Power, Robert and Byrne, John-Paul and Kiersey, Rache and Varley, Jarlath and Doherty, Colin P. and Lambert, Veronica and Heffernan, Emma and Saris, A. Jamie and Fitzsimons, Mary (2020) Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland. Epilepsy & Behavior, 102. p. 106668. ISSN 15255050

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Abstract

The National Clinical Programme for Epilepsy (NCPE) in Ireland aims to deliver a holistic model of integrated person-centered care (PCC) that addresses the full spectrum of biomedical and psychosocial needs of people with epilepsy (PwE). However, like all strategic plans, the model encompasses an inherent set of assumptions about the readiness of the environment to implement and sustain the actions required to realize its goals. In this study, through the lens of PwE, the Irish epilepsy care setting was explored to understand its capacity to adopt a new paradigm of integrated PCC. Focus groups and semi-structured one-to-one interviews were employed to capture the qualitative experiences of a sample of Irish PwE (n = 27) in the context of the care that they receive. Participants were from different regions of the country and were aged between 18 and 55 years with 1 to 42 years since diagnosis (YSD). Highlighting a gap between policy intent and action on the ground, findings suggest that patient readiness to adopt a new model of care cannot be assumed. Expectations, preferences, behaviors, and values of PwE may sustain the more traditional constructions of healthcare delivery rather than the integrated PCC goals of reform. These culturally constituted perceptions illustrate that PwE do not instinctively appreciate the goals of healthcare reform nor the different behavior expected from them within a reformed healthcare system. Recalibrating deep-rooted patient views is necessary to accomplish the aspirations of integrated PCC. Patient engagement emphasizing the meaningful role that they can play in shaping their healthcare services is vital.

Item Type:	Article
Keywords:	Qualitative research Beliefs Person-centered care; Patient perspectives; Integrated care; Chronic disease;
Academic Unit:	Assisting Living & Learning,ALL institute Faculty of Social Sciences > Anthropology
Item ID:	16071
Identification Number:	https://doi.org/10.1016/j.yebeh.2019.106668
Depositing User:	Andrew Jamie Saris
Date Deposited:	13 Jun 2022 14:30
Journal or Publication Title:	Epilepsy & Behavior
Refereed:	Yes
URI:	Publisher
Use Licence:	This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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