To better understand research participation among hard-to-reach populations, this exploratory investigation examined characteristics of enrollees and non-enrollees from a population-based longitudinal study with African-American and Latina-American breast cancer survivors.
A mixed-method recruitment approach was utilized to enroll participants from cancer registries and community groups who were 1–6 years post-diagnosis.
Four hundred and sixty-eight participants agreed to participate constituting an 81 % participation rate; 65 and 55 % completed Time-1, and both Time-1 and Time-2 assessments, respectively. African-Americans were more likely to agree to participate and complete the T1 assessment (73 %) than Latinas (62 %) (p < 0.05). Participation was influenced by educational attainment and comorbidities (p < 0.05) for African-Americans. Among Latinas, language proficiency, comorbidities and psychological difficulties (p < 0.01) influenced participation.
Our findings suggest that enrollment in research studies may be influenced by complex and multi-dimensional factors stemming from subjects’ characteristics including ethnicity, culture, language proficiency and literary, and socioeconomic status, as well as medical characteristics including co-occurring chronic illness and psychological status. Thus, comprehensive, multi-method research studies are urgently needed to better understand and address the challenge of minority recruitment in biomedical research. To increase research participation among cancer survivors, it is imperative to implement focused strategies that will support and encourage individuals’ enrollment and continued participation in studies.