Understanding motivations to participate in an observational research study: Why do patients enroll?
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ABSTRACT:
SUBMITTER: Soule MC
PROVIDER: S-EPMC4870048 | biostudies-literature | 2016
REPOSITORIES: biostudies-literature
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Understanding motivations to participate in an observational research study: Why do patients enroll?
Soule Michael C MC Beale Eleanor E EE Suarez Laura L Beach Scott R SR Mastromauro Carol A CA Celano Christopher M CM Moore Shannon V SV Huffman Jeff C JC
Social work in health care 20160302 3
By understanding common motivations for participating in observational research studies, clinicians may better understand the perceived benefits of research participation from their clients' perspective. We enrolled 164 cardiac patients in a study about the effects of gratitude and optimism. Two weeks post-enrollment, participants completed a four-item questionnaire regarding motivations for study enrollment. Altruistic motivation ranked highest, while intellectual, health-related, and financial ...[more]
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Project description:UnlabelledInformation on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a "guinea pig" and fear of risks were most mentioned as discouraging factors by children.ConclusionPaying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent.What is known• This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research. • The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary. What is new: • This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents.
| S-EPMC4839044 | biostudies-literature
Project description:IntroductionHigh participation in epidemiological studies is crucial for both external and internal validity. Because response rates have declined in recent years, there is an increasing need to understand the drivers and the barriers to research participation. This study aims to uncover the motivations in favour and against participation of older adults to an epidemiological study on health and dementia.MethodsTwenty-two older adults, who already took part to the preliminary phase of an epidemiological study in Switzerland, agreed to participate to semi-structured, face-to- face interviews. An experienced researcher carried out all interviews in a quiet place of choice of the interviewee either at their domicile or the university, between November 2019 and January 2020. The interviews were audio and video taped, transcribed verbatim, and thematically analysed by two independent researchers.ResultsWe identified three main themes for the motivations in favour of participation (i.e. personal, related to the outcomes of research, and altruistic motivations), and we highlighted subthemes for each theme (e.g. personal motivations: curiosity; civic engagement; interest in the topic; trust in science; everyone counts; openness; play the game). Motivations against participation reflected the first two themes, while there was no counterpart for altruistic motivations.ConclusionsOur thematic analysis revealed that older adults hold specular motivations in favour and against participation to research. Studying jointly motivations in favour and against provides information for recruitment strategies and to overcome barriers to participation, respectively. Participatory action research can inform the design and conduction of and should precede epidemiological studies in older adults, and can potentially contribute to attain high response rates.
| S-EPMC7880484 | biostudies-literature
Project description:BACKGROUND:In biomedical prevention trials, correct and consistent use of the investigational product is crucial to determine efficacy. Product adherence in VOICE, a phase 2B randomized trial of a vaginal gel and oral tablets for HIV prevention, was low (~ 34%), yet self-reported adherence and retention was high (> 90%). This analysis from VOICE-D, a post-trial qualitative ancillary study, explores motivations to participate in VOICE, and possible sources of misalignment between the stated priorities of the trial and the participants. METHODS:VOICE-D enrolled 171 former VOICE participants to investigate, among other things, reasons for joining and remaining in the trial. Local language in-depth interviews and focus groups were transcribed and translated into English and coded and analyzed using NVivo. Data on motivation to join obtained from a VOICE termination visit survey of 106 participants were also analyzed to corroborate the VOICE-D findings. RESULTS:Participants primarily participated for personal health benefits (e.g. free healthcare and HIV testing) and reported remaining enrolled from a sense of commitment to the trial. Altruistic motivations were the most commonly stated motivation on the termination visit survey; qualitatively, many of those stating altruistic reasons also desired personal health benefits. Joining for financial reimbursement was not commonly mentioned. Social networks influenced recruitment and spread therapeutic misconception. CONCLUSIONS:Women's participation for personal health benefits highlighted their desire to monitor their HIV risk and overall health. Helping participants view use of investigational products as improving social capital and reminding participants of their study responsibilities may improve trial outcomes. Understanding the reasons for participating in studies will help to ensure alignment between priorities of researchers and participants. TRIAL REGISTRATION:NCT02358616 ; Posted February 9, 2015, retrospectively registered.
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Project description:Implementation research is dominated by studies of investigator-driven implementation of evidence-based practices (EBPs) in community settings. However, systems of care have increasingly driven the scale-up of EBPs through policy and fiscal interventions. Research community partnerships (RCPs) are essential to generating knowledge from these efforts. Interviews were conducted with community stakeholders (system leaders, program managers, therapists) involved in a study of a system-driven implementation of multiple EBPs in children's mental health services. Findings suggest novel considerations in initial engagement phases of an RCP, given the unique set of potentially competing and complementary interests of different stakeholder groups in implementation as usual.
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Project description:BackgroundLittle is known about reasons that influence parents' decision to participate in studies enrolling healthy children. The aim of this observational study was to verify the reasons that lead pregnant women to give their consent or to refuse participation to a newborn cohort study with a long follow up time.MethodsTo prospectively investigate the reasons that lead women to participate, to refuse the participation or to withdraw from a newborn cohort study, three different questionnaires were administered to pregnant women contacted or enrolled in the Phime cohort study, carried out in an Italian Hospital from 2007 to 2010.ResultsPhime study participation was refused by 304 women and 145 withdrew their consent during the follow up. All these women filled in the related questionnaires. Within 632 mothers in follow up at 18 months, 430 filled in the questionnaire on motivation to participate: 97% stated that the main reason was to contribute to research; 96% and 90% stated that they wanted to benefit future babies' and mothers' health. Ninety-six percent of women would appreciate to know the results of analysis carried out on biological samples collected and of the overall study results. One third of the mothers (37%) wanted to be involved in the definition of future similar studies, bringing their experience and their views. Within the 304 women who refused participation, 56% stated that the study was too demanding, 26% was not interested in participating and 18% was concerned about the need to collect biological samples and to be submitted to neurocognitive tests. Fifty-two percent of 145 women who withdrew after enrollment stated that the study was too demanding (52%), and 6% was concerned about the biological samples collection.ConclusionsThe altruistic reason appears to be the main reported by women to decide to participate in a newborn cohort study. The fact that the study was too demanding and the need to collect biological samples are important reasons that lead women to refuse participation or to withdraw from the study. An adequate communication on these aspects should minimize difficulties in enrolment and losses to follow up.
| S-EPMC3636025 | biostudies-literature
Project description:BACKGROUND:Clinical treatment trials are increasingly being designed in primary mitochondrial disease (PMD), a phenotypically and genetically heterogeneous collection of inherited multi- system energy deficiency disorders that lack effective therapy. We sought to identify motivating factors and barriers to clinical trial participation in PMD. METHODS:A survey study was conducted in two independent mitochondrial disease subject cohorts. A discovery cohort invited subjects with well-defined biochemical or molecularly- confirmed PMD followed at a single medical center (CHOP, n = 30/67 (45%) respondents). A replication cohort included self-identified PMD subjects in the Rare Disease Clinical Research Network (RDCRN) national contact registry (n = 290/1119 (26%) respondents). Five-point Likert scale responses were analyzed using descriptive and quantitative statistics. Experienced and prioritized symptoms for trial participation, and patient attitudes toward detailed aspects of clinical trial drug features and study design. RESULTS:PMD subjects experienced an average of 16 symptoms. Muscle weakness, chronic fatigue, and exercise intolerance were the lead symptoms encouraging trial participation. Motivating trial design factors included a self-administered study drug; vitamin, antioxidant, natural or plant-derivative; pills; daily treatment; guaranteed treatment access during and after study; short travel distances; and late-stage (phase 3) participation. Relative trial participation barriers included a new study drug; discontinuation of current medications; disease progression; daily phlebotomy; and requiring participant payment. Treatment trial type or design preferences were not influenced by population age (pediatric versus adult), prior research trial experience, or disease severity. CONCLUSIONS:These data are the first to convey clear PMD subject preferences and priorities to enable improved clinical treatment trial design that cuts across the complex diversity of disease. Partnering with rare disease patient communities is essential to effectively design robust clinical trials that engage patients and enable meaningful evaluation of emerging treatment interventions.
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Project description:BackgroundHigh patient participation in clinical research reduces selection bias and ensures the generalizability of study findings. We explored study-related factors that may influence patients' willingness to participate in research.MethodsWe submitted by mail two vignettes that described clinical research studies - a drug trial and a diagnostic study - to patients recently discharged from hospital and assessed their willingness to participate. We used a factorial design to randomly allocate three study attributes per vignette: in the drug trial, presumed superiority of new drug versus equipoise, public versus industry funding, and random versus non-random treatment allocation; in the diagnostic study, common versus rare disease, genetic versus protein analysis, and automatic reporting of results versus reporting on request.ResultsOf 2600 patients contacted, 1140 (44%) participated. Globally, willingness to participate in a drug trial was lower than in a diagnostic study (44.8% vs. 76.2%; P < 0.001). In the drug trial, participation was significantly higher when the new drug was presented as presumably better than the old (vs. equipoise) and when the study was funded by public sources (vs. industry), but was not affected by the allocation method. None of the factors tested in the diagnostic study was associated with participation.ConclusionsPatients were more likely to participate in a hypothetical observational diagnostic study than in a hypothetical drug trial. Participation in the trial was lower when clinical equipoise was expressed and when the trial was funded by industry. These results suggest that some features of study design can influence participation.
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Project description:The 100,000 Genomes Project is a hybrid clinical and research project in which patients and parents are offered genome sequencing for cancer and rare and inherited disease diagnosis; all participants receive their main findings and contribute their data for research, and are offered optional secondary findings. Our aim was to explore participating parents' attitudes towards and understanding of genome sequencing in this hybrid context. We conducted in-depth telephone interviews with 20 parents of children with rare diseases participating in the 100,000 Genomes Project. Parents were positive about contributing to research, although some had needed reassurance about data protections. Although most felt positive about secondary findings, some could not recall or misunderstood key aspects. Some were also concerned about potential emotional impact of results and a few raised concerns about life insurance implications, and the impact of future legal changes. Participants were generally positive about consent appointments, but several raised concerns about 'information overload' because of deciding about secondary findings at the same time as about the main diagnostic genome sequencing and data contribution. Additional information resources, particularly online tools, were highlighted as potentially useful ways of supporting the consent process. We conclude that parents offered genome sequencing as part of a national hybrid clinical and research project report many positive attitudes and experiences, but also concerns and misunderstandings. Further research is needed on how best to support informed consent, particularly about secondary findings. Additional resources such as online tools might usefully support future genome sequencing consent processes.
| S-EPMC7316711 | biostudies-literature
Project description:This study assessed mothers' perspectives regarding research involvement by their children, factors that might affect perceptions of research risks, and attitudes regarding willingness to enroll children in research. Participants completed a survey on Amazon Mechanical Turk. Mothers were less inclined to enroll children in research involving procedures posing higher risk (regression coefficient = -0.51). Mothers without mental health issues with children without health issues were more sensitive to risk than mothers without mental health issues with children with health issues (estimated difference = 0.49). Mothers with mental health issues were more willing than mothers without mental health issues to enroll children in research (regression coefficient = -0.90). Among mothers with mental health issues, having a child with a health issue was associated with increased willingness to enroll in research, compared with having children without health issues (estimated difference = 0.65).
| S-EPMC7606296 | biostudies-literature
Project description:BackgroundOral public health services are included in primary healthcare. Although oral diseases are preventable, improving oral health has become a concern in many countries. Evidence shows that functioning insurance coverage can significantly increase the use of dental health services, improve quality of services, and reduce financial barriers to utilization. Little evidence exists on households' preferences for dental insurance in Iran. This study seeks to identify the households' preferences for dental insurance in Tehran-Iran.MethodThis is a qualitative study. We interviewed 84 participants who visited selected public and private dental clinics in Tehran-Iran, from October 2018 until January 2019. All interviews were recorded and transcribed verbatim. We used a mixed inductive/deductive approach for thematic analysis of the interviews.ResultsWe identified two main themes and 12 sub-themes: pecuniary attributes (insurance premium, coinsurance, insurance coverage granted, discounting option, reimbursement of expenses), and non-pecuniary attributes (notification status, ethical issues, benefits package, contract providers with health insurance, quality of service centers, administrative process, and dental insurance scheme).ConclusionOur participants considered both pecuniary and non-pecuniary attributes for choosing a dental insurance package. Our findings could help, we envisage, policymakers understand Iranian households' preferences for a dental insurance scheme that they afford to buy.
| S-EPMC9277837 | biostudies-literature