug-resistant epilepsy. Epilepsia, 61 (3), 539–548. https://doi.org/10.1111/epi.16455 CrossRefGoogle ScholarPubMed
Wimberly, S. R., Carver, C. S., & Antoni, M. H. (2008). Effects of optimism, interpersonal relationships, and distress on psychosexual well-being among women with early stage breast cancer. Psychology & Health, 23 (1), 57–72. https://doi.org/10.1080/14768320701204211 CrossRefGoogle ScholarPubMed
Yue, L., Yu, P., Zhao, D., Wu, D., Zhu, G., Wu, X., & Hong, Z. (2011). Determinants of quality of life in people with epilepsy and their gender differences. Epilepsy & Behavior, 22 (4), 692–696. https://doi.org/10.1016/j.yebeh.2011.08.022 CrossRefGoogle ScholarPubMed
Zach, L. (2006). Using a multiple-case studies design to investigate the information-seeking behavior of arts administrators. Library Trends, 55 (1), 4–21. https://doi.org/10.1353/lib.2006.0055 CrossRefGoogle Scholar