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Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design.

ABSTRACT: PLAIN ENGLISH SUMMARY:For 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. ResultsCycle 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 it a "decision guide". Cycle 3: We developed French and English versions of the guide, readable at a primary school level. The elderly judged the guide as acceptable. Conclusion We developed a decision guide to support elderly people and their caregivers in decision making about location of care. This paper is one of few to report on a fully collaborative approach to decision guide development that involves end-users at every stage (caregivers and health administrators early on, the frail elderly in the final stages). The guide is currently being evaluated in a cluster randomized trial. Trial registration: NCT02244359.

SUBMITTER: Garvelink MM

PROVIDER: S-EPMC5611600 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design.

Garvelink Mirjam M MM Emond Julie J Menear Matthew M Brière Nathalie N Freitas Adriana A Boland Laura L Perez Maria Margarita Becerra MMB Blair Louisa L Stacey Dawn D Légaré France F

Research involvement and engagement 20160719

<h4>Plain english summary</h4>For 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 h ...[more]

PMID: 29062524

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Project description:BACKGROUND:Emergency departments (EDs) frequently care for individuals with opioid use disorder (OUD). Buprenorphine (BUP) is an effective treatment option for patients with OUD that can safely be initiated in the ED. At present, BUP is rarely initiated as a part of routine ED care. Clinical decision support (CDS) could accelerate adoption of ED-initiated BUP into routine emergency care. OBJECTIVE:This study aimed to design and formatively evaluate a user-centered decision support tool for ED initiation of BUP for patients with OUD. METHODS:User-centered design with iterative prototype development was used. Initial observations and interviews identified workflows and information needs. The design team and key stakeholders reviewed prototype designs to ensure accuracy. A total of 5 prototypes were evaluated and iteratively refined based on input from 26 attending and resident physicians. RESULTS:Early feedback identified concerns with the initial CDS design: an alert with several screens. The timing of the alert led to quick dismissal without using the tool. User feedback on subsequent iterations informed the development of a flexible tool to support clinicians with varied levels of experience with the intervention by providing both one-click options for direct activation of care pathways and user-activated support for critical decision points. The final design resolved challenging navigation issues through targeted placement, color, and design of the decision support modules and care pathways. In final testing, users expressed that the tool could be easily learned without training and was reasonable for use during routine emergency care. CONCLUSIONS:A user-centered design process helped designers to better understand users' needs for a Web-based clinical decision tool to support ED initiation of BUP for OUD. The process identified varying needs across user experience and familiarity with the protocol, leading to a flexible design supporting both direct care pathways and user-initiated decision support.

Project description:BackgroundRehabilitation technologies for people with stroke are rapidly evolving. These technologies have the potential to support higher volumes of rehabilitation to improve outcomes for people with stroke. Despite growing evidence of their efficacy, there is a lack of uptake and sustained use in stroke rehabilitation and a call for user-centered design approaches during technology design and development. This study focuses on a novel rehabilitation technology called exciteBCI, a complex neuromodulatory wearable technology in the prototype stage that augments locomotor rehabilitation for people with stroke. The exciteBCI consists of a brain computer interface, a muscle electrical stimulator, and a mobile app.ObjectiveThis study presents the evaluation phase of an iterative user-centered design approach supported by a qualitative descriptive methodology that sought to (1) explore users' perspectives and experiences of exciteBCI and how well it fits with rehabilitation, and (2) facilitate modifications to exciteBCI design features.MethodsThe iterative usability evaluation of exciteBCI was conducted in 2 phases. Phase 1 consisted of 3 sprint cycles consisting of single usability sessions with people with stroke (n=4) and physiotherapists (n=4). During their interactions with exciteBCI, participants used a "think-aloud" approach, followed by a semistructured interview. At the end of each sprint cycle, device requirements were gathered and the device was modified in preparation for the next cycle. Phase 2 focused on a "near-live" approach in which 2 people with stroke and 1 physiotherapist participated in a 3-week program of rehabilitation augmented by exciteBCI (n=3). Participants completed a semistructured interview at the end of the program. Data were analyzed from both phases using conventional content analysis.ResultsOverall, participants perceived and experienced exciteBCI positively, while providing guidance for iterative changes. Five interrelated themes were identified from the data: (1) "This is rehab" illustrated that participants viewed exciteBCI as having a good fit with rehabilitation practice; (2) "Getting the most out of rehab" highlighted that exciteBCI was perceived as a means to enhance rehabilitation through increased engagement and challenge; (3) "It is a tool not a therapist," revealed views that the technology could either enhance or disrupt the therapeutic relationship; and (4) "Weighing up the benefits versus the burden" and (5) "Don't make me look different" emphasized important design considerations related to device set-up, use, and social acceptability.ConclusionsThis study offers several important findings that can inform the design and implementation of rehabilitation technologies. These include (1) the design of rehabilitation technology should support the therapeutic relationship between the patient and therapist, (2) social acceptability is a design priority in rehabilitation technology but its importance varies depending on the use context, and (3) there is value in using design research methods that support understanding usability in the context of sustained use.

Project description:BackgroundChildren are at increased risk from transfusion-related medical errors. Clinical decision support (CDS) can enhance pediatric providers' decision-making regarding transfusion practices including indications, volume, rate, and special processing instructions. Our objective was to use CDS in a pediatric health system to reduce:blood product-related safety events from ordering errors;special processing ordering errors for patients with T-cell dysfunction, sickle cell disease (SCD), or thalassemia;transfusions administered faster than 5 mL/kg/h.Materials and methodsIn this single-center before and after quality improvement study, we evaluated how user-centered design of pediatric blood product orders influenced pediatric transfusion practices and outcomes. Safety events were identified through active and passive surveillance. Other clinically relevant outcomes were identified through electronic health record queries.ResultsBlood product-related safety events from ordering errors did not change significantly from the baseline period (6 events, 0.4 per month, from 1/1/2018-3/27/2019) to the intervention period (1 event, 0.1 per month, from 3/28/2019-12/31/2019; rate ratio: 0.27 [0.01-2.25]). Packed red blood cell (PRBC) and platelet orders for patients with T-cell dysfunction that did not specify irradiation decreased significantly from 488/12,359 (3.9%) to 204/6,711 (3.0%, risk ratio: 0.77 [0.66-0.90]). PRBC orders for patients with SCD or thalassemia that did not specify phenotypically similar units fell from 386/2,876 (13.4%) to 57/1,755 (3.2%, risk ratio: 0.24 [0.18-0.32]). Transfusions administered faster than 5 mL/kg/h decreased from 4,112/14,641 (28.1%) to 2,125/9,263 (22.9%, risk ratio: 0.82 [0.78-0.85]).DiscussionUser-centered design of CDS for pediatric blood product orders significantly reduced special processing ordering errors and inappropriate transfusion rates. Larger studies are needed to evaluate the impact on safety events.

Project description:BackgroundDespite the unprecedented performance of deep learning algorithms in clinical domains, full reviews of algorithmic predictions by human experts remain mandatory. Under these circumstances, artificial intelligence (AI) models are primarily designed as clinical decision support systems (CDSSs). However, from the perspective of clinical practitioners, the lack of clinical interpretability and user-centered interfaces hinders the adoption of these AI systems in practice.ObjectiveThis study aims to develop an AI-based CDSS for assisting polysomnographic technicians in reviewing AI-predicted sleep staging results. This study proposed and evaluated a CDSS that provides clinically sound explanations for AI predictions in a user-centered manner.MethodsOur study is based on a user-centered design framework for developing explanations in a CDSS that identifies why explanations are needed, what information should be contained in explanations, and how explanations can be provided in the CDSS. We conducted user interviews, user observation sessions, and an iterative design process to identify three key aspects for designing explanations in the CDSS. After constructing the CDSS, the tool was evaluated to investigate how the CDSS explanations helped technicians. We measured the accuracy of sleep staging and interrater reliability with macro-F1 and Cohen κ scores to assess quantitative improvements after our tool was adopted. We assessed qualitative improvements through participant interviews that established how participants perceived and used the tool.ResultsThe user study revealed that technicians desire explanations that are relevant to key electroencephalogram (EEG) patterns for sleep staging when assessing the correctness of AI predictions. Here, technicians wanted explanations that could be used to evaluate whether the AI models properly locate and use these patterns during prediction. On the basis of this, information that is closely related to sleep EEG patterns was formulated for the AI models. In the iterative design phase, we developed a different visualization strategy for each pattern based on how technicians interpreted the EEG recordings with these patterns during their workflows. Our evaluation study on 9 polysomnographic technicians quantitatively and qualitatively investigated the helpfulness of the tool. For technicians with <5 years of work experience, their quantitative sleep staging performance improved significantly from 56.75 to 60.59 with a P value of .05. Qualitatively, participants reported that the information provided effectively supported them, and they could develop notable adoption strategies for the tool.ConclusionsOur findings indicate that formulating clinical explanations for automated predictions using the information in the AI with a user-centered design process is an effective strategy for developing a CDSS for sleep staging.

Project description:BackgroundThis project engages patients and physicians in the development of Decision Boxes, short clinical topic summaries covering medical questions that have no single best answer. Decision Boxes aim to prepare the clinician to communicate the risks and benefits of the available options to the patient so they can make an informed decision together.MethodsSeven researchers (including four practicing family physicians) selected 10 clinical topics relevant to primary care practice through a Delphi survey. We then developed two one-page prototypes on two of these topics: prostate cancer screening with the prostate-specific antigen test, and prenatal screening for trisomy 21 with the serum integrated test. We presented the prototypes to purposeful samples of family physicians distributed in two focus groups, and patients distributed in four focus groups. We used the User Experience Honeycomb to explore barriers and facilitators to the communication design used in Decision Boxes. All discussions were transcribed, and three researchers proceeded to thematic content analysis of the transcriptions. The coding scheme was first developed from the Honeycomb's seven themes (valuable, usable, credible, useful, desirable, accessible, and findable), and included new themes suggested by the data. Prototypes were modified in light of our findings.ResultsThree rounds were necessary for a majority of researchers to select 10 clinical topics. Fifteen physicians and 33 patients participated in the focus groups. Following analyses, three sections were added to the Decision Boxes: introduction, patient counseling, and references. The information was spread to two pages to try to make the Decision Boxes less busy and improve users' first impression. To try to improve credibility, we gave more visibility to the research institutions involved in development. A statement on the boxes' purpose and a flow chart representing the shared decision-making process were added with the intent of clarifying the tool's purpose. Information about the risks and benefits according to risk levels was added to the Decision Boxes, to try to ease the adaptation of the information to individual patients.ConclusionResults will guide the development of the eight remaining Decision Boxes. A future study will evaluate the effect of Decision Boxes on the integration of evidence-based and shared decision making principles in clinical practice.

Project description:BackgroundTo achieve informed choice within the framework of reproductive autonomy, family planning programs have begun to adopt user-centered approaches to service provision, which highlight the individual client as the focal point of interaction and key decision maker. However, little is known about how user-centered approaches to family planning, particularly family planning counseling, shape contraceptive preferences and choices.ObjectiveWe conducted a multiarmed randomized controlled trial to identify the causal impact of user-centered approaches to family planning counseling on women's contraceptive decision making in urban Malawi. This study aims to determine how a tailored, preference-driven approach to family planning counseling and the involvement of male partners during the counseling process may contribute to shaping women's contraceptive preferences and choices.MethodsMarried women aged 18-35 years were recruited and randomly assigned to 1 of the 3 intervention arms or a control arm characterized by the following two interventions: an intervention arm in which women were encouraged to invite their husbands to family planning counseling (husband invitation arm) and an intervention arm in which women received targeted, tailored counseling on up to five contraceptive methods (as opposed to up to 13 contraceptive methods) that reflected women's stated preferences for contraceptive methods. Women were randomized into a control arm, T0 (no husband invitation, standard counseling); T1 (husband invitation, standard counseling); T2 (no husband invitation, targeted counseling); and T3 (husband invitation, targeted counseling). Following counseling, all women received a package of family planning services, which included free transportation to a local family planning clinic and financial reimbursement for family planning services. Follow-up surveys were conducted with women 1 month after counseling.ResultsA total of 785 women completed the baseline survey, and 782 eligible respondents were randomized to 1 of the 3 intervention groups or the control group (T1, n=223; T2, n=225; T3, n=228; T0, n=108). Furthermore, 98.1% (767/782) of women were contacted for follow-up. Among the 767 women who were contacted, 95.3% (731/767) completed the follow-up survey. The analysis of the primary outcomes is ongoing and is expected to be completed by the end of 2021.ConclusionsThe results from this trial will fill knowledge gaps on the effectiveness of tailored family planning counseling and male involvement in family planning on women's stated and realized contraceptive preferences. More generally, the study will provide evidence on how user-centered counseling may affect women's willingness to use and continue contraception to realize their contraceptive preferences.Trial registrationAmerican Economics Association's Registry for Randomized Controlled Trials AEARCTR-0004194; https://www.socialscienceregistry.org/trials/4194/history/46808. Registry for International Development Impact Evaluations RIDIE-STUDY-ID-5ce4f42bbc2bf; https://ridie.3ieimpact.org/index.php?r=search/detailView&id=823.International registered report identifier (irrid)DERR1-10.2196/24884.

Project description:BackgroundProviding patient-centered care requires that patients partner in their personal health-care decisions to the full extent desired. Patient decision aids facilitate processes of shared decision-making between patients and their clinicians by presenting relevant scientific information in balanced, understandable ways, helping clarify patients' goals, and guiding decision-making processes. Although international standards stipulate that patients and clinicians should be involved in decision aid development, little is known about how such involvement currently occurs, let alone best practices. This systematic review consisting of three interlinked subreviews seeks to describe current practices of user involvement in the development of patient decision aids, compare these to practices of user-centered design, and identify promising strategies.Methods/designA research team that includes patient and clinician representatives, decision aid developers, and systematic review method experts will guide this review according to the Cochrane Handbook and PRISMA reporting guidelines. A medical librarian will hand search key references and use a peer-reviewed search strategy to search MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore, and Google Scholar. We will identify articles across all languages and years describing the development or evaluation of a patient decision aid, or the application of user-centered design or human-centered design to tools intended for patient use. Two independent reviewers will assess article eligibility and extract data into a matrix using a structured pilot-tested form based on a conceptual framework of user-centered design. We will synthesize evidence to describe how research teams have included users in their development process and compare these practices to user-centered design methods. If data permit, we will develop a measure of the user-centeredness of development processes and identify practices that are likely to be optimal.DiscussionThis systematic review will provide evidence of current practices to inform approaches for involving patients and other stakeholders in the development of patient decision aids. We anticipate that the results will help move towards the establishment of best practices for the development of patient-centered tools and, in turn, help improve the experiences of people who face difficult health decisions.Systematic review registrationPROSPERO CRD42014013241.

Dataset Information

Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design.

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Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design.

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