Levels of Participants Satisfaction with Initial Contact and Examination Visit: The Hispanic Community Health Study/ Study of Latinos (HCHS /SOL)

Abstract

Objective: This study examined perceived satisfaction among Hispanic/Latino individuals who participated in a baseline examination for the Hispanic Community Health Study/Study of Latinos (HCHS/SOL), a large cohort study of 16,415 adults living in four selected communities.Method: An estimated 22% (n= 3,584) of participants completed a questionnaire regarding satisfaction with staff attention, the overall experience during the study examination, and the influence of the informed consent digital video disc (DVD). Results:The majority of participants who completed the questionnaire expressed overall satisfaction with the study. Most participants reported that staff were friendly, courteous and respectful and study test procedures were clearly explained. Participants who preferred to complete the interview in Spanish felt that the informed consent DVD positively influenced their ability to make an informed decision to enroll in the study. Participants who preferred to complete the interview in English tended to report that the baseline examination was longer than expected compared with participants who completed the interview in Spanish. Conclusion:Results demonstrate that culturally and linguistically trained staff and the use of the study's informed consent DVD were effective in explaining study procedures and positively influenced decisions to participate in the HCHS/SOL study. These results can inform recruitment and enrollment strategies for future participation of minority groups into longitudinal cohort studies.

Challenges and opportunities in establishing a collaborative multisite observational study of chronic diseases and lifestyle factors among adults in Puerto Rico

“…The fairly fast fulfillment of recruitment goals suggests that our locations, scope of the study, and incentives were sufficiently convenient and attractive to volunteers. Strategies that have been shown to help increase participation and retention among minority groups include promptly providing incentives, having a familiar, accessible, and comfortable location, and developing tools to clearly explain the study’s purpose, importance, and procedures [ 60 , 61 ].…”

“…The BPRHS reported a retention rate of 84% at 2-years follow-up [ 62 ], and a study of older adults (≥60y) in PR had 90% retention for the second wave [ 24 ], suggesting participants’ commitment to the studies. Other studies have suggested that Latinos have a strong willingness and trust to participate in biomedical studies, and are motivated by the perceived importance of the study topic and a desire to acquire and contribute to new knowledge [ 61 , 63 – 65 ]. While material incentives are not always a strong motivation for participation in health programs among Puerto Ricans [ 66 ], they should be fair and commensurate to the time and effort of the study [ 60 ].…”

“…While material incentives are not always a strong motivation for participation in health programs among Puerto Ricans [ 66 ], they should be fair and commensurate to the time and effort of the study [ 60 ]. Additional incentives such as health literature or services, transportation, raffles, food, or pastime activities, may also be valuable [ 61 , 66 ].…”

“…Interviewers of the same heritage or cultural values (i.e. : respect, personal approach, affability, same language) can further increase trust and participants’ satisfaction [ 61 ]. In fact, the emotional reactions from some participants when asked sensitive questions, may have been due to connecting with and trusting the interviewer.…”

“…This included having a pilot period to identify issues in the field, frequent debriefing team meetings, repeated data quality checks, and qualitative feedback from participants and interviewers. Requesting participants’ feedback was also done and recommended in the HCHS/SOL [ 61 ]. The questionnaire was shortened to decrease the length of the interview, but further efforts to keep interviews short and running swiftly, as well as including short breaks during the procedures, could be beneficial [ 61 ].…”