¿Ahora qué?: Cultural Adaptation of a Cancer Survivorship Intervention for Latino/a Cancer Survivors

Abstract

Objective:

With a steadily increasing number of Latino/a cancer survivors, there is a need for supportive care programs for this underserved survivor subgroup.

Methods:

In this study, the authors culturally adapted an evidence-based survivorship program, Cancer Transitions: Moving Beyond Treatment® (CT) for this population. Guided by Barrera and Castro’s heuristic model for cultural adaptation of interventions, we conducted 5 focus groups (FG) among Latino/a cancer survivors (n=54) in several US sites to inform the preliminary adaptation of program materials. We conducted 4 additional FGs (n=38) to obtain feedback on adapted materials.

Results:

Common themes from initial FGs were related to program delivery and logistics, and general recommendations for CT modification. Program adaptations addressed information needs, including health care system navigation, employment concerns, and sexuality. Other adaptations included an emphasis on family, spirituality, culturally appropriate translation and features, and role plays. Participants in the second round of FGs confirmed adaptations incorporated earlier findings and suggested additional refinements.

Conclusion:

This project helps guide the cultural adaptation of survivorship programs for Latino/a cancer survivors.

Introduction

There are over 15 million cancer survivors living in the United States (US).¹ Among Latino/as in the US, 1 in 3 will be diagnosed with cancer.² Though Latino/as have lower incidence and death rates for common cancers than non-Hispanic whites, they have poorer access to and less utilization of healthcare relative to other racial/ethnic groups,³ and are less likely to be diagnosed with localized cancer.² Latino/as with cancer report lower quality of life (QOL)⁴ and experience a higher number of informational and supportive care needs⁵ as compared to African-American and non-Hispanic whites with cancer. As such, Latino/a cancer survivors may experience different supportive care needs than other populations.

The rapidly changing demographics of US cancer survivors have challenged healthcare providers to provide high-quality care for this growing population, resulting in a pressing need to develop and disseminate evidence-based, culturally appropriate cancer survivorship programs for Latino/as. Psychoeducational interventions for survivors have been shown to improve QOL.^{6, 7} Behavioral interventions can improve diet, physical activity and weight among survivors and show promise for reducing morbidity and mortality.⁸ Despite these benefits, relatively few interventions have been developed or modified for Latino/a survivors.⁹

One widely disseminated survivorship program is Cancer Transitions: Moving Beyond Treatment® (CT). Developed by the Cancer Support Community (CSC) and LIVESTRONG, CT was initially implemented and evaluated across 10 US sites.¹⁰ The community-based program was designed to support survivors in the transition from active treatment to posttreatment care and has demonstrated positive physical activity and QOL outcomes.¹¹ CT includes 6 weekly group sessions focused on wellness, exercise, emotional health, nutrition, medical care, and life after treatment. Group sessions led by physicians, nutritionists, nurses, and fitness experts are 2½ hours per week and provide education, support and resources regarding the physical and emotional consequences of cancer, late effects of treatment, follow-up care, and symptom management. Program materials include a facilitator guidebook (guidebook) and participant workbook (workbook) with 6 educational modules, an exercise log, food diary, and action plan.^{10, 12}

The Comprehensive Cancer Support Program at the University of North Carolina at Chapel Hill (UNC) has implemented CT across North Carolina (NC) since 2008 and received multiple requests to offer the program for Latino/as cancer survivors. To address these requests and ensure development of a culturally and linguistically appropriate program relevant to diverse communities of Latino/a cancer survivors, we reviewed extant literature, examined CT program components for possible mismatch with cultural contexts, and determined the need for both surface structure and deep structure adaptations, addressing cultural and social factors.^13–15 Given our experience implementing CT and available resources, we chose to culturally adapt an existing program for this population. While our constituents who requested the program in Spanish language share a linguistic community, they are culturally diverse with ancestry originating from various countries. Thus, our goal was to systematically modify CT to consider language, culture, and context in such a way that the program would be compatible with the cultural patterns, meanings, and values of the diverse community of Latino/a cancer survivors we serve.¹⁶

Methods

Study Overview

Cultural adaptation of CT was based on three stages of Barrera and Castro’s¹⁷ heuristic model: (a) information gathering; (b) preliminary adaptation design; and (c) preliminary adaptation test. To gather information, we conducted 5 focus groups (FG) with Latino/a cancer survivors across 5 sites (Raleigh and Winston-Salem, NC; Miami, FL; New York, NY; Austin, TX) between January-February 2014. Sites were selected based on representation of both newer and established immigration destinations and researcher locations. Findings informed the preliminary adaptation design of program materials. We conducted 4 additional FGs between July-September 2014 (NC, FL, NY, TX) as a preliminary adaptation test to obtain feedback on proposed program adaptations.

Participants and Recruitment

We recruited a convenience sample of participants locally through UNC and nationally through the CSC and its community partners. Participant eligibility criteria were: 1) diagnosed with cancer; 2) self-identified as Latino/a; 3) Spanish-speaking; and 4) over 18 years of age. We used multiple recruitment channels: listservs, email, radio, and contacts with healthcare professionals and cancer advocates. Local team members confirmed eligibility by phone and invited individuals to a FG. Study procedures were approved by the UNC Institutional Review Board (IRB Study #13–0739). All study participants provided informed consent.

Focus Groups

We completed 5 FGs (7–14 participants per group, n = 54), each lasting 2 hours. FGs were conducted in Spanish and led by bilingual staff with graduate level training in public health, psychology, or social work, all of whom had previous training and experience facilitating FGs. At the start of each FG, participants introduced themselves and shared their country of origin. Given concerns about mistrust related to research,¹⁸ information on income and insurance status was not collected in an effort to maximize participation and minimize fear regarding how the information might be used. The FG guide included open-ended questions about survivorship, posttreatment needs, the CT program, and managing life after cancer (Supplement A). Participants received $50 after FG completion. All FGs were audiotaped, transcribed in Spanish by team members, and translated into English by an outside vendor.

Data Analysis

FG transcripts were analyzed by five team members (MG, MM, NP, PR, VL) using Dedoose (Version 7), with at least one native Spanish-speaker and one non-native speaker per transcript. Team members reviewed transcripts and conducted applied thematic analysis using an inductive approach to identify emerging and recurring themes.¹⁹ After independent reading of transcripts, we developed a codebook which was iteratively revised through group discussion of emergent themes and consensus. Two-person teams coded each transcript using the final codebook. After data saturation was reached and no new themes emerged, we concluded analysis, and identified and discussed key findings that informed preliminary adaptation.

Preliminary Adaptation

Based on FG findings, we completed preliminary adaptation design by culturally adapting the CT program and existing materials.²⁰ Pairs of team members, each of which included a native speaker or researcher with written and oral fluency in Spanish, reviewed and revised the six CT sessions and workbooks. Materials were revised to include culturally relevant information and themes identified during FGs. Each session was then translated into Spanish by an outside vendor using multiple transcriptionists with experience translating various Spanish dialects. Two team members reviewed the materials for accuracy and to ensure cultural feasibility and acceptability of translated content.

Second Round of Focus Groups

To conduct a preliminary adaptation test, we completed a second round of 4 FGs in 4 states. Participants included participants from the initial FGs (n = 22) and survivors with no previous exposure to CT (n = 16), in order to elicit both informed and new perspectives on the adaptations. Since many first-round FG participants expressed dismay that other researchers had collected data from communities without reporting back to them, we purposively sampled first-round participants and shared the initial findings. FG facilitators described key findings from earlier FGs and elicited feedback on whether findings were incorporated appropriately. Facilitators outlined cultural adaptations to session topics, using slides to guide discussion (Supplement B). After reviewing proposed topics (i.e., getting back to wellness, exercise, emotional health, nutrition, medical management, dealing with day-to-day concerns), the facilitator asked about acceptability of the adapted materials. FGs lasted 2 hours and participants received $50 for participation. FGs were audiotaped, transcribed, and translated into English.

A similar approach was used to analyze the second round of FGs. Pairs of team members reviewed each transcript and used applied thematic analysis to identify, code, and categorize overarching themes. Results were discussed to determine which findings could be feasibly incorporated into modifications or new materials given organizational resources and time constraints.

Results

Participants

Fifty-four Latino/a survivors participated in the first round of FGs, and 38 in the second round (Supplement C). Participants were from 9 different countries/territories of origin, and 85% were female.

Information Gathering

Key themes that emerged from FGs fall into two main categories: ‘program delivery and logistics’ and ‘general recommendations (Table 1). Themes are italicized and described below with illustrative quotes and linked to relevant cultural values conveyed in FGs and identified in our literature review. More detailed descriptions are provided in Supplement D.

Table 1.

Cultural adaptations based on participant suggestions and literature

Themes	Related Cultural Values	Adaptations Operationalized
Program Delivery and Logistics
Conduct program in Spanish	Confianza (confidence/trust) Personalismo (personalism)	Required bilingual facilitator
Family Involvement Program Implementation Exercise Nutrition	La Familia (The Family)	Included family in program orientation, physical activity and nutrition action plans Discussed family buy-in around healthy eating
Respond to community needs	Confianza (Trust)	Program delivered in location considered safe by Latino/a community members
General Recommendations
Perceptions of cancer and survivorship	Fatalismo (Fatalism)	Addressed stigma and how cancer viewed in Latino/a communities
Employment, finances, and health insurance concerns		Added chapter on workplace issues (e.g., employee rights, legal assistance, navigating disability claims, accessing insurance)
Patient-provider communication and navigating healthcare system	Respeto (Esteem) Confianza (Trust)	Discussed differences between home country and US medical systems Added patient-provider communication role play
Religion/spirituality	Fe y espiritualidad (Faith and Spirituality)	Amplified spirituality and faith focus by adding Take Five (quiet time) and spiritual health column to action plan
Sexuality		Addressed cultural norms around intimacy issues Discussed regaining desire after cancer

Program Delivery and Logistics

Participants were more comfortable expressing themselves in Spanish.

Although some participants were bilingual, they strongly preferred program delivery in their native language. One participant noted, “having a facilitator person in Spanish. They speak with very clear terms, ones which we could soak up, understand better.” Participants emphasized that a Spanish-speaking facilitator could promote confianza, or trust ,²¹ and personalismo, or making a personal connection with the facilitator²².

Family involvement is critical to program implementation.

Participants conveyed that la familia, or family, plays an important role in Latino/a communities, including extended family. Participants were interested in learning how cancer affects family life and including family in an orientation or separate program. They noted family members are often a source of emotional support, but sharing their cancer experience with them can be tough. Survivors were concerned about worrying their family. Some described relying on support groups for emotional support as they felt they had to hide their emotions to protect their families. One participant stated: “They have no idea what cancer means… but since it’s happening to a member of the family, that’s where you have to educate the whole family. It’s very important.” The importance of la familia was also emphasized when discussing physical activity and nutrition. Making lifestyle changes were noted to be challenging without family support.

Respond to community needs.

Participants highlighted the importance of confianza, implying a trust based on rapport and relationships with individuals,²¹ including program facilitators, and recommended the program be held in a location already being used by the community and considered safe by Latino/as. They also requested: 1) that a program be offered from the point of diagnosis, suggesting CT could provide resources from day one; 2) physical activity resources include meaningful options, such as Zumba and dance, and 3) help in addressing concerns about eating well when the prices of healthy, organic foods are so costly.

General Recommendations

Perceptions of cancer and survivorship.

Participants were not familiar with the term “survivorship.” For many, cancer was equivalent to a death sentence, exemplifying fatalismo, or the belief that an illness or event is beyond one’s control or due to fate.²³ Perceptions that life is “completely different” and people are “disabled” after cancer was common. Participants desired an opportunity to share their testimony about how they survived. This quote illustrates the common stigma around cancer:

“When my family found out that I had cancer they thought that I was going to die…they think it is death, but it is not.”

Employment, finances and health insurance concerns.

Some survivors described leaving the workforce after diagnosis. Those who were employed felt physically challenged in the workplace and worried about their ability to complete tasks. Many participants expressed fears about coworkers and employers knowing their cancer history and avoided leaving work for appointments. Additionally, participants desired to learn about legal rights in the workplace, especially those whose immigration status could limit available workplace protections. Many expressed concerns about finances due to the cost of cancer, insurance, immigration, family dependents, and living expenses: “That’s the barrier I have. The bills are coming and those don’t stop. There are bills but no checks.” Some described difficulties faced by those without health insurance: “There are people who after they finish [treatment], because they [have] no insurance, they don’t come back.”

Patient-provider communication and help navigating the healthcare system.

Both confianza and respeto (i.e., respect), or lack thereof, were important influences on patient-provider communication. Participants felt ill-prepared to navigate their healthcare due to multiple barriers, including lack of comfort with providers, medical terminology challenges, and poor access to interpreters. They suggested that navigation would help: “I think that is one of the most important parts for your recovery. The relationship that you have with your doctor, your oncologist, your social worker. I was diagnosed when I first arrived here and I didn’t know any English. I couldn’t communicate with the doctors.”

Religion/spirituality is a cross-cutting issue.

The concept of religion/spirituality emerged across themes and was consistent with the strong faith and spirituality (fe y espiritualidad) prevalent among many Latino/as who look to religion for guidance.²² Participants reported their faith in God was a way of coping with their illness and treatment; church was one of their most helpful resources. Participants wanted greater attention to faith in CT. One participant expressed a commonly held belief: “I am a child of God and I think he is with me at any time.”

Emphasize sexuality.

Sexuality and body changes were frequently discussed. Participants noted that increased emphasis on sexuality is essential. One participant noted: “Change to your body is very difficult to accept yourself, and yes if [it is] difficult to accept your body yourself, how will it be for your husband?”

Second Round of Focus Groups

Participants provided feedback on whether the above results were adequately captured in adapted materials and offered ideas for the program name. Participants did not relate to the word ‘transitions,’ and suggested “¿Ahora qué? La vida después del tratamiento de cáncer” (Now what? Life after cancer treatment). They felt this captured the sense of treatment completion but also the overwhelming uncertainty of moving forward.

Cancer Transitions Adaptations

Supplement D describes how findings were operationalized to adapt CT. Changes included adaptations to program content and delivery in both the workbook and guidebook. Both were translated into Spanish by an outside vendor with experience translating different Spanish dialects and reviewed for accuracy by two Spanish-speaking team members who shared countries of origin with some participants. One request that was not incorporated was to provide support from time of diagnosis. After consulting with CSC and LIVESTRONG, it was determined that patient needs at diagnosis were different enough to warrant a separate program and would not be included in the current adaptation. Substantive changes to the materials are detailed below.

Participant Workbook

To optimize the literacy level, we made formatting changes, such as including more visuals and white space, along with several content changes. Spirituality was incorporated into weekly sessions; participants were given 5 minutes per week to pray, reflect, or meditate depending on spiritual preferences. Content was added on the following topics: health insurance, employment, differences between the healthcare systems in the US and Latin American countries, and a patient-provider communication role play exercise. We also incorporated a Cancer Survivor Health Toolkit, originally part of the LIVESTRONG Promotores Program, which helps participants organize health concerns, prepare questions for their healthcare team, and coordinate medications.²⁴ It includes several tools, such as follow-up visit checklists, a survivorship care plan, and other health resources.

Facilitator Guidebook

Guidebook adaptations were similar to workbook adaptations. Program delivery in Spanish by a facilitator who is bilingual in English and Spanish is highly encouraged. We added a section detailing common Latino/a cultural beliefs to orient facilitators to Latino/a communities and provide information on the importance of cultural adaptation, how cultural beliefs may affect behavior, and how and why we adapted the program. We added an icebreaker activity, which provided participants with structured time and space to talk about their cancer experience, establish group trust, and share personal goals. Finally, the new guidebook includes a sample 4-week program should a facilitator choose to shorten the program due to community needs.

Discussion

In response to local communities’ requests to offer a wellness program for Latino/a cancer survivors, we adapted an existing evidence-based program. Based on an established adaptation framework and a series of FG discussions, we gained insights into the needs of Latino/a cancer survivors and families. We identified salient themes, content, and delivery logistics to guide program adaptation. This study contributes to the limited research on culturally appropriate cancer survivorship programs for Latino/as and can help guide the cultural adaptation of other cancer support programs and interventions.

We adapted an existing program, with 6 classes and materials for participants and facilitators. Other studies have adapted multimedia decision aids,²⁵ printed health education materials,^26–28 and brief health interventions²⁹ for Latino/a populations. Previous interventions focused specifically on Latino/a survivors developed out of partnerships among community-based organizations, Latino/a survivors, caregivers and researchers,^{30, 31} and community health outreach services.^32–34 To our knowledge, this is the first study to describe the adaptation of an evidence-based program that is currently being offered to English-speaking survivors across the country. We chose adaptation over development of new programming because it allowed us to more efficiently respond directly to constituent requests, while collaborating across community organizations with limited resources.

Our findings regarding the importance of incorporating family and cultural values, and accommodating literacy level are consistent with commonly used strategies for adapting content, or modifying deep-structure components of health interventions.^13–15 Similarly, interventions for Latino/a survivors have involved co-survivors, family members, and caregivers,^{31, 33, 35} while others have focused on individual survivors.^{30, 36}

Other major adaptations centered around strategies for program delivery, or surface structure features,^{13, 15} and specific information needs. These included translation of materials, incorporation of culturally relevant features (e.g., exercise, traditional foods), and inclusion of hands-on activities, which are often integrated into cultural adaptations of behavioral health interventions.^{13, 14} We also added education regarding sexuality, health insurance, spirituality, patient-provider communication, employment, and finances; Latino/a survivors have expressed interest in these topics in previous studies.^{37, 38} While Latino/as often value having a personal relationship with their doctors,²¹ many in the US describe feeling more distant to medical professionals and therefore often seek less care.^{21, 39} Cultural norms may influence patient or family views of health professionals as authority figures with whom they do not feel comfortable expressing disagreement or asking questions.^{25, 40} The adapted materials discuss the differences between US medical systems and other home countries, incorporated a patient-provider communication role play exercise, self-advocacy, and integrated LIVESTRONG Promotores tools. We also included education about relevant cultural beliefs given that future program facilitators may come from various backgrounds.

The adapted program addressed immigration issues, acknowledging that some Latino/as may have undocumented immigration status, which can add stress and influence program participation. We incorporated discussions about immigration into the guidebook and encouraged facilitators to discuss immigration concerns and financial issues. However, these components may be of limited benefit to Latino/a survivors without additional structural and policy changes to improve healthcare access and workplace protections for immigrant communities. Though many survivors expressed a desire for programs from diagnosis on, we retained the focus on posttreatment survivorship. Further program development and research on interventions that provide support to Latino/a survivors from the moment of diagnosis are warranted.

Study strengths include the use of an established framework to guide cultural adaptation and qualitative FG discussions to elicit Latino/a cancer survivors’ perspectives. We used a second round of FGs to obtain feedback on preliminary adaptations, and inclusion of a relatively large number of participants facilitated data saturation. Participants represented diversity in country of origin and were selected from 3 distinct US regions, including states with longer (TX, FL) and shorter histories (NC) as destinations for Latino/a immigrants.

Study Limitations

Despite these strengths, this study should be considered in the context of limitations. We did not collect detailed socioeconomic data, and our findings might have limited generalizability to Spanish-speaking Latino/as around the US. However, our process provides a model that can be used to adapt health interventions for different cultural groups and in various US geographic regions. Although a member of our research team is a cancer survivor, we did not engage a community advisory board. Future studies should consider forming an advisory board or including patient representatives on the study team.

Clinical Implications

Based on our experiences, we offer recommendations for culturally adapting programs that are responsive to community needs. First, spend adequate time on translation and review of materials to ensure the incorporation of community recommendations and cultural feasibility of content. Second, involve enough bilingual personnel to balance workload among team members. In the absence of professional translators on staff, vendors may be used to ensure high-quality linguistic translation, but may require substantial resources. Third, consider the relevance of immigration issues. Immigration status was a sensitive topic for many participants, as immigration-related policies changed over the project period. Finally, it is helpful to obtain feedback on program adaptations from participants who provided initial input. Individuals who participated in both FG rounds underscored the importance of including feedback from individuals that understand how the program currently runs.

With the Latino/a survivorship population in the US steadily increasing, there is a need for programs relevant to this underserved subgroup of cancer survivors. Using an approach guided by a framework for cultural adaptation of evidence-based interventions, we adapted the existing CT program to support dissemination to other Latino/a communities. This culturally adapted cancer survivorship program holds promise for reaching underserved Latino/a cancer survivors and promoting health and wellness after cancer.