Journal of Participatory Medicine最新文献

Background: Recovery colleges are service user-led educational interventions aiming at empowering people with mental health issues and promoting recovery through peer learning. Despite the increasing interest in recovery colleges in recent years and the demonstrated beneficial effects for users, there is limited research addressing aspects that influence their implementation. This knowledge is necessary for the successful integration of such interventions in various contexts.

Objective: This study aims to explore factors that influence the implementation of a recovery college embedded within a Swedish psychiatry organization.

Methods: A qualitative case study of a recovery college based on semistructured interviews with 8 course participants, 4 course leaders, and 4 clinical staff was conducted. The transcripts were scrutinized with conventional content analysis, and the interpretation of results was guided by the Consolidated Framework for Implementation Research.

Results: The findings highlight key areas that either hinder or promote the successful implementation of the recovery college. These areas included recruitment, resources, staff attitudes, and ways of organizing courses. Each area has elements that appear both as facilitators and barriers, demonstrating the duality of conditions.

Conclusions: Allocating dedicated resources, engaging individuals with service user experience as organizers who are willing to share their personal experience, having an open-door policy, creating an open space for participants to share their experiences, and offering practical advice and written material are useful to create favorable conditions for a recovery college to reach its goals of empowering psychiatry service users.

Background: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.

Objective: This review aims to synthesize the evidence on public involvement and engagement in big data research.

Methods: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review.

Results: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research.

Conclusions: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research.

International registered report identifier (irrid): RR2-https://doi.org/10.1136/bmjopen-2021-050167.

Background: Chlamydia remains prevalent worldwide and is considered a global public health problem. However, testing rates among young sexually active people remain low. Effective clinical management relies on screening asymptomatic patients. However, attending face-to-face consultations of testing for sexually transmitted infections is associated with stigmatization and anxiety. Self-testing technology (STT) allows patients to test themselves for chlamydia and gonorrhea without the presence of health care professionals. This may result in wider access to testing and increase testing uptake. Therefore, the sexual health clinic at Odense University Hospital has designed and developed a technology that allows patients to get tested at the clinic through self-collected sampling without a face-to-face consultation.

Objective: This study aimed to (1) pilot-test STT used in clinical practice and (2) investigate the experiences of patients who have completed a self-test for chlamydia and gonorrhea.

Methods: The study was conducted as a qualitative study inspired by the methodology of participatory design. Ethnographic methods were applied in the feasibility study and the data analyzed were inspired by the action research spiral in iterative processes using steps, such as plan, act, observe, and reflect. The qualitative evaluation study used semistructured interviews and data were analyzed using a qualitative 3-level analytical model.

Results: The findings from the feasibility study, such as lack of signposting and adequate information, led to the final modifications of the self-test technology and made it possible to implement it in clinical practice. The qualitative evaluation study found that self-testing was seen as more appealing than testing at a face-to-face consultation because it was an easy solution that both saved time and allowed for the freedom to plan the visit independently. Security was experienced when the instructions balanced between being detail-oriented while also being simple and illustrative. The anonymity and discretion contributed to preserving privacy and removed the fear of an awkward conversation or being judged by health care professionals thus leading to the reduction of intrusive feelings.

Conclusions: Accessible health care services are crucial in preventing and reducing the impact of sexually transmitted infections and STT may have the potential to increase testing uptake as it takes into account some of the barriers that exist. The pilot test and evaluation have resulted in a fully functioning implementation of STT in clinical practice.

Background: Children with medical complexity (CMC) represent a heterogeneous group of children with multiple, chronic healthcare conditions. Caregivers of CMC experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The economic impacts of caregiving are yet understudied in the CMC context. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease because they lack direct caregiver voice and context of caregiving activities and existing methods have been noted to be ableist.

Objective: The purpose of this study was to explore the economic spillover impacts of caregiving among families of CMC using their own words and perspectives with the intent of expanding caregiver-centered perspectives when developing economic models.

Methods: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of CMC and their social networks. Caregivers of CMC were recruited through a Pediatric Complex Care clinic at an academic medical center in the mid-Atlantic region, USA. This study used inductive qualitative descriptive methods and the use of a template to define features of the person impacted and to define the economic construct as either a direct or indirect/spillover cost.

Results: Twenty caregivers were included in this study. Perspectives from the caregivers of CMC revealed several key themes: (1) time investment in caregiving - impacting the primary caregivers; (2) physical and mental health impacts - impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care - impacting the child themselves, siblings, and the primary caregivers; (4) impacts to the social network/social capital.

Conclusions: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of CMC. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive.

Clinicaltrial: n/a.

International registered report: RR2-10.2196/14810.

Background: Challenging encounters in health care professions, including in dentistry, are relatively common. Challenging encounters can be defined as stressful or emotional situations involving patients that could impact both treatment outcomes and patients' experiences. Through written web-based reviews, patients can share their experiences with health care providers, and these posts can be a useful source for investigating patient satisfaction and their experiences of challenging encounters.

Objective: This study aims to identify dominant themes from patient-written, web-based reviews of dentists and investigate how these themes are related to patient satisfaction with dental treatment.

Methods: The study data consisted of 11,764 reviews written by dental patients, which included 1- to 5-star ratings on overall satisfaction and free-text comments. The free-text comments were analyzed using Linguistic Inquiry and Word Count software, and the meaning extraction method was used to group words into thematic categories. These themes were used as variables in a multilevel logistic regression analysis to predict patient satisfaction.

Results: Eight themes emerged from the analyses, of which 6 (75%)-explanation (odds ratio [OR] 2.56, 95% CI 2.16-3.04; P<.001), assurance (OR 3.61, 95% CI 2.57-5.06; P<.001), performance assessment (OR 2.17, 95% CI 1.84-2.55; P<.001), professional advice (OR 1.81, 95% CI 1.55-2.13; P<.001), facilities (OR 1.78, 95% CI 1.08-2.91; P=.02), and recommendation (OR 1.31, 95% CI 1.12-1.53; P<.001)-increased the odds of high patient satisfaction. The remaining themes (2/8, 25%)-consequences of treatment need (OR 0.24, 95% CI 0.20-0.29; P<.001) and patient-centered care (OR 0.62, 95% CI 0.52-0.74; P<.001)-reduced the odds of high patient satisfaction.

Conclusions: The meaning extraction method is an interesting approach to explore patients' written accounts of encounters with dental health professionals. The experiences described by patients provide insight into key elements related to patient satisfaction that can be used in the education of dental health professionals and to improve the provision of dental health services.

Background: Patient-accessible electronic health records (PAEHRs) are assumed to enhance the quality of care, expressed in terms of safety, effectiveness, timeliness, person centeredness, efficiency, and equity. However, research on the impact of PAEHRs on the perceived quality of care among parents, children, and adolescents is largely lacking. In the Netherlands, a PAEHR (Iuvenelis) was developed for preventive child health care and youth care. Parents and adolescents had access to its full content, could manage appointments, ask questions, and comment on written reports.

Objective: This study aims to assess whether and how using this PAEHR contributes to perceived quality of care from a client's perspective.

Methods: We chose a qualitative design with a phenomenological approach to explore how parents and adolescents perceived the impact of using a PAEHR on quality of care. In-depth interviews that simultaneously included 1 to 3 people were conducted in 2021. In total, 20 participants were included in the study, representing parents and adolescents, both sexes, different educational levels, different native countries, and all participating municipalities. Within this group, 7 of 13 (54%) parents had not previously been informed about the existence of a client portal. Their expectations of using the client portal, in relation to quality of care, were discussed after a demonstration of the portal.

Results: Parents and adolescents perceived that using Iuvenelis contributed to the quality of care because they felt better informed and more involved in the care process than before the introduction of Iuvenelis. Moreover, they experienced more control over their health data, faster and simpler access to their health information, and found it easier to manage appointments or ask questions at their convenience. Parents from a migratory background, among whom 6 of 7 (86%) had not previously been informed about the portal, expected that portal access would enhance their understanding of and control over their care processes. The parents expressed concerns about equity because parents from a migratory background might have less access to the service. Nevertheless, portal usability was regarded as high. Furthermore, both parents and adolescents saw room for improvement in the broader interdisciplinary use of Iuvenelis and the quality of reporting.

Conclusions: Using Iuvenelis can contribute to the client-experienced quality of care, more specifically to perceived person centeredness, timeliness, safety, efficiency, and integration of care. However, some quality aspects, such as equity, still need addressing. In general, client information about the portal needs to be improved, specifically focusing on people in vulnerable circumstances, such as those from migratory backgrounds. In addition, to maximize the potential benefit of using Iuvenelis, st

Background: Effective primary care necessitates follow-up actions by the patient beyond the visit. Prior research suggests room for improvement in patient adherence.

Objective: This study sought to understand patients' views on their primary care visits, the plans generated therein, and their self-reported adherence after 3 months.

Methods: As part of a large multisite cluster randomized pragmatic trial in 3 health care organizations, patients completed 2 surveys-the first within 7 days after the index primary care visit and another 3 months later. For this analysis of secondary outcomes, we combined the results across all study participants to understand patient adherence to care plans. We recorded patient characteristics and survey responses. Cross-tabulation and chi-square statistics were used to examine bivariate associations, adjusting for multiple comparisons when appropriate. We used multivariable logistic regression to assess how patients' intention to follow, agreement, and understanding of their plans impacted their plan adherence, allowing for differences in individual characteristics. Qualitative content analysis was conducted to characterize the patient's self-reported plans and reasons for adhering (or not) to the plan 3 months later.

Results: Of 2555 patients, most selected the top box option (9=definitely agree) that they felt they had a clear plan (n=2011, 78%), agreed with the plan (n=2049, 80%), and intended to follow the plan (n=2108, 83%) discussed with their provider at the primary care visit. The most common elements of the plans reported included reference to exercise (n=359, 14.1%), testing (laboratory, imaging, etc; n=328, 12.8%), diet (n=296, 11.6%), and initiation or adjustment of medications; (n=284, 11.1%). Patients who strongly agreed that they had a clear plan, agreed with the plan, and intended to follow the plan were all more likely to report plan completion 3 months later (P<.001) than those providing less positive ratings. Patients who reported plans related to following up with the primary care provider (P=.008) to initiate or adjust medications (P≤.001) and to have a specialist visit were more likely to report that they had completely followed the plan (P=.003). Adjusting for demographic variables, patients who indicated intent to follow their plan were more likely to follow-through 3 months later (P<.001). Patients' reasons for completely following the plan were mainly that the plan was clear (n=1114, 69.5%), consistent with what mattered (n=1060, 66.1%), and they were determined to carry through with the plan (n=887, 53.3%). The most common reasons for not following the plan were lack of time (n=217, 22.8%), having decided to try a different approach (n=105, 11%), and the COVID-19 pandemic impacted the plan (n=105, 11%).

Conclusions: Patients' initial assessment of their plan as clear, their agree

Background: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire ("We would like to know you") consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement.

Objective: The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability.

Methods: We conducted a qualitative, retrospective content analysis of patients' answers using NVivo Pro (QSR International). The questionnaire was used in the outpatient neuro-oncology department of a Dutch academic hospital.

Results: Of 374 invited patients, 78 (20.9%) completed the questionnaire. We selected a sample of 42 (54%) of the 78 patients. Patients used a median of 16 (IQR 7-27) words per question, and most answers were easily interpretable. When asked about important activities, social activities, sports, or maintaining a normal life were most frequently mentioned. Patients wrote about fear of the disease, its possible influence on life, or fear of the future in general. Patients wanted HCPs to know about their care and communication preferences or shared personal information. They formulated expectations about effective treatment, communication, and the care process.

Conclusions: The questionnaire seems usable because patients provide interpretable answers that take little time to read, which HCPs can use to personalize care. Our study shows the potential of the questionnaire to help deliver PCC.

Background: Over the past decade, a growing body of scientific evidence has demonstrated that community engagement in research leads to more relevant research, enhances the uptake of research findings, and improves clinical outcomes. Despite the increasing need for the integration of community engagement methodologies into the scientific inquiry, doctoral and master's level competencies in the field of psychiatry often lack dedicated training or coursework on community engagement methodologies.

Objective: A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months.

Methods: A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months.

Results: The pilot study demonstrated that a 3-month remote training on community-based participatory research ("Partnership Academy") was deemed feasible and acceptable by service users, peer support specialists, caregivers of people with mental health challenges, and scientists. Improvements were found in research engagement and the quality of partnership. A marked increase in distrust in the medical system was also found. Groups submitted 4 grant applications and published 1 peer-reviewed journal at a 3-month follow-up.

Conclusions: This pre- and postpilot study demonstrated it is possible to train groups of service users, peer support specialists, caregivers of people with mental health challenges, and scientists in community-based participatory research. These findings provide preliminary evidence that a 3-month remote training on community-based participatory research ("Partnership Academy") is feasible, acceptable, and potentially associated with improvements in research engagement as well as the quality of partnership and output, such as manuscripts and grant applications.