Are mobile apps meeting the needs of caregivers of people living with dementia? An evaluation of existing apps for caregivers.

OBJECTIVES: Informal caregivers of people living with dementia (ICPDs) experience stressors that can lead to adverse outcomes. Although apps for ICPDs are available, evidence to support their effectiveness is limited. This investigation was aimed at providing an evaluation of available apps for ICPDs. METHODS: We conducted two studies: 1) search and evaluation of available apps; and 2) controlled trial of two apps identified in the Study 1 (NCT05217004). For Study 2, participants were randomly assigned to one of the two app-using groups or a control group. Outcome measures were administered before, post-intervention, and at a follow-up. Interviews with caregivers were conducted to examine their needs regarding the development of future apps. RESULTS: Sixteen apps were examined in Study 1. Results suggest that the number and type of features present in each app may not be sufficient to address the multifaceted needs of ICPDs. In Study 2, contrary to expectation, we did not identify differences between the app-using and control conditions on our outcome measures. Participants noted several content and user-experience needs to consider in developing new apps. CONCLUSION: Findings from the investigation can inform future developments of apps to address the needs of ICPDs.

The Effectiveness of Social Media in the Dissemination of Knowledge About Pain in Dementia.

OBJECTIVES: Traditional knowledge dissemination methods have been ineffective in leading to timely and widespread changes in clinical practice. Social media have the potential to reach broader audiences than more traditional methods that disseminate research findings. We evaluated the effectiveness of using social media to mobilize knowledge about pain in dementia. METHODS: We developed an online repository of evidence-based content (e.g., guidelines, assessment approaches) and a video about pain in dementia. The video was uploaded to YouTube, a video-sharing platform. We collaborated with stakeholder organizations on a 5-month social media campaign (#SeePainMoreClearly) on Twitter, a social networking site, to disseminate digital content about pain in dementia. The response to our initiatives was evaluated with Web and social media metrics, a video questionnaire, and a comparison of the extent of Twitter discussions about pain in dementia before and during the campaign period. RESULTS: Web metrics showed a great reach of the initiative: The #SeePainMoreClearly hashtag received more than 5,000,000 impressions and was used in 31 countries. The online repository was viewed by 1,218 individuals from 55 countries, and the video resulted in 51,000 views. Comparisons between the pre-campaign and campaign periods demonstrated a higher number of posts about pain in dementia during the campaign period. CONCLUSION: The findings have implications for closing the knowledge-to-practice gap in dementia care through faster mobilization of scientific findings. Our campaign compares favorably with other health information dissemination initiatives. The methodologies used in the study could serve as a framework for the development of social media initiatives in other health disciplines.

Initiatives Targeting Health Care Professionals: A Systematic Review of Knowledge Translation Pain Assessment and Management Studies Focusing on Older Adults.

OBJECTIVES: Pain is often undertreated in older adult populations due to factors, such as insufficient continuing education and health care resources. Initiatives to increase knowledge about pain assessment and management are crucial for the incorporation of research evidence into practice. Knowledge translation (KT) studies on pain management for older adults and relevant knowledge users have been conducted; however, the wide variety of KT program formats and outcomes underscores a need to evaluate and systematically report on the relevant literature. MATERIALS AND METHODS: Using a systematic review methodology, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycInfo, and Web of Science databases were searched from inception to June 2023. Pain-related KT programs targeted towards older adults, their informal caregivers, and health care professionals were examined. Initiatives focusing on health care professionals are the focus of this review. Initiatives focusing on older adults are reported in a companion article. RESULTS: From an initial 21,669 search results, 172 studies met our inclusion criteria. These studies varied widely in focus and delivery format but the majority were associated with significant risk of bias. In this report, we are focusing on 124 studies targeting health care professionals; 48 studies involving initiatives targeting older adults are reported in a companion article. Moreover, most programs were classified as knowledge mobilization studies without an implementation component. Across all studies, knowledge user satisfaction with the initiative and the suitability of the material presented were most commonly assessed. Patient outcomes, however, were underemphasized in the literature. CONCLUSION: Patient and clinical outcomes must be a focus of future research to fully conceptualize the success of KT programs for older adult individuals. Without implementation plans, disseminated knowledge does not tend to translate effectively into practice.

Pain in Dementia: An Empirical Test of a Common Assumption.

Numerous, and often largely overlapping, observational pain assessment tools have been developed specifically to assess pain in older adults with dementia under the assumption that a specialized approach is necessary to evaluate pain in this population. However, this assumption has never been tested empirically. As an empirical test of this implicit assumption, our goal was to compare existing tools for people living with dementia (with respect to psychometric properties), not only against each other, but also against a tool developed for a different population with cognitive impairments. Videos of older adults with severe dementia recorded in long-term care settings were coded for pain behaviors in the laboratory. Trained coders coded pain behaviors in video segments of older adults with dementia during a quiet baseline condition as well as during a physical examination (designed to identify painful areas), using various observational pain assessment tools. An observational measure of agitation was employed to facilitate the assessment of discriminant validity. Consistent with our expectations, all pain tools (including the tool developed for younger people with cognitive impairments) successfully differentiated between painful and nonpainful states, with large effect sizes. This was the first study to compare tools specifically developed to assess pain in people living with dementia to a tool developed for a different population. Given that all tools under study showed satisfactory psychometric properties when tested on persons with dementia, this study suggests that the assumption that different tools are necessary for different populations with cognitive impairments cannot be taken for granted. PERSPECTIVE: This article challenges an implicitly held assumption that specialized tools are needed to assess pain in different populations with cognitive impairments. Given commonalities in pain expression across populations, further research is needed to determine whether population-specific tools are needed.

Initiatives Targeting Patients: A Systematic Review of Knowledge Translation Pain Assessment and Management Studies Focusing on Older Adults.

OBJECTIVES: Older adults frequently experience persistent pain but are often unaware of self-management and other strategies that can help improve their condition. In a related article, we reported on pain assessment and management knowledge translation initiatives related to older adults that were targeting health professionals. In this paper, we report on initiatives targeting older adults. MATERIALS AND METHODS: Using systematic review methodology, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycInfo, and Web of Science databases were searched from inception to June 2023. Pain-related knowledge translation programs targeted towards older adults, their informal caregivers, and health care professionals were examined. RESULTS: From an initial 21,669 search results, 172 studies met our inclusion criteria. Of these studies, 49 targeted older adults. These studies varied widely in focus and delivery format, but the majority were associated with a significant risk of bias. Older adults with musculoskeletal pain were the primary recipients of education. Most programs were classified as knowledge mobilization initiatives. The remainder were considered self-management programs. Knowledge users were satisfied with the suitability of the information presented, and patient outcomes were a primary concern across all studies. Behavioral changes and pain management outcomes, however, were underemphasized in the literature. CONCLUSION: Knowledge acquisition outcomes are overrepresented in the current literature compared with behavioral outcomes changes. Nonetheless, older adults report benefitting from the guidance provided in self-management programs when applying knowledge to practice. Future research is needed to better understand the facilitators and barriers to pain management changes in this population.

The #SeePainMoreClearly Phase II Pain in Dementia Social Media Campaign: Implementation and Evaluation Study.

BACKGROUND: Social media platforms have been effective in raising awareness of the underassessment and undertreatment of pain in dementia. OBJECTIVE: After a successful pilot campaign, we aimed to scale our pain-in-dementia knowledge mobilization pilot initiative (ie, #SeePainMoreClearly) to several social media platforms with the aid of a digital media partner. The goal of the initiative was to increase awareness of the challenges in the assessment and management of pain among people with dementia. A variety of metrics were implemented to evaluate the effort. Through this work, we endeavored to highlight key differences between our pilot initiative (which was a grassroots initiative), focusing largely on Twitter and YouTube, and the current science-media partnership. We also aimed to generate recommendations suitable for other social media campaigns related to health or aging. METHODS: Evidence-based information about pain in dementia was summarized into engaging content (eg, videos) tailored to the needs of various knowledge users (eg, health professionals, families, and policy makers). We disseminated information using Facebook (Meta Platforms), Twitter (X Corp), YouTube (Alphabet Inc), Instagram (Meta Platforms), and LinkedIn (LinkedIn Corp) and measured the success of the initiative over a 12-month period (2020 to 2021). The evaluation methods focused on web analytics and questionnaires related to social media content. Knowledge users' web responses about the initiative and semistructured interviews were analyzed using thematic analysis. RESULTS: During the course of the campaign, >700 posts were shared across all platforms. Web analytics showed that we drew >60,000 users from 82 countries to our resource website. Of the social media platforms used, Facebook was the most effective in reaching knowledge users (ie, over 1,300,000 users). Questionnaire responses from users were favorable; interview responses indicated that the information shared throughout the initiative increased awareness of the problem of pain in dementia and influenced respondent behavior. CONCLUSIONS: In this investigation, we demonstrated success in directing knowledge users to a resource website with practical information that health professionals could use in patient care along with pain assessment and management information for caregivers and people living with dementia. The evaluation metrics suggested no considerable differences between our pilot campaign and broader initiative when accounting for the length of time of each initiative. The limitations of large-scale health campaigns were noted, and recommendations were outlined for other researchers aiming to leverage social media as a knowledge mobilization tool.

Item response theory analysis of the Dysfunctional Beliefs and Attitudes about Sleep-16 (DBAS-16) scale in a university student sample.

Unhelpful beliefs about sleep have been shown to exacerbate distress associated with sleep-related difficulties. University students are particularly vulnerable to experiencing sleep-related problems. The Dysfunctional Beliefs and Attitudes about Sleep-16 (DBAS-16) scale is a widely used instrument that assesses for sleep-disruptive cognitions. Although psychometric support for the DBAS-16 is available, Item Response Theory (IRT) analysis is needed to examine its properties at the item level. Psychometric investigation in non-clinical samples can help identify people who may be at risk for developing sleep problems. We examined the DBAS-16 using IRT on a sample of 759 university students. Our results identified items and subscales that adequately/inadequately differentiated between students who held unhelpful beliefs about sleep and those who did not. The DBAS-16 is a valuable instrument to assess unhelpful beliefs about sleep. We outline recommendations to improve the discriminatory ability of the instrument. Future investigations should establish cross-validation with a clinical sample.

Age Differences in Thermal Pain Responses: A Direct Laboratory Comparison.

OBJECTIVES: According to a widely cited assertion, older adults are less likely than younger individuals to express pain complaints. Age-related differences in pain responses have been discussed in the literature despite a paucity of research involving direct comparisons of younger and older adults' pain reactions (i.e., verbal, nonverbal) in the context of a single experimental investigation. Our goal was to test the hypothesis that older adults are more stoic than younger adults in their expression of pain. METHODS: We measured trait stoicism as well as multiple responses to thermal pain. RESULTS: In contrast to suggestions in the literature, equivalence testing indicated that older and younger adults displayed similar verbal and nonverbal pain responses. Our results suggest that older adults are no more stoic about their pain than are younger persons. DISCUSSION: This is the first attempt to explore a wide array of age differences in pain expression within the context of a single experimental study.

Social media discussions about long-term care and the COVID-19 pandemic.

With the proliferation of social media networks, online discussions can serve as a microcosm of the greater public opinion about key issues that affect society as a whole. Online discussions have been catalyzed by the COVID-19 pandemic and have magnified challenges experienced by older adults, health care professionals, and caregivers of long-term care (LTC) residents. Our main goal was to examine how online discussions and public perceptions about LTC practices have been impacted by the COVID-19 pandemic. We conducted a content analysis of Twitter posts about LTC to understand the nature of social media discussions regarding LTC practices prior to (March to June 2019) and following the declaration of the COVID-19 pandemic (March to June 2020). We found that a much greater number of Twitter posts about LTC was shared during the COVID-19 period than in the year prior. Multiple themes emerged from the data including highlighting concerns about LTC, providing information about LTC, and interventions and ideas for improving LTC conditions. The proportion of posts linked to several of these themes changed as a function of the pandemic. Unsurprisingly, one major new issue that emerged in 2020 is that users began discussing the shortcomings of infection control during the pandemic. Our findings suggest that increased public concern offers momentum for embarking on necessary changes to improve conditions in LTC.