Deciding to Participate: Motivations and Hesitations: People's motivations for participating in research studies are diverse. Many are eager to do so and find it meaningful to volunteer. People also often weigh a combination of logistical, health-related, financial, and substantive factors when making choices and may decide not to participate. 

 

Experiences during Research: Satisfactions and Frustrations: People find both benefits and frustrations in their experiences with research. 

 

 

What ideas or actions sparked for you?

For People and Families:

• Study participation was a personal decision, and it was sometimes complicated.
• Sometimes people had to put their own needs first.
• Timing and health may make a specific research opportunity difficult. For some this was a "not now" response, leaving the door open for participation in the future.
• Advocating for oneself with the research team could sometimes make the experience fit better with one's life.

For Healthcare Professionals:

• People consider many factors when deciding about participation. Asking open-ended questions may help people describe what is important or worrisome to them.
• Many "patients" thought of themselves as partners in or contributors to research; honoring that perspective may be important.
• Diverse representation in studies was important to many people. Sharing the demographics of who has/has not participated with potential participants was helpful.
• Research could make people feel frustrated or disappointed, and many expect empathy, respect and validation of their concerns. 
• Timing mattered to participation; someone not ready now may be later. Keeping people informed about research opportunities may be welcome.