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Abstract Background Participation in epidemiological studies has strongly declined in recent years. We examined the reasons for (non)participation in population-based health studies among participants and nonparticipants of a prospective study on influenza vaccination among the elderly. Methods Males and females between 65 and 80 years of age (N = 5582) were randomly selected from the residents’ registration office in Hannover, Germany, and were invited to participate in a study featuring vaccination with a seasonal adjuvanted influenza vaccine (Fluad™, Novartis) including five follow-up visits (day 0, 1/3, 7, 21, 70 with respect to vaccination). A 24-item nonresponder questionnaire, including 10 items on reasons for participating in a hypothetical health study, was mailed to 1500 randomly selected nonparticipants. The same 10 items were included in the end-of-study questionnaire administered to the participants in the vaccination study (n = 200). Logistic regression analysis with backward elimination was used to identify the reasons most strongly associated with nonparticipation. Results Five hundred thirty-one (35%) nonparticipants and 200 participants (100%) returned the respective questionnaires. Nonparticipation was associated with a lower interest in obtaining personal health information (OR = 3.32) and a preference for less invasive (OR = 3.01) and less time-demanding (OR = 2.19) studies. Responses to other items, e.g. regarding altruistic motives, monetary compensation, general interest of the study, or study approval through ethics committee and data security authority, did not differ between participants and nonparticipants. Conclusions Participation rates in health studies among elderly individuals could potentially be improved by reducing interventions and time demand, for instance by implementing methods of self-sampling and remote data collection. Trial registration No. 1100359 (ClinicalTrials.gov, date of registration: 09.02.2015).

While the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides numerous benefits to many enrolled families across the United States, including access to nutritious foods, some recent drops in maternal participation in Kentucky resulted from failures to retrieve those benefits. We explored perceived benefits of and encountered barriers to food benefit retrieval. Journey mapping included direct observations of client appointments, clinic lobby areas, and a shopping experience and was augmented with focus groups conducted in two urban and two rural areas. Major touchpoints before WIC appointments, during those appointments at clinics, and after appointments when redeeming food benefits were identified. Across touchpoints, mothers identified childcare, transportation issues, long waits, confusion regarding eligibility, problems scheduling appointments, and stigma as barriers to their ability to retrieve food instruments. Despite these barriers mothers value the benefits of WIC, especially access to healthy foods, infant formula, and nutrition education. This work demonstrates a method by which WIC mothers’ experiences shed light on client service shortfalls and possible opportunities to improve client services. [ABSTRACT FROM AUTHOR]

Background: Participation in epidemiological studies has strongly declined in recent years. We examined the reasons for (non)participation in population-based health studies among participants and nonparticipants of a prospective study on influenza vaccination among the elderly.Methods: Males and females between 65 and 80 years of age (N = 5582) were randomly selected from the residents' registration office in Hannover, Germany, and were invited to participate in a study featuring vaccination with a seasonal adjuvanted influenza vaccine (Fluad™, Novartis) including five follow-up visits (day 0, 1/3, 7, 21, 70 with respect to vaccination). A 24-item nonresponder questionnaire, including 10 items on reasons for participating in a hypothetical health study, was mailed to 1500 randomly selected nonparticipants. The same 10 items were included in the end-of-study questionnaire administered to the participants in the vaccination study (n = 200). Logistic regression analysis with backward elimination was used to identify the reasons most strongly associated with nonparticipation.Results: Five hundred thirty-one (35%) nonparticipants and 200 participants (100%) returned the respective questionnaires. Nonparticipation was associated with a lower interest in obtaining personal health information (OR = 3.32) and a preference for less invasive (OR = 3.01) and less time-demanding (OR = 2.19) studies. Responses to other items, e.g. regarding altruistic motives, monetary compensation, general interest of the study, or study approval through ethics committee and data security authority, did not differ between participants and nonparticipants.Conclusions: Participation rates in health studies among elderly individuals could potentially be improved by reducing interventions and time demand, for instance by implementing methods of self-sampling and remote data collection.Trial Registration: No. 1100359 (ClinicalTrials.gov, date of registration: 09.02.2015). [ABSTRACT FROM AUTHOR]

Undergraduate research participant pools play an essential role in facilitating research, and many universities rely on them for participant recruitment. There is an abundance of information about those who do elect to participate in research through these recruitment systems but very little about those who do not. The present study examines both undergraduate research pool participants and nonparticipants, and the objective is to explore how they differ in their views. A sample of 483 Canadian undergraduate students (n = 442 participants and n = 41 nonparticipants) completed measures of their impressions of participation, their perceived enjoyment, and their knowledge gained from participating in research and asked to compare this with their impressions of attending class and taking exams. Factorial analysis of variance and χ2 results found support for both similarities and differences between both groups. Overall, the results suggest that nonparticipants do not have a good understanding of what is involved in participating in research activities and view it is a potentially aversive or negative experience. [ABSTRACT FROM AUTHOR]

Objective: Missing data is a ubiquitous problem in studies using patient-reported measures, decreasing sample sizes and causing possible bias. In longitudinal studies, special problems relate to attrition and death during follow-up. We describe a methodological approach for the use of multiple imputation (MI) to meet these challenges. Methods: In a cohort of patients treated with percutaneous coronary intervention followed with use of repetitive questionnaires and information from national registers over 3 years, only 417 out of 1,726 patients had complete data on all measure points and covariates. We suggest strategies for use of MI and different methods for dealing with death along with sensitivity analysis of deviations from the assumption of missing at random, all with the use of standard statistical software. The Mental Component Summary from Short Form 12-item survey was used as an example. Conclusion: Ignoring missing data may cause bias of unknown size and direction in longitudinal studies. We have illustrated that MI is a feasible method to try to deal with bias due to missing data in longitudinal studies, including attrition and nonresponse, and should be considered in combination with analysis of sensitivity in longitudinal studies. How to handle dropout due to death is still open for debate. [ABSTRACT FROM AUTHOR]

This article examines the relationship between community journalists and residents in Kibera, a sizable slum in Nairobi, Kenya. Focusing on two videojournalism initiatives, this research explores the structural and cultural features of Kibera that impacted residents' participation and nonparticipation in these projects. Findings reveal that many residents were unfamiliar with these projects because the organizations were located in a more expensive part of Kibera and the videos were not regularly distributed locally. In addition, Kibera has a history of exploitation by media producers and nongovernmental organizations, so residents are conditioned to be wary of journalism organizations. Thus, while journalists believed they were providing a service to the community, many residents did not see the value of this work. This study reveals that journalists in contentious communities must dedicate adequate resources to building productive relationships with those who are not actively engaged in news production. Otherwise, those who do not believe that journalists are serving the best interest of the community may choose to resist this work. [ABSTRACT FROM AUTHOR]

Background: As the number of cancer survivors is increasing, it is important to be able to offer exercise and physical activity (PA)-promoting interventions that are both effective and reasonably accessible. Internet-based interventions are typically less expensive and more accessible alternatives to on-site supervised interventions. Currently, little is known about the characteristics of nonparticipants in PA promotion trials in the cancer survivorship setting, both in general and specifically in trials using internet-supported interventions., Objective: This study aims to gain insight into the characteristics associated with nonparticipation in a blended internet-based supported intervention trial to promote PA., Methods: Breast and prostate cancer survivors, 3-36 months after primary curative treatment, were invited to participate in the PABLO trial; this trial compared an internet-based intervention to enhance PA levels, with or without additional support from a physical therapist, to usual care. Participants and nonparticipants were asked to complete a comprehensive questionnaire assessing sociodemographics, fatigue, and health-related quality of life. Baseline data for participants and nonparticipants were compared using the independent Student t test and chi-square test., Results: The inclusion rate in the trial was 11.03% (137/1242). Of the nonparticipants, 13.95% (154/1104) completed the questionnaire. Participants were more highly educated (P=.04), had a paid job less often (P=.03), and were on sick leave more often (P=.03). They reported less PA per week, both moderate (P=.03) and vigorous (P<.01), before diagnosis and during leisure time (P<.01, effect size [ES]=0.44). They reported a significantly lower stage of change (P≤.01), lower self-efficacy (P<.01, ES=0.61), perceived barriers to PA (P<.01, ES=0.54), and more general fatigue (P<.01, ES=0.60). Participants reported lower health-related quality of life for most domains (ES ranging from 0.34 for mental health to 0.48 for social functioning). No significant differences were found for other sociodemographics, mood state, or attitudes toward or perceived social support for PA., Conclusions: The participants who self-selected for trial participation reported lower PA levels before diagnosis and a stronger need for support compared with nonparticipants. The trial thus included those patients who might benefit the most from internet-based supportive PA interventions., Trial Registration: Netherlands trial register NTR6911; https://www.trialregister.nl/trial/6733., (©Hester J vd Wiel, Martijn M Stuiver, Anne M May, Susan van Grinsven, Marlou F A Benink, Neil K Aaronson, Hester S A Oldenburg, Henk G van der Poel, Wim H van Harten, Wim G Groen. Originally published in JMIR Cancer (https://cancer.jmir.org), 05.10.2021.)

Objectives　The identification of non-participants in the Japan National Health and Nutrition Survey (NHNS) requires record linkage with its master sample from the Comprehensive Survey of Living Conditions (CSLC). In principle, we can merge individual records between the two surveys by using key identifiers including household ID, but false matches and nonmatches can occur. We examined combinations of key variables for improving record linkage to identify nonparticipants in the NHNS.Methods　We used individual-level data from the NHNS and the CSLC from 1988 to 2015 (except 2012). We extracted from CSLC data individuals in participating unit blocks in the NHNS to merge records between the two surveys. We used four combinations of key variables: prefecture ID, census enumeration district ID, unit block ID, household ID, and household member ID (A); household member ID in A was replaced with sex and birth year and month or age (B); sex and birth year and month or age were added to A (C); two-stage linkage of B and C (D). We classified a sample of individuals into matched participants, unmatched NHNS participants, and unmatched CSLC participants (a proxy for nonparticipants). We compared the percentages of matched NHNS participants and unmatched CSLC participants across the four combinations of key variables.Results　We obtained a sample of 455,854 participants from the CSLC and 335,010 from the NHNS. The percentage of matched NHNS participants was highest in A (the upper 90%), followed by D (the lower 90%), B (the lower 90%), and C (the 80%). Compared to C, the percentage of matched NHNS participants was higher by 8-14 percentage points in A and 5-10 percentage points in B. Compared to B, it was higher by 0.1-0.4 percentage points in D. The percentage of unmatched CSLC participants was highest in C, followed by B, D, and A. The percentage of unmatched CSLC participants increased in D from the 20% level in the late 1980s to around 30% in the 1990s and stayed between the 30% level and the lower 40% level in the 2000s.Conclusion　The highest percentage of accurate matches of NHNS participants was obtained by considering changes in household member ID and incorrect entries on sex and birth year/month and age, and same-sex multiple births. However, there are limitations in handling unmatched participants due to changes in household ID or other reasons. It is therefore necessary to consider the possibility of false nonmatches included in unmatched CSLC participants in regarding them as non-participants in the NHNS.