In-Home Respite Care Services Available to Families With Palliative Care Needs in Quebec: Novel Digital Environmental Scan.

BACKGROUND: Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality. OBJECTIVE: This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking. METHODS: A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized. RESULTS: A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services. CONCLUSIONS: Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.

Information and Communication Technologies to Support the Provision of Respite Care Services: Scoping Review.

BACKGROUND: Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services. However, an understanding of the use of ICTs and research in this area is lacking. OBJECTIVE: The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services. METHODS: A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative. RESULTS: A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services. CONCLUSIONS: There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services.

Library services enriching community engagement for dementia care: The Tales & Travels Program at a Canadian Public Library as a case study.

Growing dementia-friendly library services are contributing to community-based dementia care. Emerging community programs in libraries and museums provide notable opportunities for promoting engagement and inclusivity, but these programs have yet to receive in-depth assessments and analyses to guide future research and practice. This paper presents a case study examining a social and storytelling program for people with dementia run by a Canadian public library. It investigates two research questions: How can public library programs contribute to community-based dementia care? And what are public libraries' strengths and challenges in running programs for people with dementia? The study involves participant observations of the program and semi-structured interviews with people with dementia, caregivers, and program facilitators (librarians and Alzheimer Society coordinators). Through thematic analysis of fieldnotes and transcripts, the study reveals how this inclusive platform supports engagement, fosters relationships, helps caregivers, and reaches broader communities. This research further uncovers the librarians' diversified roles as demonstrated through their collaboration with professionals, preparation and research, and facilitation of the sessions. This paper advances librarianship research on enriching community-based dementia care, including furthering inclusivity and engagement and extending accessible library services. By analyzing library programming for the dementia community and assessing its strengths and challenges, the paper highlights librarians' awareness of the community's evolving needs and their collaboration with other professionals. It offers practical insights on useful resources and emerging best practices that will hopefully inspire other initiatives in which information professionals can help improve the well-being of vulnerable populations.

"Informal Caregiver" in Nursing: An Evolutionary Concept Analysis.

The informal caregiver experience has surged as a research topic in health care, including in nursing. However, the "informal" language is controversial, lacking conceptual clarity. Without a common understanding of who an "informal caregiver" may be, nurses may fail to consistently identify informal caregivers requiring support. Therefore, a concept analysis of "informal caregiver" was conducted on the basis of a sample of 20% of relevant nursing literature. The analysis of the attributes, antecedents, consequences, and contexts associated with "informal caregiver" offers a foundational guide for the ongoing development of nurses' understanding of the informal caregiver role.

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study.

BACKGROUND: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. OBJECTIVE: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. METHODS: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. RESULTS: We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/34652.

Persuasive technology for health and wellness: State-of-the-art and emerging trends.

The evolving field of persuasive and behavior change technology is increasingly targeted at influencing behavior in the area of health and wellness. This paper provides an empirical review of 16 years (85 papers) of literature on persuasive technology for health and wellness to: (1.) answer important questions regarding the effectiveness of persuasive technology for health and wellness, (2.) summarize and highlight trends in the technology design, research methods, motivational strategies, theories, and health behaviors targeted by research to date, (3.) uncover pitfalls of existing persuasive technological interventions for health and wellness, and (4.) suggest directions for future research.

Individual responses to a method of cursor assistance.

PURPOSE: The aim of this study was to evaluate a new click assistance technique, Steady Clicks, designed to help computer users with motor impairments to click more accurately using a mouse. Specifically, Steady Clicks suppresses two types of errors: slipping while clicking and accidentally clicking. Steady Clicks suppresses these errors by freezing the cursor during mouse clicks, preventing overlapping button presses and suppressing clicks made while the mouse is moving at a high velocity. METHOD: Eleven individuals with motor impairments participated in a repeated-measures evaluation of Steady Clicks. This evaluation involved performing a clicking task both with and without Steady Clicks, while time-stamped log files detailing each participant's cursor movements and mouse button presses were recorded. RESULTS: When using Steady Clicks, five of the 11 participants were able to select targets using significantly fewer attempts, and had significantly improved overall task performance times. Blocking of overlapping and high velocity clicks also shows promise as an error filter. For some participants, Steady Clicks had effects beyond a simple reduction in errors and error correction time, including faster positioning times with fewer, shorter pauses. Two participants slipped a greater distance when using Steady Clicks, suggesting they were taking advantage of the support. Two were much less fatigued, and one was able to start using a simpler clicking strategy. Nine participants preferred Steady Clicks to the unassisted condition. CONCLUSION: Large individual differences were found not only in performance but also in the ways that individuals reacted to and benefited from the cursor assistance. The results showed that Steady Clicks can be used to effectively block slipping and accidental clicks by individuals for whom this is a problem. This assistance could be used in conjunction with existing techniques for cursor positioning, to enable faster and more effective mouse use for those who currently struggle with the standard computer mouse.