Care delivery and self management strategies for adults with epilepsy

Bradley, Peter; Lindsay, Bruce D.; Fleeman, Nigel

doi:10.1002/14651858.cd006244.pub3

Cited by 79 publications

(64 citation statements)

References 38 publications

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“…A growing body of literature, primarily in adult epilepsy, has shown promise for the effectiveness of self-management interventions. [5][6][7][8][9][10][11] However, a recent systematic review of 24 pediatric epilepsy self-management intervention studies revealed that none of the pediatric epilepsy interventions met criteria for Level I or II evidence. 12,13 Furthermore, in many cases, self-management outcomes were not well described, and there was a wide diversity of intervention targets and outcomes.…”

Section: Introductionmentioning

confidence: 99%

Measurement in pediatric epilepsy self‐management: A critical review

et al. 2018

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youth birth to 18 years with a seizure disorder or an epilepsy diagnosis and/or their caregivers, published 1985-2014 in English, and conducted in countries with a very high human development index. The review was conducted in 6 phases: (1) identification of bibliographical search criteria and databases; (2) abstract assessment; (3) full article review; (4) organization of final citations into categories; (5) identification of predictors, potential mediators/moderators, and outcomes associated with self-management factors and categorization of factors as influences, processes, or behaviors across individual, family, community, and health care domains; and (6) critique of self-management instrument studies. Twenty-five studies that evaluated factors associated with self-management were identified. Individual and family-focused factors were the most commonly studied predictors of self-management, with psychosocial care needs and self-efficacy for seizure management identified as key factors associated with pediatric epilepsy self-management. Few studies have included mediator and moderator analyses. Measures of adherence were the most commonly used outcome. There has been a predominant focus on pediatric epilepsy influences and processes that are modifiable in nature, potentially at the expense of evidence for the role of community and health systems in pediatric epilepsy self-management. The 6 self-management instrument tools reported scientific rationale and good psychometric properties. Results highlight several key modifiable cognitive and behavioral targets for skills development: adherence, self-efficacy for seizure management, attitudes toward epilepsy, and family variables. Moving forward, a comprehensive pediatric epilepsy self-management model, well-validated measures of self-management behaviors, mediator/moderator designs to examine the complex relationships between predictors and pediatric epilepsy self-management outcomes, and studies examining the community and health care domains of self-management are necessary.

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Section: Introductionmentioning

confidence: 99%

Measurement in pediatric epilepsy self‐management: A critical review

et al. 2018

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“…Notwithstanding the centrality of education and advocacy in enabling PWE to self-manage their condition [47,48], as with other chronic diseases, safe and effective decision-making in relation to referral, diagnosis, treatment and management rely on having competent practitioners in primary, secondary and tertiary care [49]. In addition to leading on educational developments for PWE, findings indicate that the ESNs were also leading on educational capacity building initiatives D4 Reviewer of all SOPs developed as part of the strategic reform of epilepsy services in Ireland via the National Epilepsy Programme.…”

Section: Discussionmentioning

confidence: 99%

“…That guideline will be used nationally, so she had a big input into that. [40][41][42][43][44][45][46][47] involving the wider healthcare workforce, both within and outside their own organisation. This finding is important given the many unmet needs that PWE experience in relation to education and service provision [5][6][7][8]13,50,60].…”

Section: Discussionmentioning

confidence: 99%

“…Data indicated that ESNs were recognised by people within and outside of the discipline as experts in their area of clinical practice. Consequently, they were invited onto national and international committees where they exerted their influence on issues related to epilepsy [40][41][42][43][44][45][46][47] service provision, clinical policy, practice and professional development ( Table 3, D1-D6). Table 4 also indicates the breadth and types of memberships held.…”

Section: Exerting Influence Through Committees and Lobbying (Theme Dmentioning

confidence: 99%

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Rising to the challenge: Epilepsy specialist nurses as leaders of service improvements and change (SENsE study)

Higgins

Downes

Varley

et al. 2018

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A B S T R A C TPurpose: To report the leadership role and change activities of epilepsy specialist nurses (ESNs) in Ireland; findings from the SENsE study. Method: A mixed methods study design was used, involving 12 epilepsy specialist nurses working in five units in Ireland, 24multidisciplinary team members working with them, and 35 people with epilepsy and their family members. Data were collected using individual and focus group interviews, observation and documentary analysis. Results: Five key areas in which ESNs demonstrated leading on the change agenda were identified. These included: Initiating new clinical practice developments; Building capability within the multidisciplinary team; Developing education programmes and resources for people with epilepsy, family and the public; Exerting influence through membership of committees and lobbying; and Advancing the ESN role. Conclusion: Though the epilepsy specialist nurse role was first established in the UK in 1988, much of the literature that discusses or describes the ESN role is founded on anecdotal evidence, or focusses on their clinical expertise. Findings from this study provide empirical evidence that the ESNs were involved as key players in leading changes within the services, in the education of others, and the continuous advancement of epilepsy care.

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“…In contrast to other disease groups, systematic implementation of self-management support for people with epilepsy is extremely limited. But, epilepsy self-management programs, tested in randomized control trials with robust study samples, offer substantial promise to improve outcomes and their use could serve as a starting point to augment epilepsy self-management support [29–31]. …”

Section: Why Would Clinicians Want Patients To Manage Themselves?mentioning

confidence: 99%