Background Older adults desire to stay independent at home for as long as possible. We developed an interactive website to inform older adults and caregivers about ways to achieve this. Objective This study aimed to perform an in-depth exploration among potential end users about how to improve the interactive website to better inform older adults and caregivers about ways to stay independent at home. Methods To complement the results of a quantitative survey on the usability and acceptability of the website before implementation, we conducted a qualitative descriptive study. Using multiple recruitment strategies, we recruited a purposeful sample of older adults (aged ≥65 years) and caregivers of older adults struggling to stay independent at home. We conducted face-to-face or telephonic interviews in either English or French. In addition, we collected sociodemographic characteristics, other characteristics of participants (eg, health, digital profile, and perception of retirement homes), and experiences with using the website (factors facilitating the use of the website, barriers to its use, and suggestions for improvement). Interviews were audio recorded, transcribed verbatim, and thematically analyzed by two researchers. Results We recruited 15 participants, including 5 older adults (mean age 75 years, SD 6) and 10 caregivers (mean age 57 years, SD 14). The mean interview time was 32 min (SD 14). Most older adults had either mobility or health problems or both, and many of them were receiving home care services (eg, blood pressure measurement and body care). Overall, participants found the website easy to navigate using a computer, reassuring, and useful for obtaining information. Barriers were related to navigation (eg, difficult to navigate with a cellphone), relevance (eg, no specific section for caregivers), realism (eg, some resources presented are not state funded), understandability (eg, the actors’ accents were difficult to understand), and accessibility (eg, not adapted for low digital literacy). Suggestions for improvement included a needs assessment section to direct users to the support appropriate to their needs, addition of information about moving into residential care, a section for caregivers, distinction between state-provided and private support services, simpler language, expansion of content to be relevant to all of Canada, and video subtitles for the hearing impaired. Conclusions Users provided a wealth of information about the needs of older adults who were facing a loss of autonomy and about what such a website could usefully provide. The request for less generic and more personalized information reflects the wide range of needs that electronic health innovations, such as our interactive website, need to address. After integrating the changes suggested, the new website—Support for Older Adults to Stay Independent at Home (SUSTAIN)—will be implemented and made available to better assist older adults and caregivers in staying independent at home.
Background There is little information about the functions and behavior change techniques (BCTs) needed to implement shared decision making (SDM) in clinical practice. To guide future implementation initiatives, we sought to develop a BCT taxonomy for SDM implementation interventions. Methods This study is a secondary analysis of a 2018 Cochrane review on interventions for increasing the use of shared decision making by healthcare professionals. We examined all 87 studies included in the review. We extracted relevant information on each study intervention into a spreadsheet. Coders had undergone a training workshop on intervention functions and online training on BCT Taxonomy version 1 (BCTTv1). We performed functions and BCTs coding trials, and identified coding rules. We used Michie’s guide for designing behavior change interventions to code the functions and BCTs used in the interventions. Coders met to compare coding and discrepancies were discussed until consensus was reached. Data was analyzed using simple descriptive statistics. Results Overall, 7 functions, 24 combinations of functions and 32 BCTs were used in the 87 SDM implementation interventions. The mean of functions per intervention was 2.5 and the mean of BCTs per intervention was 3.7. The functions Coercion and Restriction were not found. The most common function was Education (73 studies). Three combinations of functions were most common (e.g: Education + Persuasion, used in 10 studies). The functions associated with more effective SDM implementation interventions were Modeling and Training. The most effective combination of functions was Education + Training + Modeling + Enablement. The most commonly used BCT was Instruction on how to perform the behavior (43 studies). BCTs associated with more effective SDM implementation interventions were: Instruction on how to perform the behavior, Demonstration of the behavior, Feedback on behavior, Pharmacological support, Material reward, and Biofeedback. Twenty-five BCTs were associated with less effective SDM implementation interventions. Four new BCTs were identified: General information to support the behavior, Tailoring, Exercises to conceptually prepare for the behavior, and Experience sharing and learning. Conclusions We established a BCT taxonomy specific to the field of SDM to guide future SDM implementation interventions. Four new BCTs should be added to BCTTv1.
Background Informal caregivers often serve as decision makers for dependent or vulnerable individuals facing health care decisions. Decision regret is one of the most prevalent outcomes reported by informal caregivers who have made such decisions. Objective To examine levels of decision regret and its predictors among informal caregivers who have made health-related decisions for a loved one. Data sources We performed a systematic search of Embase, MEDLINE, Web of Science, and Google Scholar up to November 2018. Participants were informal caregivers, and the outcome was decision regret as measured using the Decision Regret Scale (DRS). Review Methods Two reviewers independently selected eligible studies, extracted data, and assessed the methodological quality of studies using the Mixed Methods Appraisal Tool. We performed a narrative synthesis and presented predictors of decision regret using a conceptual framework, dividing the predictors into decision antecedents, decision-making process, and decision outcomes. Results We included 16 of 3003 studies identified. Most studies ( n = 13) reported a mean DRS score ranging from 7.0 to 32.3 out of 100 (median = 14.3). The methodological quality of studies was acceptable. We organized predictors and their estimated effects (β) or odds ratio (OR) with 95% confidence interval (CI) as follows: decision antecedents (e.g., caregivers’ desire to avoid the decision, OR 2.07, 95% CI [1.04–4.12], P = 0.04), decision-making process (e.g., caregivers’ perception of effective decision making, β = 0.49 [0.05, 0.93], P < 0.01), and decision outcomes (e.g., incontinence, OR = 4.4 [1.1, 18.1], P < 0.001). Conclusions This review shows that informal caregivers’ level of decision regret is generally low but is high for some decisions. We also identified predictors of regret during different stages of the decision-making process. These findings may guide future research on improving caregivers’ experiences.
BackgroundFor pregnant women and their partners, the decision to undergo Down syndrome prenatal screening is difficult. Patient decision aids (PtDA) can help them make an informed decision. We aimed to identify behaviour change techniques (BCTs) that would be useful in an intervention to promote the use of a PtDA for Down syndrome prenatal screening, and to identify which of these BCTs pregnant women found relevant and acceptable.MethodsUsing the Behaviour Change Wheel and the Theoretical Domains Framework, we conducted a qualitative descriptive study. First, a group of experts from diverse professions, disciplines and backgrounds (eg. medicine, engineering, implementation science, community and public health, shared decision making) identified relevant BCTs. Then we recruited pregnant women consulting for prenatal care in three clinical sites: a family medicine group, a birthing centre (midwives) and a hospital obstetrics department in Quebec City, Canada. To be eligible, participants had to be at least 18 years old, having recently given birth or at least 16 weeks pregnant with a low-risk pregnancy, and have already decided about prenatal screening. We conducted three focus groups and asked questions about the relevance and acceptability of the BCTs. We analysed verbatim transcripts and reduced the BCTs to those the women found most relevant and acceptable.ResultsOur group of experts identified 25 relevant BCTs relating to information, support, consequences, others’ approval, learning, reward, environmental change and mode of delivery. Fifteen women participated in the study with a mean age of 27 years. Of these, 67% (n = 10) were pregnant for the first time, 20% (n = 3) had difficulty making the decision to take the test, and 73% had made the decision with their partner. Of the 25 BCTs identified using the Behaviour Change Wheel, the women found the following 10 to be most acceptable and relevant: goal setting (behaviour), goal setting (results), problem solving, action plan, social support (general), social support (practical), restructuring the physical environment, prompts/cues, credible sources and modelling or demonstration of the behaviour.ConclusionsAn intervention to promote PtDA use among pregnant women for Down syndrome prenatal screening should incorporate the 10 BCTs identified.
Background Pregnant women often find it difficult to choose from among the wide variety of available prenatal screening options. To help pregnant women and their partners make informed decisions based on their values, needs, and preferences, a decision aid and a web-based shared decision making (SDM) training program for health professionals have been developed. In Canada, nurses provide maternity care and thus can train as decision coaches for prenatal screening. However, there is a knowledge gap about the effectiveness of SDM interventions in maternity care in nursing practice. Objective This study aims to assess the impact of an SDM training program on nurses’ intentions to use a decision aid for prenatal screening and on their knowledge and to assess their overall impressions of the training. Methods This is a 2-arm parallel randomized trial. French-speaking nurses working with pregnant women in the province of Quebec were recruited online by a private survey firm. They were randomly allocated (1:1 ratio) to either an experimental group, which completed a web-based SDM training program that included prenatal screening, or a control group, which completed a web-based training program focusing on prenatal screening alone. The experimental intervention consisted of a 3-hour web-based training hosted on the Université Laval platform with 4 modules: (1) SDM; (2) Down syndrome prenatal screening; (3) decision aids; and (4) communication between health care professionals and the patient. For the control group, the topic of SDM in Module 1 was replaced with “Context and history of prenatal screening,” and the topic of decision aids in Module 3 was replaced with “Consent in prenatal screening.” Participants completed a self-administered sociodemographic questionnaire with close-ended questions. We also assessed the participants' (1) intention to use a decision aid in prenatal screening clinical practice, (2) knowledge, (3) satisfaction with the training, (4) acceptability, and (5) perceived usefulness of the training. The randomization was done using a predetermined sequence and included 40 nurses. Participants and researchers were blinded. Intention to use a decision aid will be assessed by a t test. Bivariate and multivariate analysis will be performed to assess knowledge and overall impressions of the training. Results This study was funded in 2017 and approved by Genome Canada. Data were collected from September 2019 to late January 2020. This paper was initially submitted before data analysis began. Results are expected to be published in winter 2020. Conclusions Study results will inform us on the impact of an SDM training program on nurses’ intention to use and knowledge of decision aids for prenatal screening and their overall impressions of the training. Participant feedback will also inform an upgrade of the program, if needed. Trial Registration ClinicalTrials.gov NCT04162288; https://clinicaltrials.gov/ct2/show/NCT04162288 International Registered Report Identifier (IRRID) DERR1-10.2196/17878
Background Our team has developed a decision aid to help pregnant women and their partners make informed decisions about Down syndrome prenatal screening. However, the decision aid is not yet widely available in Quebec’s prenatal care pathways. Objective We sought to identify knowledge translation strategies and develop an implementation plan to promote the use of the decision aid in prenatal care services in Quebec, Canada. Methods Guided by the Knowledge-to-Action Framework and the Theoretical Domains Framework, we performed a synthesis of our research (11 publications) on prenatal screening in Quebec and on the decision aid. Two authors independently reviewed the 11 articles, extracted information, and mapped it onto the Knowledge-to-Action framework. Using participatory action research methods, we then recruited pregnant women, health professionals, managers of three prenatal care services, and researchers to (a) identify the different clinical pathways followed by pregnant women and (b) select knowledge translation strategies for a clinical implementation plan. Then, based on all the information gathered, the authors established a consensus on strategies to include in the plan. Results Our knowledge synthesis showed that pregnant women and their partners are not sufficiently involved in the decision-making process about prenatal screening and that there are numerous barriers and facilitators of the use of the decision aid in clinical practice (e.g., low intention to use it among health providers). Using a participatory action approach, we met with five pregnant women, three managers, and six health professionals. They informed us about three of Quebec’s prenatal care pathways and helped us identify 20 knowledge translation strategies (e.g., nurse discusses decision aid with women before they meet the doctor) to include in a clinical implementation plan. The research team reached a consensus about the clinical plan and also about broader organizational strategies, such as training healthcare providers in the use of the decision aid, monitoring its impact (e.g., measure decisional conflict) and sustaining its use (e.g., engage key stakeholders in the implementation process). Conclusion Next steps are to pilot our implementation plan while further identifying global strategies that target institutional, policy, and systemic supports for implementation.
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