Journal of Participatory Medicine最新文献

Background: Surgical ward rounds (SWRs) are typically led by doctors, with limited involvement from key participants, including patients, family members, and bedside nurses. Despite the potential benefits of a more collaborative and person-centered approach, efforts to engage these stakeholders remain rare.

Objective: This qualitative exploratory study examined the experiences and needs of doctors, nurses, patients, and their relatives during SWRs as part of a Participatory Design process.

Methods: Data were collected through ethnographic field studies, focus groups with the healthcare providers, patients and relatives, and dyadic interviews conducted as part of home visits to patients and their partners after discharge. Field notes and interview data were analyzed using systematic text condensation.

Results: Lack of organization, traditional roles, and cultural norms compromised the quality, efficiency, and user experience of SWRs in multiple ways. SWRs were routine-driven, treatment-focused, and received lower priority than surgical tasks. Unpredictability resulted in unprepared participants and limited access for nurses, patients, and relatives to partake.

Conclusions: The study identified a gap between the organizational and cultural frameworks governing the SWRs and the experiences and needs of key participants. Digital technologies were perceived as a potential solution to address some of these challenges.

Clinicaltrial:

Background: Diabetic foot ulcers are common and costly. Most cases are preventable, although few interventions exist to reliably support patients in performing self-care. Emerging technologies are showing promise in this domain, although patient and health care provider perspectives are rarely incorporated into digital intervention designs.

Objective: This study explored patient and health care provider feedback on a smart sensing sock to detect shear strain and alert the wearer to change their behavior (ie, pause activity and check their feet) and considered how patient experience and attitudes toward self-care are likely to impact uptake and long-term effective engagement with the device to curate guiding principles for successful future intervention development.

Methods: This qualitative study combined semistructured interviews and a focus group alongside a participant advisory group that was consulted throughout the study. In total, 20 people with diabetic neuropathy (n=16, 80% with history of diabetic foot ulcers) and 2 carers were recruited directly from podiatry clinics as well as via a recruitment network and national health mobile app for one-to-one interviews either in person or via landline or video call. A total of 6 podiatrists were recruited via professional networks for 1 virtual focus group. Participants were asked about their experience of diabetic foot health and for feedback on the proposed device, including how it might work for them in daily life or clinical practice. The data were analyzed thematically.

Results: Three main themes were generated, each raising a barrier to the use of the sock complemented by potential solutions: (1) patient buy-in-challenged by lack of awareness of risk and potentially addressed through using the device to collect and record evidence to enhance clinical messaging; (2) effective engagement-challenged by difficulties accepting and actioning information and requiring simple, specific, and supportive instructions in line with podiatrist advice; and (3) sustained use-challenged by difficulties coping, with the possibility to gain control through an early warning system.

Conclusions: While both patients and podiatrists were interested in the concept, it would need to be packaged as part of a wider health intervention to overcome barriers to uptake and longer-term effective engagement. This study recommends specific considerations for the framing of feedback messages and instructions as well as provision of support for health care providers to integrate the use of such smart devices into practice. The guiding principles generated by this study can orient future research and development of smart sensing devices for diabetic foot care to help optimize patient engagement and improve health outcomes.

Background: It remains unclear if there is agreement between physicians and patients on the definition of treatment success following orthopedic treatment. Clinical progress notes are generated during each health care encounter and include information on current disease symptoms, rehabilitation progress, and treatment outcomes.

Objective: This study aims to assess if physicians and patients agree on whether patient outcomes captured in clinical progress notes reflect a successful treatment outcome following orthopedic care.

Methods: We performed a cross-sectional analysis of a subset of clinical notes for patients presenting to a Level-1 Trauma Center and Regional Health System for follow-up for an acute proximal humerus fracture (PHF). This study was part of a larger study of 1000 patients with PHF receiving initial treatment between 2019 and 2021. From the full dataset of 1000 physician-labeled notes, a stratified random sample of 25 notes from each outcome label group was identified for this study. A group of 2 patients then reviewed the sample of 100 clinical notes and labeled each note as reflecting treatment success or failure. Cohen κ statistics were used to assess the degree of agreement between physicians and patients on clinical note content.

Results: The average age of the patients in the sample was 67 (SD 13) years and 82% of the notes came from female patients. Patients were primarily White (91%) and had Medicare insurance coverage (65%). The note sample came from fracture-related encounters ranging from the second to the tenth encounter after the index PHF visit. There were no significant differences in patient or visit characteristics across concordant and discordant notes labeled by physicians and patients. Among agreement levels ranging from poor to perfect agreement, physician and patient evaluators exhibited only a fair level of agreement in what they deemed as treatment success based on a Cohen κ of 0.32 (95% CI 0.10-0.55; P=.01). Furthermore, interpatient and interphysician agreement also demonstrated relatively low levels of agreement.

Conclusions: The findings suggest that physicians and patients demonstrated low levels of agreement when assessing whether a patient's clinical note reflected a successful outcome following treatment for a PHF. As low levels of agreement were also observed within physician and patient groups, it is clear the definition of success varied highly across both physicians and patients. Further research is needed to elucidate physician and patient perceptions of treatment success. As outcome measurement and demonstrating the value of orthopedic treatment remain important priorities, it is important to better define and reach a consensus on what treatment success means in orthopedic medicine.

Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.

Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population-centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it).

Methods: AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input.

Results: For Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention.

Conclusions: This study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions.

Linguistic accommodation refers to the process of adjusting one's language, speech, or communication style to match or adapt to that of others in a social interaction. It is known to be vital to effective health communication. Despite this evidence, there is little scientific guidance on how to design linguistically adapted health behavior interventions for diverse English-speaking populations. This study aims to document the strategies used to develop a culturally grounded cancer prevention intervention with the capabilities to linguistically accommodate to speakers of African American English (AAE). We describe the iterative process of developing a cancer prevention intervention with contributions of racially and linguistically diverse colleagues representing various community and institutional perspectives, including communication scientists, linguists, a community advisory board, professional voice talents, and institutional representatives for scientific integrity. We offer a detailed description of the successes and, in some cases, failures of strategies. Social stereotypes associated with AAE were prevalent at both institutional and community levels, resulting in unanticipated challenges and delays during intervention development. The diversity of linguistic, racial, and role identities within the message development team was integral to successfully addressing and identifying opportunities for process improvement. Language is a vital but often overlooked aspect of intervention development. Message designers should consider implicit social stereotypes that unintentionally shape linguistic choices. This study provides a novel overview of how various types of expertise and iterative message development processes contribute to successfully navigating cultural grounding when sensitive or stigmatized issues are salient.

Background: The global shift toward plant-based diets has been increasing, with more people making the transition for various reasons. In vulnerable subgroups such as older adults, the transition to plant-based diets deserves attention due to the potentially detrimental consequences of lower protein quantity and quality.

Objective: We aimed to develop a digital tool that ensures adequate protein quality in plant-based meals for older adults experiencing low protein intake through an interdisciplinary collaboration and user engagement with potential end users.

Methods: Three focus group interviews of Dutch and Danish dietitians and older adults as potential end users were conducted to identify their needs, preferences, and deal-breakers. Focus group interviews were based on a user-task-environment analysis, the Walt Disney method, the brainwriting method, and a cognitive walkthrough. The interview transcripts were analyzed with a thematic analysis. The front end and backend development of a potential tool took place in parallel and was well-synced to the focus group interviews.

Results: Both dietitians and older adults from Dutch and Danish sites expressed high interest in a tool that provides feedback and background information on protein quality, sustainability, and nutrients or micronutrients. The user-task-environment analysis delivered input among others that dietitians and older adults are good potential users, the tool should be functional as an app as well as a website and the tool should provide preprogrammed meals or recipes. The Walt Disney method delivered usable and realistic solutions to the 4 challenges presented. Thirty-two percent of the solutions on all themes presented with the brainwriting method appeared to be highly feasible and relevant, having the potential to be implemented in a tool. The cognitive walkthrough identified certain screens as unclear, necessitating revisions for improved understandability, for example, the need for explanation in selecting food item filters is shown in screenshot 2, with an overall usability score of 59%.

Conclusions: Our user engagement design approach resulted in a prototype that ensured end users' wishes and needs, with a finetuned output tested in focus groups. We conclude that our user engagement design approach was a suitable and meaningful stepwise approach to ensure the relevance of the tool and identify potential barriers. The focus group results indicate that dietitians have a clear understanding and need for a tool to aid in meal planning for enhanced protein quality, highlighting its absence in their current resources despite increasing demands arising from the protein transition. Conversely, for older adults, the introduction of a digital tool appears less appropriate; instead, there is a necessity for foundational education on protein quality before such a tool can be

Unlabelled: Participatory design is an increasingly common informatics method to engage intended audiences in the development of health-related resources. Participatory design is particularly helpful for developing information visualizations that aim to improve health outcomes by means of improved comprehension, communication or engagement, and subsequent behavior changes. Existing literature on participatory design lacks the practical details that influence the success of the method and does not address emergent issues, such as strategies to enhance internet-based data collection. In this tutorial, our objective is to provide practical guidance on how to prepare for, conduct, and analyze participatory design sessions for information visualization. The primary audience for this tutorial is research teams, but this guide is relevant for organizations and other health professionals looking to design visualizations for their patient populations, as they can use this guide as a procedural manual. This start-to-finish guide provides information on how to prepare for design sessions by setting objectives and applying theoretical foundations, planning design sessions to match project goals, conducting design sessions in different formats with varying populations, and carrying out effective analysis. We also address how the methods in this guide can be implemented in the context of resource constraints. This tutorial contains a glossary of relevant terms, pros and cons of variations in the type of design session, an informed consent template, a preparation checklist, a sample design session guide and selection of useful design session prompts, and examples of how surveys can supplement the design process.