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Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Longitudinal cohort studies gather large amounts of data over time, often without direct benefit to participants. A positive experience may encourage retention in the study, and participants may benefit in unanticipated ways. Objective: To explore first‐time mothers' experiences of taking part in a longitudinal cohort study and completing self‐administered surveys during pregnancy and at 3, 6, 9 and 12 months' postpartum. Design: Content analysis of comments written by participants in the Maternal health And Maternal Morbidity in Ireland study's five self‐completion surveys, a multisite cohort study exploring women's health and health problems during and after pregnancy. This paper focuses on what women wrote about taking part in the research. Ethical approval was granted by the site hospitals and university. Setting and participants: A total of 2174 women were recruited from two maternity hospitals in Ireland between 2012 and 2015. Findings: A total of 1000 comments were made in the five surveys. Antenatally, barriers related to surveys being long and questions being intimate. Postpartum, barriers related to being busy with life as first‐time mothers. Benefits gained included gaining access to information, taking time to reflect, stopping to think and being prompted to seek help. Survey questions alone were described as valuable sources of information. Discussion and conclusions: Findings suggest that survey research can "give back" to women by being a source of information and a trigger to seek professional help, even while asking sensitive questions. Understanding this can help researchers construct surveys to maximize benefits, real and potential, for participants. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This paper engages with recent debates in geography and associated disciplines that are concerned with the wider analytic issues to be confronted in researching an elite. Drawing on a case study of the construction of a policy position on GMOs and the Environment in Ireland, the methodological challenges encountered researching up the hybrid elite central to this development are interrogated. In particular, emphasis is placed on the politics of time, which becomes central when a new sector is emerging, and meanings and definitions are being constructed. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to test the psychometric properties of the Facilitative Student–Patient Relationship (FSPR) Scale in clinical practicum in hospital settings within six European countries. Design: A multi‐country, cross‐sectional survey design was applied. Methods: A convenience sample of graduating nursing students (N = 1,796) completed the FSPR Scale. Psychometric testing was carried out through explorative factor analysis and confirmatory factor analysis. Internal consistency was assessed using Cronbach's alpha. Results: Both validity and reliability of the scale were confirmed. The explorative factor analysis yielded a two‐factor construct explaining 47.7% of the total variance, identifying two sub‐scales: caring relationship and learning relationship. Confirmatory factor analysis confirmed the two‐factor structure. The Cronbach alpha coefficients (0.8–0.9) indicated acceptable reliability of the scale. [ABSTRACT FROM AUTHOR]

Aim: Nurse leaders influence workplace culture; however, little is known about ethnic cultural influences on nurse leader development. This research aims to identify personal strategies promoting effective leadership by nurse leaders from European small island countries. Design: Descriptive qualitative study. Methods: In 2017, nineteen semi‐structured interviews with nurse leaders from England, Greece, Republic of Ireland and Malta explored leadership journeys, strategies employed to support their growth and development, and how cultural identity played a role. Transcripts were analysed using reflexive thematic analysis. Results: Four main themes and 12 subthemes captured the strategies and approaches of the nurse leaders: (1) Influences, (2) Communication, (3) Process and (4) Relationships. These findings reflect and validate the five transformational leadership practices of the Exemplary Leadership Model. While cultural island identity was discussed, there was a shared cultural identity within the role of "nurse leader" that spanned all islands. Patient or Public Contributions: Nineteen nurse leaders contributed to this study. [ABSTRACT FROM AUTHOR]

Background and Objectives: Benefit from endovascular thrombectomy (EVT) for large-vessel occlusion (LVO) acute ischaemic stroke (AIS) is well demonstrated. Furthermore, emerging evidence supports efficacy in appropriately selected patients treated beyond current recommendations of 6 h. We evaluated clinical outcomes in patients undergoing late EVT at our institution.Methods: Retrospective review of prospectively collected clinical database on 355 patients who underwent EVT for LVO AIS. Data collected consisted of patient demographics, radiological findings and outcome details. Outcomes, including 90-day functional status, recanalization, symptomatic intracranial haemorrhage (sICH) and 90-day mortality, for patients undergoing EVT <6 h, >6 h, and >7.3 h, were compared.Results: A total of 355 patients underwent EVT for LVO AIS at our institution during the review period, with 74 (21%) patients treated ≥6 h from symptom onset. Successful recanalization was achieved in 285 (80%) patients, with 228 (81%) achieving a mTICI ≥2b in the <6 h group, and 57 (77%) in the >6 h group (P = 0.429). Ninety-day functional independence (mRS 0-2) was achieved in 162 (46%) patients, with 130 (46%) achieving a mRS of 0-2 in the <6 h group, and 32 (43%) in the >6 h group (P = 0.643). No significant differences were found in rates of sICH or 90-day mortality. No significant differences in functional independence, recanalization rates, sICH or mortality were identified in patients treated with EVT >7.3 h compared to <7.3 h.Conclusions: In appropriately selected patients, EVT >6 h was associated with comparable outcomes to those treated <6 h. These data support a physiological approach to patient selection. [ABSTRACT FROM AUTHOR]