The development and preliminary testing of an instrument to measure the perceived economic burden of a subtype of arrhythmogenic right ventricular cardiomyopathy (ARVC) on patients and families in Newfoundland

The goal of this thesis was to develop, construct, and validate the Perceived Economic Burden scale to quantitatively measure the burden associated with a subtype Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) in families from the island of Newfoundland. An original 76 item self-administered survey was designed using content from existing literature as well as themes from qualitative research conducted by our team and distributed to individuals of families known to be at risk for the disease. A response rate of 37.2% (n = 64) was achieved between December 2013 and May 2014. Tests for data quality, Likert scale assumptions and scale reliability were conducted and provided preliminary evidence of the psychometric properties of the final constructed perceived economic burden of ARVC scale comprising 62 items in five sections. Findings indicated that being an affected male was a significant predictor of increased perceived economic burden in the majority of economic burden measures. Affected males also reported an increased likelihood of going on disability and difficulty obtaining insurance. Affected females also had an increased perceived financial burden. Preliminary results suggest that a perceived economic burden exists within the ARVC population in Newfoundland.

Development of an education resource for families and clients navigating through end-of-life care with at-home palliation

Background: Community health nurses (CHNs) play a pivotal role in providing end-of-life care to clients diagnosed with a life-threatening illness. Providing quality end-of-life care is an ethical obligation. Eastern Health’s palliative end-of-life care program (PEOLC) offers nursing care, equipment, services, and support. However, the caregiver’s need for practical information about end-of-life issues is not addressed. Purpose: To develop an educational resource to assist clients and families during end-of-life and to provide a framework for new CHNs in home palliation. Methods: An informal Needs Assessment, a literature review, an environmental scan, and consultations with four CHNs involved with home palliation. Results: An educational resource was developed to address the practical end-of-life issues identified in the literature review and consultations. Conclusion: An improved delivery of care for at-home palliation in the community for clients and families, and a framework for new CHNs.

A PHR system with policy-based fine-grained access control and revocation mechanism

Collaborative sharing of information is becoming much more needed technique to achieve complex goals in today's fast-paced tech-dominant world. Personal Health Record (PHR) system has become a popular research area for sharing patients informa- tion very quickly among health professionals. PHR systems store and process sensitive information, which should have proper security mechanisms to protect patients' private data. Thus, access control mechanisms of the PHR should be well-defined. Secondly, PHRs should be stored in encrypted form. Cryptographic schemes offering a more suitable solution for enforcing access policies based on user attributes are needed for this purpose. Attribute-based encryption can resolve these problems, we propose a patient-centric framework that protects PHRs against untrusted service providers and malicious users. In this framework, we have used Ciphertext Policy Attribute Based Encryption scheme as an efficient cryptographic technique, enhancing security and privacy of the system, as well as enabling access revocation. Patients can encrypt their PHRs and store them on untrusted storage servers. They also maintain full control over access to their PHR data by assigning attribute-based access control to selected data users, and revoking unauthorized users instantly. In order to evaluate our system, we implemented CP-ABE library and web services as part of our framework. We also developed an android application based on the framework that allows users to register into the system, encrypt their PHR data and upload to the server, and at the same time authorized users can download PHR data and decrypt it. Finally, we present experimental results and performance analysis. It shows that the deployment of the proposed system would be practical and can be applied into practice.

The impact of income and social status on population health: a scenario based simulation for nursing students

The development of critical thinking and communication skills is an essential part of Baccalaureate and Practical Nursing education. Scenario-based simulation, a form of experiential learning, directly engages students in the learning process. This teaching learning method has been shown to increase students’ understanding of the influence of their personal beliefs and values when working with clients and to improve therapeutic communication and critical thinking skills. Students in both the BN (Collaborative) and PN Programs at the Centre for Nursing Studies demonstrate a strong theoretical understanding of the impact of income and social status on population health but often experience difficulty applying this knowledge to the clinical situations involving clients and families. The purpose of the project was to develop a scenario-based simulation activity to provide nursing students with first-hand experiences of the impact of income and social status on health service accessibility. A literature review and stakeholder consultations were conducted to inform the project. The findings of these initiatives and Kolb’s Experiential Learning Theory were used to guide all aspects of the project. This report is an account of how the income and social status simulation and its accompanying materials were developed. This project provided an excellent learning opportunity that demonstrated the use of advanced nursing competencies.

Community library programs that work: Building youth and family literacy

A collection of versatile best practices for promoting literacy development by utilizing local community connections in school and public libraries. This book provides a fresh approach to learning as well as guidelines for creating dynamic and relevant library programs for children, teens, and families. Organized thematically, each chapter includes relevant topical research and three to eight community-focused approaches. Programs range from small, single-library initiatives in rural communities to multi-site, cross-border initiatives. This resource includes collaborative and locally inspired programs, many of which can be scaled to the budget of any library, school, or community organization.