A Sense of Wonder: Enhancing Access to Folktales through Task and Facet Analysis

Discusses the approach taken in Phase 1 of a three-phase project Folktales, Facets and FRBR [funded by a grant from OCLC/ALISE]. This project works with the special collection of folktales at the Center for Children’s Books (CCB) at the University of Illinois at Urbana-Champaign, and the scholars who use this collection. The project aims to enhance the effectiveness and efficiency of folktale access through deep understanding of user needs. Phase 1 included facet analysis of the bibliographic records for a sample of 100 folktale books in the CCB, and task analysis of interviews with four CCB-affiliated faculty. Describes the information tasks, information seeking obstacles, and desired features for a discovery and access tool related to folktales for this initial group of scholarly users of folktales.

Evaluating health policy and legal responses : how to reduce barriers and improve access to orphan drugs for rare diseases in Canada

Abstract : Rare diseases are debilitating conditions often leading to severe clinical manifestations for affected patients. Orphan drugs have been developed to treat these rare diseases affecting a small number of individuals. Incentives in the legal framework aimed to recoup the research and development cost of orphan drugs for pharmaceutical companies have been implemented in the United States and the European Union. At the present time, Canada is still lacking a legal and policy framework for orphan drugs. Several problems at the federal and provincial levels remain: lack of research funds for rare diseases, discrepancies on orphan drug policies between provinces, difficulties to access and reimburse these high price drugs. Recommendations and measures are proposed, such as a pan-Canadian (national) scientific committee to establish evidence-based guidelines for patients to access orphan drugs uniformly in all provinces with a disease specific registry, a formal agreement for a centralized Canadian public funding reimbursement procedure, and increasing the role of “guardian” for prices by the Patented Medicines Review Board in Canada. These recommendations and measures will be beneficial for the implementation of a policy framework for orphan drugs in Canada.

Usefulness of social tagging in organizing and providing access to the web: An analysis of indexing consistency and quality

This dissertation research points out major challenging problems with current Knowledge Organization (KO) systems, such as subject gateways or web directories: (1) the current systems use traditional knowledge organization systems based on controlled vocabulary which is not very well suited to web resources, and (2) information is organized by professionals not by users, which means it does not reflect intuitively and instantaneously expressed users’ current needs. In order to explore users’ needs, I examined social tags which are user-generated uncontrolled vocabulary. As investment in professionally-developed subject gateways and web directories diminishes (support for both BUBL and Intute, examined in this study, is being discontinued), understanding characteristics of social tagging becomes even more critical. Several researchers have discussed social tagging behavior and its usefulness for classification or retrieval; however, further research is needed to qualitatively and quantitatively investigate social tagging in order to verify its quality and benefit. This research particularly examined the indexing consistency of social tagging in comparison to professional indexing to examine the quality and efficacy of tagging. The data analysis was divided into three phases: analysis of indexing consistency, analysis of tagging effectiveness, and analysis of tag attributes. Most indexing consistency studies have been conducted with a small number of professional indexers, and they tended to exclude users. Furthermore, the studies mainly have focused on physical library collections. This dissertation research bridged these gaps by (1) extending the scope of resources to various web documents indexed by users and (2) employing the Information Retrieval (IR) Vector Space Model (VSM) - based indexing consistency method since it is suitable for dealing with a large number of indexers. As a second phase, an analysis of tagging effectiveness with tagging exhaustivity and tag specificity was conducted to ameliorate the drawbacks of consistency analysis based on only the quantitative measures of vocabulary matching. Finally, to investigate tagging pattern and behaviors, a content analysis on tag attributes was conducted based on the FRBR model. The findings revealed that there was greater consistency over all subjects among taggers compared to that for two groups of professionals. The analysis of tagging exhaustivity and tag specificity in relation to tagging effectiveness was conducted to ameliorate difficulties associated with limitations in the analysis of indexing consistency based on only the quantitative measures of vocabulary matching. Examination of exhaustivity and specificity of social tags provided insights into particular characteristics of tagging behavior and its variation across subjects. To further investigate the quality of tags, a Latent Semantic Analysis (LSA) was conducted to determine to what extent tags are conceptually related to professionals’ keywords and it was found that tags of higher specificity tended to have a higher semantic relatedness to professionals’ keywords. This leads to the conclusion that the term’s power as a differentiator is related to its semantic relatedness to documents. The findings on tag attributes identified the important bibliographic attributes of tags beyond describing subjects or topics of a document. The findings also showed that tags have essential attributes matching those defined in FRBR. Furthermore, in terms of specific subject areas, the findings originally identified that taggers exhibited different tagging behaviors representing distinctive features and tendencies on web documents characterizing digital heterogeneous media resources. These results have led to the conclusion that there should be an increased awareness of diverse user needs by subject in order to improve metadata in practical applications. This dissertation research is the first necessary step to utilize social tagging in digital information organization by verifying the quality and efficacy of social tagging. This dissertation research combined both quantitative (statistics) and qualitative (content analysis using FRBR) approaches to vocabulary analysis of tags which provided a more complete examination of the quality of tags. Through the detailed analysis of tag properties undertaken in this dissertation, we have a clearer understanding of the extent to which social tagging can be used to replace (and in some cases to improve upon) professional indexing.

The use of Acceptance and Commitment Therapy to address psychological distress experienced by caregivers: a randomised controlled feasibility trial

Background: An extensive research literature has documented the impact of caring for an individual with acquired brain injury (ABI) on caregivers and family members, including role adjustment, psychological distress, social isolation, family tension and coping with the cognitive and behavioural difficulties of the injured person. Given these findings it is important this population have access to services and supports. Acceptance and Commitment Therapy (ACT) is an intervention that helps individuals to accept difficult experiences and commit to behaviour that is consistent with their values. Research into the effectiveness of ACT to support caregivers is at a preliminary stage. Aim: To investigate the feasibility of using ACT to reduce psychological distress and increase psychological flexibility in ABI caregivers. A secondary aim was to gain an understanding of the experience of caregivers in this context and how this can inform the development and delivery of interventions for this population. Method: Phase one was a randomised controlled feasibility trial of an ACT intervention for use with ABI caregivers. The parameters of this study were formulated around the PICO (population, intervention, control, and outcome) framework. Eighteen carers were recruited and randomised to ACT or an enhanced treatment as usual (ETAU) group. ACT was implemented over 3 sessions; and ETAU was implemented over 2 sessions. The General Health Questionnaire, Valuing Questionnaire, Acceptance and Action Questionnaire, Experiential Avoidance of Caregiving Questionnaire and the Flexibility of Responses to Self-Critical Thoughts Scale were administered to both groups at baseline and following the final session. Phase two used a retrospective qualitative design that involved conducting semi-structured interviews with four participants from phase one. Results: ACT and control participants were successfully recruited. Positive feedback was obtained from ACT participants suggesting that the intervention was acceptable. There were no significant differences between the ACT and ETAU groups on outcome measures. However, there were challenges retaining participants and the overall attrition rate was high (44.44%). Therefore a number of participants did not complete the full complement of sessions, which may have impacted on this result. Qualitative results illustrated the challenges this population face including significant adjustments in their life, the emotional impact of having a loved one with a brain injury and trying to adapt to the changes in the injured person. In addition, findings elucidated the types of support that this population would find helpful and the barriers to accessing same. Conclusions: Findings from this study highlight factors that will help the development of this intervention further for a caring population. Recommendations for future implementation include completing some preparatory work with carers before beginning the intervention, consideration of a larger sample and wider recruitment strategy from local services, barriers to attending interventions and the possibility of holding groups in local venues.

Let your voice be heard : a guide to services available to empower victims of domestic violence : Lowcountry

This brochure gives directions on how to leave an abusive relationship. It also has a list of community resources and hotlines (by county) available to victims of domestic violence in the lowcountry region of South Carolina.

Let your voice be heard : a guide to services available to empower victims of domestic violence : Mid-Carolina

This brochure gives directions on how to leave an abusive relationship. It also has a list of community resources and hotlines (by county) available to victims of domestic violence in the midlands region of South Carolina.

Let your voice be heard : a guide to services available to empower victims of domestic violence : Pee Dee

This brochure gives directions on how to leave an abusive relationship. It also has a list of community resources and hotlines (by county) available to victims of domestic violence in the Pee Dee Region of South Carolina.

Let your voice be heard : a guide to services available to empower victims of domestic violence : Upstate

This brochure gives directions on how to leave an abusive relationship. It also has a list of community resources and hotlines (by county) available to victims of domestic violence in the upstate region of South Carolina.

DIY Archives: Enhancing Access to Collections via Free, Open-Source Platforms

Presentation from the MARAC conference in Boston, MA on March 18-21, 2015. S. 24 - DIY Archives: Enhancing Access to Collections via Free, Open-Source Platforms

Inhibition of HIV cell-to-cell fusion by antiretroviral drugs and neutralizing antibodies

Poster presented at the 7th iMed.ULisboa Postgraduate Students Meeting. Lisbon, 15 July 2015

Comparison of access to medicines between Klang Valley and East Coast of peninsular Malaysia for children living in poor households

Purpose: To compare access to medicines in children living in poor households (income of USD1/person/day) between urbanised Klang Valley and rural East Coast of Peninsular Malaysia. Methods: A semi-structured interview was conducted with caregivers to determine demographics, access to medicines, knowledge, attitude and practice of parents in obtaining medicines for children. Results: There was no significant difference socio-demographically between poor households in Klang Valley (N = 58) and East Coast (N = 40). The study found that access to medicine for children (N = 325) in the households was adequate, where all households that reported illness in the children over the last 1 month and the last 6 month periods, obtained medicines and 99 % of the children were fully immunized. Qualitative analysis showed that poor households face several barriers in accessing medicines for their children such as financial, transportation, physical and attitudinal. Conclusion: Access to medicines for children living in poor households in both areas were similar and adequate. However, barriers to access remain and further studies are required.