Plain English summaryFor the elderly to get the care and services they need, they may need to make the difficult decision about staying in their home or moving to another home. Many other people may be involved in their care too (friends, family and healthcare providers), and can support them in making the decision. We asked informal caregivers of elderly people to help us develop a decision guide to support them and their loved ones in making this decision. This guide will be used by health providers in home care who are trained to help people make decisions. The guide is in French and English. To design and test this decision guide we involved elderly people, their caregivers and health administrators. We first asked them what they needed for making the decision, and then designed a first version of the guide. Then we asked them to look at it and give feedback, which was used to make the final version. We then used scientific criteria to check its content and the language used. The final decision guide was acceptable to the caregivers, their elderly loved ones, and the health administrators. The guide is currently being evaluated in a large research project with home care teams in the province of Quebec.Abstract Background As they grow older, many elderly people are faced with the difficult and preference-sensitive decision about staying in their home or moving to a residence better adapted to their evolving care needs. We aimed to develop an English and French decision aid (DA) for elderly people facing this decision, and to involve end-users in all phases of the development process. Methods A three-cycle design with involvement of end-users in Quebec. End-users were elderly people (n = 4) caregivers of the elderly (n = 5), health administrators involved in home-care service delivery or policy (n = 6) and an interprofessional research team (n = 19). Cycle 1: Decisional needs assessment and development of the first prototype based on existing tools and input from end-users; overview of reviews examining the impact of location of care on elderly people’s health outcomes. Cycle 2: Usability testing with end-users, adaptation of prototype. Cycle 3: Refinement of the prototype with a linguist, graphic designer and end-users. The final prototype underwent readability testing and an International Patient Decision Aids (IPDAS) criteria compatibility assessment to verify minimal requirements for decision aids and was tested for usability by the elderly. Results Cycle 1: We used the Ottawa Personal Decision Guide to design a first prototype. As the overview of reviews did not find definitive evidence regarding optimal locations of care for elderly people, we were not able to add evidence-based advantages and disadvantages to the guide. Cycle 2: Overall, the caregivers and health administrators who evaluated the prototype (n = 10) were positive. In response to their suggestions, we deleted some elements (overview of pros, cons, and consequences of the options) that were necessary to qualify the tool as a DA and renamed ...

We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors.

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.

The idea of shared decision making (SDM) between patient and physician grew out of a generalized challenge to traditional social hierarchies that occurred in the middle of the last century. Governments have espoused SDM, thousands of articles about it have been published, and evidence has shown that it improves some of the healthcare processes as well as patient outcomes. Yet it has not been widely adopted. From their cross-disciplinary perspective (practical theology and clinical medicine), the authors locate this reluctance in the unfolding of scientific paradigm shifts, summarize the perceived risks and benefits of SDM and the evidence for each, and suggest practical, achievable approaches for clinicians. Finally, they explore some important emerging territories for SDM. Key Points for Decision MakersShared decision making (SDM) has proved its worth and is achievable … but debates continue.Several validated models are available right now for use in clinical practice.People can and are being successfully trained in SDM.SDM is needed to address emerging value-laden clinical decisions such as those about caring for the elderly and about genetic testing.

BackgroundSeniors with loss of autonomy may face decisions about whether they should stay at home or move elsewhere. Most seniors would prefer to stay home and be independent for as long as possible, but most are unaware of options that would make this possible.ObjectiveThe study aimed to develop and test the acceptability of an interactive website for seniors, their caregivers, and health professionals with short interlinked videos presenting information about options for staying independent at home.MethodsThe approach for design and data collection varied, involving a multipronged, user-centered design of the development process, qualitative interviews, and end-user feedback to determine content (ie, needs assessment) in phase I; module development (in English and French) in phase II; and survey to test usability and acceptability with end users in phase III. Phase I participants were a convenience sample of end users, that is, seniors, caregivers, and professionals with expertise in modifiable factors (eg, day centers, home redesign, equipment, community activities, and finances), enabling seniors to stay independent at home for longer in Quebec and Alberta, Canada. Phase II participants were bilingual actors; phase III participants included phase I participants and new participants recruited through snowballing. Qualitative interviews were thematically analyzed in phase II to determine relevant topics for the video-scripts, which were user-checked by interview participants. In phase III, the results of a usability questionnaire were analyzed using descriptive statistics.ResultsIn phase I, interviews with 29 stakeholders, including 4 seniors, 3 caregivers, and 22 professionals, showed a need for a one-stop information resource about options for staying independent at home. They raised issues relating to 6 categories: cognitive autonomy, psychological or mental well-being, functional autonomy, social autonomy, financial autonomy, and people involved. A script was developed and evaluated by participants. In phase II, after 4 days in a studio with 15 bilingual actors, 30 videos were made of various experts (eg, family doctor, home care nurse, and social worker) presenting options and guidance for the decision-making process. These were integrated into an interactive website, which included a comments tool for visitors to add information. In phase III (n=21), 8 seniors (7 women, mean age 75 years), 7 caregivers, and 6 professionals evaluated the acceptability of the module and suggested improvements. Clarity of the videos scored 3.6 out of 4, length was considered right by 17 (separate videos) and 13 participants (all videos together), and 18 participants considered the module acceptable. They suggested that information should be tailored more, and that seniors may need someone to help navigate it.ConclusionsOur interactive website with interlinked videos presenting information about options for staying independent at home was deemed acceptable and potentially helpful by a diverse group of stakeholders.

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BackgroundUpon admission to an intensive care unit (ICU), all patients should discuss their goals of care and express their wishes concerning life-sustaining interventions (e.g., cardiopulmonary resuscitation (CPR)). Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients.ObjectivesTo adapt an existing decision aid about CPR to create a wiki-based decision aid individually adapted to each patient’s risk factors; and to document the use of a wiki platform for this purpose.MethodsWe conducted three weeks of ethnographic observation in our ICU to observe intensivists and patients discussing goals of care and to identify their needs regarding decision making. We interviewed intensivists individually. Then we conducted three rounds of rapid prototyping involving 15 patients and 11 health professionals. We recorded and analyzed all discussions, interviews and comments, and collected sociodemographic data. Using a wiki, a website that allows multiple users to contribute or edit content, we adapted the decision aid accordingly and added the Good Outcome Following Attempted Resuscitation (GO-FAR) prediction rule calculator.ResultsWe added discussion of invasive mechanical ventilation. The final decision aid comprises values clarification, risks and benefits of CPR and invasive mechanical ventilation, statistics about CPR, and a synthesis section. We added the GO-FAR prediction calculator as an online adjunct to the decision aid. Although three rounds of rapid prototyping simplified the information in the decision aid, 60% (n = 3/5) of the patients involved in the last cycle still did not understand its purpose.ConclusionsWikis and user-centered design can be used to adapt decision aids to users’ needs and local contexts. Our wiki platform allows other centers to adapt our tools, reducing duplication and accelerating scale-up. Physicians need training in shared decision making skills about goals of care and in using the decision aid. A video version of the decision aid could clarify its purpose.

Consideration of sex and gender in research and clinical practice is necessary to redress health inequities and reduce knowledge gaps. As all health professionals must maintain and update their skills throughout their career, developing innovative continuing professional education programs that integrate sex and gender issues holds great promise for reducing these gaps. This article proposes new approaches to partnership, team development, pedagogical theory, content development, evaluation and data management that will advance the integration of sex and gender in continuing professional development (CPD). Our perspectives build on an intersectoral and interprofessional research team that includes several perspectives, including those of CPD, health systems, knowledge translation and sex and gender.