Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland

Power, Robert; Byrne, John-Paul; Kiersey, Rachel; Varley, Jarlath; Doherty, Colin P.; Lambert, Veronica; Heffernan, Emma; Saris, A. Jamie; Fitzsimons, Mary

doi:10.1016/j.yebeh.2019.106668

Cited by 7 publications

(9 citation statements)

References 34 publications

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“…The establishment of the Irish National Care Programme for Epilepsy (NCPE) in 2010 sought to drive clinical service improvements in Ireland through improved patient experience, access to care, and value [4] , [5] . At the core of the NCPE was an emphasis of delivering truly person-centered care (PCC) to people with epilepsy (PWE) nationwide, which would be achieved through continuous meaningful engagements between the health system and PWE [6] , [7] . In the past few years, extensive engagements with PWE have resulted in the rollout of nurse-led epilepsy services supported by a point of care, web-based national epilepsy electronic patient record (EEPR), and dedicated emergency department seizure care pathways across Ireland [8] , [9] , [10] .…”

Section: Introductionmentioning

confidence: 99%

LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management

Banks

Corrigan

Grogan

et al. 2021

Epilepsy & Behavior

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As part of our ongoing interest in patient-and family-centered care in epilepsy, we began, before the onset of the CoVID-19 pandemic, to evaluate the concerns and preferences of those delivering and receiving care via telemedicine. CoVID-19 arrived and acted as an unexpected experiment in nature, catalyzing telemedicine's widespread implementation across many disciplines of medicine. The arrival of CoVID-19 in Ireland gave us the opportunity to record these perceptions pre-and post-CoVID. Data were extracted from the National Epilepsy Electronic Patient Record (EEPR). Power BI Analytics collated data from two epilepsy centers in Dublin. Analysis of data on reasons for using the telephone support line was conducted. A subset of patients and clinicians who attended virtual encounters over both periods were asked for their perception of telemedicine care through a mixed methods survey. Between 23rd December 2019 and 23rd March 2020 (pre-CoVID era), a total of 1180 patients were seen in 1653 clinical encounters. As part of a telemedicine pilot study, 50 of these encounters were scheduled virtual telephone appointments. Twenty eight surveys were completed by clinicians and 18 by patients during that period. From 24th March 2020 to 24th June 2020, 1164 patients were seen in 1693 encounters of which 729 (63%) patients were seen in 748 scheduled virtual encounters. 118 clinician impressions were captured through an online survey and 75 patients or carers completed a telephone survey during the post-CoVID era. There was no backlog of appointments or loss of care continuity forced by the pandemic. Clinicians expressed strong levels of satisfaction, but some doubted the suitability of new patients to the service or candidates for surgery receiving care via telemedicine. Patients reported positive experiences surrounding telephone appointments comparing them favorably to face-to-face encounters. The availability of a shared EEPR demonstrated no loss of care contact for patients with epilepsy. The survey showed that telemedicine is seen as an effective and satisfactory method of delivering chronic outpatient care.

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Section: Introductionmentioning

confidence: 99%

LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management

Banks

Corrigan

Grogan

et al. 2021

Epilepsy & Behavior

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“…Ethnographic exploration of patient‐ and family‐centeredness in Irish epilepsy care provided significant domain knowledge to inform PiSCES design. Using observations, one‐to‐one interviews, focus groups and participatory action research, the practice and behavior of epilepsy care was examined through the lens of those who receive (patients, families, and carers) and those who provide (nurses, doctors, clinic support personnel, and community resource officers) epilepsy care and services 32–34 . These domain experts provided information on their experience of a holistic approach to patient needs; patients treated as experts in their own care; recognition of patient autonomy; clinician‐patient partnership and shared decision‐making; dignity and respect in the clinical setting; and views on how information technology could support more PFCC.…”

Section: Methodsmentioning

confidence: 99%

The development of an epilepsy electronic patient portal: Facilitating both patient empowerment and remote clinician‐patient interaction in a post‐COVID‐19 world

et al. 2020

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Objectives: The current coronavirus disease 2019 (COVID-19) pandemic stresses an urgency to accelerate much-needed health service reform. Rapid and courageous changes being made to address the immediate impact of the pandemic are demonstrating that the means and technology to enable new models of health care exist. For example, innovations such as electronic patient portals (ePortal) can facilitate (a) radical reform of outpatient care; (b) cost containment in the economically constrained aftermath of the pandemic; (c) environmental sustainability by reduction of unnecessary journeys/transport. Herein, the development of Providing Individualised Services and Care in Epilepsy (PiSCES), an ePortal to the Irish National Epilepsy Electronic Patient Record, is demonstrated. This project, which pre-dates the COVID-19 crisis, aims to facilitate better patient-and family-centered epilepsy care. Methods: A combination of ethnographic research, document analysis, and joint application design sessions was used to elicit PiSCES requirements. From these, a specification of desired modules of functionality was established and guided the software development.

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“…The common thread throughout this study was the crucial role ENs Higgins, Downes, Varley, Tyrell, et al, 2018;Power et al, 2020;World Health Organization, 2018). Adopting a holistic approach to care is necessary to optimise the EN role and an important principle of nursing practice globally, which involves advocacy, timely access to clinical and psychosocial support, and knowledge-sharing to facilitate shared decision-making (Higgins et al, 2019a(Higgins et al, , 2019bLocatelli et al, 2021;Zonneveld et al, 2020).…”

Section: Crucialroleofepilepsynursesmentioning

confidence: 99%

“…Many people living with epilepsy (PLWE) have one or more comorbid chronic health conditions. Consequently, international health care policy reforms promote the adoption of a more holistic approach to epilepsy management and integrated person‐centred care (PCC) approach, believed fundamental to improving PLWE, family, and care provider experiences (Hutchinson, Ryder, et al, 2020; Lystad et al, 2020; Power et al, 2020; Sikka et al, 2015). PCC ‘represents an approach to improve the quality and cost‐effectiveness of care by ensuring that services are well‐coordinated around people's needs’ (Goodwin et al, 2021, p. 22).…”

Section: Introductionmentioning

confidence: 99%

Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy

Hutchinson

Ryder

Coleman

et al. 2022

Journal of Clinical Nursing

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Aims and Objectives:The aim of this study is to enhance the understanding of the core elements and influencing factors on the community-based epilepsy nurse's role and responsibilities.Background: Internationally, epilepsy nurse specialists play a key role in providing person-centred care and management of epilepsy but there is a gap in understanding of their role in the community.Design: A national three-stage, mixed-method study was conducted.Methods: One-on-one, in-depth semi-structured qualitative interviews were conducted online with 12 community-based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse-led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. Results:Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. ( 2)The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. ( 3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID-19 pandemic experiences, role boundaries, funding, and resource availability. Conclusion: Community epilepsy nurses play a pivotal role in providing holistic, person-centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. Relevance to Clinical Practice: Epilepsy nurses' person-centred approach to epilepsy management is influenced by the limited investment in epilepsy-specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. No Patient or Public Contribution: Only epilepsy nurses' perspectives were sought.

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Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland

Cited by 7 publications

References 34 publications

LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management

LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management

The development of an epilepsy electronic patient portal: Facilitating both patient empowerment and remote clinician‐patient interaction in a post‐COVID‐19 world

Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy

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