Identify
Explore
Discover
Discuss
Summarise
Describe
Last, format your objectives into a numbered list. This is because when you write your thesis or dissertation, you will at times need to make reference to a specific research objective; structuring your research objectives in a numbered list will provide a clear way of doing this.
To bring all this together, let’s compare the first research objective in the previous example with the above guidance:
Research Objective:
1. Develop finite element models using explicit dynamics to mimic mallet blows during cup/shell insertion, initially using simplified experimentally validated foam models to represent the acetabulum.
Checking Against Recommended Approach:
Q: Is it specific? A: Yes, it is clear what the student intends to do (produce a finite element model), why they intend to do it (mimic cup/shell blows) and their parameters have been well-defined ( using simplified experimentally validated foam models to represent the acetabulum ).
Q: Is it measurable? A: Yes, it is clear that the research objective will be achieved once the finite element model is complete.
Q: Is it achievable? A: Yes, provided the student has access to a computer lab, modelling software and laboratory data.
Q: Is it relevant? A: Yes, mimicking impacts to a cup/shell is fundamental to the overall aim of understanding how they deform when impacted upon.
Q: Is it timebound? A: Yes, it is possible to create a limited-scope finite element model in a relatively short time, especially if you already have experience in modelling.
Q: Does it start with a verb? A: Yes, it starts with ‘develop’, which makes the intent of the objective immediately clear.
Q: Is it a numbered list? A: Yes, it is the first research objective in a list of eight.
1. making your research aim too broad.
Having a research aim too broad becomes very difficult to achieve. Normally, this occurs when a student develops their research aim before they have a good understanding of what they want to research. Remember that at the end of your project and during your viva defence , you will have to prove that you have achieved your research aims; if they are too broad, this will be an almost impossible task. In the early stages of your research project, your priority should be to narrow your study to a specific area. A good way to do this is to take the time to study existing literature, question their current approaches, findings and limitations, and consider whether there are any recurring gaps that could be investigated .
Note: Achieving a set of aims does not necessarily mean proving or disproving a theory or hypothesis, even if your research aim was to, but having done enough work to provide a useful and original insight into the principles that underlie your research aim.
Be realistic about what you can achieve in the time you have available. It is natural to want to set ambitious research objectives that require sophisticated data collection and analysis, but only completing this with six months before the end of your PhD registration period is not a worthwhile trade-off.
Each research objective should have its own purpose and distinct measurable outcome. To this effect, a common mistake is to form research objectives which have large amounts of overlap. This makes it difficult to determine when an objective is truly complete, and also presents challenges in estimating the duration of objectives when creating your project timeline. It also makes it difficult to structure your thesis into unique chapters, making it more challenging for you to write and for your audience to read.
Fortunately, this oversight can be easily avoided by using SMART objectives.
Hopefully, you now have a good idea of how to create an effective set of aims and objectives for your research project, whether it be a thesis, dissertation or research paper. While it may be tempting to dive directly into your research, spending time on getting your aims and objectives right will give your research clear direction. This won’t only reduce the likelihood of problems arising later down the line, but will also lead to a more thorough and coherent research project.
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13.4.1 What other sources should you consult?
Summary of Study Session 13
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The final part of clarifying your research project involves thinking in more detail about your research objectives . Research objectives should be closely related to the statement of the problem and summarise what you hope will be achieved by the study. For example, if the problem identified is low utilisation of antenatal care services, the general objective of the study could be to identify the reasons for this low uptake, in order to find ways of improving it.
Writing your research objectives clearly helps to:
What do you think might happen if you started a research project, but hadn’t written any clear research objectives?
Without clearly written research objectives, you might be confused about the limits of the study, what data should be collected, or how to conduct the research.
Objectives can be general or specific. The general objective of your study states what you expect to achieve in general terms. Specific objectives break down the general objective into smaller, logically connected parts that systematically address the various aspects of the problem. Your specific objectives should specify exactly what you will do in each phase of your study, how, where, when and for what purpose.
Your objectives should be stated using action verbs that are specific enough to be measured, for example: to compare, to calculate, to assess, to determine, to verify, to calculate, to describe, to explain, etc. Avoid the use of vague non-active verbs such as: to appreciate, to understand, to believe, to study, etc., because it is difficult to evaluate whether they have been achieved.
A research study designed to assess the accessibility and acceptability of the Voluntary Counselling and Testing (VCT) Services for HIV infection in kebele X had the following general and specific objectives:
General objective: To identify factors that affects the acceptability of VCT services and to assess community attitudes towards comprehensive care and support for people living with HIV/AIDS.
Specific objectives:
What is the difference between the specific objectives and the general objective of a research project? You can use the example in Case Study 13.3 to help you answer this question.
Specific objectives are detailed objectives that describe what will be researched during the study, whereas the general objective is a much broader statement about what the study aims to achieve overall.
In the next study session, we will move on to teach you about research strategies and alternative study designs that you may choose to conduct for a small-scale research project in your community.
For further information, take a look at our frequently asked questions which may give you the support you need.
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Introduction: Research is a systematic and structured investigation that seeks to expand knowledge, uncover new insights, and provide evidence-based understanding in various fields. It is vital in advancing human understanding, addressing complex problems, and driving innovation. Research encompasses a wide range of methodologies, including empirical studies, experiments, surveys, and theoretical analyses, conducted by researchers across academic, scientific, and professional domains. New discoveries are made through research, theories are developed and tested, and practical solutions are generated. The impact of research is far-reaching, influencing advancements in technology, healthcare, social sciences, environmental conservation, and more. It drives progress, informs policy decisions, and shapes the future by providing a solid foundation of reliable and verified knowledge. The importance of research cannot be overstated, as it drives human knowledge forward and fosters societal development and improvement. Types of Research
The primary objective of the research is to contribute to the existing body of knowledge by uncovering new insights, validating existing theories, or challenging prevailing assumptions. It is driven by the pursuit of truth, accuracy, and evidence-based understanding.
Research can take various forms, depending on the discipline and the nature of the inquiry. It can be empirical, involving the collection and analysis of data through experiments, surveys, observations, or interviews. It can also be theoretical, involving the critical analysis of existing literature and concepts to develop new frameworks or models.
The research process is characterized by systematic and organized steps. It begins with identifying a research problem or topic of interest, followed by an extensive literature review to understand the existing knowledge and identify gaps. Research questions or hypotheses are formulated, and a research design is developed to guide data collection and analysis.
Data collection methods can vary widely, ranging from quantitative approaches such as surveys or experiments to qualitative approaches such as interviews or case studies. Researchers analyze the collected data using appropriate statistical or qualitative analysis techniques to draw meaningful conclusions.
One of the key aspects of research is its emphasis on objectivity and rigor. Researchers strive to minimize bias, ensure the reliability and validity of findings, and maintain ethical standards in their research practices.
The impact of research extends far beyond the academic realm. Research findings inform decision-making processes in various sectors, including healthcare, policy development, business strategies, environmental conservation, and social sciences. It drives technological advancements, fosters innovation, and provides the foundation for evidence-based practices.
Furthermore, research is an iterative process, with new studies building upon and refining existing knowledge. It is a collaborative endeavor, often involving interdisciplinary collaborations and the exchange of ideas among researchers worldwide.
Research is a systematic and organized investigation conducted to expand knowledge, gain a deeper understanding, and generate new insights in a specific field. It involves rigorous and organized data collection, analysis, and interpretation to address research questions or hypotheses. The pursuit of new information drives research, the validation of existing theories, or the exploration of new perspectives. It employs various methodologies to gather and analyze data, including empirical studies, experiments, surveys, interviews, or theoretical analyses. The ultimate goal of the research is to contribute to the existing body of knowledge, advance understanding, and inform decision-making processes across academic, scientific, and professional domains.
Kasi (2009) 1 defines “Research is, therefore, a method for investigating and collecting information aimed at the discovery of new facts or interpretation of existing information, to discover or revise facts, theories, and applications.”
Research is stated by Gina Wisker 1 as “Research is about asking and beginning to answer questions, seeking knowledge and understanding of the world and its processes, and testing assumptions and beliefs.”
Redman and Mory define research as a “systematized effort to gain new knowledge.” 2
Burns (1997) defines research as “a systematic investigation to find answers to a problem.” 2
“The word research is composed of two syllables, re and search. The dictionary defines the former as a prefix meaning again, anew, or over again and the latter as a verb meaning to examine closely and carefully, to test and try, or to probe. Together, they form a noun describing a careful, systematic, patient study and investigation in some field of knowledge undertaken to establish facts or principles.” (Grinnell 1993) 2
The research objectives can vary depending on the specific field of study, the nature of the research, and the researcher’s goals. However, some common purposes of the research include:
C.R. Kothari, a renowned Indian researcher and author, has proposed several types of research in his book Research Methodology: Methods and Techniques . According to Kothari, research can be categorized into the following types:
The significance of research cannot be overstated, as it serves as the cornerstone of progress and development in various fields. Whether in science, technology, social sciences, or humanities, research is vital in advancing knowledge, addressing problems, and shaping society.
One of the primary significances of research is its ability to expand our understanding and knowledge base. Through rigorous investigation, research uncovers new information, theories, and insights that contribute to the existing body of knowledge. It allows us to delve deeper into complex phenomena, explore uncharted territories, and uncover hidden connections. This expansion of knowledge forms the basis for innovation, development, and the evolution of society.
Research also serves as a powerful tool for problem-solving. It enables us to identify and address pressing issues, whether they are in healthcare, education, economics, or any other field. By systematically examining problems, collecting and analyzing relevant data, and developing evidence-based solutions, research provides the means to overcome challenges and improve existing practices. It empowers us to make informed decisions, develop effective strategies, and allocate resources wisely.
Furthermore, research plays a critical role in informing decision-making processes. Policymakers, business leaders, and organizations rely on research findings to guide their choices, shape policies, and plan for the future. Research provides reliable and credible information, allowing decision-makers to navigate complex issues more confidently and accurately. It serves as a bridge between theory and practice, translating abstract concepts into tangible outcomes that benefit society.
Innovation and improvement are other significant outcomes of research. Research drives innovation by exploring new ideas, pushing boundaries, and challenging established norms. It leads to the developing of new technologies, products, and services that improve our quality of life. Research also fosters improvements in existing practices and processes by identifying inefficiencies, gaps, and areas for enhancement. Through research, we continuously strive to find better, more efficient ways of doing things.
Research has a profound impact on society as a whole. It addresses social issues, informs public policies, and promotes positive social change. Research provides evidence-based solutions that address societal challenges, from healthcare interventions to educational reforms. It influences public opinion, shapes cultural norms, and contributes to communities’ well-being and progress.
Moreover, research plays a crucial role in validating and challenging existing knowledge. It provides empirical evidence that supports or challenges established theories and concepts. Through rigorous scrutiny and critical analysis, research ensures that knowledge constantly evolves, grows, and adapts to new information. It encourages intellectual discourse, promotes healthy skepticism, and encourages a culture of lifelong learning.
References:
What is citation, what is scholarly communication, literature review, patent: an overview, thesaurus construction and its role in indexing, what are bibliometrics.
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Smith Alex is a committed data enthusiast and an aspiring leader in the domain of data analytics. With a foundation in engineering and practical experience in the field of data science
Summary: This article delves into qualitative and quantitative data, defining each type and highlighting their key differences. It discusses when to use each data type, the benefits of integrating both, and the challenges researchers face. Understanding these concepts is crucial for effective research design and achieving comprehensive insights.
In the realm of research and Data Analysis , two fundamental types of data play pivotal roles: qualitative and quantitative data. Understanding the distinctions between these two categories is essential for researchers, analysts, and decision-makers alike, as each type serves different purposes and is suited to various contexts.
This article will explore the definitions, characteristics, uses, and challenges associated with both qualitative and quantitative data, providing a comprehensive overview for anyone looking to enhance their understanding of data collection and analysis.
Read More: Exploring 5 Statistical Data Analysis Techniques with Real-World Examples
Qualitative data is non-numerical in nature and is primarily concerned with understanding the qualities, characteristics, and attributes of a subject.
This type of data is descriptive and often involves collecting information through methods such as interviews, focus groups, observations, and open-ended survey questions. The goal of qualitative data is to gain insights into the underlying motivations, opinions, and experiences of individuals or groups.
Characteristics of Qualitative Data
Examples of Qualitative Data
Quantitative data, in contrast, is numerical and can be measured or counted. This type of data is often used to quantify variables and analyse relationships between them. Quantitative research typically employs statistical methods to test hypotheses, identify patterns, and make predictions based on numerical data.
Characteristics of Quantitative Data
Examples of Quantitative Data
Understanding the differences between qualitative and quantitative data is crucial for selecting the appropriate research methods and analysis techniques. Here are some key distinctions:
Qualitative data is particularly useful in situations where the research aims to explore complex phenomena, understand human behaviour, or generate new theories. Here are some scenarios where qualitative data is the preferred choice:
When investigating a new area of study where little is known, qualitative methods can help uncover insights and generate hypotheses.
Qualitative data is valuable for capturing the context surrounding a particular phenomenon, providing depth to the analysis.
When the goal is to understand why individuals think or behave in a certain way, qualitative methods such as interviews can provide rich, nuanced insights.
Qualitative research can help in the development of theories by exploring relationships and patterns that quantitative methods may overlook.
Quantitative data is best suited for research that requires measurement, comparison, and statistical analysis. Here are some situations where quantitative data is the preferred choice:
When researchers have specific hypotheses to test , quantitative methods allow for rigorous statistical analysis to confirm or reject these hypotheses.
Quantitative data is ideal for measuring variables and establishing relationships between them, making it useful for experiments and surveys.
When the goal is to generalise findings to a larger population, quantitative research provides the necessary data to support such conclusions.
Quantitative analysis can reveal patterns and trends in data that can inform decision-making and policy development.
While qualitative and quantitative data are distinct, they can be effectively integrated to provide a more comprehensive understanding of a research question. This mixed-methods approach combines the strengths of both types of data, allowing researchers to triangulate findings and gain deeper insights.
Integrating qualitative and quantitative data enhances research by combining numerical analysis with rich, descriptive insights. This mixed-methods approach allows for a comprehensive understanding of complex phenomena, validating findings and providing a more nuanced perspective on research questions.
Examples of Integration
Challenges and Considerations
While qualitative and quantitative data offer distinct advantages, researchers must also be aware of the challenges and considerations associated with each type:
The challenges of qualitative data are multifaceted and can significantly impact the research process. Here are some of the primary challenges faced by researchers when working with qualitative data:
One of the most significant challenges in qualitative research is the inherent subjectivity involved in data collection and analysis. Researchers’ personal beliefs, assumptions, and experiences can influence their interpretation of data.
Qualitative research often generates large volumes of data, which can be overwhelming. This data overload can make it challenging to identify key themes and insights. Researchers may struggle to manage and analyse vast amounts of qualitative data, leading to potential insights being overlooked.
Qualitative data is often unstructured, making it difficult to analyse systematically. The absence of a predefined format can lead to challenges in drawing meaningful conclusions from the data.
Qualitative analysis can be extremely time-consuming, especially when dealing with extensive data sets. The process of collecting, transcribing, and analysing qualitative data often requires significant time and resources, which can be a barrier for researchers.
Quantitative data provides objective, measurable evidence, it also faces challenges in capturing the full complexity of human experiences, maintaining data accuracy, and avoiding misinterpretation of statistical results. Integrating qualitative data can help overcome some of these limitations.
Quantitative data, by its nature, can oversimplify complex phenomena and miss important nuances that qualitative data can capture. The focus on numerical measurements may not fully reflect the depth and richness of human experiences and behaviours.
Numbers can be twisted or misinterpreted if not analysed properly. Researchers must be cautious in interpreting statistical results, as correlation does not imply causation. Poor knowledge of statistical analysis can negatively impact the analysis and interpretation of quantitative data.
Due to the numerical nature of quantitative data, even small measurement errors can skew the entire dataset. Inaccuracies in data collection methods can lead to drawing incorrect conclusions from the analysis.
Quantitative experiments often do not take place in natural settings. The data may lack the context and nuance that qualitative data can provide to fully explain the phenomena being studied.
Small sample sizes in quantitative studies can reduce the reliability of the data. Large sample sizes are needed for more accurate statistical analysis. This also affects the ability to generalise findings to wider populations.
Researchers may miss observing important phenomena due to their focus on testing pre-determined hypotheses rather than generating new theories. The confirmation bias inherent in hypothesis testing can limit the discovery of unexpected insights.
In conclusion, understanding the distinctions between qualitative and quantitative data is essential for effective research and Data Analysis . Each type of data serves unique purposes and is suited to different contexts, making it crucial for researchers to select the appropriate methods based on their research objectives.
By integrating both qualitative and quantitative data, researchers can gain a more comprehensive understanding of complex phenomena, leading to richer insights and more informed decision-making.
As the landscape of research continues to evolve, the ability to effectively utilise and integrate both types of data will remain a valuable skill for researchers and analysts alike.
What is the primary difference between qualitative and quantitative data.
The primary difference is that qualitative data is descriptive and non-numerical, focusing on understanding qualities and experiences, while quantitative data is numerical and measurable, focusing on quantifying variables and testing hypotheses.
Qualitative data is best used when exploring new topics, understanding complex behaviours, or generating hypotheses, particularly when context and depth are important.
Yes, integrating qualitative and quantitative data can provide a more comprehensive understanding of a research question, allowing researchers to validate findings and gain richer insights.
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Implementation Science Communications volume 5 , Article number: 92 ( 2024 ) Cite this article
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Mississippi (MS) experiences disproportionally high rates of new HIV infections and limited availability of pre-exposure prophylaxis (PrEP). Federally Qualified Health Centers (FQHCs) are poised to increase access to PrEP. However, little is known about the implementation strategies needed to successfully integrate PrEP services into FQHCs in MS.
The study had two objectives: identify barriers and facilitators to PrEP use and to develop tailored implementation strategies for FQHCs.
Semi-structured interviews were conducted with 19 staff and 17 PrEP-eligible patients in MS FQHCs between April 2021 and March 2022. The interview was guided by the integrated-Promoting Action on Research Implementation in Health Services (i-PARIHS) framework which covered PrEP facilitators and barriers. Interviews were coded according to the i-PARIHS domains of context, innovation, and recipients, followed by thematic analysis of these codes. Identified implementation strategies were presented to 9 FQHC staff for feedback.
Data suggested that PrEP use at FQHCs is influenced by patient and clinic staff knowledge with higher levels of knowledge reflecting more PrEP use. Perceived side effects are the most significant barrier to PrEP use for patients, but participants also identified several other barriers including low HIV risk perception and untrained providers. Despite these barriers, patients also expressed a strong motivation to protect themselves, their partners, and their communities from HIV. Implementation strategies included education and provider training which were perceived as acceptable and appropriate.
Though patients are motivated to increase protection against HIV, multiple barriers threaten uptake of PrEP within FQHCs in MS. Educating patients and providers, as well as training providers, are promising implementation strategies to overcome these barriers.
Peer Review reports
We propose utilizing Federally Qualified Health Centers (FQHCs) to increase pre-exposure prophylaxis (PrEP) use among people living in Mississippi.
Little is currently known about how to distribute PrEP at FQHCs.
We comprehensively describe the barriers and facilitators to implementing PrEP at FQHCs.
Utilizing effective implementation strategies of PrEP, such as education and provider training at FQHCs, may increase PrEP use and decrease new HIV infections.
The HIV outbreak in Mississippi (MS) is among the most critical in the United States (U.S.). It is distinguished by significant inequalities, a considerable prevalence of HIV in remote areas, and low levels of HIV medical care participation and virologic suppression [ 1 ]. MS has consistently ranked among the states with the highest HIV rates in the U.S. This includes being the 6th highest in new HIV diagnoses [ 2 ] and 2nd highest in HIV diagnoses among men who have sex with men (MSM) compared to other states [ 2 , 3 , 4 ]. Throughout MS, the HIV epidemic disproportionately affects racial and ethnic minority groups, particularly among Black individuals. A spatial epidemiology and statistical modeling study completed in MS identified HIV hot spots in the MS Delta region, Southern MS, and in greater Jackson, including surrounding rural counties [ 5 ]. Black race and urban location were positively associated with HIV clusters. This disparity is often driven by the complex interplay of social, economic, and structural factors, including poverty, limited access to healthcare, and stigma [ 5 ].
Pre-exposure prophylaxis (PrEP) has gained significant recognition due to its safety and effectiveness in preventing HIV transmission when taken as prescribed [ 6 , 7 , 8 , 9 ]. However, despite the progression in PrEP and its accessibility, its uptake has been slow among individuals at high risk of contracting HIV, particularly in Southern states such as MS [ 10 , 11 , 12 , 13 , 14 ]. According to the CDC [ 5 ], “4,530 Mississippians at high risk for HIV could potentially benefit from PrEP, but only 927 were prescribed PrEP.” Several barriers hinder PrEP use in MS including limited access to healthcare, cost, stigma, and medical mistrust [ 15 , 16 , 17 ].
Federally qualified health centers (FQHCs) are primary healthcare organizations that are community-based and patient-directed, serve geographically and demographically diverse patients with limited access to medical care, and provide care regardless of a patient’s ability to pay [ 18 ]. FQHCs in these areas exhibit reluctance in prescribing or counseling patients regarding PrEP, primarily because they lack the required training and expertise [ 19 , 20 , 21 ]. Physicians in academic medical centers are more likely to prescribe PrEP compared to those in community settings [ 22 ]. Furthermore, providers at FQHCs may exhibit less familiarity with conducting HIV risk assessments, express concerns regarding potential side effects of PrEP, and have mixed feelings about prescribing it [ 23 , 24 ]. Task shifting might also be needed as some FQHCs may lack sufficient physician support to manage all aspects of PrEP care. Tailored strategies and approaches are necessary for FQHCs to effectively navigate the many challenges that threaten their patients’ access to and utilization of PrEP.
The main objectives of this study were to identify the barriers and facilitators to PrEP use and to develop tailored implementation strategies for FQHCs providing PrEP. To service these objectives, this study had three specific aims. Aim 1 involved conducting a qualitative formative evaluation guided by the integrated-Promoting Action on Research Implementation in Health Services (i-PARIHS) framework- with FQHC staff and PrEP-eligible patients across three FQHCs in MS [ 25 ]. Interviews covered each of the three i-PARIHS domains: context, innovation, and recipients. These interviews sought to identify barriers and facilitators to implementing PrEP. Aim 2 involved using interview data to select and tailor implementation strategies from the Expert Recommendations for Implementing Change (ERIC) project [ 26 ] (e.g., provider training) and methods (e.g., telemedicine, PrEP navigators) for the FQHCs. Aim 3 was to member-check the selected implementation strategies and further refine these if necessary. Data from all three aims are presented below. The standards for reporting qualitative research (SRQR) checklist was used to improve the transparency of reporting this qualitative study [ 27 ].
Interviews were conducted with 19 staff and 17 PrEP-eligible patients from three FQHCs in Jackson, Canton, and Clarksdale, Mississippi. Staff were eligible to participate if they were English-speaking and employed by their organization for at least a year. Eligibility criteria for patients included: 1) English speaking, 2) aged 18 years or older, 3) a present or prior patient at the FQHC, 4) HIV negative, and 5) currently taking PrEP or reported any one of the following factors that may indicate an increased risk for HIV: in the past year, having unprotected sex with more than one person with unknown (or positive) HIV status, testing positive for a sexually transmitted infection (STI) (syphilis, gonorrhea, or chlamydia), or using injection drugs.
The institutional review boards of the affiliated hospitals approved this study prior to data collection. An employee at each FQHC acted as a study contact and assisted with recruitment. The contacts advertised the study through word-of-mouth to coworkers and relayed the contact information of those interested to research staff. Patients were informed about the study from FQHC employees and flyers while visiting the FQHC for HIV testing. Those interested filled out consent-to-contact forms, which were securely and electronically sent to research staff. Potential participants were then contacted by a research assistant, screened for eligibility, electronically consented via DocuSign (a HIPAA-compliant signature capturing program), then scheduled for an interview. Interviews occurred remotely over Zoom, a HIPAA-compliant, video conferencing platform. Interviews were conducted until data saturation was reached. In addition to the interview, all participants were asked to complete a short demographics survey via REDCap, a HIPAA-compliant, online, data collection tool. Each participant received a $100 gift card for their time.
The i-PARIHS framework guided interview content and was used to create a semi-structured interview guide [ 28 ]. Within the i-PARIHS framework’s elements, the interview guide content included facilitators and barriers to PrEP use at the FQHC: 1) the innovation, (PrEP), such as its degree of fit with existing practices and values at FQHCs; 2) the recipients (individuals presenting to FQHCs), such as their PrEP awareness, barriers to receiving PrEP such as motivation, resources, support, and personal PrEP experiences; and 3) the context of the setting (FQHCs), such as clinic staff PrEP awareness, barriers providing PrEP services, and recommendations regarding PrEP care. Interviews specifically asked about the use of telemedicine, various methods for expanding PrEP knowledge for both patients and providers (e.g., social media, advertisements, community events/seminars), and location of services (e.g., mobile clinics, gyms, annual health checkups, health fairs). Staff and patients were asked the same interview questions. Data were reviewed and analyzed iteratively throughout data collection, and interview guides were adapted as needed.
Interviews were all audio-recorded, then transcribed by an outside, HIPAA-certified transcription company. Transcriptions were reviewed for accuracy by the research staff who conducted the interviews.
Seven members of the research team (TA, LW, KKG, AB, CSG, AL, LKB) independently coded the transcripts using an a priori coding schedule that was developed using the i-PARIHS and previous studies [ 15 , 16 , 17 ]. All research team members were trained in qualitative methods prior to beginning the coding process. The coding scheme covered: patient PrEP awareness, clinic staff PrEP awareness, barriers to receiving PrEP services, barriers to providing PrEP services, and motivation to take PrEP. Each coder read each line of text and identified if any of the codes from the a priori coding framework were potentially at play in each piece of text. Double coding was permitted when applicable. New codes were created and defined when a piece of text from transcripts represented a new important idea. Codes were categorized according to alignment with i-PARIHS constructs. To ensure intercoder reliability, the first 50% of the interviews were coded by two researchers. Team meetings were regularly held to discuss coding discrepancies (to reach a consensus). Coded data were organized using NVivo software (Version 12). Data were deductively analyzed using reflexive thematic analysis, a six-step process for analyzing and reporting qualitative data, to determine themes relevant to selecting appropriate implementation strategies to increase PrEP use at FQHCs in MS [ 29 ]. The resulting thematic categories were used to select ERIC implementation strategies [ 26 ]. Elements for each strategy were then operationalized and the mechanism of change for each strategy was hypothesized [ 30 , 31 ]. Mechanisms define how an implementation strategy will have an effect [ 30 , 31 ]. We used the identified determinants to hypothesize the mechanism of change for each strategy.
Member checking is when the data or results are presented back to the participants, who provide feedback [ 32 ] to check for accuracy [ 33 ] and improve the validity of the data [ 34 ]. This process helps reduce the possibility of misrepresentation of the data [ 35 ]. Member checking was completed with clinic staff rather than patients because the focus was on identifying strategies to implement PrEP in the FQHCs.
Two focus groups were conducted with nine staff from the three FQHCs in MS. Eligibility criteria were the same as above. A combination of previously interviewed staff and non-interviewed staff were recruited. Staff members were a mix of medical (e.g., nurses, patient navigators, social workers) and non-medical (e.g., administrative assistant, branding officer) personnel. Focus group one had six participants and focus group two had three participants. The goal was for focus group participants to comprise half of staff members who had previously been interviewed and half of non-interviewed staff.
Participants were recruited and compensated via the same methods as above. All participants electronically consented via DocuSign, and then were scheduled for a focus group. Focus groups occurred remotely over Zoom. Focus groups were conducted until data saturation was reached and no new information surfaced. The goal of the focus groups was to member-check results from the interviews and assess the feasibility and acceptability of selected implementation strategies. PowerPoint slides with the results and implementation strategies written in lay terms were shared with the participants, which is a suggested technique to use in member checking [ 33 ]. Participants were asked to provide feedback on each slide.
Focus groups were all audio-recorded, then transcribed. Transcriptions were reviewed for accuracy by the research staff who completed focus groups. Findings from the focus groups were synthesized using rapid qualitative analyses [ 36 , 37 ]. Facilitators (TA, PPE) both took notes during the focus groups of the primary findings. Notes were then compared during team meetings and results were finalized. Results obtained from previous findings of the interviews and i-PARIHS framework were presented. To ensure the reliability of results, an additional team member (KKG) read the transcripts to verify the primary findings and selected supportive quotes for each theme. Team meetings were regularly held to discuss the results.
Thirty-six semi-structured interviews in HIV hot spots were completed between April 2021 and March 2022. Among the 19 FQHC staff, most staff members had several years of experience working with those at risk for HIV. Staff members were a mix of medical (e.g., doctors, nurses, CNAs, social workers) and non-medical (e.g., receptionists, case managers) personnel. Table 1 provides the demographic characteristics for the 19 FQHC clinic staff and 17 FQHC patients.
Table 2 provides a detailed description of the findings within each category: PrEP knowledge, PrEP barriers, and PrEP motivation. Themes are described in detail, with representative quotes, below. Implementation determinants are specific factors that influence implementation outcomes and can be barriers or facilitators. Table 3 highlights which implementation determinants can increase ( +) or decrease (-) the implementation of PrEP at FQHCs in MS. Each determinant, mapped to its corresponding i-PARIHS construct, is discussed in more detail below. There were no significant differences in responses across the three FQHCs.
Patient prep awareness (i-parihs: recipients).
Most patients had heard of PrEP and were somewhat familiar with the medication. One patient described her knowledge of PrEP as follows, “I know that PrEP is I guess a program that helps people who are high-risk with sexual behaviors and that doesn't have HIV, but they're at high-risk.”- Patient, Age 32, Female, Not on PrEP. However, many lacked knowledge of who may benefit from PrEP, where to receive a prescription, the different medications used for PrEP, and the efficacy of PrEP. Below is a comment made by a patient listing what she would need to know to consider taking PrEP. “I would need to know the price. I would need to know the side effects. I need to know the percentage, like, is it 100 or 90 percent effective.”— Patient, Age Unknown, Female, Not on PrEP. Patients reported learning about PrEP via television and social media commercials, medical providers, and their social networks. One patient reported learning about PrEP from her cousin. “The only person I heard it [PrEP] from was my cousin, and she talks about it all the time, givin’ us advice and lettin’ us know that it’s a good thing.”— Patient, Age Unknown, Female, Not on PrEP.
Training in who may benefit from PrEP and how to prescribe PrEP varied among clinic staff at different FQHCs. Not all clinics offered formal PrEP education for employees; however, most knew that PrEP is a tool used for HIV prevention. Staff reported learning about PrEP via different speakers and meetings. A clinic staff member reported learning about PrEP during quarterly meetings. “Well, sometimes when we have different staff meetings, we have them quarterly, and we discuss PrEP. Throughout those meetings, they tell us a little bit of information about it, so that's how I know about PrEP.” – Staff, Dental Assistant, Female. Some FQHC staff members reported having very little knowledge of PrEP. One staff member shared that she knew only the “bare minimum” about PrEP, stating,
“I probably know the bare minimum about PrEP. I know a little about it [PrEP] as far as if taken the correct way, it can prevent you from gettin’ HIV. I know it [PrEP] doesn’t prevent against STDs but I know it’s a prevention method for HIV and just a healthier lifestyle.” –Staff, Accountant, Female
A few of the organizations had PrEP navigators to which providers refer patients. These providers were well informed on who to screen for PrEP eligibility and the process for helping the patient obtain a PrEP prescription. One clinic staff member highlighted how providers must be willing to be trained in the process of prescribing PrEP and make time for patients who may benefit. Specifically, she said,
“I have been trained [for PrEP/HIV care]. It just depends on if that’s something that you’re willing to do, they can train on what labs and stuff to order ’cause it’s a whole lot of labs. But usually, I try to do it. At least for everybody that’s high-risk.” – Staff, OB/GYN Nurse Practitioner, Female
Another clinic staff member reported learning about PrEP while observing another staff member being training in PrEP procedures.
“Well, they kinda explained to me what it [PrEP] is, but I was in training with the actual PrEP person, so it was kinda more so for his training. I know what PrEP is. I know the medications and I know he does a patient assistance program. If my patients have partners who are not HIV positive and wanna continue to be HIV negative, I can refer 'em.” – Staff, Administrative Assistant, Female
Barriers receiving prep services (i-parihs: recipients, innovation).
Several barriers to receiving PrEP services were identified in both patient and clinic staff interviews. There was a strong concern for the side effects of PrEP. One patient heard that PrEP could cause weight gain and nightmares, “I’m afraid of gaining weight. I’ve heard that actual HIV medication, a lotta people have nightmares or bad dreams.” - Patient, Age 30, Female, Not on PrEP. Another patient was concerned about perceived general side effects that many medications have. “Probably just the [potential] side effects. You know, most of the pills have allergic reactions and side effects, dizziness, seizures, you know.” - Patient, Age 30, Female, Not on PrEP.
The burden of remembering to take a daily pill was also mentioned as a barrier to PrEP use. One female patient explained how PrEP is something she is interested in taking; however, she would be unable to take a daily medication.
“I’m in school now and not used to takin’ a medication every day. I was takin’ a birth control pill, but now take a shot. That was one of the main reasons that I didn’t start PrEP cause they did tell me I could get it that day. So like I wanna be in the mind state to where I’m able to mentally, in my head, take a pill every day. PrEP is somethin’ that I wanna do.” - Patient, Age Unknown, Female, Not on PrEP
Stigma and confidentiality were also barriers to PrEP use at FQHCs. One staff member highlighted how in small communities it is difficult to go to a clinic where employees know you personally. Saying,
“If somebody knows you’re going to talk to this specific person, they know what you’re goin’ back there for, and that could cause you to be a little hesitant in coming. So there’s always gonna be a little hesitancy or mistrust, especially in a small community. Everybody knows everybody. The people that you’re gonna see goes to church with you.” – Staff, Accountant, Female
Some patients had a low perceived risk of HIV and felt PrEP may be an unnecessary addition to their routine. One patient shared that if she perceived she was at risk for HIV, then she would be more interested in taking PrEP, “If it ever came up to the point where I would need it [PrEP], then yes, I would want to know more about it [PrEP].”— Patient, Age Unknown, Female, Not on PrEP.
Some participants expressed difficulty initiating or staying on PrEP because of associated costs, transportation and/or scheduling barriers. A staff member explained how transportation may be available in the city but not available in more rural areas,
“I guess it all depends on the person and where they are. In a city it might take a while, but at least they have the transportation compared to someone that lives in a rural area where transportation might be an issue.” - Staff, Director of Nurses, Female
Childcare during appointments was also mentioned as a barrier, “It looks like here a lot of people don't have transportation or reliable transportation and another thing I don't have anybody to watch my kids right now. —Staff, Patient Navigator, Female.
Barriers to providing PrEP services were also identified. Many providers are still not trained in PrEP procedures nor feel comfortable discussing or prescribing PrEP to their patients. One patient shared an experience of going to a provider who was PrEP-uninformed and assumed his medication was to treat HIV,
“Once I told her about it [PrEP], she [clinic provider] literally right in front of me, Googled it [PrEP], and then she was Googlin’ the medication, Descovy. I went to get a lab work, and she came back and was like, “Is this for treatment?” I was like, “Why would you automatically think it’s for treatment?” I literally told her and the nurse, “I would never come here if I lived here.” - Patient, Age 50, Male, Taking PrEP
Also, it was reported that there is not enough variety in the kind of providers who offer PrEP (e.g., OB/GYN, primary care). Many providers such as OB/GYNs could serve as a great way to reach individuals who may benefit from PrEP; however, patients reported a lack of PrEP being discussed in annual visits. “My previous ones (OB/GYN), they’ve talked about birth control and every other method and they asked me if I wanted to get tested for HIV and any STIs, but the conversation never came up about PrEP.” -Patient, Age Unknown, Female, Not on PrEP.
Motivation to take prep (i-parihs: recipients).
Participants mentioned several motivators that enhanced patient willingness to use PrEP. Many patients reported being motivated to use PrEP to protect themselves and their partners from HIV. Additionally, participants reported wanting to take PrEP to help their community. One patient reported being motivated by both his sexuality and the rates of HIV in his area, saying, “I mean, I'm bisexual. So, you know, anyway I can protect myself. You know, it's just bein' that the HIV number has risen. You know, that's scary. So just being, in, an area with higher incidents of cases.”— Patient, Age Unknown, Male, Not on PrEP . Some participants reported that experiencing an HIV scare also motivated them to consider using PrEP. One patient acknowledged his behaviors that put him at risk and indicated that this increased his willingness to take PrEP, “I was havin' a problem with, you know, uh, bein' promiscuous. You know? So it [PrEP] was, uh, something that I would think, would help me, if I wasn't gonna change the way I was, uh, actin' sexually.”— Patient, Age Unknown, Male, Taking PrEP .
Table 3 outlines the implementation strategies identified from themes from the interview and focus group data. Below we recognize the barriers and determinants to PrEP uptake for patients attending FQHCs in MS by each i-PARIHS construct (innovation, recipient, context) [ 28 ]. Based on the data, we mapped the determinants to specific strategies from the ERIC project [ 26 ] and hypothesized the mechanism of change for each strategy [ 30 , 31 ].
Two focus groups were conducted with nine staff from threeFQHCs in MS. There were six participants in the 1st focus group and three in the 2nd. Staff members were a mix of medical (e.g., nurses, patient navigators, social workers) and non-medical (e.g., administrative assistant, branding officer) personnel. Table 4 provides the demographic characteristics for the FQHC focus group participants.
Staff participating in the focus groups generally agreed that the strategies identified via the interviews were appropriate and acceptable. Focus group content helped to further clarify some of the selected strategies. Below we highlight findings by each strategy domain.
Participants specified that awareness of HIV is lower, and stigma related to PrEP is higher in rural areas. One participant specifically said,
“There is some awareness but needs to be more awareness, especially to rural areas here in Mississippi. If you live in the major metropolitan areas there is a lot of information but when we start looking at the rural communities, there is not a lot.” – Staff, Branding Officer, Male
Participants strongly agreed that many patients don’t realize they may benefit from PrEP and that more inclusive advertisements are needed. A nurse specifically stated,
“ When we have new clients that come in that we are trying to inform them about PrEP and I have asked them if they may have seen the commercial, especially the younger population. They will say exactly what you said, that “Oh, I thought that was for homosexuals or whatever,” and I am saying “No, it is for anyone that is at risk.” – Staff, Nurse, Female
Further, staff agreed that younger populations should be included in PrEP efforts to alleviate stigma. Participants added that including PrEP information with other prevention methods (i.e., birth control, vaccines) is a good place to include parents and adolescents:
“Just trying to educate them about Hepatitis and things of that nature, Herpes. I think we should also, as they are approaching 15, the same way we educate them about their cycle coming on and what to expect, it’s almost like we need to start incorporating this (PrEP education), even with different forms of birth control methods with our young ladies.” – Staff, Nurse, Female
Participants agreed that PrEP testimonials would be helpful, specifically from people who started PrEP, stopped, and then were diagnosed with HIV. Participants indicated that this may improve PrEP uptake and persistence. One nurse stated:
“I have seen where a patient has been on PrEP a time or two and at some point, early in the year or later part of the year, and we have seen where they’ve missed those appointments and were not consistent with their medication regimen. And we have seen those who’ve tested positive for HIV. So, if there is a way we could get one of those patients who will be willing to share their testimony, I think they can really be impactful because it’s showing that taking up preventive measures was good and then kind of being inconsistent, this is what the outcome is, unfortunately.” – Staff, Nurse, Female
Participants agreed that a “PrEP champion” (someone to promote PrEP and answer PrEP related questions) would be helpful, especially for providers who need more education about PrEP to feel comfortable prescribing. A patient navigator said,
“I definitely think that a provider PrEP champion is needed in every clinic or organization that is offering PrEP. And it goes back to what we were saying about the providers not being knowledgeable on it [PrEP]. If you have a PrEP champion that already knows this information, it is gonna benefit everybody, patients, patient advocates, the provider, everyone all around. Everyone needs a champion." – Staff, Patient Navigator, Female
Staff noted that they have walk-in appointments for PrEP available; however, they often have too many walk-in appointments to see everyone. They noted that having more resources and providers may alleviate this barrier for some patients:
“We still have challenges with people walking in versus scheduling an appointment, but we do have same day appointments. It is just hard sometimes because the volume that we have at our clinic and the number of patients that we have that walk in on a daily basis.” – Staff, Social Worker, Female
Participants agreed that educational meetings would be beneficial and highlighted that meetings should happen regularly and emphasized a preference for in-person meetings. This is emphasized by the statement below,
“They should be in-person with handouts. You have to kind of meet people where they are as far as learning. Giving the knowledge, obtaining the knowledge, and using it, and so you have to find a place. I definitely think that yearly in-person training to update guidelines, medication doses, different things like that." – Staff, Patient Navigator, Female
Staff also suggested hosting one very large collaborative event to bring together all organizations that offer PrEP and HIV testing to meet and discuss additional efforts:
“What I would like to see happen here in the state of Mississippi, because we are so high on the list for new HIV infections, I would like to see a big collaborative event. As far as PrEP goes, those that are not on PrEP, one big collaborative event with different community health centers. You do testing, we do PrEP, and the referral get split. Everyone coming together for one main purpose.” – Staff, Patient Navigator, Female
Participants highlighted that most of the clinics they worked for already offer a variety of service sites (pharmacy, mobile clinic) but that more clinics should offer these alternative options for patients to receive PrEP. One patient navigator outlined the services they offer,
“We have a mobile unit. We do not have a home health travel nurse. We do telephone visits. We offer primary care, OB/GYN. We have our own pharmacy. We also have samples in our pharmacy available to patients that can’t get their medicine on the same day cos we like to implement same day PrEP. It has worked for us. More people should utilize those services.” – Staff, Patient Navigator, Female
Other staff suggested utilizing minute clinics and pharmacies at grocery stores. Highlighting, that offering PrEP at these locations may increase PrEP uptake.
There has been great scientific expansion of HIV prevention research and priorities must now pivot to addressing how to best implement effective interventions like PrEP [ 38 ]. PrEP remains underutilized among individuals who may benefit, particularly in Southern states such as MS [ 10 , 11 , 12 , 13 , 14 ]. Implementation science could help ameliorate this by identifying barriers and facilitators to PrEP rollout and uptake. We selected and defined several strategies from the ERIC project [ 26 ] to increase PrEP use utilizing FQHCs. Our results, as shown in Table 3 , highlight the four domains of strategies selected: 1) PrEP Information Dissemination, 2) Increase Variety and Number of PrEP Providers, 3) Enhance PrEP Provider Alliance and Trust, and 4) Increase Access to PrEP.
Firstly, individuals cannot utilize PrEP if they are not aware of its presence and utility. In Mississippi, advertising PrEP services is integral to implementation efforts given the existing stigma and lack of health literacy in this region [ 39 ]. Potential avenues for expanding PrEP awareness are integrating it into educational curriculums, adolescents’ routine preventative healthcare, and health fairs. This study compliments prior research that people should be offered sexual health and PrEP education at a younger age to increase awareness of risk, foster change in social norms and enhance willingness to seek out prevention services [ 40 , 41 ]. To meet the resulting growing need for PrEP educators, healthcare professionals should receive up-to-date PrEP information and training, so that they can confidently relay information to their patients. Similar to existing research, increasing provider education could accelerate PrEP expansion [ 42 , 43 , 44 ]. Training programs aimed at increasing provider PrEP knowledge may increase PrEP prescriptions provided [ 43 ] by addressing one of the most frequently listed barriers to PrEP prescription among providers [ 45 , 46 ].
Many patients prefer to receive PrEP at the healthcare locations they already attend and report a barrier to PrEP being limited healthcare settings that offer PrEP [ 39 , 47 , 48 , 49 ]. The aforementioned PrEP training could increase the number of healthcare workers willing to provide PrEP services. It is also imperative that providers in a diverse range of healthcare settings (e.g., primary care, OB/GYN, pediatricians and adolescent medicine providers) join the list of those offering PrEP to reduce stigma and enhance patient comfort.
These results mirrored other studies in the South that have shown that using relatable healthcare providers and trusted members of the community may serve to facilitate PrEP uptake [ 41 , 50 , 51 ]. If patients have a larger number of PrEP providers to choose from, they can select one that best fits their needs (e.g., location, in-network) and preferences (e.g., familiarity, cultural similarities). Enhanced comfort facilitates a strong patient-provider alliance and can lead to more open/honest communication regarding HIV risk behavior.
The lack of conveniently located PrEP providers is consistently reported as a structural barrier in the South [ 44 , 52 ]. This creates an increase in the demand on patients to attend regular follow-up appointments. The three strategies above all play a vital role in increasing access to PrEP. If more individuals are trained to provide PrEP care, there will be more PrEP providers, and patients can choose the best option for them. A sizeable influx of new PrEP providers could help staff new care facilities and service options in the community (e.g., mobile health units, home care, community-based clinics, telemedicine). Offering PrEP via telemedicine and mobile clinics to patients has been largely supported in the literature [ 44 , 53 , 54 ]. Intra- and inter-organizational collaborations could similarly increase PrEP access by sharing information and resources to ensure patients get timely, reliable care.
Our results largely supported previous findings by two systematic reviews on the barriers to PrEP uptake and implementation strategies to overcome it [ 39 , 47 ]. Sullivan et.al.’s review focused on the Southern U.S. [ 38 ], while Bonacci et. al. explored steps to improve PrEP equity for Black and Hispanic/Latino communities [ 47 ]. Both agreed that barriers to PrEP access are complex. Thus, cooperation from policymakers and the expansion of state Medicaid or targeted Medicaid waivers is vital to make PrEP attainable for those living in the coverage gap. Further, many FQHCs receive Ryan White funding for HIV care and treatment, contracting flexibility in the utility of these other sources of support may aid in eliminating the cost of PrEP as a barrier. They also stressed the need for educating community members and healthcare personnel about PrEP, increasing and diversifying PrEP service sites, normalizing PrEP campaigns and screening to alleviate stigma, and streamlining clinical procedures to facilitate the option for same-day PrEP. However, they also noted that these strategies are easier said than done. This further highlights the need for prioritizing research efforts towards implementation studies for effectiveness and practicality of overcoming the complex and systemic needs around HIV prevention/treatment.
The present study was able to build on past findings by providing a more holistic view of the barriers to PrEP use and possible strategies to address them through querying PrEP-eligible patients, medical providers, and non-medical staff. By interviewing a diverse range of stakeholders, it was possible to identify unmet patient needs, current PrEP care procedures and infrastructure, and attitudes and needed resources among those who could potentially be trained to provide PrEP in the future.
Our results are limited to participants and clinic staff who were willing to engage in a research interview to discuss PrEP and FQHCs. Results are only generalizable to Mississippi and may be less relevant for other geographic areas. However, this is a strength given these strategies are meant to be tailored specifically to FQHCs in MS. Due to COVID-19 restrictions, interviews were conducted via Zoom. This allowed us to reach participants unable to come in physically for an interview and may have increased their comfort responding to questions [ 55 ]. However, some participants may have been less comfortable discussing via Zoom, which may have limited their willingness to respond.
This study highlighted the need for implementing PrEP strategies to combat HIV in Mississippi. PrEP knowledge, barriers, and motivation were identified as key factors influencing PrEP utilization, and four domains of strategies were identified for improving PrEP accessibility and uptake. Future research should further refine and assess the feasibility and acceptability of selected and defined implementation strategies and test strategies.
De-identified data from this study are not available in a public archive due to sensitive nature of the data. De-identified data from this study will be made available (as allowable according to institutional IRB standards) by emailing the corresponding author.
Mississippi
Pre-Exposure Prophylaxis
Federally Qualified Health Centers
Integrated-Promoting Action on Research Implementation in Health Services
Expert Recommendations for Implementing Change
Men Who Have Sex With Men
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Authors would like to acknowledge and thank Sarah Bailey for reviewing the manuscript and assisting for formatting.
This study was funded by the National Institute of Health (R34MH115744) and was facilitated by the Providence/Boston Center for AIDS Research (P30AI042853). Additionally, work by Dr. Trisha Arnold was supported by the National Institute of Mental Health Grant (K23MH124539-01A1) and work by Dr. Andrew Barnett was supported by the National Institute of Mental Health Grant (T32MH078788). Dr. Elwy is supported by a Department of Veterans Affairs Research Career Scientist Award (RCS 23–018).
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TA and ARE led the conceptualization of this paper. TA, LW, LKB, DML, and JBB completed the literature search and study design. TA, LW, LKB, KKG, PPE, AB, AL, and CSG assisted with analyzing and interpreting the data. TA, ARE, and AMA finalized the results and implementation concepts of the study. All authors read and approved the final manuscript.
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Arnold, T., Whiteley, L., Giorlando, K.K. et al. A qualitative study identifying implementation strategies using the i-PARIHS framework to increase access to pre-exposure prophylaxis at federally qualified health centers in Mississippi. Implement Sci Commun 5 , 92 (2024). https://doi.org/10.1186/s43058-024-00632-6
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1 Institute of Molecular Immunology, Klinikum Rechts der Isar, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany
2 Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany
3 Department of Science, Technology and Society (STS), School of Social Sciences and Technology, Technical University of Munich, Munich, Germany
4 Institute of Philosophy, Multidisciplinary Center for Infectious Diseases, University of Bern, Bern, Switzerland
5 Institute for Biomedical Ethics, University of Basel, Basel, Switzerland
*these authors contributed equally
Bettina M Zimmermann, PhD
Institute of History and Ethics in Medicine
TUM School of Medicine and Health
Technical University of Munich
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Background: Social media platforms are increasingly used to recruit patients for clinical studies. Yet, patients’ attitudes regarding social media recruitment are underexplored.
Objective: This mixed methods study aims to assess predictors of the acceptance of social media recruitment among patients with hepatitis B, a patient population that is considered particularly vulnerable in this context.
Methods: Using a mixed methods approach, the hypotheses for our survey were developed based on a qualitative interview study with 6 patients with hepatitis B and 30 multidisciplinary experts. Thematic analysis was applied to qualitative interview analysis. For the cross-sectional survey, we additionally recruited 195 patients with hepatitis B from 3 clinical centers in Germany. Adult patients capable of judgment with a hepatitis B diagnosis who understood German and visited 1 of the 3 study centers during the data collection period were eligible to participate. Data analysis was conducted using SPSS (version 28; IBM Corp), including descriptive statistics and regression analysis.
Results: On the basis of the qualitative interview analysis, we hypothesized that 6 factors were associated with acceptance of social media recruitment: using social media in the context of hepatitis B (hypothesis 1), digital literacy (hypothesis 2), interest in clinical studies (hypothesis 3), trust in nonmedical (hypothesis 4a) and medical (hypothesis 4b) information sources, perceiving the hepatitis B diagnosis as a secret (hypothesis 5a), attitudes toward data privacy in the social media context (hypothesis 5b), and perceived stigma (hypothesis 6). Regression analysis revealed that the higher the social media use for hepatitis B (hypothesis 1), the higher the interest in clinical studies (hypothesis 3), the more trust in nonmedical information sources (hypothesis 4a), and the less secrecy around a hepatitis B diagnosis (hypothesis 5a), the higher the acceptance of social media as a recruitment tool for clinical hepatitis B studies.
Conclusions: This mixed methods study provides the first quantitative insights into social media acceptance for clinical study recruitment among patients with hepatitis B. The study was limited to patients with hepatitis B in Germany but sets out to be a reference point for future studies assessing the attitudes toward and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner.
Benefits and risks of using social media recruitment for clinical studies.
Recruiting clinical study participants through social media has the potential to increase the recruitment accrual in a cost-effective way [ 1 ]. Consequently, social media recruitment has been increasingly applied for clinical studies, often in parallel with other recruitment strategies. However, social media recruitment still bears a host of challenges. First, maintaining a social media presence and community management can be resource intensive. Second, when used as a stand-alone recruiting method, it might yield a cohort of limited demographic representativeness. Finally, social media recruitment comes with ethical issues, particularly when used to recruit for clinical studies [ 2 ]. Because social media recruitment includes reaching potential research participants outside a clinical setting and in a public online space without direct personal contact, risks related to social stigma, privacy infringement, loss of trust, and psychological harm have been discussed [ 3 ]. To mitigate some of these risks, prioritizing investigator transparency and obtaining explicit consent when recruiting from others’ social network was suggested [ 4 ]. Yet, because the activities of social media platforms are primarily unregulated and partly belong to large global technology companies, activities conducted on social media, including study recruitment, can never be fully controlled by researchers or institutions. Remaining privacy-infringing risks include hidden data collection and profiling, particularly problematic for patients carrying vulnerable characteristics [ 5 ].
Early studies assessing social media recruitment for clinical studies focused on the effectiveness of the method. For example, Frandsen et al [ 3 ] used social media recruitment for a smoking cessation trial and compared their cohort recruited from a Facebook-based approach to cohorts resulting from other recruitment methods. They found no differences between the cohorts regarding socioeconomic or smoking characteristics, except that participants recruited via Facebook were significantly younger. Wisk et al [ 4 ] recruited college students with type 1 diabetes, a hard-to-reach population, using a variety of outreach channels, including social media. They found that Facebook was the most successful recruitment method. Guthrie et al [ 5 ] found that Facebook advertising was significantly cheaper than recruiting via mail. While these studies allow insights into the utility of social media recruitment from the perspective of researchers, studies assessing patients’ perspectives and attitudes toward social media for clinical study recruitment are lacking. This study aims to deliver first evidence on patient attitudes toward social media recruitment, focusing on patients with hepatitis B.
Patients with hepatitis B are a particularly interesting cohort to study acceptance for social media recruitment as the particularities of the disease exhibit potentially confounding factors for their attitudes toward social media recruitment. First, there is robust empirical evidence that patients with hepatitis B can be subject to social stigma [ 6 - 10 ]. Therefore, the risk of public exposure to hepatitis B diagnosis on social media renders them—and patients with other stigmatized traits and conditions—particularly vulnerable in the context of social media recruitment [ 11 ]. Second, hepatitis B in Europe is particularly prevalent in certain immigrant populations, which are at risk of being neglected for clinical studies due to language barriers and lack of health care access. Social media recruitment can help include patient populations who otherwise would be disregarded for clinical studies or are hard to reach [ 12 - 14 ].
However, the effectiveness of social media recruitment crucially hinges on technology acceptance. To date, the attitudes of patients regarding social media recruitment are underexplored. Addressing this gap, this mixed methods study assesses factors predicting the acceptance of social media recruitment among patients with hepatitis B. On the basis of qualitative individual interviews with 6 patients with hepatitis B and 30 multidisciplinary experts and a literature review, we hypothesized that general social media use (hypothesis 1), social media literacy (hypothesis 2), interest in clinical studies (hypothesis 3), trust (hypothesis 4), privacy needs (hypothesis 5), and perceived stigma (hypothesis 6) are associated with acceptance of social media recruitment.
This study is part of the European Union–funded international research consortium “TherVacB—A Therapeutic Vaccine to Cure Hepatitis B,” work package 6 (ethical, legal, and social aspects of social media recruitment). Using a mixed methods design, we first conducted an explorative qualitative multistakeholder interview study assessing the ethical, legal, social, and practical implications of social media recruitment for clinical studies [ 2 ]. The hypotheses investigated in this paper are based on these interviews and a conceptual literature review mapping the ethical implications of social media recruitment [ 11 ]. The reporting of this study followed the Strengthening the Reporting of Observational Studies in Epidemiology guidelines [ 15 ].
On the basis of preliminary statistical power analysis and pragmatic considerations of available study participants, we aimed for 200 responses in a recruitment period of 7 months. Due to administrative constraints, including the COVID-19 pandemic, the overall recruitment period was prolonged by 5 months (total recruitment period 12 months, June 4, 2022, to May 31, 2023), and the recruitment period varied among the recruiting clinics ( Multimedia Appendix 1 ).
Adult, German-speaking patients diagnosed with acute or chronic viral hepatitis B were recruited from 3 large university hospitals in Germany. We chose such a venue-based recruitment methodology because it is considered one of the best options to recruit representative samples from hard-to-reach populations [ 16 ]. The clinical staff was instructed to distribute the study information leaflet to every eligible patient in the study period, explaining the implications of the study and inviting them to fill out the questionnaire. To limit recruitment bias and enhance sample representativeness, study nurses were briefed to avoid self-selected restrictions in recruitment and, if possible, to give a questionnaire to every incoming patient with hepatitis B who understood German sufficiently well. However, because of the administrative burden of the clinical staff, only 30.4% (285/939) of the estimated eligible incoming patients received the questionnaire ( Multimedia Appendix 1 ). Because this low distribution number results from administrative burden in the clinic, we do not expect this to have a relevant impact on representativeness (refer to the Limitations subsection under the Discussion section). Completed questionnaires (207/285, 72.6% of the distributed questionnaires; Multimedia Appendix 1 ) were collected in the recruiting hospital and sent to the authors via mail.
The dependent variable (acceptance of social media recruitment) was constructed based on the Technology Acceptance Model [ 17 , 18 ], involving the dimensions of perceived usefulness; perceived ease of use, intentions, and problem awareness; and proved good internal consistency (Cronbach α=0.863). Possible predictors for social media recruitment acceptance were identified based on the abovementioned hypotheses and operationalized by, if possible, existing validated questionnaires. For 3 (33%) of the 9 independent variables, we used existing validated questionnaires that were found to be of excellent reliability: the social media literacy scale (14 items, Cronbach α=0.947) [ 19 ], the Berger HIV Stigma Scale for use among patients with hepatitis C virus (6 items, Cronbach α=0.931) [ 20 ], and the Privacy Attitude Questionnaire [ 21 ]. For the latter, we included a shortened version that covered the dimensions developed in the Privacy Attitude Questionnaire but targeted it toward the hepatitis B context. From these dimensions, 2 subscales were created: secrecy of hepatitis B diagnosis (2 items, Cronbach α=0.623) and data privacy needs regarding hepatitis B diagnosis (2 items, Cronbach α=0.587).
For the remaining variables, no validated tools existed. Hence, we developed new scales for each variable of interest. As indicated by internal consistency, these were of moderate, good, or excellent reliability: general social media use (8 items, Cronbach α=0.676), hepatitis B–related social media use (6 items, Cronbach α=0.906), interest in clinical studies (2 items, Cronbach α=0.895), and trust in information sources regarding hepatitis B (11 items, Cronbach α=0.905; 2 subscales were created: trust in medical information sources—4 items, Cronbach α=0.784 and trust in nonmedical information sources, ie, traditional media, social media, other patients, poster advertisements, etc—7 items, Cronbach α=0.881). In addition to these adapted and self-developed scales, we included 4 demographic variables in the regression model (age, gender, education, and mother tongue as an indicator of migration background). A preliminary version of the questionnaire was discussed with 3 experts from the fields of infectiology and bioethics and then adapted and shortened based on their comments. We then performed cognitive pretesting [ 22 ] with 6 patients with hepatitis B, leading to minor changes. The full questionnaire is provided in Multimedia Appendix 2 .
Using SPSS (version 28.0; IBM Corp), we (1) performed descriptive analyses, (2) determined independent factors associated with participants’ acceptance of social media as a recruitment tool for clinical hepatitis B studies through multiple linear regression analysis, and (3) performed additional exploratory bivariate analyses of hepatitis B–related stigma (ie, correlation, independent 2-tailed t test). The statistical significance level was set at P <.05. For multiple linear regression analysis, assumption checks were performed before the interpretation of the model ( Multimedia Appendix 3 ). For the scale measuring the frequency of social media use, missing values were replaced by “0” (ie, “never”), assuming that participants did not tick a box, as they did not know the respective social media platform. Overall, 71.3% (139/195) of the participants completed all items, resulting in 3.66% (478/13,065) missing values and 81% (54/67) incomplete variables.
For the linear regression analysis, theoretical considerations and hypotheses derived from our previous qualitative study determined predictor selection. In addition, the sample size or predictor ratio a priori determines variable selection for regression modeling. According to Harrell [ 23 ], a fitted regression model is likely to be reliable when p<m/10 or p<m/20 (average requirement: p<m/15), where p is the number of predictors and m is the sample size. Applying this requirement to our sample size (N=195) and having missing data, we preliminarily limited the number of included predictors to 11. The following 11 predictors were included in the regression model: general social media use, social media literacy, hepatitis B–related social media use, interest in clinical studies, trust in medical information sources regarding hepatitis B (dichotomized to meet assumption of linearity), trust in nonmedical information sources regarding hepatitis B, secrecy of hepatitis B (dichotomized to meet assumption of linearity), data privacy needs regarding hepatitis B (dichotomized to meet assumption of linearity), perceived stigma, age, and education. Assumptions checks for regression analyses are presented in Multimedia Appendix 3 .
For study consent, participants were asked to confirm having read and understood the study information and to consent to the study participation by checking a consent box at the beginning of the questionnaire. Only questionnaires with this box checked were included in the analysis (12/207, 5.8% of the questionnaires were excluded for that reason; Multimedia Appendix 1 ). The ethics committees from the Technical University of Munich (12/22-S-NP), Hannover Medical School (10368_BO_K_2022), and University Clinic Leipzig (189/22-lk) approved the study.
After conducting an in-depth literature review on the ethical and social challenges surrounding social media recruitment for clinical studies [ 11 ], we developed 2 semistructured interview guides, one targeted at patients with hepatitis B and the other targeted at multidisciplinary experts. On the basis of interviews with 6 patients that were triangulated with findings from 30 interviews with experts, we qualitatively assessed what factors could be associated with the acceptance of social media recruitment for clinical hepatitis B studies. On the basis of these findings, we derived hypotheses to be tested quantitatively in a survey among patients with hepatitis B in Germany ( Textbox 1 ).
Most of the patients we talked with were rejecting the idea of being recruited for a clinical hepatitis B study via social media. However, patients who were more actively involved in their own recruitment tended to have more accepting attitudes. For example, patients who described using social media as a tool for informing themselves about potential clinical studies related to their disease were less opposed to being recruited via the same channel. One patient included search engines in their definition of social media and mentioned the following:
You can also advertise on Google. That is quasi/I think it’s better if I [as a patient] search for a study. For example, I search for a study related to psoriasis and enter that term in Google—when the advertisement for a psoriasis study is then made so that it shows up as the first suggestion...I think that’s better because in these instances I’m already searching, so I take the first step, I search for the study. And then the study, or the advertisement must be done in such a way that I can find it. So, I take the first step and then I land on the study. [Patient 3]
Similarly, patients who joined shared interest groups, such as patient groups on Facebook, which gather people who deliberately want to share their own experiences with the disease and learn from others’ experiences, were more open toward the idea of being approached and recruited within such groups.
These insights indicate that patients who were already active on social media and found it useful for their personal disease management were more open to being recruited via social media. This led us to the following hypothesis: (H1) The more patients use social media (for hepatitis B), the higher their acceptance of using social media as a recruitment tool for clinical (hepatitis B) studies.
The patients we interviewed represented a variety of levels regarding social media literacy. While some patients have had very limited contact with social media, others were very active on social media. One patient even described social media content management as part of their daily job. Another had conducted a research web-based questionnaire for which they were recruiting on the web. Analyzing the interviewees’ accounts about their experience with social media, and partially their use habits, we found a scattered connection to social media recruitment acceptance: those who were considered to have higher digital literacy skills were, in some instances, likely to accept social media as a recruitment tool for clinical hepatitis B studies because they perceived other forms of recruitment as outdated:
I think we are living in a time that you have to use social media because if you don’t use it...sending a letter or put[ting it] in the newspaper, will not help you. [Patient 6]
On the other end of the spectrum, however, patients with very low digital literacy skills and relatedly very little reported use of social media, or digital media in general, in some instances had difficulties delimiting the concept of social media as such. Presumably, their less nuanced understanding of social media as a concept makes them less strictly opposed to being recruited for a clinical study via social media. One patient, for example, favored personal contact for study recruitment at first but then revised their statement and reported that being helped was even more important than personal contact:
Yes definitely. If it was something important it would be best if we met at a clinic, or I don’t know where this study is being done.... But even via Facebook or Messenger.... Yeah, actually never mind, I don’t care actually. [Patient 2]
While the interviews suggested a connection between the acceptance of social media recruitment for clinical hepatitis B studies and digital literacy, it remained unclear whether acceptance was higher with high or low digital literacy. Consequently, we formulated the nondirectional hypothesis that (H2) digital literacy is associated with social media acceptance (SMA).
Some participating patients expressed particularly high interest in participating in clinical studies about hepatitis B. One patient explained to us that they were “very, very happy to support studies” (patient 5), and another patient told us the following: “I actually want to help. So, that’s why I get in” (patient 6). Patients like this, who reported an increased willingness to participate in clinical studies in general, seemed more susceptible to social media as a recruitment tool, too.
Another patient perceived it as beneficial that online recruitment made them less dependent on their physician to refer them to the study:
I don’t know if my physician is even internet-savvy, he’s a bit older. And well, then I thought, I have to see for myself because I’m not sure how competent he is with such things. What I mean is, it would be nicer if I...could google for [a clinical trial], land on a platform, search for [relevant studies], see all the information and can get in touch right away and say: “Hey, I am interested in your study. I would like to participate.” Because in my case, the...specialists didn’t even know that this [study] existed.... That’s stupid and got me pretty upset.” [Patient 3]
None of the patients interviewed reported that they were generally against participation in clinical studies. This is likely a recruitment bias of this qualitative interview study, which made it difficult to interrogate if patients who are less accepting of clinical studies are also less accepting of social media recruitment. Yet, based on the apparent influence of this aspect in 2 (33%) of 6 patient interviews, we formulated the following hypothesis: (H3) The more patients are interested in clinical studies, the more they accept social media as a recruitment tool for clinical hepatitis B studies.
The role of trust in health care professionals, social media platforms, and other recruitment channels was a very salient aspect of all interviews. Illustrating this, one participating patient with hepatitis B stated the following as a reason for being against social media recruitment:
I just feel such a distrust of social media. Any information I share there, I’m not completely comfortable with/It’s just not a safe way for me to share information. [Patient 4]
Other patients were more open to social media recruitment if they knew the source of the advertisement and assigned relevant expertise to them:
It would be okay for me [if someone would contact me on social media to ask whether I would like to meet for a clinical study, as long as] the person is qualified in that direction and is well versed in this expertise. [Patient 2]
[R]ecruiting is normally working if the person that suggests it is a person that you trust or you know. So because she was a person I knew from [redacted], then I clicked the link and I got in. Normally we know, of course, that social media is also a trap for many, I don’t know, viruses and this kind of thing. So you don’t open everything if you don’t trust the link.... If I would see it on, I don’t know, social media and as we know, because you have these cookies that you accept, then immediately, they know that you have something or you are looking for some article. Then this kind of things will pop up. Again, it’s all about trusting links. I’m not sure how much I will get in something that is suggesting from just because I click on a link. [Patient 6]
More implicitly, another patient emphasized that the clinical setting was the place for them to discuss things in the context of hepatitis B, not social media:
This channel through the [clinic in Germany]... I have a very good opinion of the hospital and I have always been well taken care of there. That is the only channel through which I would talk about my condition and about my/yes. [Patient 1]
We analyze the aspect of trust in a separate publication (Willem, T, et al, unpublished data, January 2024) in detail and hypothesize the following: (H4) The more patients trust information sources, the higher their acceptance of social media recruitment. The hypothesis was operationalized for trust in medical information sources (H4a) and trust in nonmedical information sources (H4b).
A particular concern of most patients we spoke with was their privacy. Privacy is a multifaceted and complex concept, and we found that participants referred to different dimensions of privacy: (1) data privacy, defined as the general attitude toward protective measures that empower patients or users to make their own decisions about who can process their data for which purpose; and (2) privacy related to the perceived secrecy of the hepatitis B diagnosis.
First, regarding data privacy, several patients perceived recruitment via social media as dubious and suspected some form of data leakage or malicious data collection goals behind the reach outs. This view applied irrespectively to how they would be approached on social media (eg, advertisement banners in their social media timelines or personal contact requests via social media messengers by health care professionals). For example, a patient who reported on being in the process of decreasing their social media use to protect their privacy also said that if someone contacted them on social media regarding clinical study participation, they would “find that very strange, because [I] would ask [my]self, where did they get this information?” and reported that they would feel that this “would rob quite a lot of privacy” (patient 5). Another patient, who reported using WhatsApp as their only social media, explained that by saying that they “consider social media to be useful in some instances;” however, they continued, “It’s too risky for me with my private data and so much advertising. This, for me, trumps all advantages of social media recruitment” (patient 4).
Regarding the second privacy dimension, secrecy, several patients commented on their hepatitis B diagnosis being a very private, intimate matter:
This condition is in my most private, intimate sphere…. And you might be right, I never thought about it in this way, but [my avoiding engaging on social media regarding hepatitis B] may be related to the fact that content I pass on via WhatsApp can be passed on thousands of times with one click. [Patient 1]
One patient replied to a question regarding their attitude toward being contacted by a study center via social media that they “would find that difficult”. As a reason, this patient explained the following:
[T]hat’s just the problem: it ends up on social media. See, if someone writes: “Hey, I would like to ask you about your hepatitis B, whether you would participate in a study?” Then this information is out there on social media.... That’s why I had a very, very good feeling when my doctor approached me about [this interview study] and that it just went through the clinic. If she had said, “Look, someone is approaching you via social media,” or something, then I would have said no, right? Because I wouldn’t have wanted to, because these data/social media make money because they have data. They run the ads based on your data and what you type in there or what you say or whatever. And I don’t want that associated with my disease. [Patient 5]
These findings led us to the following hypothesis: (H5) The more patients value privacy, the lower their acceptance of using social media as a recruitment tool for clinical hepatitis B studies. The hypothesis was operationalized for secrecy (H5a) and data privacy (H5b).
Several interviewed patients with hepatitis B reported fear of being stigmatized if their social environment found out about their diagnosis as an important reason against social media recruitment. One patient, who mentioned that only their closest family members knew about their diagnosis, expressed fear that other people learning the diagnosis would lead to social exclusion:
A broken leg or surgery on the knee or hip. This is apparent to everyone. And everyone assumes that it will heal at some point and that there is no potential infectious danger from these people. Whereas in the case of infectious diseases, no one can assess that, and people get socially excluded very quickly.... And this is why I am so cautious with my data. [Patient 1]
A similar view was shared by patient 5. Another patient added that perception of stigma differed depending on the context:
I come from [Eastern European country], I have moved to Germany. So here the mentality is a little bit different. If you say to someone, I have Hepatitis, he is okay with it. He says: “Oh, is not a problem. Normally here we are vaccinated against it.” If you are going to [Eastern European country] and say: “I have Hepatitis B,” it’s like you have a huge disease that can just be taken by a handshake [laughs]. And so I think that’s why I’m going on the conservative site. [Patient 6]
The connection between the stigma connected to hepatitis B and the social media–connected perceived privacy risks established by several interview participants led us to the following hypothesis: (H6) The higher the perceived stigma of patients, the lower their acceptance of social media as a recruitment tool for clinical hepatitis B studies.
Participant characteristics.
A total number of 195 eligible questionnaires were included in the statistical analysis of the survey study. Table 1 displays the characteristics of the patients with hepatitis B who participated in the study: more than half of the participants (108/195, 55.4%) were aged between 30 and 49 years. Just above half (110/195, 56.4%) reported having lower educational degrees than Abitur (German equivalent to a high school degree). More than half of the participants (111/195, 56.9%) had another mother tongue than German (only). All participants had a chronic hepatitis B infection, as per the inclusion criterion of this study.
Characteristics | Participants, n (%) | ||
Male | 101 (51.8) | ||
Female | 88 (45.1) | ||
No answer | 6 (3.1) | ||
18-29 | 16 (8.2) | ||
30-39 | 50 (25.6) | ||
40-49 | 58 (29.7) | ||
50-59 | 38 (19.5) | ||
>60 | 24 (12.3) | ||
No answer | 9 (4.6) | ||
Yes | 71 (36.4) | ||
No | 110 (56.4) | ||
No answer | 14 (7.2) | ||
German | 101 (51.8) | ||
Other | 111 (56.9) | ||
No answer | 12 (6.2) |
The questionnaire included 7 scales that were measured through several items ( Table 2 and Multimedia Appendices 1 and 4 ).
The level of acceptance for social media recruitment was measured through the SMA scale, which was calculated based on 4 questionnaire items (P6.01 to P6.04; Multimedia Appendix 4 ). Each item was measured by a 5-point Likert scale, ranging from 0 (completely disagree) to 4 (completely agree). Items P6.01 (“Social media are well suited to make patients aware of studies on new hepatitis B treatments”) and P6.02 (“Social media increase the likelihood of success in hepatitis B clinical trials”) formed the subscale of the perceived usefulness of social media recruitment and received moderate agreement (P6.01: mean 1.99, SD 1.23; P6.02: mean 1.81, SD 1.12). Items P6.03 and P6.04 formed the SMA subscale on the perceived usefulness of social media recruitment. Item P6.03 (“I would be recruited via social media for a hepatitis B clinical trial”) received particularly low acceptance (mean 1.13, SD 1.13; Multimedia Appendix 4 ). P6.04 (I would use social media to learn about hepatitis B clinical trials) received a higher mean acceptance score than P6.03 (mean 1.58, SD 1.23; Multimedia Appendix 4 ).
The overall SMA score was calculated by summarizing the scores from items 6.01 to 6.04 and ranged from 0 (no acceptance) to 16 (full acceptance; mean 6.48, SD 3.03; Table 2 ). While 28.7% (56/195) of the respondents rejected social media recruitment with an SMA score of <5, only 10.2% (20/195) of the respondents accepted social media recruitment with an SMA score of >11 ( Table 3 ).
Valid, n (%) | Items, n (%) | Scale, median (range ) | Values, mean (SD) | |
General social media use | 195 (100) | 8 (15) | 11 (0-32) | 11.22 (6.51) |
Social media literacy (hypothesis 2) | 174 (89.2) | 14 (25) | 41 (0-56) | 37.58 (14.60) |
Hepatitis B–related social media use (hypothesis 1) | 181 (92.8) | 6 (11) | 3 (0-24) | 5.22 (5.61) |
Interest in clinical studies (hypothesis 3) | 187 (95.9) | 2 (4) | 6 (0-8) | 5.53 (2.45) |
Trust in medical information sources | 180 (92.3) | 4 (7) | 11 (0-16) | 10.27 (3.64) |
Trust in nonmedical information sources (hypothesis 4) | 175 (89.7) | 7 (13) | 8.5 (0-28) | 8.36 (5,76) |
Acceptance of social media recruitment (dependent variable) | 178 (91.3) | 4 (7) | 6 (0-16) | 6.48 (3.93) |
Secrecy (hypothesis 5a) | 185 (94.9) | 2 (4) | 2 (0-8) | 2.25 (2.09) |
Data privacy (hypothesis 5b) | 186 (95.4) | 2 (4) | 7 (0-8) | 6.25 (2.10) |
Perceived stigma (hypothesis 6) | 180 (92.3) | 6 (11) | 3.5 (0-24) | 5.52 (6.02) |
a Items were measured through a 5-point Likert scale, ranging from 0 (completely disagree) to 4 (completely agree).
Social media acceptance score | Responses, n (%) |
0 | 20 (10.3) |
1 | 4 (2.1) |
2 | 6 (3.1) |
3 | 8 (4.1) |
4 | 18 (9.2) |
5 | 14 (7.2) |
6 | 20 (10.3) |
7 | 20 (10.3) |
8 | 17 (8.7) |
9 | 12 (6.2) |
10 | 8 (4.1) |
11 | 11 (5.6) |
12 | 7 (3.6) |
13 | 7 (3.6) |
14 | 2 (1) |
15 | 1 (0.5) |
16 | 3 (1.5) |
Missing | 17 (8.7) |
Using multiple linear regression analyses, we evaluated the predictors of participants’ acceptance of social media as a recruitment tool for clinical hepatitis B studies. Testing the statistical significance of the overall model fit, the F test indicated that the predictors included in the model substantially contributed to the explanation of the dependent variable ( Table 4 ). Regression analysis revealed that social media use for hepatitis B, interest in clinical studies, trust in nonmedical information sources, and hepatitis B secrecy independently predicted acceptance of social media as a recruitment tool for clinical hepatitis B studies. More precisely, the higher the social media use for hepatitis B, the higher the interest in clinical studies, the more trust in nonmedical information sources, and the less secret hepatitis B, the higher the acceptance of social media as a recruitment tool for clinical hepatitis B studies ( Table 4 ).
Unstandardized coefficients B (SE) | β | test ( ) | value | Tolerance | VIF | |
Constant | 4.007 (1.935) | — | 2.071 (127) | .04 | — | — |
General social media use | 0.060 (0.051) | .098 | 1.175 (127) | .24 | .628 | 1.593 |
Social media literacy | –0.002 (0.025) | –.008 | –0.096 (127) | .92 | .600 | 1.668 |
Hepatitis B–related social media use | 0.279 (0.053) | .391 | 5.299 (127) | <.001 | .804 | 1.234 |
Interest clinical studies | 0.283 (0.127) | .171 | 2.217 (127) | .03 | .732 | 1.366 |
Trust medical information sources | –0.601 (0.683) | –.079 | –0.879 (127) | .38 | .546 | 1.830 |
Trust in nonmedical information sources | 0.252 (0.058) | .359 | 4.307 (127) | <.001 | .632 | 1.583 |
Secrecy | –1.299 (0.542) | –.171 | –2.399 (127) | .02 | .861 | 1.161 |
Data privacy | –0.765 (0.577) | –.099 | –1.326 (127) | .19 | .792 | 1.262 |
Perceived stigma | –0.003 (0.048) | –.004 | –0.057 (127) | .95 | .770 | 1.299 |
Age | –0.052 (0.028) | –.151 | –1.842 (127) | .07 | .648 | 1.543 |
Education | 0.770 (0.567) | .102 | 1.357 (127) | .18 | .782 | 1.278 |
a Overall model fit: F 11,127 =9.221, P <.001; R 2 =0.444; N=139.
b VIF: variance inflation factor.
c Not applicable.
We present the first empirical study investigating how adult patients with hepatitis B accept social media recruitment for clinical studies. Social media have been suggested to increase recruitment accrual, particularly for hard-to-reach populations [ 13 , 14 , 24 ]. Our study provides a more fine-grained contextualization of this potential. We find that acceptance of social media recruitment among patients with hepatitis B is associated with higher ongoing activity on social media with regard to hepatitis B (confirming H1), a generally high interest in participating in clinical studies for hepatitis B (confirming H3), and high trust recruitment channels outside the clinical setting (confirming H4a). Patients with these characteristics are, consequently, recruitable via social media under the assumptions that (1) patients are most effectively recruited via social media if they accept this channel as a recruitment method and (2) people who do not accept this recruitment channel should also not be recruited in this way.
Yet, 54 (27.7%) out of 195 participants reported an acceptance score of <5 and, thus, rejected being recruited via social media. Moreover, only 20 (10.3%) out of 195 participants reported an acceptance score >11, indicating high acceptance. These findings indicate that recruitment success via social media might be limited among patients with hepatitis B in Germany and underline the importance of using multiple recruitment channels to facilitate diversity and equitable health care access, particularly for patient groups considered vulnerable [ 11 ].
Contrary to what we had hypothesized, SMA was not associated with digital literacy (rejecting H2), data privacy needs (rejecting H5b), and perceived hepatitis B–related stigma (rejecting H6), although reported secrecy around hepatitis B diagnosis was a predictor (confirming H5a). Moreover, trust in medical information sources and demographic variables (age and education) as well as the overall frequency of using social media were not associated with SMA. The results for H2 and H4b are not surprising, as the preceding qualitative interviews did not explicitly indicate a linear connection between digital literacy and social media recruitment acceptance. Our study cannot exclude the possibility that there might be a potential nonlinear association, but another survey study also found that digital literacy did not directly affect the intention to use digital technology [ 25 ]. Furthermore, trust is a multifaceted concept [ 26 , 27 ], which is why the subjects of trust were split into medical information sources and other advertisement channels. Hence, it is not unexpected that trust in medical information sources is not associated with SMA.
The rejection of H5b (data privacy) was more surprising, particularly because the qualitative interviews indicated strong connections between data privacy and SMA. In addition, the scholarly debate around data privacy issues has been very salient: data ethicists have repeatedly emphasized the issues related to data privacy and transparency in the context of social media use in the research context [ 12 , 28 , 29 ]. In addition, the European General Data Protection Regulation emphasizes the transparent use of data and the rights of data subjects [ 30 ]. Moreover, various scandals (eg, related to the US presidential election in 2016 and the UK Brexit referendum) diminished users’ trust in social media platforms and increased awareness of data privacy in that context [ 31 , 32 ]. A recent population survey conducted in Germany, the United Kingdom, and the United States confirmed high levels of concern regarding data privacy in all included countries [ 33 ]. Given these public discussions about social media activities being problematic for data privacy, it is particularly astonishing that data privacy concerns (as operationalized in our study) were not predicting SMA. The findings align with discussions around the privacy paradox. It was confirmed in numerous studies that social media users display limited data protection behavior despite being concerned about their privacy [ 34 - 36 ]. In line with this, the aforementioned scandals have not resulted in a decline in Facebook users [ 37 , 38 ]. Other studies suggest a poor user awareness of online privacy [ 39 ] and fatigue in engaging with privacy-related risks [ 40 ]. It seems that the surveyed population with hepatitis B in Germany are also affected by this privacy paradox.
The rejection of H6 (association of stigma) was surprising, too, particularly because of the strong association between hepatitis B and stigma in other studies. An Indian survey study found that most surveyed patients with hepatitis B were subject to severe stigma and moderate to severe discrimination, with gender identification as men, unemployment, and illiteracy being predictors of discrimination [ 6 ]. Other survey studies from Australia, Turkey, and Serbia confirmed the presence of self-reported perception of stigma in 35% to 47% of patients with hepatitis B and 60% to 65% of patients with hepatitis C [ 10 , 41 , 42 ]. An Iranian qualitative study found that patients with hepatitis B conceptualized stigma as both extrinsic (eg, discrimination, public embarrassment, or blame) and intrinsic (eg, perceived rejection, social isolation, and frustration) [ 8 ]. Although this empirical evidence illustrates the relative importance of stigma in the context of hepatitis B, this did not predict patients’ acceptance of social media recruitment in our study. Instead, our findings suggest that the perceived secrecy of a hepatitis B diagnosis, which seems to be unrelated to the perception of stigma, is informative on social media recruitment acceptance. This indicates that perceptions of stigma in other stigmatized diseases (eg, sexually transmitted diseases, and psychiatric disorders) might not influence patient acceptance to be recruited via social media for clinical studies. However, empirical studies within these populations need to confirm this.
Our survey showed a relatively balanced representation of genders. This aligns with a German serological study from 2011, which indicated no statistically significant difference in the prevalence of acute or chronic hepatitis B infection in men and women [ 43 ]. In terms of age distribution, the survey study covered a diverse range of age groups, mirroring the distribution found in the German serological study [ 43 ]. On the basis of these observations, the survey sample overall is representative of the population with hepatitis B in Germany regarding gender and age.
However, it is essential to consider potential limitations and sources of bias. The recruitment strategy used, primarily relying on venue-based recruitment within a clinical setting, might introduce selection bias, as it may not fully capture the diverse population that may exist outside such settings. In addition, only 30.4% (285/939) of estimated incoming patients received the questionnaire, which might introduce an additional selection bias. We attempted to mitigate this by explicitly briefing the study nurses to avoid self-selection when distributing the survey. The low distribution rate has been mainly caused by administrative burden, resulting in weeks during which no questionnaires were distributed. Thus, we do not expect this to have a large impact on selection bias.
In addition, the study’s restriction to the German language may have impaired the accessibility of the questionnaire for participants who do not have German as their mother tongue. In addition, the exclusive focus on a German setting may limit the generalizability of the findings to a broader international context, potentially impacting the study’s external validity. Finally, it is important to note that we have shortened the questionnaire in comparison to its original length after discussion with clinical colleagues, who provided the feedback that the questionnaire was too long. As part of this shortening, some validated scales were replaced by self-developed scales, which may have implications for the comprehensiveness and depth of the data collected.
Consequently, the attitudes of patients in other medical conditions toward social media recruitment, and a comparison to the attitudes of patients with hepatitis B assessed in this study, should be subject to further research. Similarly, it will be important to study how the different social media platforms, their underlying logic, use patterns, and other factors might influence patients’ acceptance of social media recruitment over time.
This study provides the first quantitative data on the acceptance of social media as a recruitment channel for clinical studies. In the context of hepatitis B in Germany, acceptance of being recruited via social media was very limited. More than 1 (28.7%) in 4 participants rejected this recruitment channel. The study sets out to be a reference point for future studies assessing the attitudes and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner. Moreover, this study provides guidance for researchers considering using social media recruitment and ethics review boards judging such undertakings, by cautioning against the potentially low acceptance rates social media–based recruitment might yield for some patient populations. These should be weighed against the risks of social media recruitment for the target populations.
Similarly relevant for practice, the findings indicate that social media recruitment is particularly accepted in patient populations with high interest in participating in clinical studies. This is particularly the case for diseases with insufficient treatment options and historically neglected diseases with high unmet needs [ 44 ]. Using social media as a recruitment channel for studies targeting these patient groups might thus encounter higher acceptance levels than in this study. There was no statistically significant role associated with perceived stigma and data privacy needs among patients, suggesting that these concerns are unrelated to social media recruitment acceptance.
This study received funding from the European Union’s Horizon 2020 research and innovation program (848223; TherVacB). This publication reflects only the authors’ views, and the European Commission is not liable for any use that may be made of the information contained therein. The authors would like to thank all TherVacB clinical project partners who helped recruit for this study and provided feedback on the questionnaire for their kind collaboration. The authors would also like to thank all patients with hepatitis B who took the time to participate in the survey.
None declared.
Response rate information.
Questionnaire.
Assumptions checks for regression analyses.
Description of each item of the questionnaire.
social media acceptance |
Edited by A Mavragani; submitted 27.10.23; peer-reviewed by D Kukadiya, WB Lee; comments to author 26.02.24; revised version received 08.03.24; accepted 03.06.24; published 26.08.24.
©Theresa Willem, Bettina M Zimmermann, Nina Matthes, Michael Rost, Alena Buyx. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 26.08.2024.
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The worldwide population of migrant families is on the rise, and there is growing acknowledgement of the significance of supporting parental mental health within these families. However, understanding of the experiences of migrant fathers during the perinatal period remains incomplete. The objective of this review is to provide an overview of existing research on perinatal migrant fathers’ experiences in different cultures. Multiple searches were conducted in April 2023 for quantitative, qualitative, and mixed-methods studies across six electronic databases: Medline, CINAHL, Embase, PsycINFO, Web of Science, and Scopus. Fourteen eligible articles were identified, including nine qualitative studies, five quantitative studies, and no mixed-methods studies. The Mixed-methods Appraisal Tool was used to assess the quality of these studies. The quantitative findings were transformed into narrative summaries to be analysed thematically along with the qualitative data. Three themes were identified: (1) Cultural competence (dealing with cultural differences, needs related to original country); (2) Parenthood in a new country (challenges and adaptation to fatherhood, challenging traditional gender norms, lack of extended family and building new support networks, being the main supporter for the family); (3) Needs of the fathers and their personal difficulties. The findings of this review suggest a direction for future research in perinatal psychology. The review also provides insights into the need for social and community support for migrant fathers and how healthcare services can support this group during the perinatal period.
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Fathers play many important roles in the family life cycle, including providing support during their partner’s pregnancy and during the first year postpartum, referred to as the perinatal stage [ 1 ]. Although families exist in many configurations, for the purposes of this review we defined fathers as men with a perinatal partner, regardless of the nature of their cohabitation. Given the vital role of fathers during the perinatal period, it is reasonable to suggest that this responsibility may place additional pressures on them, potentially impacting their mental well-being and their ability to offer sustained support to their families [ 2 ]. These effects may be further pronounced among fathers who are first-generation immigrants or refugees in a new country, whom we will simply refer to as migrant fathers in this review. Within the new family dynamic, those fathers often juggle being the primary breadwinner and caregiver while also dealing with the stresses of adapting to a new culture [ 3 ]. Although there have been numerous systematic reviews and even umbrella reviews of research focusing on mothers [ 4 , 5 , 6 ], reviews of perinatal research focusing on fathers have emerged only recently [ 7 ]. A systematic review by Mprah et al. looked into the experiences of fathers in general, including research mostly on non-immigrant fathers, with the experiences of immigrant fathers being addressed only minimally [ 8 ]. To extend on the work of Mprah et al., the current paper concentrates particularly on the lived experiences and cultural challenges faced by migrant fathers living in a new country.
During the perinatal period, fathers encounter a range of mental health challenges. Numerous studies have yielded valuable insights into the mental and psychological well-being of fathers during pregnancy, childbirth, and transition to fatherhood. Wong, Nguyen [ 9 ], found that the risk of psychological distress among fathers during the perinatal period was notably high. Anxiety was common, with up to 25% of fathers experiencing anxiety during the antenatal period and up to 51% during the postnatal period [ 10 ]. Furthermore, the prevalence of fathers experiencing depression during the entire perinatal period was estimated at 8.4% [ 11 ].
Most research has predominantly focused on data from native fathers, leaving a gap in psychological research concerning the mental health of migrant fathers. In 2023, the systematic review by Mprah et al. [ 8 ] captured the experiences of perinatal fathers, including migrant fathers, regarding their interactions with healthcare systems and their involvement in maternity experiences. However, the search terms employed were broad and the inclusion and exclusion criteria were not reported in much detail. The author included only two studies that cover migrant fathers in their general review, suggesting that a more focused review might also be of value. With a focus particularly on the experiences of migrant new fathers, our preliminary library searches identified a few papers that were not included in that review, justifying this additional contribution.
According to Bond [ 12 ], most research on migrant fathers has been conducted in developed countries, focusing on fathers from developing countries [ 12 ]. This could be because those who migrated from countries with similar cultural or socioeconomic backgrounds were found to be less stressed than those who came from different backgrounds of the host country [ 13 , 14 ]. Although the reasons for migration are diverse, but the two most prevalent are unfavourable economic and political conditions in their country of origin [ 15 ]. In a new country, immigrants seek access to higher-quality education, healthcare, and employment opportunities. Successful migration requires significant effort to adjust to a new setting compared to their country of origin [ 16 ]. Migrant fathers in the perinatal period, in particular, encounter numerous challenges during the transition to fatherhood as they navigate the demands of acculturation, adapting to cultural norms and values different from their homeland. Several studies in various countries highlight the lived experiences of these fathers, emphasizing the pressure they face to become the primary support for their families in a new context, balancing traditional demands with host country expectations [ 12 , 17 , 18 , 19 ].
Having to deal with multiple stressors at the same time is a known risk factor for developing psychological issues for migrant fathers [ 12 ]. This may be amplified further when these multiple stressors meet at an intersection. Migrant fathers often have to carry out roles that are different from the expectations of their heritage culture. For instance, many migrant fathers came from countries where gender norms are strictly defined based on biological sex [ 17 ]. These norms can impose restrictive expectations on how fathers are perceived and portrayed, for instance, discouraging their involvement in childcare, and considering it as a woman’s role [ 19 ]. However, when settling in a new country, these fathers may adjust by trying to share equal responsibilities with their wives [ 20 ].
In short, migrant fathers may be at a higher risk of experiencing psychological distress as they experience stressors from both their transition to a new country and their new fatherhood role [ 21 ]. Researchers have started to look at the lifeworld of migrant fathers, particularly the well-being aspect during the perinatal period of their partner. Although those aspects show a spectrum of lived experiences of these fathers, no systematic review has synthesised these multifaceted experiences of this specific population in this critical period. Therefore, the objective of this review is to systematically identify, evaluate, and synthesize published literature on the lived experiences of first-generation migrant fathers, defined as individuals born in one country who have moved to another country to live, work, or study.
This study was pre-registered on the Open Science Framework [ 22 ] and, to improve transparency, we followed the PRISMA statement [ 23 ] and eight QESISAES stages [ 24 ]. In addition, the SPIDER framework [ 25 ] was used to develop review questions and strategies for searching.
A systematic search was conducted in six databases: Medline, CINAHL, Embase, Scopus, PsycINFO, and Web of Science. The original search terms were developed by the research team based on the SPIDER statements specific to this review (refer to Table 1 ), which were then reviewed by an experienced librarian from La Trobe University. The final search terms and Boolean operators are listed in Table 2 . The search was performed in April 2023, and no time restrictions were imposed on publication dates.
The eligibility criteria included being written in English, peer-reviewed, and focused on perinatal care (from early pregnancy to 12 months postpartum) with the inclusion of migrant fathers. If the studies also included participants other than new fathers (e.g., mothers and midwives), the results should clearly show the lived experiences of the fathers. The review exclusively extracted data about fathers by examining each paper line by line. Whenever the authors identified a sentence about fathers, that sentence was included in the pool for later analysis. We only chose studies that analysed primary data and were presented in a full-text format. Opinion pieces, guidelines, case studies, conference presentations, reviews, and unpublished research papers were excluded.
The first author (Vo) imported the search results into Covidence (covidence.org), an online platform that facilitates systematic reviews. Within this platform, duplicate studies were removed, and the titles and abstracts of the remaining studies were screened based on predetermined inclusion and exclusion criteria. Throughout this process, author Vo maintained ongoing discussions with author Mai regarding the selection of studies. Subsequently, a total of forty-three papers were initially considered, and their eligibility was deliberated among all four authors.
Author Vo evaluated the quality of the 14 selected studies using the Mixed Methods Appraisal Tool (MMAT; Hong et al., [ 26 ]). This tool is recommended for the appraisal of quantitative, qualitative, and mixed-methods research designs, focusing on their methodological quality criteria, such as sampling strategies, data analysis, and measurement appropriate. All selected studies were qualified to be analysed in the next step and the appraisal of each study is shown in Table S1 in the Supplementary Materials.
Following the identification of the 14 selected studies, we utilized a template created by the Toolkit for Mixed Studies Reviews [ 24 ]. This template outlines eight key areas that need to be reported in a mixed-methods review: the study author(s), year of publication, country, study design, aim, participants, method of data collection, and findings. In addition, the author also included the strengths and limitations of each study to provide a comprehensive appraisal of the selected studies (Table 3 ). After reporting and appraising the studies, they were entered into NVivo (version 20) for data extraction, synthesis, and analysis.
Because each study had distinct research questions, study designs, and findings, it was not feasible to conduct a quantitative data analysis or directly compare these studies. Instead, a narrative synthesis approach was employed to summarize the diverse findings in a structured manner [ 27 ]. The study followed a convergent synthesis design for the mixed studies review, based on the methodology proposed by Pluye and Hong [ 28 ]. This allowed for the conversion of the results from qualitative, quantitative, and mixed-methods studies into qualitative findings. Within NVivo, the primary author extracted all results related to the lived experiences of migrant fathers. Throughout the synthesis and analysis phases, the primary author engaged in discussions with the other three authors to finalize the synthesis and analysis of the selected papers.
Thematic analysis, following the framework by Thomas and Harden [ 29 ], was used to synthesize the data. According to the two authors, the meta-synthesis process consisted of three stages: line-by-line coding, developing descriptive themes, and generating analytical themes. Firstly, codes derived from selected articles were extracted based on the research question about the lived experiences of the migrant fathers living with their perinatal partner. Subsequently, the codes were organized into similar areas, resulting in the formation of descriptive themes. Finally, in the third stage, a tree structure with various layers was created, based on the descriptive themes. The participant quotes and the author’s interpretations of each theme are included in Table S2 in the Supplementary Materials.
A total of 14,233 studies were retrieved from the six databases. After removing 5,044 duplicate research articles, 9,189 studies were screened based on the suitability of titles and abstracts according to the study criteria. Subsequently, 43 studies underwent a full-text review to assess their eligibility. Following the review and discussion by two researchers (Vo and Mai), 14 articles were selected for this review. Figure 1 presents the PRISMA flow diagram illustrating the search and selection outcomes.
PRISMA flow diagram
Of the 14 included studies, nine were qualitative and five were quantitative studies. The majority of the studies were conducted in the United States ( n = 8), followed by Europe (Sweden, n = 2; Belgium, n = 1), Australia ( n = 2), and South Africa ( n = 1). In total, this systematic review encompassed the experiences of 1,183 fathers, living with their perinatal partners, from 16 origins.
Three themes were identified: (1) Cultural challenges, (2) Parenthood in a new country, (3) Fathers’ needs and personal difficulties. Figure 2 presents an overview of the themes and subthemes identified, which are described with illustrative quotes in the following sections.
Themes and sub-themes of the present study
As shown in Table 4 , eight qualitative and three quantitative studies provided data on new fathers’ experience of cultural challenges. In the synthesis, two subthemes emerged: cultural differences in the host country, and lack of culturally appropriate services.
In general, the studies provide a brief description of the cultural barriers and need for culturally appropriate services. However, all of them were cross-sectional quantitative and qualitative studies and no study reported longitudinal research. Furthermore, the studies did not adequately capture how immigrant fathers navigate their cultural identity and adapt to new cultural norms.
The selected studies consistently highlight differences in cultural values and practices between the fathers’ home country and the host country. Ny et al. identified numerous cultural aspects with which migrant fathers and their families had to contend [ 30 ]. One of the significant challenges they encountered was language barriers. To access information and knowledge, they must learn the language of the host country. The differences also extend to beliefs shaped by the fathers’ original culture. For instance, one father expressed his desire to have “as many children as God is willing to give [ 31 ]”. However, that father felt troubled by the fact that Americans found this unusual, as they typically have no more than two children.
Differences also manifest in the healthcare field, as participants reported being unfamiliar with the perinatal healthcare system, such as undergoing mandated tests and how to work with the insurance system [ 32 , 33 ]. Fathers also faced the challenge of reconciling traditional advice from their original country and that in the new country [ 30 ].
During the perinatal period, fathers have specific cultural needs not only for their partners but also for themselves. In 2012, Lee [ 32 ] found that Korean fathers in the United States desired culturally tailored healthcare services for their wives during the perinatal period This included services like Sanhujori-Won, a Korean postnatal care service providing comprehensive support for new mothers and their newborns [ 32 ]. They believed these services provided valuable professional and effective support for couples.
New fathers also discussed the need for a culturally tailored perinatal support program which provided appropriate information aligned with their cultural competence. Wojnar [ 31 ] highlighted the desire of Somali fathers in the United States for separate perinatal classes without explicit imagery. They stressed the importance of healthcare professionals displaying cultural sensitivity during labour and caring for their wives. Additionally, they faced challenges practising traditional customs, such as offering prayers for newborns, in their host country. Riggs [ 34 ] also identified that it is often believed to be inappropriate for men, even healthcare providers, to witness or touch women’s bodies. As a result, some fathers felt disrespected and frustrated when they did not have the option to choose the gender of the healthcare providers.
As depicted in Table 4 , a prominent theme in the study explored the transition to fatherhood in a new country, examining various influencing factors. This theme encompasses four subthemes: Challenges and Adaptation to Fatherhood, Lack of Extended Family and Building New Support Networks, Challenging Traditional Gender Norms, and Being a Main Supportive Figure. Unfortunately, the data from the nine qualitative studies and five quantitative studies included in the review do not extensively delve into the fatherhood experiences of these fathers. Furthermore, none of the quantitative studies address the impact of lacking an extended family or assuming the role of the main supportive figure on the well-being of these fathers.
During the transition to fatherhood, migrant men underwent a significant transformation in their mindset, moving away from a self-centred perspective and embracing a more family-centred way of thinking. They changed their life goals as they adapted to their new role and prioritised the well-being of their partner and newborn baby [ 33 ]. Fathers embodied a metaphorical bridge between their original culture and the host country, striving to raise their children according to tradition in their new environment [ 30 ].
The role of fatherhood became apparent even before the child was born, as the husband showed concern for his wife’s health and expressed interest in the well-being of their unborn baby during prenatal check-ups [ 35 ]. The experience of witnessing the birth of their child was often regarded as the most profound and emotional moment of fatherhood. This moment provided fathers with a unique opportunity to connect deeply with the essence of fatherhood and reflect on their role in the family, particularly when they cut the umbilical cord for their infant [ 36 ]. At that moment, fathers experienced a deep connection with their wives and newborn children, who would now refer to them as “fathers” [ 37 ].
In general, eight qualitative studies and one quantitative study only offered basic descriptions of the common challenges and changes experienced by migrant fathers during the perinatal period. However, these studies did not delve into the transition process and the strategies fathers employ to adapt during this time.
Eight qualitative studies and one quantitative study indicated that a lack of extended family is a common challenge faced by fathers during perinatal care. Typically, on migration to a new country, fathers leave behind extended family members who traditionally play a crucial role in providing support at this stage [ 33 ]. Fathers also shared that they did not have anyone to talk to about their difficulties [ 32 ]. Capp et al’s quantitative study [ 38 ] also demonstrated that in migrant families, additional adults from the extended family would often share the role of supporting the father during the perinatal stage.
Due to various reasons, not all migrant families have extended family members available to assist. The participants identified financial issues as the primary reason for the lack of extended family support. Hosting an extended family member was often challenging due to limited space in their small houses and the costs associated with supporting the extended family member’s arrival in the new country [ 35 ]. Moreover, due to travel expenses and the need to secure their financial status through employment, fathers and their families were often unable to visit their original country [ 32 ].
To compensate for the absence of extended family, fathers developed new support networks for themselves and their families, representing an opportunity for the fathers to form new relationships with other compatriots [ 37 ]. Additionally, migrant fathers sought support from local community resources, such as Korean churches, other immigrant families in similar age groups, and online social networks [ 32 ].
However, no quantitative study directly examined a hypothesis to test the role of extended family and new support networks for migrant fathers in their new country. Furthermore, there was a lack of studies testing the impact of the absence of extended family and new support networks on the well-being of these fathers.
All of the selected studies provided data on the theme of being a main supportive figure. By synthesising the data, two subthemes emerged; financial responsibility and the main supportive role during pregnancy, childbirth and postpartum.
In general, the chosen studies provided a clear depiction of the primary support role of fathers. Nevertheless, none of these studies explored the long-term impact of assuming this role or delved into the coping strategies employed by fathers during the perinatal period.
Financial Responsibility . Due to societal gender norms and the unique health considerations of women during the perinatal stage, fathers often took on the role of breadwinners in the family [ 30 ]. The migrant fathers expressed that the primary reason for assuming this full responsibility is “ the sense of security in the family [ 39 ]”. Additionally, these fathers believed that being a breadwinner was essential for them to serve as good role models for their children [ 30 ]. Some fathers also shouldered the responsibility of being financial providers for their family members back home [ 35 ].
Main Supportive Role During Pregnancy , Childbirth , and Postpartum. During the perinatal period, fathers played a vital role in providing support for every aspect of their partner’s experience. They took on logistical responsibilities such as driving to appointments, navigating the healthcare system, and assisting with interpretation during healthcare consultations [ 37 ]. They also fulfilled the supportive role of performing domestic chores to share the workload with their partner [ 33 ].
Although it may not be common in the participants’ countries of origin, migrant fathers were reported to assume the role of the primary supporter in the labour room for their partners. This experience has been described as “opening up a new world for them [ 30 ] ” . The fathers experienced a range of emotions for themselves, but their primary focus was to provide mental support for their wives [ 36 ]. They also highlighted that being present in the labour room offered an opportunity to bond with their partners and the new baby [ 37 ].
Eight qualitative studies and two quantitative studies provide data about the transition from traditional gender norms and roles. There were migrant fathers who persisted in adhering to rigid gender norms. They believed that household chores and caring for a baby were tasks primarily designated for women [ 36 , 37 ]. In addition, the weight of financial responsibility extended beyond mere financial needs and was amplified by the pervasive influence of toxic masculinity, believing that as a father they needed to be the breadwinner to be a good role model to their child [ 30 ].
Nevertheless, there was a growing number of fathers who demonstrated understanding and flexibility regarding gender norms [ 40 ]. These fathers recognized the limitations of traditional norms and actively strove to adapt to new societal expectations within a new context. Lee [ 32 ] demonstrated that, unlike the traditional role of Korean husbands, Korean fathers residing in the US actively participate in perinatal care, including labour and infant care. They were also ready for cleaning, food shopping, and cooking. While certain cultures excluded men from the labour room, the host country prompted them to adapt and become primary supporters during childbirth, defying previous norms and fathers were pleased with that opportunity to support their wives [ 34 ].
Roubinov et al., [ 41 ] reported that, while fathers made efforts to be involved in perinatal care, they tended to avoid tasks traditionally associated with femininity such as bathing and diapering. Instead, fathers engaged in activities that correlate with positive aspects of masculinity, such as taking the baby out and playing with their baby.
In summary, while the qualitative studies provided valuable insights, no quantitative study formulated direct hypotheses regarding the topic of gender norms and the role of migrant fathers in their new country. Furthermore, all the data simply described the topic without delving into the process of this transition.
As shown in Table 4 , nine qualitative and three quantitative studies highlighted the psychological distress, specifically stress and depression, experienced by fathers. Two subthemes were identified: Information, and Emotional and Psychological Challenges. The studies do not illustrate how these fathers cope with and recover from these challenges during the perinatal stage, indicating that additional research is required.
Eight qualitative studies (see Table 4 ) mentioned the need for information and training, particularly in the context of culturally tailored programs. Fathers with migrant backgrounds often lack sufficient information and knowledge about the physical and psychological health of their perinatal partners, who undergo significant transitions during this period [ 40 ].
Fathers expressed a desire for more information to better prepare themselves for their role in the labour room [ 36 , 37 ]. They also faced challenges in caring for the baby, as they felt unprepared and wished they had learned more beforehand. In addition, most fathers expressed that they had to acquire knowledge of perinatal care on their own [ 30 , 33 ]. However, they found it inconvenient to access resources because these were not available in their native languages [ 31 , 32 ].
However, the existing research predominantly relies on qualitative methods. There was a lack of quantitative studies with specific outcome measures to understand the impacts of lacking information and training. Consequently, we are unable to observe this phenomenon on a broader scale, nor can we explore its interaction with other variables, such as stress or the decision-making processes of fathers.
Nine qualitative studies and three quantitative studies showed that migrant fathers experienced a certain degree of psychological distress. According to Khalil et al. [ 39 ], approximately 35% of Arab American fathers met the diagnostic criteria for depression. A further study by Khalil et al. [ 42 ] discovered a significant reduction in telomere length among Arab American fathers, indicating a heightened level of stress among this group of men. These quantitative results show a consistent pattern with qualitative findings. Nges et al. [ 36 ] discovered that although Cameroonian fathers in Sweden experienced stress due to heavy workloads, they still made a significant effort to support their partners when they arrived home. These fathers expressed a loss of personal freedom and the burden of being the head of the household with increasing commitments and responsibilities [ 33 ]. In addition, they highlighted the stress from financial reasons as they were the breadwinner in their family [ 35 , 43 ].
Some fathers openly mentioned their challenges when their wives faced mental health issues, particularly postpartum depression. During this time, fathers experienced a mix of emotions, often expressing feelings of helplessness and frustration [ 40 ]. In addition, fathers experienced high levels of stress while providing support in the labour room and witnessing the labour process, particularly when they witnessed pain or scenes with copious blood from their partners [ 32 , 37 ]. Despite experiencing intense emotions, the fathers tried to suppress their feelings because of their role as main supporters [ 36 , 37 ].
Among the three themes considered in this review, that of emotions and psychological challenges of migrant fathers stand out as the most prevalent in the selected studies. Nonetheless, none of the studies have explored the long-term impact of stress and negative emotions on these fathers. It might have been that those fathers would likely develop higher resilience as immigrants and would not have long-term effects from their perinatal experience. Either way, future research can investigate any such long-term effects. Furthermore, all the quantitative research has focused on Arab American fathers, indicating the need for further investigations into other populations.
This review provides a contemporary synthesis of studies on the lived experiences of migrant fathers during the perinatal period. The findings underscore the significance of cultural challenges, the transition to fatherhood in a new country, and the personal needs and difficulties of the fathers. Building on these findings, this discussion is structured into two sections. The first section delves into the depth of the cultural challenges by examining how the fathers negotiate gender norms and core cultural values. The second section addresses their transition to fatherhood including their needs and personal difficulties.
The selected studies showed that the migrant fathers share caring roles and childcare responsibilities with their partners. This aligns with the findings of Mprah et al. [ 8 ], which highlight cultural clashes experienced by migrant fathers navigating differing fatherhood expectations between their home country and the host country. However, this current review provides more nuanced insights into these cultural clashes among a larger cohort of migrant fathers. The selected studies in this review showed that in certain cultures, like Chinese, Korean, and Somalian, involvement in pregnancy, childbirth, and postpartum care might be viewed as breaking traditional gender norms [ 31 , 32 , 44 ]. Therefore, as migrant fathers embrace their new roles in a host country, they change their male identities and family gender roles. Gender identity is a crucial aspect of culture and gendered processes play a major role in the acculturation process [ 45 ]. Thus, negotiating gender norms has emerged as a prominent theme during acculturation [ 46 ]. This necessitates a flexible approach requiring migrant fathers to redefine gender roles within the home and become comfortable with tasks that are traditionally perceived as feminine in their country of origin.
The involvement of migrant fathers during the perinatal stage is crucial due to a lack of support from their extended family in the host country. This necessary participation provides fathers with opportunities to break traditional norms, positively impacting their ability to support their partners. Some fathers express positive views on cultural and traditional changes, suggesting a potentially less stressful perinatal period. Understanding how migrant fathers perceive the opportunities versus the costs of breaking traditional norms is essential. Moreover, traditional norms indirectly affect migrant fathers, as seen in Ethiopia, where cultural stereotypes portraying men as unhelpful in childcare impact fathers’ self-perceptions, influenced by perpetuation in their home country and host country practices [ 37 ]. Health professionals and mothers in the host country often afford fathers more space for caregiving responsibilities compared to the constraints imposed by cultural stereotypes in their country of origin [ 47 ].
The current review also shows that many migrant fathers maintain their heritage cultural values while attempting to adopt the host country’s values. Unlike integration, an acculturative strategy in which the individuals embrace both sets of cultural values [ 48 ], migrant men in the perinatal period found themselves at the intersection of their original cultural values and the host culture, leading to a complex negotiation process that was more complicated than simply being fathers in their home country or acculturating immigrants. This process involves negotiating cultural practices to align with the new culture. The adaptation process varies as fathers selectively adopt cultural practices, modify traditional gender roles, and embrace new gender identities in their new contexts. Achieving this is challenging; however, it is evident that successful integration into the new society facilitates a faster acculturation process [ 48 ] and reduces the risk of mental health illness [ 49 ].
The studies included in this review provide valuable insights into the experiences of immigrant fathers as they navigate the complexities of fatherhood in a new country. The emergent themes in this review show that this process in a new country is closely intertwined with the negotiation of gender norms and core cultural values. During the transition, fathers develop a sense of being a parent to their newborn child while aiming to keep a balance between their cultural values and the new values of the host country. This tension requires fathers to make decisions about which values and customs to preserve for their family and the upbringing of their children. This leads to a renegotiation of their roles as they navigate the demands of their cultural heritage alongside the expectations of the new environment.
In this review, the findings also show the needs and personal difficulties of the fathers. This aligns with previous research by Mprah et al. demonstrating that, like fathers in general, migrant fathers must navigate their evolving roles, including caring for their partner and new baby, adjusting attitudes and behaviours, and confronting various challenges along the way [ 8 ]. However, the current review further reveals that the transition for migrant fathers is particularly challenging due to the simultaneous pressures of acculturation and a multitude of other factors. In addition to navigating the complexities of adapting to a new culture, these fathers must contend with additional stressors such as the absence of extended family [ 38 ], financial constraints [ 50 ], inadequate parenting skills [ 12 ], and challenges in managing stress [ 7 ]. These various factors combine to intensify the difficulties faced by these migrant fathers during this transformative period and resonated across all the reviewed studies. This emphasizes the crucial need for support systems tailored to the migrant fathers during this transformative period.
The examined studies also emphasize the significance of supporting migrant fathers through societal structures and healthcare systems during their transition to fatherhood. Host countries typically provide assistance such as parental leave policies, healthcare services, and culturally tailored perinatal support programs [ 51 ]. However, challenges arise for international students or those on temporary working visas, especially in countries like Australia, New Zealand, and the United States, where eligibility for government support and parental leave is often restricted due to casual employment [ 52 , 53 ]. This limitation can hinder fathers in fulfilling their roles, particularly when they become the primary breadwinners for their families. In addition to government support, social support from networks and communities is crucial for migrant fathers during this transition. These supportive relationships offer emotional, and practical assistance and role models to help fathers adjust and fulfil their new roles [ 54 ]. Such support becomes especially valuable for migrant fathers who lack the presence of extended family in their new country, offering opportunities to redefine gender roles when facing challenges like the mother’s early return to work or the necessity for long working hours to support the family [ 55 ].
Despite the many challenges facing migrant fathers, these studies also illuminated the resilience of those fathers. Regardless of the difficulties, all fathers reported feeling a strong sense of fulfilment in their role while raising the baby and taking care of their partner [ 30 , 32 , 33 ]. Furthermore, these fathers, driven by their commitment to family, consistently strive to acquire knowledge and skills to support themselves as their families go through the challenges in the period. Also, this resilience could motivate these fathers to reach out to their community for support and develop helpful connections in the new country [ 56 ].
This review combines qualitative and quantitative studies for a comprehensive analysis of migrant fathers’ perinatal experiences. However, due to scope limitations, it does not include grey literature or articles in languages other than English. Besides, all the included studies were conducted in developed countries, and most of them focused on migrant fathers from developing countries. Therefore, the review may not capture all aspects across diverse backgrounds. Also, since research found that reasons for migration influenced outcomes [ 57 , 58 ], the current review kept the search terms for the participants as broad as Migrant, hoping to capture studies on its sub-categories (e.g., refugee and asylum seekers). However, none of the selected studies specifically detailed the reasons for migration among their participants. Therefore, the findings in the current review could not differentiate between the experiences of forced migrants and non-forced migrants. Finally, the heterogeneity in methodology is both a strength and challenge, hindering conclusive common themes. Future research could explore homogenous groups, focusing on migrant fathers with the same origin and host country for a more nuanced understanding.
This review synthesizes recent studies on migrant fathers’ experiences during the perinatal period and it addresses significant gaps in existing literature that predominantly focuses on mothers. The findings underscore the importance of redefining traditional masculinity and increasing support for migrant fathers. While some community efforts exist, they lack adequate research attention to establish their efficacy. Encouraging more collaborations between perinatal researchers and community service providers is essential for developing and evaluating support programs for migrant fathers. This not only benefits fathers and their families but also contributes to the education and training of future clinicians. In conclusion, the review identifies common themes in migrant fathers’ experiences, emphasizing the need for further research and clinical interventions to address these issues and bridge existing gaps.
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