Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina
Caregivers are important stakeholders in epilepsy management, and effective communication between healthcare providers (HCPs) and caregivers is needed to optimize patient well-being. The study aimed to identify and evaluate the burden of epilepsy care across the age spectrum from the caregiver’s per...
Saved in:
| Main Authors: | , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2025-06-01
|
| Series: | Epilepsy & Behavior Reports |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2589986424000935 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850239734164488192 |
|---|---|
| author | Ioannis Karakis Santiago Flesler Sanman Ghorpade Rio Carla Pineda Kalpesh Joshi James Cooper Shilpa Patkar Andrea Schulz Savita Bakhshi Anand Nicola Barnes |
| author_facet | Ioannis Karakis Santiago Flesler Sanman Ghorpade Rio Carla Pineda Kalpesh Joshi James Cooper Shilpa Patkar Andrea Schulz Savita Bakhshi Anand Nicola Barnes |
| author_sort | Ioannis Karakis |
| collection | DOAJ |
| description | Caregivers are important stakeholders in epilepsy management, and effective communication between healthcare providers (HCPs) and caregivers is needed to optimize patient well-being. The study aimed to identify and evaluate the burden of epilepsy care across the age spectrum from the caregiver’s perspective and understand the perception and management of caregiver burden, including drivers of decision-making in clinical practice, by HCPs. This was a cross-sectional survey of unpaid caregivers of persons with epilepsy (PWE) and HCPs treating PWE. A total of 200 caregivers (China and Taiwan: n = 65/200, 32.5 % each; Argentina: n = 70/200, 35.0 %), and 200 HCPs (China and Taiwan: n = 70/200, 35.0 % each; Argentina: n = 60/200, 30.0 %) participated. Caregivers commonly experienced emotional impacts including anxiety (58.5 %), depression (45.5 %), work/school productivity loss (40.0 %), reduced working hours (40.0 %), or financial stress (24.5 %). HCPs identified several challenges faced by caregivers care, such as fatigue (85.0 %), poor-quality sleep (68.0 %), emotional impacts and stress (61.5 % each), anxiety (57.0 %), and worry about the patient’s future prospects (54.0 %) (e.g., health status (56.5 %), loss of work productivity/career opportunities (50.5 %), worsening of the condition (47.0 %), seizure frequency (46.0 %), and impact on quality of life (46.0 %)). Caregivers for PWE reported emotional, work-related, physical, financial, and social impacts. HCPs recognized similar findings and alignment with the caregiving burden. This study identifies gaps in caregiver support and can be a basis for future initiatives to improve the needs of caregivers and gaps in family-HCP communication so that they can partner with HCPs in the care of PWE. |
| format | Article |
| id | doaj-art-1cdec28bb0574f3692b914f0abc880a2 |
| institution | OA Journals |
| issn | 2589-9864 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Epilepsy & Behavior Reports |
| spelling | doaj-art-1cdec28bb0574f3692b914f0abc880a22025-08-20T02:01:04ZengElsevierEpilepsy & Behavior Reports2589-98642025-06-013010073610.1016/j.ebr.2024.100736Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and ArgentinaIoannis Karakis0Santiago Flesler1Sanman Ghorpade2Rio Carla Pineda3Kalpesh Joshi4James Cooper5Shilpa Patkar6Andrea Schulz7Savita Bakhshi Anand8Nicola Barnes9Department of Neurology, Emory University School of Medicine, 12 Executive Park Dr NE, Atlanta, GA 30322, USA; Department of Neurology, University of Crete School of Medicine, Heraklion 71003, Crete, GreeceConsultant Pediatric Neurologist, Hospital Aleman, CINNES, Av. Pueyrredón 1640, Ciudad de Buenos Aires, ArgentinaGlobal Medical Affairs, GSK, Dr. Annie Besant Road, Mumbai 400030, Maharashtra, India; Corresponding author.Global Medical Affairs, GSK, 23rd Floor, The Finance Centre, 26th Street, Taguig, 1634 Metro Manila, PhilippinesGlobal Medical Affairs, GSK, Dr. Annie Besant Road, Mumbai 400030, Maharashtra, IndiaGlobal Medical Affairs, GSK, 980 Great West Rd, London TW8 9GS, UKGlobal Medical Affairs, GSK, Dr. Annie Besant Road, Mumbai 400030, Maharashtra, IndiaEvidera, Inc., 7101 Wisconsin Ave # 1400, Bethesda, MD 20814, USAEvidera, Inc., The Ark, 2nd Floor, 201 Talgarth Road, London W6 8BJ, UKEvidera, Inc., The Ark, 2nd Floor, 201 Talgarth Road, London W6 8BJ, UKCaregivers are important stakeholders in epilepsy management, and effective communication between healthcare providers (HCPs) and caregivers is needed to optimize patient well-being. The study aimed to identify and evaluate the burden of epilepsy care across the age spectrum from the caregiver’s perspective and understand the perception and management of caregiver burden, including drivers of decision-making in clinical practice, by HCPs. This was a cross-sectional survey of unpaid caregivers of persons with epilepsy (PWE) and HCPs treating PWE. A total of 200 caregivers (China and Taiwan: n = 65/200, 32.5 % each; Argentina: n = 70/200, 35.0 %), and 200 HCPs (China and Taiwan: n = 70/200, 35.0 % each; Argentina: n = 60/200, 30.0 %) participated. Caregivers commonly experienced emotional impacts including anxiety (58.5 %), depression (45.5 %), work/school productivity loss (40.0 %), reduced working hours (40.0 %), or financial stress (24.5 %). HCPs identified several challenges faced by caregivers care, such as fatigue (85.0 %), poor-quality sleep (68.0 %), emotional impacts and stress (61.5 % each), anxiety (57.0 %), and worry about the patient’s future prospects (54.0 %) (e.g., health status (56.5 %), loss of work productivity/career opportunities (50.5 %), worsening of the condition (47.0 %), seizure frequency (46.0 %), and impact on quality of life (46.0 %)). Caregivers for PWE reported emotional, work-related, physical, financial, and social impacts. HCPs recognized similar findings and alignment with the caregiving burden. This study identifies gaps in caregiver support and can be a basis for future initiatives to improve the needs of caregivers and gaps in family-HCP communication so that they can partner with HCPs in the care of PWE.http://www.sciencedirect.com/science/article/pii/S2589986424000935EpilepsyCaregiverHealth care providersBurden |
| spellingShingle | Ioannis Karakis Santiago Flesler Sanman Ghorpade Rio Carla Pineda Kalpesh Joshi James Cooper Shilpa Patkar Andrea Schulz Savita Bakhshi Anand Nicola Barnes Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina Epilepsy & Behavior Reports Epilepsy Caregiver Health care providers Burden |
| title | Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina |
| title_full | Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina |
| title_fullStr | Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina |
| title_full_unstemmed | Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina |
| title_short | Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina |
| title_sort | caregiver burden and healthcare providers perspectives in epilepsy an observational study in china taiwan and argentina |
| topic | Epilepsy Caregiver Health care providers Burden |
| url | http://www.sciencedirect.com/science/article/pii/S2589986424000935 |
| work_keys_str_mv | AT ioanniskarakis caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT santiagoflesler caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT sanmanghorpade caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT riocarlapineda caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT kalpeshjoshi caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT jamescooper caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT shilpapatkar caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT andreaschulz caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT savitabakhshianand caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina AT nicolabarnes caregiverburdenandhealthcareprovidersperspectivesinepilepsyanobservationalstudyinchinataiwanandargentina |