Living with epidermolysis bullosa: Daily challenges and health-care needs.

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.

The Blended Reflective Inquiry Educators Framework; origins, development and utilisation.

Reflective practice is widely considered to be an integral part of contemporary pedagogical practice in higher education. The integration of reflection and reflective practice into professional education curricula in areas such as nursing, education and the social sciences, has coincided with an expansion of the reflective practice literature which continues to proliferate within a range of disciplinary fields. However, an interesting paradox is beginning to emerge whereby educators who are charged with developing students reflective ability are often required to do so in the absence of practical educator-focused frameworks and/or guidelines. The purpose of this paper is to contribute to the debate by presenting the 'Blended Reflective Inquiry Educators Framework' which is designed for educators who wish to support students to develop their reflective abilities and reflective capacity. This innovative framework was developed following a two stage action research study which was designed to investigate how registered nurses can be facilitated to develop reflective practice skills and abilities. The study resulted in the development of this innovative educator's framework which uses an inquiry based, blended learning approach, to facilitate reflective practice.

Conceptualising a model to guide nursing and midwifery in the community guided by an evidence review.

BACKGROUND: Successful models of nursing and midwifery in the community delivering healthcare throughout the lifespan and across a health and illness continuum are limited, yet necessary to guide global health services. Primary and community health services are the typical points of access for most people and the location where most care is delivered. The scope of primary healthcare is complex and multifaceted and therefore requires a practice framework with sound conceptual and theoretical underpinnings. The aim of this paper is to present a conceptual model informed by a scoping evidence review of the literature. METHODS: A scoping evidence review of the literature was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement. Databases included CINAHL, MEDLINE, PsycINFO and SocINDEX using the EBSCO platform and the Cochrane Library using the keywords: model, nursing, midwifery, community, primary care. Grey literature for selected countries was searched using the Google 'advanced' search interface. Data extraction and quality appraisal for both empirical and grey literature were conducted independently by two reviewers. From 127 empirical and 24 non-empirical papers, data extraction parameters, in addition to the usual methodological features, included: the nature of nursing and midwifery; the population group; interventions and main outcomes; components of effective nursing and midwifery outcomes. RESULTS: The evidence was categorised into six broad areas and subsequently synthesised into four themes. These were not mutually exclusive: (1) Integrated and Collaborative Care; (2) Organisation and Delivery of Nursing and Midwifery Care in the Community; (3) Adjuncts to Nursing Care and (4) Overarching Conceptual Model. It is the latter theme that is the focus of this paper. In essence, the model depicts a person/client on a lifespan and preventative-curative trajectory. The health related needs of the client, commensurate with their point position, relative to both trajectories, determines the nurse or midwife intervention. Consequently, it is this need, that determines the discipline or speciality of the nurse or midwife with the most appropriate competencies. CONCLUSION: Use of a conceptual model of nursing and midwifery to inform decision-making in primary/community based care ensures clinical outcomes are meaningful and more sustainable. Operationalising this model for nursing and midwifery in the community demands strong leadership and effective clinical governance.

Human exposure to uranium in groundwater.

High concentrations of uranium (mean=620 microg/L) were detected in water samples collected from private wells in a residential community. Based on isotopic analyses, the source of the uranium contamination appeared to be from naturally occurring geological deposits. In homes where well water concentrations of uranium exceeded the drinking water standard, the residents were advised to use an alternate water source for potable purposes. Several months after the residents had stopped drinking the water, urine samples were collected and tested for uranium. Elevated concentrations of uranium (mean=0.40 microg/g creatinine) were detected in urine samples, and 85 percent of the urine uranium concentrations exceeded the 95th percentile concentration of a national reference population. Urine uranium concentrations were positively correlated with water uranium concentrations, but not with the participants' ages or how long they had been drinking the water. Six months later, a second urine sample was collected and tested for uranium. Urine uranium concentrations decreased in most (63 percent) of the people. In those people with the highest initial urine uranium concentrations, the urine levels decreased an average of 78 percent. However, urine uranium concentrations remained elevated (mean=0.27 microg/g), and 87 percent of the urine uranium concentrations exceeded the 95th percentile concentration of the reference population. The results of this investigation demonstrated that after long-term ingestion of uranium in drinking water, elevated concentrations of uranium in urine could be detected up to 10 months after exposure had stopped.