August 5, 2019
As the number of cancer survivors increases, there is a lack of evidence-based, culturally relevant and supportive care programs for Latino/a cancer survivors. But Carmina G. Valle, PhD, assistant professor of nutrition at the UNC Gillings School of Global Public Health, and her team have adapted a program to fill this gap.
A new paper, “¿Ahora qué?: Cultural Adaptation of a Cancer Survivorship Intervention for Latino/a Cancer Survivors,” was published July 1 in Psycho-Oncology. Valle is the lead author and also a member of the UNC Lineberger Comprehensive Cancer Center.
Post-treatment programs for cancer survivors can improve diet, physical activity and weight among cancer survivors and show promise for reducing morbidity and mortality. Despite these benefits, relatively few interventions have been developed or modified for Latino/a cancer survivors.
Valle says Latino/a cancer survivors’ needs may differ from those of survivors from other populations, necessitating the development of evidence‐based, culturally appropriate cancer survivorship programs. This group historically has experienced poorer access to health care compared to other racial and ethnic groups, and they are less likely to be diagnosed with localized cancer. These survivors, therefore, may experience a greater need for informational and supportive care.
“Using materials that are not culturally adapted might result in non-participation in programs or use of materials,” says Valle. “For example, if nutrition information isn’t tailored to culturally relevant foods, populations may not invest in dietary changes.”
Using an evidence-based model for cultural adaptation, a team from the Lineberger Comprehensive Cancer Support Program, led by Director Donald L. Rosenstein, MD, adapted a widely used, community-based survivorship program for Latino/a populations. Since 2008, the “Cancer Transitions: Moving Beyond Treatment (CT)” program has supported survivors transitioning from cancer care to post-treatment care with six weekly group sessions focused on wellness, exercise, emotional health, nutrition and medical care, as well as some of the commonly faced physical and emotional challenges of survivorship.
To adapt the CT program materials, the researchers began by conducting five focus groups of Latino/a cancer survivors across the nation. Information from the focus groups showed that participants preferred to communicate in Spanish and that the involvement of their families is critical. Researchers also found a need to adapt materials to respond to participants’ concerns about financial issues, the stigmatized view of cancer in their communities, the importance of trust and respect in provider-patient relationships, cancer’s impact on sexuality, and the role of religion/spirituality in their communities.
“We heard from study participants that cancer is highly stigmatized, a lack of health insurance often led to financial challenges and they saw disease as disability,” Valle says. “Several focus group members mentioned that their jobs involved physical labor, so not being able to reach up — perhaps post-mastectomy or due to other physical limitations from cancer — resulted in job loss.”
Both the CT participant workbook and facilitator guidebook were translated into Spanish by experts with experience translating different Spanish dialects and were reviewed for accuracy by two Spanish‐speaking team members who shared countries of origin with some participants. Appropriate changes also were made to the literacy level, and a five-minute period to pray, reflect or meditate was added to weekly sessions. The facilitator guidebook also included information on immigration issues, which might impact program participation for some participants.
“Our work can help guide the cultural adaptation of other survivorship programs for Latino/a cancer survivors,” says Valle. “Culturally adapting and delivering evidence-based programs to survivors who have been historically underserved can help increase the reach of supportive care programs and make an impact on more diverse communities of cancer survivors and their families.”
Contact the Gillings School of Global Public Health communications team at email@example.com.