Participatory Health Research Research Articles

Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research

ObjectivesThe overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients...

Exploring the perspectives of community members as research partners in rural and remote areas

BackgroundCommunity engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased barriers to participation in health research and may be unjustly excluded from participation. It is necessary to understand the process of patient and public engagement from the perspective of community members to support partnered research in underserved areas. The aim of this project was to increase understanding on how to include community members from rural and remote areas as partners on research teams.MethodsUsing purposive sampling, we completed semi-structured interviews with a representative sample of 12 community members in rural and remote areas of northern British Columbia, Canada. Interviews were audio recorded and transcribed verbatim. Following an integrated knowledge translation approach, an inductive thematic analysis was completed to incorporate researcher and knowledge user perspectives.ResultsThe factors important to community members for becoming involved in research include: 1) relevance; 2) communication; and 3) empowering participation. The analysis suggests projects must be relevant to both communities and individuals. Most participants stated that they would not be interested in becoming partners on research projects that did not have a direct benefit or value for their communities. Participants expressed the need for clear expectations and clarification of preferred communication mechanisms. Communication must be regular, appropriate in length and content, and written in a language that is accessible. It is essential to ensure that community members are recognized as subject matter experts, to provide appropriate training on the research process, and to use research outcomes to support decision making.ConclusionsTo engage research partners in rural and remote communities, research questions and outcomes should be co-produced with community members. In-person relationships can help establish trust and bidirectional communication mechanisms are prudent throughout the research process, including the appropriate sharing of research findings. Although this project did not include community members as research team members or in the co-production of this research article, we present guidelines for research teams interested in adding a patient or public perspective to their integrated knowledge translation teams.

Knowledge, information needs and behavior regarding HIV and sexually transmitted infections among migrants from sub-Saharan Africa living in Germany: Results of a participatory health research survey.

BackgroundA total of 3,419 new HIV diagnoses were reported in Germany in 2016, with migrants from sub-Saharan Africa (misSA) accounting for 14.1%. To understand the driving factors behind the epidemiological situation, we conducted a quantitative cross-sectional survey on knowledge, attitudes, behavior, and practices regarding HIV and sexually transmitted infections (STIs) among misSA living in six German cities utilizing participatory health research.MethodsParticipants were recruited by peer researchers. Levels of knowledge, information needs, and preferred methods of information dissemination were analyzed to inform future prevention planning. Additionally, we analyzed sexual behavior and other risk factors for contracting HIV and STIs. The results may facilitate the formulation of targeted prevention messages in the future.ResultsWe included 2,432 participants in the analysis. General knowledge about HIV was adequate, as 86.9% were aware of the presented information. Statements about HIV co-infections were prior knowledge for 53.4% of the participants and about German HIV policies and HIV testing for 54.7%. Knowledge about other STIs differed, ranging from 69.6% who have ever heard of gonorrhea to 23.8% who have ever heard of genital warts. Groups with particular knowledge gaps were i) younger misSA, ii) recent migrants, iii) misSA without regular access to the German health care system, iv) misSA of lower socioeconomic status, and v) misSA with Muslim religious affiliation. The majority of participants reported information needs (72.8%), and 71.3% wanted to obtain this information from health professionals. Male misSA were more likely to report five or more sexual partners compared to females. Less than half of participants reported always using condoms with non-steady sexual partners (46.8%). Reasons for not using condoms differed between males and females. A considerable proportion of females (16.3%) and males (6.8%) experienced sexualized violence. More than one fourth of women (26.9%) were affected by female genital mutilation/cutting.DiscussionFuture prevention planning should focus on sub-groups with particular knowledge gaps, recognizing their preferred methods of information dissemination. Prevention messages for male misSA should focus on their own risk perception and for female misSA on empowerment, e.g. to negotiate condom use.

Digital Storytelling and Validity Criteria

The authors explore the validity criteria of digital storytelling when applied as a research method in Participatory Health Research. The article begins with an overview of digital storytelling as a participatory visual research method. To demonstrate the validity criteria of digital storytelling, what follows is a reflexive account of a 2-year Participatory Health Research study that used digital storytelling as a research method to investigate treatment experiences among breast cancer patients. The authors offer a suggested summary of validity criteria for digital storytelling when applied to Participatory Health Research and describe the application of participatory, intersubjective, catalytic, contextual, empathic, and ethical validity. The article concludes with a discussion about resources and distribution.

Supporting women leaving prison through peer health mentoring: a participatory health research study.

During the transition between prison and community, people are at greatly increased risk for adverse health outcomes. This study describes a peer health mentoring program that supports women in the first 3 days after their release from a provincial correctional facility in British Columbia. We used a participatory health research framework to develop multimethod processes to describe the Unlocking the Gates Peer Health Mentoring Program. Mentors are women with incarceration experience. Between 2013 and 2018, women released from Alouette Correctional Centre for Women were invited to access the program. All program clients were invited to participate in the surveys and interviews. We analyzed survey and interview data using descriptive analysis for quantitative data and content analysis for qualitative data. There were 346 program contacts from 340 women over the study period. For every contact, a telephone interview was conducted. Among the 346 contacts, 173 women met their mentor, of whom 172 (99.4%) completed the intake and consent forms. A total of 105 women (61.0%) completed a program activity feedback survey at the end of the mentoring period. Women identified a range of needed supports during the transition from prison to community, including access to clothing, social assistance, housing and health care. Participants described a mix of emotions surrounding release, including excitement, anxiety, hope, and a wish for understanding and support. Within 3 days of release, 49 participants (46.7%) had accessed a family physician, and 89 (84.8%) had accessed at least 1 community resource. Ninety-eight participants (93.3%) reported that their mentor assisted them in accessing community resources. Peer health mentoring provides valuable, multifaceted support in helping women to navigate health and social services and to meet their basic needs. Strengthening health supports during the transition from prison to community is critical to promoting the health and well-being of women leaving prison.

Sowing Seeds to Harvest Healthier Adults: The Working Principles and Impact of Participatory Health Research with Children in a Primary School Context.

Participatory research on health-related topics with children is promising but current literature offers limited guidance on how to involve children and falls short on the reporting impact. The purpose of this article is to heighten our understanding of the working principles and impact of participatory health research (PHR) with children. We completed a PHR project in two primary schools, which included children from a multiethnic, deprived neighborhood in the second largest city in The Netherlands over a period of three school years (2016–2019). The impact on the children’s subjective health has been measured via process evaluation using qualitative and quantitative methods from the perspectives of all involved (children, their teachers, parents, and community partners). The main working principles included: Experiential learning; addressing uncomfortable issues; stepping outside your environment; and keeping it simple. Participatory actions valued most by the children included: Walking tours, photovoice, foodlabs, sportlabs, and to a lesser extent: Making a newspaper, mindfulness, and Capoeira. The project reached and engaged many children, parents, teachers, and community partners into healthy lifestyles and broadened and deepened the children’s awareness and understanding of health behavior. ‘Sowing seeds’ is the metaphor that captures the broader impact of this project: Planting seeds to harvest healthier adults.

Talking About Public Health With African American Men: Perceptions of Environmental Health and Infertility.

While the past two decades have seen rapid advances in research demonstrating links between environmental health and reproductive capacity, African American men have largely been overlooked as study participants. To give voice to the perceptions of urban African American men, the present qualitative study conducted focus groups of men recruited from street- and internet-based advertisements in Washington, DC. Participants were asked for their perspectives on their environment, reproductive health and fertility, and factors that would influence their participation in public health research. Participants expressed concern about ubiquitous environmental exposures characteristic of their living environments, which they attributed in part to gentrification and urban development. Infertility was seen as a threat to masculinity and a taboo subject in the African American community and several participants shared personal stories describing a general code of silence about the subject. Each group offered multiple suggestions for recruiting African American men into research studies; facilitators for study participation included cultural relevance, incentives, transparent communication, internet- and community-based recruitment, and use of African Americans and/or recruiters of color as part of the research team. When asked whether participants would participate in a hypothetical study on fertility that involved providing a sperm sample, there was a mixed reaction, with some expressing concern about how such a sample would be used and others describing a few facilitators for participation in such a study. These are unique perspectives that are largely missing from current-day evidence on the inclusion of African American men in environmental health and reproductive health research.

Effects of a Health Education and Research Participation Enhancement Program on Participation and Autonomy in Diverse Older Adults.

Social engagement and autonomy are vital for life satisfaction among older adults. We measured multiple domains of social participation and autonomy in 120 adults over age 55 years that were part of an educational program at pretest, posttest, and follow-up. Quantitative and qualitative data were analyzed for differences between Black and White participants. White participants reported worse engagement in the family role domain and a lower Total Participation Score at posttest than pretest; however, scores returned to baseline levels by follow-up. Black participants reported better levels of participation in the social relationship domain at follow-up than at pretest. We found no evidence of qualitative differences between racial groups. Barriers to social participation and autonomy included challenges related to health, ageism, transportation, and mobility. Adequate housing, social support, socialization, and perception of individual utility contributed to feeling independent. Educational programs for older adults may provide an opportunity for increased social participation.

Releasing hope—Women’s stories of transition from prison to community

This article embodies two key narratives among many that have emerged from a 14-year research project. The first narrative is of a community-engaged solution, a peer health mentor program, which was imagined during a prison participatory health and university research project, as described in Arresting Hope. The second is the narrative of Releasing Hope, a collection of writings by women with incarceration experience sharing their experiences, their challenges, and the barriers they face as they seek to heal from fractured and interrupted lives. A unique form of collaboration, innovation, research creation, and knowledge dissemination, Releasing Hope invites readers to reconsider communal perceptions, attitudes, and resistance towards those with incarceration experience, who struggle each day to be seen, not as former criminals, but as women capable of reimagining and enacting new lives. These two narratives illustrate the possibilities present when women are empowered with voice and agency. In the article, we aim to capture the spirit of both projects, in the interspersing of text and image, a collage of voices that speak to the experiences and learning that emerged through these two research ventures.

Citizen Science Models in Health Research: an Australian Commentary.

This qualitative review explores how established citizen science models can inform and support meaningful engagement of public in health research in Australia. In particular, with the growth in participatory health research approaches and increasing consumer participation in contributing to this research through digital technologies, there are gaps in our understanding of best practice in health and biomedical citizen science research to address these paradigm shifts. Notable gaps are how we might more clearly define the parameters of such research and which citizen science models might best support digitally-enabled participation falling within these. Further work in this area is expected to lead to how established citizen science methods may help improve the quality of and the translation of public engagement in health research.

A Cross-sectional Descriptive Study to Assess the Knowledge, Attitude and Practices towards Voluntary Participation in Health Research among the Medical Undergraduate Students

Background and Aim: Research training at the level of undergraduate is found to be a critical component of medical school curriculum. Undergraduate medical students routinely participate as volunteers in both observational as well as survey studies conducted at medical institutions. Their knowledge, attitude and the practices they follow in voluntary participation in a research project as a subject is unknown. Here in this study we tried, 1. To assess the level of knowledge, attitude and practices towards voluntary participation in medical research among the undergraduate medical students. 2. To analyse the gender differences existing in the opinions given by the above respondents. Methods: A cross sectional descriptive survey using a pretested questionnaire was done among the students with stratified random sampling and the students were selected from the different batches .The study was carried out in the campus for a period of 45 days among 200 students of both gender. Statistical significance was calculated using Graph pad prism v5.0. Results: Ninety percentage of the students agreed for the need for voluntary participation in medical research.55% of them volunteered as subjects due to their peer pressure only.78% never ever participated in any research.95% of the female participants expressed the importance of voluntary participation in research (p<0.05). Conclusion: There is an expectation among the students to participate and acquire knowledge and skill through research activities. Majority of them expect a research integrated curriculum that could cater their enrollment and participation in research activities. Differences in opinions among the gender was not seen.

Intersectionality in the Liminal Space: Researching Caribbean Women's Health in the UK Context.

African Caribbean women in the UK who are diagnosed with chronic illnesses that are related to overweight and obesity are more likely to experience poorer outcomes than their White British counterparts. It is then important to increase understandings of how women from this ethnic group perceive health with relation to body shape and size so that interventions can be developed to prevent the development of such conditions and to improve outcomes. As such, it is important to develop research methodology that encourages participation in health research from African Caribbean women and enables the capture of in-depth data that gives insight into the nuances of health understandings related to the body and the social realities in which they exist. This paper details the methodological framework of The Big Talk project, an investigation that sought to develop a novel approach to conducting health research with seldom heard communities. The concept of intersectionality, as used in Critical Race Theory, was applied as a theoretical tool for exploring the dynamics of societal power and where this power intersects across the lived realities of race, ethnicity, gender, sexuality, (dis)ability, and class. For this research, these intersections are explored for African Caribbean women and how they relate to concepts of health, body shape, and size. This research study was conducted in spaces identified as liminal spaces for African Caribbean women: talk radio programmes; hairdressing salons and; local community groups. A Black feminist epistemological approach was used to facilitate the collection of data. The data that emerged from these liminal spaces are not necessarily definitive answers on health for African Caribbean women, but rather illuminate alternative ways of understanding the social world from the perspective of those subject to power. This phenomenon makes liminal spaces intersectional in their construction and in taking such an approach to analysis could enable finely grained details of discourses regarding health, wellness and the body to be gathered. The importance of this understanding can help to improve preventive health interventions for African Caribbean women.

Community-based participatory health research: principles and practice

Abstract Community-based participatory research (CBPR) is a collaborative approach to research that aims to improve the health of marginalized communities and reduce health disparities. It starts with a topic of concern for the community and involves iterative cycles of action and reflection to initiate change. Community members are involved as partners and trained as peer researchers to take an active role in the research process. Processes of capacity building and empowerment play a prominent role. As a general principle, participatory research does not primarily focus on health problems, but pays at least equal attention to the resources and capacities of communities. It places a strong focus on developing trust and reciprocity in research relationships. Regarding methodology, various empirical research methods are used in CBPR study designs, including qualitative, quantitative, mixed-methods and arts-based methods. Arts-based methods such as photovoice, digital storytelling, mapping and drawings facilitate the expression of lived experience, including sensitive aspects, through creative verbal and non-verbal means. These methods expand the available means of expression and as such are highly valuable in research fields where verbal communication is challenged by language barriers and diverse cultural backgrounds as well as sensitive topics and experiences. Participatory health research has been conducted with diverse migrant and refugee groups internationally. Due to legal and other reasons, refugees may be limited in their capacities for participation. The presentation will discuss the strengths and limitations of CBPR including structural obstacles to equitable partnerships.

Workshop: Active participation of migrants, refugees, and ethnic minorities in public health research

Abstract To introduce the relevance, benefits and challenges of participatory approaches in public health research addressing issues of migrant and refugee health. Participation of stakeholders has a long tradition in fields of public health research, in particular in community-based research and health promotion. Today, increasing demands of grant agencies and policymakers in Europe challenge researchers to include stakeholders in all processes of health research. Active participation of migrants and refugees poses complex challenges for public health research including but, going beyond language problems and risks of stereotyping. The specific objectives of this workshop are: (1) to introduce current approaches for participation and their adaptability for the context of health research with migrants and refugees, (2) to explore participation in three projects that deal with issues like improving quality health care among chronically ill women with immigration background, introducing a health mediator model for refugees as well as ethical issues in participatory research with refugees and ethnic minority groups and (3) to discuss benefits and challenges of participatory approaches intended to improve health and health care services of specific groups. The workshop will start with an introduction providing a short overview of definitions and key concepts. Substantive presentations showcase three participatory projects in migrant health. A panel discussion, led by experienced moderators, with Prof Thomas Abel (PI of the MIWOCA project presented), Prof Antonio Chiarenza (WHO-HPH Task Force on Migration, Equity &amp; Diversity, member of the Steering Committee of the EUPHA section on Migrant Health), Prof Luis Saboga-Nunes (EUPHA health promotion section) and Prof Sibel Sakarya (Department of Public Health Koç University) will address benefits and challenges of participation in migrant and refugee health research. The panel will open into a discussion to integrate audience’s experience and questions on participatory research. The workshop will be closed by the chair’s summary of lessons learnt and perspectives for future directions. Key messages Public health research for and with migrants and refugees poses basic and specific challenges. Experience with PR demonstrates the benefits of migrants’ and refugees’ active participation and the importance of adequate contextualizing of the problems and potential solutions.

Workshop: Better ask those who are concerned: co-creation in participatory epidemiology and health promotion

Abstract Objectives The hallmark of participatory research is the establishment of equitable research partnerships with a diverse group of stakeholders such as public health professionals, health activists and community representatives. This includes co-creation as a guiding principle that informs several aspects of the research process. Originally, co-creation is a concept from management science and software design and is focused on achieving synergistic effects through user participation in design processes. Co-creation in participatory epidemiology and health promotion aims to improve the life of those who are subjects of research by giving them a stake how studies are carried out, respectively how health promoting services, programmes or products are designed and provided. However, implementing and realizing co-creation is challenging. Participation asks for a systematic reflection of underlying power relations in the research process through dialog, recursive methods of understanding, and joint planning. This skills building seminar will present relevant co-creation concepts and methods. Additionally, illustrative examples from research practice are provided and will outline ways for implementing co-creation in the context of participatory epidemiology and health promotion. The seminar starts with a brief introduction on epistemological principles and ethical norms of participatory health research and state of the art definitions of co-creation. This presentation is followed by an introduction of how co-creation is impacting epidemiological research with regard to several aspects of the research process. Next, a project is presented in which co-creation informed the development of a virtual reality game in the field of alcohol prevention. Finally, participants will be split in two groups to have the opportunity to share thoughts on certain aspects of participatory research and co-creation in a poster discussion. More specifically, we aim to discuss: Does co-creation differ in the contexts of participatory epidemiology and health promotion? And if so how?What is needed to realize co-creation processes in practice? The seminar targets everyone working in the field of population health monitoring and health promotion. The timetable is as follows: Introduction, principles and definitions (15 min), participatory epidemiology and co-creation (15 min), co-designing in prevention and health promotion (15 min), poster discussions (30 min), plenary discussion and roundup (15 min). Main messages Co-creation is a way to improve the relevance of research findings, services and products for public health practice and the involved communities.Co-creation processes are vital to embrace the creativity of users and to ensure relevance and community ownership for health promotion programmes and services. Key messages Co-creation is a way to improve the relevance of research findings and products for various stakeholders. Co-creation is vital to embrace users’ creativity and to ensure community ownership.

Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness

ABSTRACTVulnerability is a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have not been enriched thus far by stakeholder perspectives. This oversight has important consequences for the ways in which we frame vulnerability. It misses the far-reaching insights and experiential knowledge of mental health research participants whose experiences this ethics concept ultimately seeks to capture. In view of this gap, our study combines a pragmatist ethics framework and interpretive phenomenological analysis of qualitative interviews to explore user perspectives on the notion of vulnerability through the lived experiences of mental health research participants and patient-advocates. Importantly, these perspectives offer essential clues to address the difficulties of operationalizing concerns for vulnerability in concrete and practical ways. They help refine our understanding of this key ethics concept.

Facilitating User Participation in Digital Health Research: The mHealth Impact Registry

Background The proliferation of technology galvanizes providers, researchers, and entrepreneurs to revolutionize health care and care delivery with diverse audiences. Digital health provides promise in improving health outcomes; however, the pace of technology requires rapid research to remain relevant in the marketplace. User experience (UX) research provides critical information about patient/client preferences while rigorous research trials demonstrate digital health efficacy. Despite the need for such research, the recruitment and enrollment process for digital health research remains time consuming and expensive, particularly when engaging underrepresented populations. Developed in the Colorado School of Public Health, the mHealth Impact Registry is a newly launched platform designed for rapid and responsive recruitment of participants for digital health research studies. While the use of registries in research is robust, the application in digital health research is quite limited. Objective This poster illustrates the development and testing of the mHealth Impact Registry’s Web-based platform, health status survey, mobile app, and participant database to reach underrepresented populations in digital health research. Methods Formative methods used a user centered approach to document user preferences for Registry design followed by iterative testing to ensure usability and navigability. Results End-user feedback was captured from multiple stakeholder groups (ie, Patient and Family Research Advisory Panel and mHealth Community Advisory Board) to refine recruitment strategy (ie, letters, video development). A health status survey was developed in both English and Spanish using the online software (ie, Qualtrics) that informs the back-end database. A detailed requirements document outlined technical and functional requirements for the mobile app (ie, iOS and Android) and Web-based platform (ie, Wordpress and Amazon Web Services). Conclusions Due to the need for rapid, rigorous, and inclusive research in digital health, a registry containing a pool of diverse participants would not only accelerate the recruitment and enrollment process but would also help to improve the reach and engagement of digital health solutions for underrepresented populations. The mHealth Impact Registry would house diverse participants, supporting quick enrollment and active participation in studies for which they are eligible. Improving the accessibility of participants and the speed of enrollment has promise in ensuring digital health solutions are relevant upon dissemination and commercialization.

Applying participatory health research elements in rural end-of-life research: reflections on conducting in-depth Interviews with participants on sensitive topics

Gegenstand des Forschungsprojekts Living Loving Dying war es, die Versorgung am Lebensende und die Trauerbewaltigung fur Sterbende und ihre Angehorigen in landlichen Regionen zu verbessern. Teilnehmende waren Personen, die Sterbende begleitet hatten und in Gebieten mit geringer Einwohner*innenzahl und in relativer geografischer Isolation lebten. Die Datenerhebung zu derart sensitiven Themen mit Menschen, die immer noch von Tod und Trauer betroffen waren, erforderte die Nutzung entsprechen sensitiver Methoden. Wichtig ist auch, dass diese Menschen sicher sein konnen, dass ihre Stimme gehort wird und dass sie zu positiven Veranderungen fur andere beitragen konnen. Vor diesem Hintergrund haben wir sie gebeten, als Community-Partner*innen an der Studie teilzunehmen, fur die wir ein deskriptives qualitatives Design gewahlt und partizipative Elemente in die Datenerhebung mittels teilstrukturierter Interviews einbezogen haben. Dabei war die nicht-hierarchische Beziehung zwischen uns Forschenden und den Partner*innen von herausragender Bedeutung gerade angesichts dieser vulnerablen Gruppe. In dem Beitrag reflektieren wird die pragmatischen und ethischen Erwagungen des Methodeneinsatzes fur die landliche Lebensende-Forschung.

1º plano municipal de Segurança Alimentar e Nutricional de São Paulo/SP (PLAMSAN)

A elaboração e publicação do 1º Plano Municipal de Segurança Alimentar e Nutricional de São Paulo, o PLAMSAN 2016-2020, evidencia avanços da Segurança Alimentar e Nutricional no cenário municipal. O presente estudo apoiou-se na triangulação de métodos, envolvendo as seguintes técnicas: observação participante, entrevista com informante-chave, constructo de um modelo lógico. A metodologia regeu-se por critérios de validade da pesquisa participativa em saúde. Verificou-se que a participação social foi um dos mecanismos utilizados para envolver governo e população, a partir do estabelecimento de compromissos voltados à consolidação desta política pública, destacando os conselhos municipais como protagonistas do processo analisado. A intersetorialidade ocorreu devido à composição da Câmara Intersecretarial de Segurança Alimentar e Nutricional (CAISAN Municipal), envolvendo sete secretarias municipais, e aos esforços de quem liderou o processo, como os conselheiros municipais. Conclui-se que a descentralização das ações permitiu que as propostas locais fossem contempladas no plano. A participação social e a intersetorialidade, princípios da Promoção da Saúde, foram esteio do processo contribuindo para o êxito da experiência, a qual demonstrou viabilidade para ser replicada em outros municípios de qualquer cidade no mundo.&#x0D;

Parent Perceptions of and Preferences for Participation in Child Health Research: Results from a Pediatric Practice-Based Research Network

Recruitment efforts for child health research are often based on assumptions, therefore improving knowledge about parents' perceptions and preferences could enhance engagement. 1) To describe parents' perceptions about and preferences for participation in child health research within a pediatric practice-based research network (PBRN), and 2) to investigate any associations with the presence of on-site PBRN research staff, office location, and child age. We conducted a 2-phase study with a convenience sample of parents from diverse office settings. Phase 1 was a qualitative assessment using semistructured, in-person interviews. Phase 2 consisted of a quantitative self-administered survey assessing: 1) perceptions of importance, benefits/motivations, and risks/barriers of child health research, and 2) preferences for recruitment method and enrollment location. Parents (n = 627) uniformly perceived child health research to be important in prevention (89%), diagnosis (89%), and treatment (92%). They were motivated to participate most commonly by altruism and rarely by compensation. Parents perceived side effects (60%), discomfort (52%), and time (45%) as the main risks of participation. Most parents preferred to learn about research opportunities at their pediatric office (70%), and if interested, to enroll their child in their pediatric office (57%) or in their home (52%). Parents were significantly more altruistic and interested in participation in offices with on-site PBRN research staff and greater proximity to the University. Child health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff.