The VR intervention was deemed acceptable and safe. Next steps include assessing feasibility and effectiveness of the VR intervention for pain and distress.

Background Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease. Objective The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development. Methods A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis. Results Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services. Conclusions Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease–related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents.

BackgroundCollecting patient reported outcome measures (PROMs) via computer-based electronic data capture system may improve feasibility and facilitate implementation in clinical care. We report our initial experience about the acceptability of touch-screen tablet computer-based, self-administered questionnaires among patients with chronic kidney disease (CKD), including stage 5 CKD treated with renal replacement therapies (RRT) (either dialysis or transplant).MethodsWe enrolled a convenience sample of patients with stage 4 and 5 CKD (including patients on dialysis or after kidney transplant) in a single-centre, cross-sectional pilot study. Participants completed validated questionnaires programmed on an electronic data capture system (DADOS, Techna Inc., Toronto) on tablet computers. The primary objective was to evaluate the acceptability and feasibility of using tablet-based electronic data capture in patients with CKD. Descriptive statistics, Fischer’s exact test and multivariable logistic regression models were used for data analysis.ResultsOne hundred and twenty one patients (55% male, mean age (± SD) of 58 (±14) years, 49% Caucasian) participated in the study. Ninety-two percent of the respondents indicated that the computer tablet was acceptable and 79% of the participants required no or minimal help for completing the questionnaires. Acceptance of tablets was lower among patients 70 years or older (75% vs. 95%; p = 0.011) and with little previous computer experience (81% vs. 96%; p = 0.05). Furthermore, a greater level of assistance was more frequently required by patients who were older (45% vs. 15%; p = 0.009), had lower level of education (33% vs. 14%; p = 0.027), low health literacy (79% vs. 12%; p = 0.027), and little previous experience with computers (52% vs. 10%; p = 0.027).ConclusionsTablet computer-based electronic data capture to administer PROMs was acceptable and feasible for most respondents and could therefore be used to systematically assess PROMs among patients with CKD. Special consideration should focus on elderly patients with little previous computer experience, since they may require more assistance with completion.Electronic supplementary materialThe online version of this article (10.1186/s12882-017-0771-7) contains supplementary material, which is available to authorized users.

Background As the aging population continues to grow, the number of adults living with dementia or other cognitive disabilities in residential long-term care homes is expected to increase. Technologies such as real-time locating systems (RTLS) are being investigated for their potential to improve the health and safety of residents and the quality of care and efficiency of long-term care facilities. Objective The aim of this study is to identify factors that affect the implementation, adoption, and use of RTLS for use with persons living with dementia or other cognitive disabilities in long-term care homes. Methods We conducted a systematic review of the peer-reviewed English language literature indexed in MEDLINE, Embase, PsycINFO, and CINAHL from inception up to and including May 5, 2020. Search strategies included keywords and subject headings related to cognitive disability, residential long-term care settings, and RTLS. Study characteristics, methodologies, and data were extracted and analyzed using constant comparative techniques. Results A total of 12 publications were included in the review. Most studies were conducted in the Netherlands (7/12, 58%) and used a descriptive qualitative study design. We identified 3 themes from our analysis of the studies: barriers to implementation, enablers of implementation, and agency and context. Barriers to implementation included lack of motivation for engagement; technology ecosystem and infrastructure challenges; and myths, stories, and shared understanding. Enablers of implementation included understanding local workflows, policies, and technologies; usability and user-centered design; communication with providers; and establishing policies, frameworks, governance, and evaluation. Agency and context were examined from the perspective of residents, family members, care providers, and the long-term care organizations. Conclusions There is a striking lack of evidence to justify the use of RTLS to improve the lives of residents and care providers in long-term care settings. More research related to RTLS use with cognitively impaired residents is required; this research should include longitudinal evaluation of end-to-end implementations that are developed using scientific theory and rigorous analysis of the functionality, efficiency, and effectiveness of these systems. Future research is required on the ethics of monitoring residents using RTLS and its impact on the privacy of residents and health care workers.