Table 2 Themes Identified

Time

Time constraints due to physicians’ high workload and patient’s and caregiver’s care

“I’ve been so busy. I’ve been going through so much trials and tribulations, I haven’t been able to, to respond to the mail, the information.” (PT 23)

87%

44%

Privacy Concerns

Concerns with how researcher had obtained their information and how their personal information is shared

“When they reached out to me personally, I was more worried about HIPPA. I was worried that any information I provided was going to go into third party hands.” (CG 25)

0%

48%

Research Familiarity and Attitudes

When approached, primary care physicians were unaware of the current study and patients and caregivers ambivalent views of research

“Well, I think I was a little taken back at first, ...because I had never been in a study or any kind of research.” (PT 2)

0%

28%

Disconnect with Research Institution

Patient’s and caregiver’s lack of connection with the research institution

“When I saw [name of research institution] it wasn’t part of the group I was with. And I’ve never been there... I was never treated at [research institution], so I was kind of wondering how they would be. How would I get involved with them? It’s not a name I’m used to around this area. You know, we have [local institution], or we have [local institution], or we have [local institution].” (PT 6)

0%

20%

Randomization

Participants expressed concerns with the randomization aspect of a randomized control trial

“If they really needed the palliative care and they’re getting usual supportive care. I think, they are being short changed…either you get the better care or not.” (PCP 2)

26%

16%

Patient’s Health Condition

Patients felt unable to participate due to the severity of their current diagnosis

“I just had six months out of my… third heart operation and I just didn’t really know what you were doing, so I just didn’t want to get involved.” (PT 11)

0%

22%

In-person Recruitment

Researchers should recruit participants in person

“In person, I believe it’s better because you can look [at a] person and explain better than [mail or email]. You don’t see anybody … [in] email or mail. I believe in person [is] better.” (PT 21)

0%

25%

Recruitment at Healthcare provider’s office

Researchers should provide information and recruit patients at healthcare provider’s office

“So at least if it’s coming from somewhere along my healthcare chain, then at least to me, I might pay half attention to it, you know what I mean?” (PT 17)

0%

28%

Flyer at Clinic

There should be a brochure with study information for patient, caregivers, and physicians at healthcare provider’s office

“It could be helpful to bring brochures, having out some handout… that they can read more details, I think it is a good idea.” (PCP 47)

23%

0%

Letter Recruitment

Patient’s and caregiver’s request to receive a letter as initial source of recruitment

“Maybe start out with a letter in the mail, followed by a phone call explaining how the program works, and what it’s going to lead to, and who’s going to be involved.” (PT 10)

0%

22%

Outreach Frequency

Patients and caregivers recommended having multiple points of contact during recruitment

“…doing a lot of check-ins or saying the same information in a couple different ways. And then also laying out like, this is step one, what would happen, step two, what would happen.” (PT 22)

0%

16%

More Information

Researchers should provide an outline and better explanation with all study details

“It should be explained better as to who they are, who everyone represents better, so that you understand that better.” (PT 7)

0%

19%

Money

Physicians recommended researchers offer a financial incentive for their time

“For me, again, pay me enough money, I’ll do it.” (PCP 4)

84%

0%

Dinner/Formal Event

Researchers should host a formal event to explain research study to physicians

“Take us out to meet some of the people, small trip to the university, out to dinner.”(PCP 33)

29%

0%