November 2, 2021

BACKGROUND: The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. This team includes academic researchers, trainees, research staff, citizens (persons living with dementia and family/friend caregivers of persons living in nursing homes), and decision-makers (ministries of health, health authorities, operators of nursing homes). The TREC team has experience working with health system partners but wanted to undertake activities to enhance the collaboration between the academic researchers and citizen members. The aim of this paper is to describe the TREC team members’ experiences and perceptions of citizen engagement and identify necessary supports to promote meaningful engagement in health research teams. METHODS: We administered two online surveys (May 2018, July 2019) to all TREC team members (researchers, trainees, staff, decision-makers, citizens). The surveys included closed and open-ended questions guided by regional and international measures of engagement and related to respondents’ experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their needs for training and other tools to support engagement. We analyzed the closed-ended responses using descriptive statistics. RESULTS: We had a 78% response rate (68/87) to the baseline survey, and 27% response rate (21/77) to the follow-up survey. At baseline, 30 (44%) of respondents reported they were currently engaged in a research project with citizen partners compared to 11(52%) in the follow-up survey. Nearly half (10(48%)) of the respondents in the follow-up reported an increase in citizen engagement over the previous year. Respondents identified many benefits to citizen engagement (unique perspectives, assistance with dissemination) and challenges (the need for specific communication skills, meeting organizing and facilitation, and financial/budget support), with little change between the two time points. Respondents reported that the amount of citizen engagement in their research (or related projects) had increased or stayed the same. CONCLUSIONS: Despite increasing recognition of the benefits of including persons with lived experience and large-scale promotion efforts, the research team still lack sufficient training and resources to engage non-academic partners. Our research identified specific areas that could be addressed to improve the engagement of citizens in health research.

BACKGROUND: The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. The TREC team undertook several activities to enhance the collaboration between the academic researchers and us, the citizen members. Known as VOICES (Voice Of (potential) Incoming residents, Caregivers Educating uS) we aim to share our experience working with a large research team. METHODS: We reflect on the findings reported in the paper by Chamberlain et al. (2021). They described the findings from two surveys (May 2018, July 2019) that were completed by TREC team members (researchers, trainees, staff, decision-makers, citizens). The survey questions asked about the respondents’ experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their unmet needs for training. RESULTS: The paper reported on the survey findings from all the survey respondents (research team, decision-makers, citizens), but much of the results focused on the researcher perspective. They reported that respondents believed that citizen engagement was a benefit to their research but noted many challenges. While we appreciate the researchers’ positive perceptions of citizen engagement, much work remains to fully integrate us into all stages of the research. We offer our reflections and suggestions for how to work with citizen members and identify areas for more training and support. CONCLUSIONS: Despite the increased interest in citizen engagement, we feel there is a lack of understanding and support to truly integrate non-academic team members on research teams. We hope the discussion in this commentary identifies specific areas that need to be addressed to support the continued engagement of citizens and show how the lived experience can bring value to research teams.

OBJECTIVE: Responsive behaviours (eg, wandering, resisting care and verbal abuse) are a continuing issue for staff and individuals living in long-term care (LTC) homes. The LTC environment can influence responsive behaviours and is a factor in determining the quality of life for those living there. The ways in which the quality of the environment might influence responsive behaviours has not been investigated yet. We hypothesised that better quality environments would be associated with reduced rates of responsive behaviours. We used a tool that simultaneously encompasses human and structural elements of the environment, a novel approach in this field of research. DESIGN: Cross-sectional study, using data collected from September 2014 to May 2015 as part of the Translating Research in Elder Care research programme. SETTING: A representative, stratified (size, owner-operator model and health region) random sample of 76 LTC homes in British Columbia, Alberta, Manitoba. PARTICIPANTS: 13 224 individuals (67.3% females) living in participating LTC homes. OUTCOME MEASURES: Quality of care unit work environment was assessed using the observable indicators of quality (OIQ) tool. Responsive behaviours were assessed using routinely collected Resident Assessment Instrument-Minimum Data Set V.2.0 data. RESULTS: Adjusted regression coefficients of overall Aggressive Behaviour Scale score and interpersonal communication were 0.02 (95% CI -0.011 to 0.045), grooming 0.06 (95% CI -0.032 to 0.157), environment-basics 0.067 (95% CI 0.024 to 0.110), odour -0.066 (95% CI -0.137 to -0.004), care delivery -0.007 (95% CI -0.033 to 0.019), environment-access -0.027 (95% CI -0.062 to 0.007), environment-homelike -0.034 (95% CI -0.065 to -0.002) and total OIQ score 0.003 (95% CI -0.004 to 0.010). CONCLUSIONS: We found small associations between the environmental quality and responsive behaviours in Western Canadian LTC homes. Higher scores on homelikeness were associated with decreased responsive behaviours. Higher scores on basic environmental quality were associated with increased responsive behaviours.

Leadership in long-term care is a burgeoning field of research, particularly that which is focused on enabling point of care staff to provide high-quality and responsive healthcare. In this article, we focus on the relatively important role that leadership plays in enabling the conditions for high-quality long-term care. Our methodological approach involved a rapid in-depth ethnography undertaken by an interdisciplinary team across eight public and non-profit long-term care homes in Canada, where we conducted over 1,000 hours of observations and 275 formal and informal interviews with managers, staff, residents, family members and volunteers. Guiding our analysis post hoc is the LEADS in a Caring Environment framework. We mapped key promising leadership practices identified by our analysis and discuss how these can inform the development of leadership standards across staff and management in long-term care.

BACKGROUND: Effective communication between residents (older adults), families, and the healthcare team supports person-centred care. However, communication breakdowns can occur that can impact care and outcomes. The aim of this paper is to describe a feedback approach to developing a communication tool for residents and families to guide information sharing during care discussions with the healthcare team in long-term care. METHODS: Development of the communication tool included consultation with key stakeholders for their feedback and input. Following initial development of the tool template by our research team, we invited feedback from our study collaborators. Next, individual interviews and a focus group were conducted with family members, followed by individual interviews with selected residents from two long-term care homes in Ontario, Canada. Participants were asked to provide input and feedback on the tool’s content and usability and to share ideas for improving the tool. Content analysis was used to analyse the interview data. RESULTS: Feedback from residents and family included suggestions to enhance the tool’s content and use of plain language, and suggestions for potential application of the tool. CONCLUSION: Feedback highlighted the value of engaging residents and family members in the development of a communication tool. The communication tool offers a structured format to support participation of residents and families in information sharing for care discussions with the healthcare team.

Nationally, there have been over 643,000 coronavirus disease 2019 (COVID-19) cases among nursing home residents and more than 130,000 deaths as of March 2021. During the COVID-19 pandemic, nursing home staff, in particular frontline nursing assistants (NAs), played an essential role in the care of residents while witnessing the devastating effects of COVID-19 on vulnerable older adults. According to the United States Bureau of Labor Statistics in 2019, there were 1,579,100 NAs in the United States, with 37% working in nursing facilities and 11% in community care or assisted living facilities. NAs comprise 36% of all nursing home staff and provide personal care to nursing home residents such as bathing, toileting, dressing, eating, and mobility. On average, one NA supports 12 residents in one shift, often earning just above minimum wage. In 2020, their median annual salary was $30,830 per year.

BACKGROUND: Providing parents with resources that aid in the identification and management of acute childhood illnesses helps those parents feel better equipped to assess their children’s health and significantly changes parental health-seeking behaviors. Some of these resources are limited by accessibility and scalability. Remote locations and staffing limitations create challenges for parents aiming to access their child’s health information. Mobile health apps offer a scalable, accessible solution for improving health literacy by enabling access to health information through mobile devices. OBJECTIVE: The aim of our study is to create an inventory of acute childhood illness apps that are available to North American parents and caregivers, assess their quality, and identify the areas in which future apps can be improved. METHODS: We conducted an environmental scan to identify and summarize app information for parents and digital health researchers. The Google and Apple app marketplaces were used as search platforms. We built a list of search terms and searched the platforms for apps targeted at parents and related to acute pediatric illnesses in the United States and Canada. We assessed apps meeting the inclusion criteria using the Mobile App Rating Scale (MARS), a validated tool for assessing the quality of health apps. The MARS examines apps on 5 subscales: engagement, functionality, aesthetics, information quality, and subjective quality. Data were analyzed by MARS subscale averages and individual item scores. RESULTS: Overall, 650 unique apps were screened, and 53 (8.2%) were included. On a scale of 1-5, apps had an average engagement score of 2.82/5 (SD 0.86), functionality score of 3.98/5 (SD 0.72), aesthetics score of 3.09/5 (SD 0.87), information quality score of 2.73/5 (SD 1.32), and subjective quality score of 2.20/5 (SD 0.79). On the same scale of 1-5, app scores ranged from 2.2/5 to 4.5/5 (mean 3.2, SD 0.6). The top 3 MARS-scored apps were Baby and Child First Aid (4.5/5), Ada (4.5/5), and HANDi Paediatric (4.2/5). Taken together, the top 3 apps covered topics of emergency pediatric first aid, identification of (and appropriate response to) common childhood illnesses, a means of checking symptoms, and a means of responding to emergency situations. There was a lack of Canadian-based app content available to parents in both marketplaces; this space was filled with content originating primarily in the United Kingdom and the United States. In addition, published evidence of the impact of the included apps was poor: of 53 apps, only 5 (9%) had an evidence base showing that the app had been trialed for usability or efficacy. CONCLUSIONS: There is a need for evidence-based acute childhood illness apps of Canadian origin. This environmental scan offers a comprehensive picture of the health app landscape by examining trends in acute childhood illness apps that are readily available to parents and by identifying gaps in app design.

In 2011, Translating Emergency Knowledge for Kids (TREKK) was established to address this research-to-practice gap. Supported by the Government of Canada’s Networks of Centres of Excellence Knowledge Mobilization (NCE-KM) initiative, infrastructure was built that initially connected 12 PERC sites (based in pediatric institutions) [10] with 37 general EDs in nine provinces/territories. Together, clinicians and researchers at these sites set out to accelerate the speed at which the latest evidence in pediatric emergency care was shared with two key receptor communities: (1) healthcare professionals working within general EDs; and (2) parents/families seeking emergency care for their child. The goals were to: (1) determine the knowledge needs of our receptor communities; (2) assemble evidence and develop educational tools to help general EDs access, adapt and implement new knowledge; and (3) build a sustainable knowledge mobilization network in pediatric emergency care.