Comparison of participation in out-of-school activities, activity preferences and quality of life of children with cerebral palsy and typical development.

The aim of this correlational study was to compare the participation in out of school activities, activity preferences, and quality of life (QoL) of children between 8 and 12 years of age with cerebral palsy (CP) (n = 30) and typical development (n = 60) in Turkey. Outcome measures included the Children's Assessment of Participation and Enjoyment, Preferences for Activity of Children, and the Health-Related Quality of Life Questionnaire. Results suggest children with CP were at a disadvantage compared to their typically developing peers in participating in out-of-school activities, however they tended to report greater preference for these activities than their typically developing peers. Based on these findings, we recommended health professionals aim to increase the quality of life for clients with CP by including social participation as one component of rehabilitation.

The development of the Life Participation Approach to Aphasia knowledge scale and contribution to its validation.

PURPOSE: The Life Participation Approach to Aphasia (LPAA) supports the notion of personalized intervention for individuals who are affected by aphasia. However, knowledge about LPAA among speech-language therapists (SLTs), professionals who support the communication rehabilitation of people with aphasia, is unknown. SLTs with an established understanding of LPAA may be more likely to apply the approach in their practices. However, there is a lack of valid and reliable tools to measure SLTs' knowledge about LPAA. We developed and evaluated the validity and reliability of a new tool to assess SLTs' knowledge of the LPAA. MATERIALS AND METHODS: An initial scale was constructed and validated by a panel of LPAA experts. The scale was revised based on the recommendations from the panel. A total of 59 SLT participants completed the revised version on the Qualtrics Online Survey Platform. RESULTS: The scale achieved a Cronbach's alpha value of 0.73. The deletion of two items increased the alpha value to 0.80 and raised the total accuracy score. CONCLUSIONS: The LPAA Knowledge Scale is a valid tool with good internal consistency to measure the knowledge of SLTs about the LPAA. This scale may be used to evaluate the effectiveness of LPAA training for SLTs, as well as a self-assessment tool for SLTs to reflect on the application of LPAA in their practices.

The Life Participation Approach to Aphasia (LPAA) highlights the need to focus aphasia intervention on the life experiences of individuals who are affected by aphasia.A solid understanding of the LPAA concepts may encourage speech-language therapists (SLTs) to apply its values when working with individuals who are affected by aphasia.The LPAA Knowledge Scale is a valid tool to evaluate the level of understanding about LPAA among SLTs.

Associations of caring for grandchildren and great-grandparents with depressive symptoms and life satisfaction in Chinese grandparents: The moderating roles of urban-rural residence and social participation.

This study aims to investigate the associations of caring for grandchildren and/or great-grandparents with depressive symptoms, as well as life satisfaction in Chinese grandparents, and analyze the moderating roles of urban-rural residence and social participation. A nationally representative sample of 2973 grandparents in families with great-grandparents and grandchildren were selected from the 2018 China Health and Retirement Longitudinal Study (CHARLS). The Center for Epidemiologic Studies Depression (CESD-10) and the single-item were used to measure depressive symptoms and life satisfaction. Social participation included participation in social and intellectual activities. The binary logistic regression model was employed to explore the relationship between caring and depressive symptoms, as well as life satisfaction in the whole participants, different urban-rural residence, and social participation groups, respectively. Caring was associated with depressive symptoms and life satisfaction (p < 0.05). A significant interaction existed between caring and urban-rural residence for depressive symptoms (interaction p = 0.029) and life satisfaction (interaction p = 0.027). Significant interactions were also found among caring, urban-rural residence, and social activities with depressive symptoms (interaction p = 0.025). In urban, caring for both was negatively related to depressive symptoms for the non-social activists, while in rural, caring for great-grandparents was positively associated with depressive symptoms for social activists (p < 0.05). Any new policy design related to preventing and reducing the possibility of mental disorders in Chinese grandparents should be tailored to heterogeneous subgroups who live in different rural-urban and social activities participation.

Occupational Participation Among Older Adults During the COVID-19 Pandemic.

Background. The COVID-19 pandemic led to abrupt occupational disruption for all people. However, some populations, like older adults, were disproportionately impacted particularly in the earlier waves. Purpose. The purpose of this study was to explore and understand how the occupational participation of community-dwelling older adults was experienced during the COVID-19 pandemic, using the Canadian Model of Occupational Participation (CanMOP) to contextualize findings. Method. Sixty-seven older adults participated in semi-structured interviews from September 2020 to May 2021, 37 of which also participated in a follow-up interview one-year later. Findings. Using reflexive thematic analysis, four themes were generated: (1) experiences of loss are complex and layered for older adults, (2) technology as a medium for occupational participation, (3) risk perception influences return to occupation, and (4) age-related challenges for older adults resuming volunteer work. Conclusion. Increasing frequency and severity of influenza pandemics and other disasters are a global concern, and OTs can use their skillsets to foster participation and expand occupational possibilities for older adults. The CanMOP was a helpful tool to understand the nuances underlying the participation of older adults in this context.

Views of research ethics committee members on end-of-participation communications for trial participants who stop taking part: a cross-sectional survey study.

BACKGROUND: Giving information to trial participants who stop taking part could support them through what can be a difficult process. We previously developed guidance around the ethical acceptability of such information provision, and about how trialists can develop suitable communication materials. There is limited evidence about what research ethics committees think of this issue, and limited guidance about what level of oversight they should have over the proposed communications, or post-consent participant communications generally. We conducted a survey of UK ethics committee members to address these points. METHODS: The survey was co-developed by public contributors and trialists who had previously worked together on the communications guidance. We asked respondents if they agreed with the general idea of informing participants who stop taking part, if they had ever been requested to review similar communications, and what level of ethics committee review they might recommend. The survey was primarily conducted online. It was reviewed by three ethics committee members before finalisation and shared directly with all UK ethics committee members. We analysed quantitative questions descriptively and used inductive analysis for open questions to identify common themes. RESULTS: Ninety-one ethics committee members participated (nearly 10% of all UK members). The sample was similar to reported data about all members in terms of several personal characteristics. Most respondents (83%) agreed with our project's rationale. Only 23% of respondents reported having been asked to review an end-of-participation information sheet before. Respondents gave various answers about the level of ethics committee review required, but most supported a relatively proportionate review process. Common concerns were about the risk of coercion or making participants feel pressured. CONCLUSIONS: Our survey suggests that ethics committee members generally support providing information to trial participants who stop taking part, if risks to participants are mitigated. We believe our guidance already addresses the main concerns raised. Our respondents' lack of prior experience with end-of-participation information sheets suggests that participants are not getting information they want or need when they stop participating. Our results help clarify how ethics committee should oversee post-consent participant communications, but further guidance from research regulators could be helpful.

Testing home-based exercise strategies in underserved minority cancer patients undergoing chemotherapy (THRIVE) trial: a study protocol.

Background: Higher rates of physical inactivity and comorbid conditions are reported in Hispanic/Latinx and Black cancer patients receiving chemotherapy compared to their White counterparts. Despite the beneficial effect of exercise training for cancer patients, rates of participation in exercise oncology clinical trials are low among disadvantaged and racial and ethnic minority groups. Here, we will examine the effect of an exercise intervention using a novel, accessible, and cost-effective home-based exercise approach among Hispanic/Latinx and Black cancer patients receiving chemotherapy on exercise participation and cardiovascular disease risk. Methods: The THRIVE trial is an 8-month prospective, three-arm study of 45 patients who are randomized in a 1:1:1 fashion to a supervised exercise intervention (SUP), unsupervised exercise (UNSUP), or an attention control (AC) group. Eligible patients include those with breast, colorectal, or prostate cancer, who are sedentary, overweight or obese, self-identify as Hispanic/Latinx or Black, and plan to receive chemotherapy. Patients randomized to the SUP group participate in a home-based 16-week periodized aerobic and resistance exercise program performed three days per week, supervised through video conference technology. Patients randomized to the UNSUP group participate in an unsupervised 16-week, telehealth-based, periodized aerobic and resistance exercise program performed three days per week using the same exercise prescription parameters as the SUP group. Patients randomized to the AC group receive a 16-week home-based stretching program. The primary outcome is changes in minutes of physical activity assessed by 7-day accelerometry at post-intervention. Secondary outcomes include cardiovascular risk factors, patient-reported outcomes, and physical function. Outcome measures are tested at baseline, post-intervention at month 4, and after a non-intervention follow-up period at month 8. Discussion: The THRIVE trial is the first study to employ a novel and potentially achievable exercise intervention for a minority population receiving chemotherapy. In addition, this study utilizes an intervention approach to investigate the biological and behavioral mechanisms underlying exercise participation in these cancer patients. Results will guide and inform large randomized controlled trials to test the effect of home-based exercise on treatment outcomes and comorbid disease risk in minority patients with cancer undergoing chemotherapy. Clinical trial registration: https://classic.clinicaltrials.gov/ct2/show/NCT05327452, identifier (NCT#05327452).

Association between different patterns of social participation and loneliness among the Chinese older people: is there a local-migrant gap?

BACKGROUND: Little empirical evidences were provided on the disparity in the level of loneliness between the migrant older with children (MOC) and their local counterpart in China. This study aimed to explore the association between social participation and loneliness and verify whether there was a local-migrant difference in this association. METHODS: A total of 1332 older people (60 +) were included in this study with 656 MOC and 676 natives. Loneliness was assessed by the University of California Los Angeles Loneliness Scale with eight items (ULS-8). Social participation was evaluated by three kinds of social activities concerning sports activities, hobby activities and community resident interaction. Univariate analysis was conducted to compare the local-migrant disparity as well as the level of loneliness between different subgroups. Hierarchical multiple linear regression analysis was used to examine the proposed relationship and the moderating influence of migration status. RESULTS: The average ULS-8 scores were 11.73 ± 4.02 for local subjects and 12.82 ± 4.05 for MOC respectively, indicating a lower level of loneliness among local older people. Participating in hobby activities (ß = -0.092, P = 0.003) and interacting with residents (ß = -0.216, P = 0.001) more frequently were related to lower level of loneliness while participating in square dancing was related to higher level of loneliness (ß = 0.087, P = 0.001). The negative relationships between hobby activities as well as resident interaction and loneliness were more profound in migrants than natives. CONCLUSIONS: Only two types of social participation could help alleviate loneliness. More attention to older migrants' loneliness and extending the scale and types of social activities were recommended for policymakers.

A qualitative study of nurse participation in global health in the English NHS: participation, interest, and barriers to participation.

BACKGROUND: Nurses contribute to the largest demographic of the healthcare workforce. However, given current global shortages of workforce capacity, this often leads to limited capacity to engage in extracurricular educational developments beyond their immediate role. Consequently, this significantly limits the range of workforce training and development opportunities that are available to them, which could enhance the variety of skills that are brought to the National Health Service (NHS). OBJECTIVE: We aimed to understand prior, current, and future participation in global health activities such as global health conferences, networks, and placements, among National Health Service (NHS) staff. Furthermore, we investigated the barriers and facilitators to participation in global health activities for nurses in our sample. METHOD: Qualitative and quantitative data was gathered from an online survey conducted in England from July to November 2021. Thematic analysis was used to examine the qualitative data collected from one open-ended question, whereas statistical analysis was used to examine the remaining quantitative data. RESULTS: Most (84%) nurses in our sample had not participated in a global health activity. Our results highlighted three barriers to participation, including insufficient communication, a lack of awareness, and capacity issues. CONCLUSION: This study showed that, despite low levels of prior participation, there is a strong desire among surveyed nurses to be involved in global health activities and education. Our findings also suggest that enhanced communication of opportunities available is needed, in addition to organisational support which incorporates strategies to overcome capacity constraints.

To participate or not to participate? Influence mechanism of artificial intelligence on Chinese college students' willingness to participate in online politics.

This study probes the mechanism of artificial intelligence's (AI's) influence on Chinese college students' willingness to participate in online politics and constructs a theoretical model based on the theory of planned behavior. Through the analysis of questionnaire data acquired from up to 317 Chinese college students in total, it turns out that the use of AI affects Chinese college students' willingness to the participation of online political practice significantly and positively, and such online political participation cognition of Chinese college students plays a mediating role, three aspects of which included as the followings on behavioral attitudes, subjective norms, and perceived behavioral control. Additionly, media literacy level plays a moderating role in online political participation cognition and willingness to participate. All the findings highlight the importance of optimizing the online political participation environment, enhancing college students' cognition of political participation, and improving media literacy in the context of the digital era, which provides practical guidance for promoting healthy and positive online political participation among college students.

Ethical challenges in qualitative sociology: a systematic literature review.

Qualitative researchers often encounter ethical challenges during their research process. Due to the large number of papers in which researchers reflect on specific and various ethical challenges within their projects, it proves difficult to keep track of them. To capture these reflexive practices, we conducted a literature review of 72 papers in sociology. Our review shows who reflects on research ethics and when and where such reflections occur. We identify 11 ethical issues that sociologists reflect on. Some issues address the challenges of implementing established ethical principles, such as (1) informed consent, (2) voluntary participation, (3) avoiding harm, (4) anonymization, and (5) confidentiality. Others go beyond these principles and refer to (6) the relationship between researchers and participants, (7) power asymmetries, (8) protecting yourself as a researcher, (9) deviant actions, (10) covert research, and (11) leaving the field. Our findings help researchers gain an overview of ethical challenges, enhancing their reflexivity.

The impact of social participation on the quality of life among older adults in China: a chain mediation analysis of loneliness, depression, and anxiety.

This cross-sectional study investigates the impact of social participation on the quality of life (QOL) among older adults in China. Using convenience sampling, data were collected from 508 individuals aged 60 and above (M_age = 70.53 ± 7.90 years; 56.5% women). Statistical analyses were conducted using SPSSAU software, including Pearson correlation analysis to assess relationships between social participation, psychological health indicators (loneliness, depression, and anxiety), and QOL. Multiple regression analysis and chain mediation analysis were subsequently performed to explore the mediating effects of loneliness, depression, and anxiety on the relationship between social participation and QOL. The results indicated significant correlations between social participation and loneliness (r = -0.313, p < 0.001), depression (r = -0.487, p < 0.001), anxiety (r = -0.305, p < 0.001), and QOL (r = 0.476, p < 0.001). The mediation analysis revealed significant chain mediation effects of loneliness, depression, and anxiety on the relationship between social participation and QOL (ß = 0.006, p < 0.001, 95% CI [0.001, 0.007]). Higher levels of social participation were associated with lower levels of loneliness, which in turn reduced depression and anxiety, thereby enhancing QOL. These findings highlight the importance of promoting social participation to improve psychological wellbeing and QOL among older adults in China. The study advocates for active social engagement and the provision of relevant services, as well as psychological support and emotional counseling for those facing mental health challenges due to insufficient social participation.

A Texting- and Internet-Based Self-Reporting System for Enhanced Vaccine Safety Surveillance With Insights From a Large Integrated Health Care System in the United States: Prospective Cohort Study.

BACKGROUND: SMS text messaging- and internet-based self-reporting systems can supplement existing vaccine safety surveillance systems, but real-world participation patterns have not been assessed at scale. OBJECTIVE: This study aimed to describe the participation rates of a new SMS text messaging- and internet-based self-reporting system called the Kaiser Permanente Side Effect Monitor (KPSEM) within a large integrated health care system. METHODS: We conducted a prospective cohort study of Kaiser Permanente Southern California (KPSC) patients receiving a COVID-19 vaccination from April 23, 2021, to July 31, 2023. Patients received invitations through flyers, SMS text messages, emails, or patient health care portals. After consenting, patients received regular surveys to assess adverse events up to 5 weeks after each dose. Linkage with medical records provided demographic and clinical data. In this study, we describe KPSEM participation rates, defined as providing consent and completing at least 1 survey within 35 days of COVID-19 vaccination. RESULTS: Approximately, 8% (164,636/2,091,975) of all vaccinated patients provided consent and completed at least 1 survey within 35 days. The lowest participation rates were observed for parents of children aged 12-17 years (1349/152,928, 0.9% participation rate), and the highest participation was observed among older adults aged 61-70 years (39,844/329,487, 12.1%). Persons of non-Hispanic White race were more likely to participate compared with other races and ethnicities (13.1% vs 3.9%-7.5%, respectively; P<.001). In addition, patients residing in areas with a higher neighborhood deprivation index were less likely to participate (5.1%, 16,503/323,122 vs 10.8%, 38,084/352,939 in the highest vs lowest deprivation quintiles, respectively; P<.001). Invitations through the individual's Kaiser Permanente health care portal account and by SMS text message were associated with the highest participation rate (19.2%, 70,248/366,377 and 10.5%, 96,169/914,793, respectively), followed by email (19,464/396,912, 4.9%) and then QR codes on flyers (25,882/2,091,975, 1.2%). SMS text messaging-based surveys demonstrated the highest sustained daily response rates compared with internet-based surveys. CONCLUSIONS: This real-world prospective study demonstrated that a novel digital vaccine safety self-reporting system implemented through an integrated health care system can achieve high participation rates. Linkage with participants' electronic health records is another unique benefit of this surveillance system. We also identified lower participation among selected vulnerable populations, which may have implications when interpreting data collected from similar digital systems.

Deepening our understanding: Collaboration through online peer-to-peer participatory action research with children.

Child-led research is growing globally, yet there are still limitations for children's leadership in all phases of research. This article, co-written with adult and child researchers, examines child-led research undertaken online with 9 children from Ontario and Quebec over a one-year period. The article explores the process of participating in and collaborating on an online peer-to-peer participatory action research project from the brainstorming stage to recruitment, design, data collection, analysis, and dissemination of knowledge. While much literature exists on older children and youth leading research, this research provides a unique contribution to the literature on the possibilities of creating space for children ages 11 to 14 to lead research. This article finds that the child researchers most valued: (1) Play and fun; (2) Engaging in new experiences; and (3) Learning. The article concludes that child-led research is feasible, and it can create better research and provide a transformative opportunity for child and adult researchers.

[Patients' Predisposition to Participate in Clinical Trials at Hospital: A Cross-Sectional Study]. / Predisposición de los pacientes a participar en ensayos clínicos en el Hospital Dr. César Milstein: un estudio de corte transversal.

INTRODUCTION: Clinical trials are a fundamental tool in evidence-based medicine, with participant recruitment being a critical factor for their execution. Low participation in a study leads to inadequate sample size. Older adults constitute a minority in clinical trials, and various factors influence their level of participation and retention during the study process. Our objective is to determine the willingness of older adults to participate in clinical trials and identify their main barriers and facilitator. METHODS: A cross-sectional study was carried out on outpatient adults over 60 years of age. The rate of desire for voluntary participation in clinical trials was determined and through a validated survey "National Health Information Trends Survey (HINTS 5, cycle 4)" the knowledge, rate of prior participation in CE and the influence of different factors that could be associated with a positive attitude to participate. These factors were analyzed using ordinal logistic regression. RESULTS: 251 older adults were surveyed. Of them, 171 (68%) reported not having any knowledge about clinical trials and 80 (31.87%) reported having it to some degree. 12 patients (5%) previously participated in a CS and up to 88 patients (35%) expressed that they would probably or definitely participate in one. It was observed that, the older the age, the less willingness to participate in CE [OR]: 0.55 (CI 95% 0.34-0.88). Likewise, male sex was associated with a greater desire to participate [OR]: 1.74 (CI 95% 1.06-2.84), respectively. The scenarios that were associated with a greater desire to participate in CE were knowing that by participating you could help others [OR]: 1.95 (95% CI 1.36-2.178), the possibility of receiving help for participating [OR]: 1.69 (95% CI 1.26-2.26) and the possibility of trying a new type of medical care [OR]: 1.71 (95% CI 1.20-2.42). CONCLUSIONS: The level of knowledge about CE among older adults is low and up to a third of them would participate as volunteers in a CE. The dissemination of information about ECs could encourage a higher participation rate.

No one listens to us, we know this, so we participated: Qualitative evidence from menstruation research during the COVID-19 pandemic.

BACKGROUND: We created a survey to assess menstrual side effects after COVID-19 vaccination when we noticed news stories that denied or discounted the experiences of tens of thousands of menstruating and formerly menstruating people who reported experiencing bleeding changes. This survey had an unprecedented response hundreds of times higher than we had anticipated (n = 101,824). OBJECTIVES: We investigated what motivated our sample to participate without remuneration to understand both general motivations for survey participation as well as why this survey captured the interest of so many. DESIGN: We used open-ended responses from our online, mixed-method survey collected from April to October 2021. METHODS: Using computer-assisted qualitative data analysis tools in R, we conducted a thematic analysis on open-ended responses. We used topic modeling to cluster the data, synthesize responses across 22,737 participants, and inform the themes summarizing the responses to "What is your interest in this project?" We compared and contrasted responses across groups (racial identity, ethnicity, gender) to examine whether the themes were representative across the demographic groups in our study. RESULTS: The themes that characterized participants' interest in participating were vaccine effects and women's/people's health, personal experience related to the vaccine, and a love for science and data. We compared responses among demographic subgroups to avoid an overfocus on majority group responses and found the themes were reflected across each group. Lastly, we found our themes reflected multiple types of altruism. CONCLUSION: These results were important in showing how emergent research that focuses on the concerns of potential participants can encourage high response rates from both marginalized and majority communities. Inclusive practices and familiarity with the research team built credibility that engendered trust with the public.

No one listens to us, we know this, so we participated: Qualitative evidence from menstruation research during the COVID-19 pandemicDespite the success of the COVID-19 vaccine rollout, trust in science was put to the test as tens of thousands of people who currently menstruate or people who used to menstruate (e.g., postmenopausal) reported experiencing changes to their menstrual bleeding or new bleeding. News stories and medical professionals denied or discounted their experiences. In response, we created a survey to assess menstrual side effects after COVID-19 vaccination. The survey had an unprecedented response. Therefore, we investigated our sample's motivations, in particular, because this was unpaid research. We used computer-assisted tools to synthesize open-ended answers to "How did you hear about this project" and "What is your interest in this study?" To understand what led people to participate, we found participants' interests were vaccine effects and women's/people's health, personal experience related to the vaccine, and a love for science and data. We compared responses among demographic subgroups to avoid an overfocus on the majority responses (e.g., cisgender women or White people), and we found our themes reflected multiple types of altruism. These results were important in showing how research that is responsive to public needs encourages high responses from both marginalized and majority communities. We utilized inclusivity and familiarity to build credibility and create online presences to engender trust with the public. Future clinical research can be informed by our findings. We show strategies for doing ethical clinical research by speaking to people from all groups who may be affected.

Translation, extension, and evaluation of usability, usefulness, and safety of a fall prevention and management program for people living with spinal cord injury and multiple sclerosis who use wheelchairs or scooters full time.

Background: Falls are prevalent among people living with Multiple Sclerosis (PwMS) and Spinal Cord Injury (PwSCI) who use wheelchairs or scooters (WC/S) full time, however, there is a scarcity of evidence-based fall prevention and management programs. Objective: To describe the systematic translation of an in-person fall prevention and management program (Individualized Reduction Of FaLLs - iROLL) for PwMS to an online platform, extending its scope to include PwSCI, and to evaluate the preliminary useability, usefulness, and safety of the intervention. Methods: iROLL was systematically translated to an online platform (iROLL-O). PwMS and PwSCI who use a WC/S full time, experienced at least one fall within the past 36 months, and could transfer independently or with minimal to moderate assistance, enrolled in iROLL-O. Usability, usefulness, and safety were evaluated through 1:1 semi-structured interviews, gathering feedback on: perceived impact of the intervention on falls and functional mobility, program experiences, adverse events, and recommendations for improvement. Results: Five participants successfully completed the iROLL-O program. No safety concerns were raised by participants. Themes emerging from the semi-structured interviews included: (1) barriers and facilitators to program access, (2) motivation for participation, (3) program outcomes, and (4) program content and structure. Participants reported reduced concerns about falling, enhanced functional mobility skills, and highlighted the supportive nature of synchronous group meetings for learning. Conclusion: No adverse events occurred during the implementation of iROLL-O and participants found the program to be useable and useful. Further testing is needed to examine efficacy among a large and diverse population.

(Not) Going Out and Barriers to Leaving the House for People With Intellectual Disabilities Through the COVID-19 Pandemic in the UK.

BACKGROUND: People with intellectual disabilities commonly experience multiple barriers to 'going out'. AIMS: This paper explores what barriers prevented people from going out, and if the extent and nature of going out changed over time for people with intellectual disabilities as the COVID-19 pandemic progressed. METHODS: Data are drawn from a wider study that explored, at four time points, the experiences of people with intellectual disabilities through the COVID-19 pandemic in the United Kingdom. FINDINGS: The number of people leaving the house for almost all reasons increased over time through the pandemic, except for some outdoor participation and exercise. However, there was a significant decrease in outdoor exercise at the final time point of the study. Reliance on other people and a lack of availability of support were identified as barriers. CONCLUSION: A combination of factors restricted the extent to which people were going out even after COVID-19 protections were lifted.

[The role of patients in clinical and associative research: developments and challenges]. / La place des patients dans la recherche clinique et associative : évolutions et enjeux.

In 2002, the Kouchner law made it possible to position patients as healthcare players. In particular, it recognizes the existence of experiential knowledge, giving them a role as experts in their illnesses. In this article, we'll look at how this expertise is put to good use in clinical research, and then in associative research. We will show that, while patient involvement in research has never been so important, there is still a long way to go.

Test-Retest Reliability, Clinical Usefulness, and Telephone Application of the Work Limitation Questionnaire in Individuals Who Returned to Work After Stroke.

PURPOSES: To measure the test-retest reliability and the clinical usefulness of the Work Limitation Questionnaire, and to compare the in-person with the telephone application. METHODS: Cross-sectional, exploratory study. The Work Limitation Questionnaire was answered three times: twice in person, to measure test-retest reliability and clinical usefulness, and once, by telephone, to measure the validity of the telephone application. RESULTS: Fifty-six individuals (32 men) with mild to moderate disabilities after stroke were included. Test-retest reliability was very high (ICC 0.96; 95% CI 0.94 to 0.98; p < 0.01), the clinical usefulness was high (9 out of 12 points), and the correlation between in-person and telephone applications was high (ρ = 0.7; 95% CI 0.5 to 0.9; p < 0.01). The average productivity loss was 4% (SD 5, min-max 0 to 15%). CONCLUSIONS: The Work Limitation Questionnaire showed adequate test-retest reliability and clinical usefulness in individuals with stroke. The telephone application produced comparable results to in-person applications. The participants reported low productivity loss, which may be related to the mild impairments of the included sample.

Effect of ecoliteracy on farmers' participation in pesticide packaging waste governance behavior in rural North China.

Farmers' participation in pesticide packaging waste (PPW) governance is important for improving agricultural pollution and achieving sustainable agricultural development. By incorporating the theory of planned behavior, value-belief-norm theory, cognition and behavior theory etc., we construct a theoretical model comprising "ecoliteracy-farmers' WTP in PPW governance-participation in PPW governance behavior." This study investigates how ecoliteracy affects farmers' participation in PPW governance and explores the mediating effect of farmers' willingness to participate (WTP) in PPW governance. We use structural equation modeling to analyze data collected from a questionnaire survey including 1118 samples of Chinese farmers. The results show that (1) Ecoliteracy significantly affects farmers' WTP in PPW governance. Ecological cognition, emotion, values, and knowledge and skills positively affect WTP in PPW governance, while ecological cognition and ecological knowledge and skills significantly affect participation in PPW governance behavior. (2) Farmers' WTP in PPW governance mediates ecoliteracy and governance participation behavior. (3) Heterogeneity analysis reveals that different planting scales, different planting categories, and receiving/not receiving government project support have different effects on farmers' participation in governance behavior. Farmers in the large-scale group are more likely to participate in governance than those in the medium- and small-scale groups, and farmers in the mixed grain and economic category are more likely to participate in governance than those in the economic and grain categories. Furthermore, farmers who receive government support are more likely to participate in governance than those who do not. Our results can serve as a policy making reference for promoting PPW governance in various regions.