-
Journal of Alzheimer's Disease : JAD 2023Study partners are required for all participants at Alzheimer's Disease Research Centers (ADRCs). Study partners' attitudes and beliefs may contribute to missed visits...
BACKGROUND
Study partners are required for all participants at Alzheimer's Disease Research Centers (ADRCs). Study partners' attitudes and beliefs may contribute to missed visits and negatively impact retention of participants in longitudinal AD studies.
OBJECTIVE
Study partners (N = 212) of participants (Clinical Dementia Rating® [CDR]≤2) at four ADRCs were randomly surveyed to examine their facilitators and barriers to continued participation in AD studies.
METHODS
Reasons for participation were analyzed with factor analysis and regression analysis. Effects of complaints and goal fulfillment on attendance were estimated with fractional logistic models. Open-ended responses were characterized with a Latent Dirichlet Allocation topic model.
RESULTS
Study partners participated for personal benefit and altruism. They emphasized personal benefits more when their participants had a CDR > 0 than when they had a CDR = 0. This difference declined with participant age. The majority of study partners rated their ADRC participation as positive and meeting their goals. Although half reported at least one complaint, very few regretted participating. Those who reported that ADRC participation fulfilled their goals or had fewer complaints were more likely to have perfect attendance. Study partners requested more feedback about test results and better management of study visits.
CONCLUSION
Study partners are motivated by both personal and altruistic goals. The salience of each goal depends on their trust in researchers and the participant's cognitive status and age. Retention may improve with perceived goal fulfillment and fewer complaints. Potential areas for improving retention are providing more information about the participant's test results and better management of study visits.
Topics: Humans; Alzheimer Disease; Longitudinal Studies; Attitude; Surveys and Questionnaires; Mental Status and Dementia Tests
PubMed: 37212114
DOI: 10.3233/JAD-230079 -
Frontiers in Psychology 2022Changes in the external market environment put forward objective requirements for the formulation of organizational strategic plans, making it difficult for the... (Review)
Review
Changes in the external market environment put forward objective requirements for the formulation of organizational strategic plans, making it difficult for the organization's leaders to make the right and effective decisions quickly on their own. As a result, participative leadership, which encourages and supports employees to participate in the decision-making process of organizations, has received increasing attention in both theory and practice. We searched the literature related to participative leadership in databases such as Web of Science, EBSCO, ProQuest, and China National Knowledge Infrastructure (CNKI). Based on this, we clarify the concept of participative leadership, propose a definition of participative leadership, summarize measurement scales for this type of leadership, and compare participative leadership with other leadership styles (empowering leadership and directive leadership). We also present a research framework for participative leadership that demonstrates its antecedents; the mechanisms for its development based on social exchange theory, conservation of resources theory, social cognitive theory; social information processing theory, and implicit leadership theory; and outcomes. Finally, we identify five potential research areas: Connotation, antecedents, outcomes, mediators and moderators, and study of participative leadership in China.
PubMed: 35719563
DOI: 10.3389/fpsyg.2022.924357 -
PloS One 2023UniSA's Invictus Pathways Program (IPP), a service program, was originally developed to assist veterans to train for and participate in the Invictus Games. More...
INTRODUCTION
UniSA's Invictus Pathways Program (IPP), a service program, was originally developed to assist veterans to train for and participate in the Invictus Games. More recently, the scope of the IPP has widened to support and improve wellbeing and facilitate post traumatic growth and recovery among participants who are living with physical and mental health injuries and conditions. This paper describes the components of the IPP and reports its process evaluation.
METHODS
Underpinned by a pragmatic approach, data related to participant and student involvement in the IPP, the number of participant training sessions, session attendance, program activities and events, and program fidelity were compiled from process documentation that had been collected between 2017 and 2020, inclusive. Following ethics approval, semi-structured interviews were conducted with participants of the IPP, members of their family support network, and university staff to understand the operations of the IPP and satisfaction with the program.
FINDINGS
There was high fidelity for the student-led exercise training aspects of IPP; however, data collection relevant to participants' psychological outcomes, and non-training IPP events and activities did not always occur as intended. Between 2017 and 2020, 53 veterans had participated in or were still participating in the IPP, and 63 allied health students had completed placements as student trainers. Fifty-three individual training sessions were delivered in 2017, increasing to 1,024 in 2020. Seventy-one interviews were completed with key IPP stakeholders. The qualitative analysis identified four higher order themes: Implementation and fidelity of the IPP, Satisfaction with the IPP, Areas of the IPP requiring improvement and suggestions for change, and Sustainability of the IPP. Satisfaction was generally high for the IPP, although there were factors that negatively impacted the experience for some participants and their family support network. Suggestions for improvement to program components and delivery aspects were made during the interviews, and the precariousness of IPP funding and sustainability was raised as an ongoing concern.
CONCLUSION
This process evaluation has demonstrated that the physical activity training components of the IPP were delivered with high levels of fidelity, and that satisfaction with the IPP is mostly high, although there are areas that could be improved. There is a need for a more structured approach to the ongoing evaluation of the IPP. This includes ensuring that program staff have a shared understanding of the purpose of evaluation activities and that these activities occur as intended. Beyond this is the need to secure funding to support the sustainability of the IPP, so that it can continue to contribute to the wellbeing of veterans living with physical and mental health conditions, and their families.
Topics: Humans; Allied Health Personnel; Students; Personal Satisfaction; Program Evaluation
PubMed: 38011165
DOI: 10.1371/journal.pone.0293756 -
JAMA Network Open Aug 2022Many randomized clinical trials (RCTs) led by high-income countries (HICs) now enroll patients from lower middle-income countries (LMICs) and upper middle-income...
IMPORTANCE
Many randomized clinical trials (RCTs) led by high-income countries (HICs) now enroll patients from lower middle-income countries (LMICs) and upper middle-income countries (UMICs). Although enrolling diverse populations promotes research collaborations, there are issues regarding which countries participate in RCTs and how this participation may contribute to global research.
OBJECTIVE
To describe which UMICs and LMICs participate in RCTs led by HICs.
DESIGN, SETTING, AND PARTICIPANTS
A cross-sectional study of all oncology RCTs published globally during January 1, 2014, to December 31, 2017, was conducted. The study cohort was restricted to RCTs led by HICs that enrolled participants from LMICs and UMICs. Study analyses were conducted in November 1, 2021, to May 31, 2022.
MAIN OUTCOMES AND MEASURES
A bibliometric approach (Web of Science 2007-2017) was used to explore whether RCT participation was proportional to other measures of cancer research activity. Participation in RCTs (ie, percentage of RCTs in the cohort in which each LMIC and UMIC participated) was compared with country-level cancer research bibliometric output (ie, percentage of total cancer research bibliometric output from the same group of countries that came from a specific LMIC and UMIC).
RESULTS
Among the 636 HIC-led RCTs, 186 trials (29%) enrolled patients in LMICs (n = 84 trials involving 11 LMICs) and/or UMICs (n = 181 trials involving 26 UMICs). The most common participating LMICs were India (42 [50%]), Ukraine (39 [46%]), Philippines (23 [27%]), and Egypt (12 [14%]). The most common participating UMICs were Russia (115 [64%]), Brazil (94 [52%]), Romania (62 [34%]), China (56 [31%]), Mexico (56 [31%]), and South Africa (54 [30%]). Several LMICs are overrepresented in the cohort of RCTs based on proportional cancer research bibliometric output: Ukraine (46% of RCTs but 2% of cancer research bibliometric output), Philippines (27% RCTs, 1% output), and Georgia (8% RCTs, 0.2% output). Overrepresented UMICs include Russia (64% RCTs, 2% output), Romania (34% RCTs, 2% output), Mexico (31% RCTs, 2% output), and South Africa (30% RCTs, 1% output).
CONCLUSIONS AND RELEVANCE
In this cross-sectional study, a substantial proportion of RCTs led by HICs enrolled patients in LMICs and UMICs. The LMICs and UMICs that participated in these trials did not match overall cancer bibliometric output as a surrogate for research ecosystem maturity. Reasons for this apparent discordance and how these data may inform future capacity-strengthening activities require further study.
Topics: Clinical Trials as Topic; Developed Countries; Developing Countries; Humans; Income; India; Research Report
PubMed: 35980637
DOI: 10.1001/jamanetworkopen.2022.27252 -
PloS One 2023UniSA's Invictus Pathways Program (IPP) is motivated by the spirit of the Invictus Games to mobilise the benefits of sport to aid physical, psychological, and social...
INTRODUCTION
UniSA's Invictus Pathways Program (IPP) is motivated by the spirit of the Invictus Games to mobilise the benefits of sport to aid physical, psychological, and social wellbeing. Originally developed to assist veterans to train for and participate in the Invictus Games, the program has extended its scope to promote recovery and wellbeing for all veterans through physical activity. This paper describes the expectations and experiences of the IPP from the perspective of program participants.
METHODS
Objective measures of physical and psychological wellbeing were collected by survey, to enable description of the participating veterans' wellbeing status. Semi-structured interviews were conducted with 15 participants of the IPP who had not participated in an Invictus Games or Warrior Games. Reflexive thematic analysis was used to analyse the interview data. Coding and themes were developed through a mixture of inductive and deductive approaches to analysis. Initial themes related to previous life experience, expectations of participation, and outcomes of participation were preconceived, but the analysis provided scope for an inductive approach to formulate additional themes.
FINDINGS
Five of the participants had very high K10 scores, and scores above the norm for PCL-C, whilst one would be classified with an alcohol disorder. The qualitative analysis identified five higher order themes: Life experiences prior to participation in the IPP, Making a choice to participate in the IPP, Expectations of participation in the IPP, Impact of participation in the IPP, and Future Plans. There were perceptions that the IPP was beneficial for the participating veterans, irrespective of their physical and psychological health status. Participants described the positive impact of the IPP on their physical fitness, their social engagement, and their sense of belonging within the IPP and the university. Participants perceived the IPP to be an opportunity for them to 'give back' by contributing to the education of the students delivering the IPP. Participants reported the intention to continue being physically active. For some, this meant selection in an Invictus Games team, for others, this meant getting involved in community sporting organisations.
CONCLUSION
The Invictus Pathways Program has been shown to have a positive impact on the physical and psychological wellbeing of the veterans who participated in its initial stages. As the program evolves, the longitudinal impact of participation, for veterans and their families, will be assessed.
Topics: Humans; Veterans; Social Change; Exercise; Sports; Health Status; Qualitative Research
PubMed: 37903173
DOI: 10.1371/journal.pone.0287228 -
Archives of Physical Medicine and... Sep 2019To investigate the influence of traditional culture on health, disability, and health care services among American Indian and Alaska Native (AI/AN) children and youth...
OBJECTIVE
To investigate the influence of traditional culture on health, disability, and health care services among American Indian and Alaska Native (AI/AN) children and youth with disabilities.
DESIGN
Exploratory descriptive qualitative analysis.
SETTING
Tertiary children's hospital.
PARTICIPANTS
A purposively sampled group (N=17) of AI/AN youth (n=4) with disability lasting at least 6 months age 8-24 years old and parents (n=13) of AI/AN children with disability lasting at least 6 months age 6 months to 17 years old.
INTERVENTIONS
Not applicable.
MAIN OUTCOME MEASURES
Participant responses to semistructured interview questions regarding health beliefs, daily activities, participation in cultural activities, and experiences receiving or having their child receive health care and rehabilitation services.
RESULTS
Three themes were identified: (1) participation in cultural activities is important for health as an AI/AN person; (2) experiences participating in cultural activities with functional differences; and (3) lack of recognition of the culturally related functional needs of AI/AN children with disabilities by rehabilitation providers. Children participated in cultural activities primarily through attendance at community-wide events. Barriers to participation in cultural activities included environmental barriers and adaptive mobility devices ill-suited to rough terrain. Participants perceived addressing functional needs related to culture, and cultural activities was not an expected part of rehabilitation services.
CONCLUSIONS
AI/AN children with disabilities experience barriers to participation in cultural activities, making it hard for them to achieve their definition of ideal health. Rehabilitation services have not identified or addressed these unmet culturally related functional needs.
Topics: Adolescent; Adult; Alaska Natives; Child; Child, Preschool; Culturally Competent Care; Disabled Persons; Environment; Female; Health Knowledge, Attitudes, Practice; Humans; Indians, North American; Infant; Interviews as Topic; Male; Middle Aged; Parents; Qualitative Research; Self-Help Devices; Social Participation; Young Adult
PubMed: 30578776
DOI: 10.1016/j.apmr.2018.11.016 -
Frontiers in Physiology 2023There is a growing interest in the scientific community about the progression and congruity in the performance of talented participants who complete representing...
There is a growing interest in the scientific community about the progression and congruity in the performance of talented participants who complete representing different nations in the most important international events. The prediction of incoming performances is nowadays in demand with the objective of returning in talent investment. Talent identification programs have tried to select and develop sports talent over years. However, to our knowledge, there is a lack of research about success in swimming World Championships (WCs) performance considering continents-country and how successful outcomes are influenced by these variables. Therefore, the primary goal is to analyze the effect of early specialization comparing the performance progression model of the countries gathered by continents. Participant's data from all Junior and Senior WCs between 2006 and 2017 from International Swimming Federation (FINA). One-way ANOVA, ANCOVA and regression model were used to explain whether the variable category, age, best z-score, experience, and continent influences the performance obtained in Absolute WC. Significant differences ( < 0.01) were found between the average performance obtained by the two different categories (junior: swimmers participating in junior WCs before senior WCs; senior: swimmers participating in senior WCs without previous participation in junior WCs), where swimmers from category junior showed significant better performance's times than seniors, except in America. ANCOVA results showed that generally, the greatest differences where in the earliest ages, with best performance registered in category junior in all the continents. Also, the experience was a significant variable in the general model. Swimmers who had participated in junior category prior absolute obtained better performance's times than those swimmers who participated directly in absolute, in the first participation in senior WC. Thus, early specialization is a key factor to obtain better results in senior WCs for all the continents, except in America.
PubMed: 37288433
DOI: 10.3389/fphys.2023.1075167 -
BMC Women's Health Jun 2022The World Health Organisation's efforts to eliminate cervical cancer by 2030 with a target of 70% screening coverage using a high-performance test demand that women...
BACKGROUND
The World Health Organisation's efforts to eliminate cervical cancer by 2030 with a target of 70% screening coverage using a high-performance test demand that women increase participation in screening. Factors that impact uptake of screening must therefore be identified and bottlenecks addressed, especially in lower- and middle-income countries where cervical cancer incidence remains high. This study investigated Muslim women, participation in, intention to engage in and self-efficacy about cervical cancer screening.
METHODS
An analytical cross-sectional study was conducted among Muslim women aged 18 years and above in the Cape Coast Metropolis of Ghana using an interviewer-administered questionnaire. Data were analysed using appropriate descriptive statistics, Chi-square test, point biserial correlation and binary logistic regression analysis.
RESULTS
The mean age of participants was approximately 31 years (M = 30.9, SD = 10.4). Out of the 431 women, 21 (4.9%) had ever participated in cervical cancer screening. Participants demonstrated very low knowledge about cervical cancer and screening, with a mean knowledge score of 3.68 out of 15. Knowledge about cervical cancer was associated with increased odds of participating in cervical cancer screening (aOR = 1.32, 95%CI 1.11, 1.56). Concerns about similarity with health provider in terms of gender and faith was associated with decreased odds of cervical cancer screening self-efficacy (aOR = 0.81, 95% CI 0.67). Islamic modesty (aOR = 0.88, 95%CI 0.81, 0.96) was associated with decreased self-efficacy about seeking cervical cancer screening, whereas attitude (aOR = 1.32, 95%CI 1.14, 1.53) was significantly associated with increased self-efficacy about seeking cervical cancer screening. Again, Islamic modesty (aOR = 0.88, 95%CI 0.80, 0.97) was associated with decreased intention to participate in screening, whereas attitude (aOR = 1.42, 95%CI 1.20, 1.68) was associated with increased intention to participate in screening.
CONCLUSIONS
There are gaps in knowledge of cervical cancer among Muslim women in this study as less than 5% had participated in screening. A positive attitude was found to influence intention to screen and actual participation in screening programmes. Islamic modesty and commitment to the Islamic faith decreased intention and self-efficacy regarding screening. Therefore, comprehensive and appropriate socio-cultural and religion-specific interventions aimed at addressing the barriers to screening are important in improving uptake among Muslim women.
Topics: Adult; Cross-Sectional Studies; Early Detection of Cancer; Female; Ghana; Health Knowledge, Attitudes, Practice; Humans; Intention; Islam; Mass Screening; Self Efficacy; Uterine Cervical Neoplasms
PubMed: 35698121
DOI: 10.1186/s12905-022-01803-0 -
European Heart Journal. Digital Health Mar 2022Cardiac rehabilitation (CR) is indicated in patients with cardiovascular disease but participation rates remain low. Telerehabilitation (TR) is often proposed as a...
AIMS
Cardiac rehabilitation (CR) is indicated in patients with cardiovascular disease but participation rates remain low. Telerehabilitation (TR) is often proposed as a solution. While many trials have investigated TR, few have studied participation rates in conventional CR non-participants. The aim of this study was to identify the percentage of patients that would be willing to participate in a TR programme to identify the main perceived barriers and facilitators for participating in TR.
METHODS AND RESULTS
Two groups of patients were recruited: CR non-participants and CR participants. Semi-structured interviews were conducted. Thirty non-participants and 30 participants were interviewed. Of CR non-participants, 33% would participate in TR and 10% would participate in a blended CR programme (combination of centre-based CR and TR). Of CR participants, 60% would participate in TR and 70% would be interested in a blended CR programme. Of those that would participate in TR, 44% would prefer centre-based CR, 33% would prefer a blended CR programme, and 11% would prefer a full TR programme. In both groups, the main facilitating aspect about TR was not needing transport and the main barrier was digital literacy.
CONCLUSION
For CR non-participants, TR will only partly solve the problem of low participation rates and blended programmes might not offer a solution. Cardiac rehabilitation participants are more prepared to participate in TR and blended CR. Digital literacy was in both groups mentioned as an important barrier, emphasizing the challenges for healthcare and local governments to keep educating all types of patients in digital literacy.
PubMed: 36713992
DOI: 10.1093/ehjdh/ztab091 -
International Journal of Environmental... Nov 2021This cross-sectional study aimed to characterize the physical activity (PA) of older adults with pre-frail status by examining sedentary behavior (SB) and PA using...
This cross-sectional study aimed to characterize the physical activity (PA) of older adults with pre-frail status by examining sedentary behavior (SB) and PA using triaxial accelerometer data, with non-frail older adults as the control group. In this study, we divided the study participants into older adults who regularly participated in self-initiated citizen group exercise activities and those who did not. Data were collected between September and December 2017. We analyzed data from 256 older adults (women: 86.3%) aged ≥65 years. The interaction effect of participation status (participation and non-participation group) and frailty status (pre-frail and non-frail group) for moderate-to-vigorous PA (F = 9.178, = 0.003) and daily mean number of steps (F = 9.351, = 0.002) was significant. For the participation group, there was no difference between pre-frail older adults and non-frail older adults regarding length of SB and PA time, indicating that PA level was maintained in the participating pre-frail older adults. In contrast, moderate-to-vigorous PA and daily mean number of steps were low in pre-frail older adults who did not participate in the activities. The opportunity to participate in self-initiated group exercise activities and other PAs in the community may help pre-frail older adults maintain their PA.
Topics: Aged; Cross-Sectional Studies; Exercise; Female; Frail Elderly; Frailty; Humans; Sedentary Behavior
PubMed: 34886059
DOI: 10.3390/ijerph182312328