The research fatigue and beneficence scale: development and validation in a nationwide cohort of transgender women in the United States and Puerto Rico

This study developed and validated a novel scale measuring research fatigue and beneficence among transgender women in the US and Puerto Rico, revealing that perceptions of being over-researched negatively impact retention while feelings of empowerment vary by race/ethnicity, underscoring the need for culturally tailored, participant-centered research practices.

The Gist

Imagine you are a guest at a very popular, but exhausting, party. You've been invited to this party (research study) dozens of times. Every time you come, you have to fill out a long questionnaire, answer personal questions, and give a small sample of your blood or saliva.

At first, you thought, "Maybe this will help my community!" But after the 20th time, you start thinking:

• "Do they even care about me, or am I just a number?"
• "Is all this effort actually making things better for us, or are we just being used?"
• "I'm tired. I don't want to come back next time."

This feeling is called Research Fatigue.

Now, imagine a different scenario. You come to the party, and the hosts say, "Thank you! Your input actually changed the rules of the game. Here is a report showing how your help saved lives. We value you." You feel proud, heard, and useful. This feeling is called Research Beneficence.

What This Paper Did

The authors of this paper wanted to build a thermometer to measure these two feelings (Fatigue and Beneficence) specifically among transgender women in the US and Puerto Rico.

Transgender women are often "over-sampled" in HIV research. They are asked to participate in studies constantly, sometimes feeling like "lab rats" rather than partners. The researchers wanted to create a tool to ask: "Are you feeling burnt out, or are you feeling empowered?"

They developed a 7-question survey (a "scale") and tested it on nearly 2,200 transgender women.

The Key Findings (The "Temperature" Reading)

1. The "Burnout" vs. "Empowerment" Mix
The study found that these feelings aren't just opposites; you can feel both at the same time.

• The Good News: Most participants felt that participating in research made them feel like they were doing something good for their community. They felt a sense of beneficence (empowerment).
• The Bad News: Many also felt that their community didn't see the actual benefits, or that researchers weren't listening to them.

2. The "Race" Factor
The thermometer read differently depending on who you were.

• Transgender women of color had a complex experience: They felt more empowered by participating (they felt proud to help), BUT they also felt more that the research was happening to them too often and that their specific communities weren't seeing the results.
• It's like being a star player on a team that wins championships, but feeling like the trophy is always given to someone else, and the coach keeps asking you to run extra laps without explaining why.

3. The "Too Often" Warning Sign
One specific question was a huge red flag: "Do you feel like you are asked to participate in research too frequently?"

• People who said "Yes" to this were much more likely to quit the study early.
• They were also more likely to skip questions in the survey (missing data).
• They preferred less invasive tests (like a mouth swab) over blood tests, likely because they were trying to avoid any extra "burden."

Why This Matters (The "So What?")

Think of research like a garden.

• If you keep harvesting the same plants (participants) without watering them or showing them the fruit, the garden dies. The plants stop growing, and the harvest stops.
• Research Fatigue is the garden drying up because the plants are over-harvested.
• Research Beneficence is the gardener showing the plants the fruit, explaining how the harvest feeds the whole neighborhood, and asking the plants what they need to grow better.

The Takeaway for Researchers

The authors are telling scientists:

1. Stop treating people like "guinea pigs." If you ask too often, people will leave.
2. Show the results. Don't just take data and disappear. Tell the community, "Because you did this, here is what changed."
3. Make it easier. If a blood test is too much, offer a mouth swab. If a 2-hour survey is too long, make it 30 minutes.
4. Listen to the "No." If someone says they are tired of being asked, respect that.

In a Nutshell

This paper created a new tool to measure how research participants feel. It found that while many transgender women want to help their community, they are often tired of being asked. To keep the "garden" alive, researchers need to stop just taking and start giving back—by being transparent, reducing the burden, and making sure the participants feel like valued partners, not just data points.

Technical Summary

1. Problem Statement

Transgender women are a frequently researched population, particularly regarding HIV prevention, yet they often report feeling "over-researched," undervalued, and disconnected from the benefits of study participation.

• Research Fatigue: Defined as the adverse impacts of research participation due to its frequency, volume, or intensity. Consequences include feeling like "guinea pigs," emotional exhaustion, mistrust, and disengagement.
• Research Beneficence: An underdeveloped construct defined as the perception that research participation is empowering, appreciated, and beneficial to the individual and their community.
• Gap: While qualitative literature documents these sentiments, there is a lack of validated quantitative tools to measure these constructs. High levels of fatigue can introduce selection bias, reduce recruitment/retention, and compromise data quality.

2. Methodology

Study Design & Sample

• Context: Secondary analysis of baseline data from the ENCORE Study, a nationwide epidemiologic cohort of transgender women and transfeminine individuals in the US and Puerto Rico.
• Participants: 2,189 participants (analytic sample) recruited between April 2023 and December 2024.
  • Inclusion Criteria: Age ≥18, assigned male at birth, self-identified as transgender woman/woman/transfeminine, HIV-negative, residing in the US/PR/DC.
  • Exclusion: >1 missing item on the scale or "prefer not to answer" on >1 item; baseline surveys completed before May 30, 2023 (due to a programming error).
• Setting: Hybrid cohort (remote/digital and in-person hubs in Atlanta, Baltimore, Durham, Miami, NYC, San Diego).

Instrument Development

• Scale Construction: A novel 7-item Research Fatigue and Beneficence (RFB) scale was developed based on literature reviews, prior qualitative work, and consultation with a transgender advisory board.
• Items:
  • Research Beneficence (4 items): Assessing empowerment, community benefit, and policy impact (e.g., "Participating in research makes me feel like I am doing something for the good of my community").
  • Research Fatigue (3 items): Assessing frequency of requests and emotional exhaustion (e.g., "I feel that I am asked to participate in research too frequently").
• Scoring: 5-point Likert scale (Strongly Disagree to Strongly Agree). Items were summed to create total scores and subscale scores.

Psychometric Evaluation

• Reliability: Assessed via Cronbach's alpha (thresholds: ≥0.70 acceptable, ≥0.80 good).
• Validity:
  • Construct Validity: Confirmatory Factor Analysis (CFA) using fit indices (CFI >0.95, TLI >0.90, SRMR <0.08, RMSEA <0.08).
  • Convergent/Divergent Validity: Correlated with validated measures of Transgender Pride, Social Support, Community Connectedness, Anticipated Discrimination, and Psychological Distress (Kessler-6).
  • Predictive Validity: Tested against 6-month study retention, survey missingness, and preference for HIV testing modalities (Oral Fluid vs. Dried Blood Spot).

Statistical Analysis

• Performed using Stata version 18.
• Chi-square tests for demographic differences; Pearson's r for correlations; CFA for factor structure.

3. Key Contributions

• First Quantitative Tool: This study presents one of the first validated quantitative measures specifically designed to assess both research fatigue and research beneficence simultaneously.
• Dual-Construct Framework: It moves beyond purely negative metrics (fatigue) to include positive metrics (beneficence), acknowledging that participants can feel both empowered and exhausted.
• Validation in a High-Risk Cohort: The scale was rigorously validated within a large, diverse, nationwide cohort of transgender women, a population historically burdened by research.
• Actionable Insights: The study links specific psychometric findings to concrete study design outcomes (retention, data quality, testing modality choice).

4. Results

Psychometric Properties

• Full 7-Item Scale: Demonstrated good internal consistency ($\alpha = 0.70$) and excellent model fit.
• Beneficence Subscale (4 items): Showed strong internal consistency ($\alpha = 0.78$) and excellent model fit.
• Fatigue Subscale (3 items): Showed poor internal consistency ($\alpha = 0.47$) and was not recommended for standalone use.
• Item 6 Anomaly: The item "I feel that I am asked to participate in research too frequently" had no unique variance in the CFA but was retained for predictive analysis due to its strong conceptual relevance.

Demographic Variations

• Race/Ethnicity: Transgender women of color reported higher levels of empowerment (beneficence) but also higher concerns that their communities do not see the benefits of research and felt more frequently asked to participate.
• Age: Older participants were less likely to feel their best interests were central to the research and more likely to believe their community saw no benefits.

Predictive Validity

• Retention: Participants who endorsed Item 6 (feeling asked too frequently) were significantly less likely to be retained at the 6-month follow-up.
• Data Quality: Endorsement of Item 6 was associated with higher survey missingness at follow-up.
• Testing Modality: Those feeling over-approached were more likely to choose the less invasive oral fluid HIV test over the more sensitive dried blood spot (DBS) test, potentially compromising the detection of recent HIV infections.

Validity Correlations

• Both scales were positively associated with Transgender Pride, Social Support, and Community Connectedness.
• Both were inversely associated with Anticipated Discrimination and Psychological Distress.

5. Significance and Implications

Scientific Rigor & Ethics

• Mitigating Bias: By identifying and measuring research fatigue, investigators can proactively address factors that lead to attrition and selection bias, particularly among marginalized groups.
• Participant-Centered Design: The findings underscore the need for culturally tailored study designs that balance scientific necessity with participant burden.

Practical Recommendations

• Dissemination: To enhance beneficence, researchers must improve transparency regarding how data is used and actively disseminate results to participants and communities.
• Burden Reduction: Offering multiple, less invasive testing options (e.g., oral fluid vs. DBS) can reduce fatigue and improve retention without sacrificing scientific goals, provided counseling is offered on sensitivity trade-offs.
• Community Engagement: Establishing and maintaining Community Advisory Boards (CABs) is critical to ensuring research benefits are perceived as real and relevant.

Limitations

• The sample consisted of individuals already engaged in research, potentially underestimating fatigue among those who have dropped out entirely.
• Potential social desirability bias may exist, though assurances were given.
• The scale requires replication in other populations and research contexts.

Conclusion
The study successfully validates a tool to measure the dual dimensions of research experience. It highlights that while many transgender women feel empowered by research, a significant portion feels overburdened and disconnected from policy impacts. Addressing these perceptions through intentional study design and dissemination is essential for ethical and scientifically robust research.