Jinxuan Ma

Distributed knowledge in an online patient support community: Authority and discovery

Amyotrophic lateral sclerosis (ALS) is a progressively debilitating neurodegenerative condition that occurs in adulthood and targets the motor neurons. Social support is crucial to the well‐being and quality of life of people with unpredictable and incurable diseases such as ALS. Members of the PatientsLikeMe (PLM) ALS online support community share social support but also exchange and build distributed knowledge within their discussion forum. This qualitative analysis of 1,000 posts from the PLM ALS online discussion examines the social support within the PLM ALS online community and explores ways community members share and build knowledge. The analysis responds to 3 research questions: RQ1: How and why is knowledge shared among the distributed participants in the PLM‐ALS threaded discussion forum?; RQ2: How do the participants in the PLM‐ALS threaded discussion forum work together to discover knowledge about treatments and to keep knowledge discovered over time?; and RQ3: How do participants in the PLM‐ALS forum co‐create and treat authoritative knowledge from multiple sources including the medical literature, healthcare professionals, lived experiences of patients and “other” sources of information such as lay literature and alternative health providers? The findings have implications for supporting knowledge sharing and discovery in addition to social support for patients.

Information Behavior of Rural Dementia Caregivers Over the Course of Counseling Interventions

This poster reports findings from an analysis of 81 qualitative interviews with rural dementia caregivers who participated in two research projects that evaluated cognitive behavioral therapy (CBT) problemsolving interventions designed to help them manage their caregiving and reduce depression. The research questions posed in this analysis are: (RQ1) How do rural dementia caregivers who have participated in a CBT program interact with the information around them and available to them? (RQ2) How do these caregivers manage, explicitly or tacitly, their information needs and uses? The analysis demonstrates similarities and differences in information behaviors and information environments across the caregivers; for example that physical information artifacts are important to different caregivers for varied reasons, and that religious communities fulfill multiple information-related roles. The findings demonstrate the importance of accounting for the unique constraints on older caregivers in designing interventions to improve and support their caregiving experiences. Creating links among people, such as connecting caregivers to similar others facing similar challenges, and providing them with a structure to allow them to focus on their goals, appear critical to the success of such interventions.

Qualitative Analysis of Faith Community Nurse–Led Cognitive-Behavioral and Spiritual Counseling for Dementia Caregivers:

This article presents themes emerging from semistructured interviews with dementia family caregivers in rural communities who participated in an integrative, cognitive-behavioral and spiritual counseling intervention, and with faith community nurses (FCNs) who delivered the intervention. The primary objectives of the counseling intervention were to ameliorate dementia caregivers’ depressive affect and the severity of their self-identified caregiving and self-care problems. The qualitative portion of the study was intended to elicit caregivers’ and FCNs’ perceptions of the benefits and drawbacks of the intervention. We conducted interviews with seven FCN/caregiver pairs 4 times during the 6-month counseling process, totaling 56 interviews. Themes emerging from the interviews included caregivers’ perception of burden and care partners’ problem behavior; formation of therapeutic alliance between FCNs and caregivers; problem-solving skills, tools, and resources; caregivers’ use of problem-solving strategies; spirituality in caregiving and counseling processes; FCNs’ prior professional experience; and caregiver and FCN time constraints.

Emerging roles of health information professionals for library and information science curriculum development: a scoping review

Objective This scoping review identified the emerging and evolving roles of health information professionals (HIPs) in a range of tasks and settings, as they adapt to varied user needs, while keeping up with changing medical landscapes to provide evidence-based information support in grand rounds and scholarly research. The review aims to inform library school students about expected entry-level job qualifications and faculty about adaptable changes to specialized HIP curricula. Methods The authors examined 268 peer-reviewed journal articles that concentrated on evolving HIP roles, professional settings, and contexts by retrieving results from several multidisciplinary databases. Results HIPs, who generally serve as “embedded librarians,” are taking on more active roles as collaborators, research experts, and liaisons, replacing more passive and exclusive roles as information providers and outreach agents or research assistants. These evolving roles in the reviewed literature were broken into nine categories in approximate order of prominence. Conclusions A new model linking these evolving roles to the Medical Library Association (MLA) fundamental professional competencies was developed to provide an operational examination and research-based evidence for adapting HIP continuing education curriculum learning outcomes, course content and delivery, and student career pathways for existing graduate HIP specialization courses in library programs. The model indicates each role’s connection to the MLA professional competencies, based on MLA’s detailed description of each competency. A better understanding of HIP demands and expectations will enhance the capacity of library programs to prepare students in HIP specializations.