Abstract
| Language | English |
|---|---|
| Pages | 36-43 |
| Number of pages | 8 |
| Journal | Epilepsy and Behavior |
| Volume | 83 |
| Early online date | Jun 2018 |
| DOIs | |
| Publication status | Published - Jun 2018 |
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Bibliographical note
Copyright the Author(s) 2018. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.Keywords
- refractory epilepsy
- resective surgery
- patient experiences
- healthcare engagement
- referral processes
- qualitative research
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Leading up to saying "yes" : a qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery. / Shih, Patti; Nikpour, Armin; Bleasel, Andrew; Herkes, Geoffrey K.; Mitchell, Rebecca; Seah, Rebecca; Mumford, Virginia; Braithwaite, Jeffrey; Vagholkar, Sanjyot; Rapport, Frances.
In: Epilepsy and Behavior, Vol. 83, 06.2018, p. 36-43.Research output: Contribution to journal › Article › Research › peer-review
TY - JOUR
T1 - Leading up to saying "yes"
T2 - Epilepsy and Behavior
AU - Shih, Patti
AU - Nikpour, Armin
AU - Bleasel, Andrew
AU - Herkes, Geoffrey K.
AU - Mitchell, Rebecca
AU - Seah, Rebecca
AU - Mumford, Virginia
AU - Braithwaite, Jeffrey
AU - Vagholkar, Sanjyot
AU - Rapport, Frances
N1 - Copyright the Author(s) 2018. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.
PY - 2018/6
Y1 - 2018/6
N2 - Objectives: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. Methods: In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient–clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. Results: Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. Conclusion: Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.
AB - Objectives: Adult patients with refractory epilepsy who are potential candidates for resective surgery undergo a period of presurgical investigation in tertiary epilepsy centers (TECs), where they engage extensively with healthcare professionals and receive a range of treatment-related information. This qualitative study aimed to examine the experiences of adult patients with refractory epilepsy leading up to and during presurgical investigation and how their perceptions of resective surgery are shaped. Methods: In-depth interviews with 12 patients and six epilepsy specialist clinicians and 12 observations of routine patient–clinician consultations took place at two TECs in Sydney, Australia. Data were thematically analyzed via group work. Results: Patients reflected on prior experiences of poor seizure control and inadequate antiepileptic drug management and a lack of clarity about their condition before referral to tertiary care. Poor continuity of care and disrupted care transitions affected patients from regional locations. Tertiary referral increased engagement with personalized information about refractory epilepsy, which intensified during presurgical assessments with additional hospital visits and consultations. Experiential information, such as testimonials of other patients, influenced perceptions of surgery and fostered more trust and confidence towards healthcare professionals. Conclusion: Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.
KW - refractory epilepsy
KW - resective surgery
KW - patient experiences
KW - healthcare engagement
KW - referral processes
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85045050173&partnerID=8YFLogxK
U2 - 10.1016/j.yebeh.2018.03.028
DO - 10.1016/j.yebeh.2018.03.028
M3 - Article
VL - 83
SP - 36
EP - 43
JO - Epilepsy and Behavior
JF - Epilepsy and Behavior
SN - 1525-5050
ER -