A LATINX COMMUNITY’S EVALUATION OF THE CULTURALLY ADAPTED CONEXIONES PROGRAM

Background

Alarming cancer disparities in young Hispanic women (<50 years) include younger presentation age (e.g., breast, gynecological cancers), higher infectious-type cancer incidence (e.g., cervical), and higher incidence by geographic region (e.g., U.S.-Mexico Border) (Boyle, and McPadden, 2004; Centers for Disease Control and Prevention, 2016; Coughlin, et al., 2008; Haile, et al., 2012; Yanez, McGinty, Buitrago, Ramirez, and Penedo, 2016). Although Hispanics are one of the youngest and fastest-growing populations in the U.S. (Palacios, Kittleson, and Rodriguez-Herrera, 2012), interventions designed to help diagnosed women and their families cope with cancer have mainly been validated on non-Hispanic White women (Lewis et al., 2006, 2015, 2016).

The Enhancing Connections (EC) Program is an evidence-based intervention (EBI) designed to equip the cancer-diagnosed mother with parenting and communication skills to manage her child’s cancer-related concerns and assist her child in coping with cancer (Lewis et al., 2015). EC is guided by the transtheoretical model of coping, the contextual model of parenting, and Social Cognitive Theory (Lewis et al., 2015) (Table 1).

Table 1.

Description of Enhancing Connections Intervention Sessions

Session	Description
Session 1: Anchoring yourself to help your child	Positions the mother to be a more attentive listener to the child as well as add to the mother’s self-care skills.
Session 2: Adding to your listening skills	Assists the diagnosed mother in developing skills to deeply listen and attend to the child’s thoughts, concerns, worries or understandings.
Session 3: Building on your listening skills	Adds to the mother’s abilities to elicit and assist the child in elaborating the child’s concerns or feelings.
Session 4: Being a detective of your child’s coping	Helps the diagnosed mother focus on and non-judgmentally interpret the child’s ways of coping with the cancer. Also offers her ways to elicit their child’s report of what the mother can do to assist the child to cope.
Session 5: Celebrating your success	Focuses on the gains the ill mother made in prior sessions and what the mother accomplished, in their own words, in parenting their child about the cancer. Both self-monitoring and self-reflection are key elements to enhance the mother’s self-efficacy in parenting their child.

Note. Adapted from “The Enhancing Connections Program: A six-state randomized clinical trial of a cancer parenting program,” by FM Lewis, et al., 2015, Journal of Consulting and Clinical Psychology, 83(1), p. 15. Copyright 2014 by the American Psychological Association.

A randomized clinical trial testing the efficacy of the EC program demonstrated significant improvement in the mother’s mood (i.e., depression and anxiety) and parenting skills, and the emotional-behavioral adjustment of her child (Lewis et al., 2015). The EC-T, adapted for telephone delivery, demonstrated similar positive outcomes for diagnosed mothers and their children (Lewis et al., 2016). Validation groups establishing EC as an EBI, however, consisted predominantly of non-Latina White (NLW) mothers of privileged socioeconomic status (SES) (Lewis et al., 2006, 2015, 2016), questioning its generalizability to mothers of diverse race/ethnicities and SES levels. EC may lack the cultural relevance needed to recruit, engage, and retain racial/ethnic minorities (Garcia, Zuñiga, and Lagon, 2016), rendering it ineffective for these subgroups (Castro, Barrera, and Holleran Steiker, 2010). To increase community buy-in, engagement, and retention of underserved minority populations, researchers recommend including the new consumer group in culturally adapting and tailoring EBIs (Barrera, Berkel, and Castro, 2016; Domenech Rodríguez, Baumann, and Schwartz, 2010; Vesely, Ewaida, and Anderson, 2014).

Cultural Adaptation of Enhancing Connections for Latinas

Researchers have developed frameworks for cautiously adapting interventions while retaining fidelity to the theoretical and therapeutic components of the original intervention (Barrera, Castro, Strycker, and Toobert, 2013; Castro, Barrera, and Martinez, 2004; Domenech Rodríguez et al., 2010). The framework outlined by Castro et al. (2004) guided the cultural adaptation of the EC program for Latina mothers diagnosed with cancer (Table 2). This framework helps identify sources of mismatch across three major dimensions between the validation and new consumer group.

Table 2.

Framework Used to Culturally Adapt the EC for Latina Mothers Diagnosed with Cancer

Dimensions of Adaptation	Description	Source of Mismatch	Examples of activities taken to adapt Conexiones
Cognitive information	Modifying the program’s content for the consumer to understand it.	Language Ethnicity Socioeconomic Status Staff Competence	Adjusted the program’s materials to match literacy levels and dialect/colloquialisms in the consumer population. Translated to Spanish.
Affective-motivational	Modification of program activities based on the cultural values or traditions of the consumer group.	Family Stability	Cultural values and parenting practices reported by the consumer group (i.e., diagnosed Latina mothers) in qualitative studies were incorporated into the scenarios and activities of the Conexiones materials.
Environmental	Ecological aspects of the community.	Urban-Rural Context Community Readiness	Assessed consumer environment and resources to establish if structure, channel, and format of EBI were appropriate for the consumer group (e.g. forms of delivery). Assessed resources and existing communication programs for Latina cancer survivors. Assembled a resource booklet. Determined need for the program.

Note: Adapted from “The Cultural Adaptation of Prevention Interventions: Resolving Tensions Between Fidelity and Fit,” FG Castro, M Barrera, and CR Martinez, 2004, Prevention Science, 5(1), p. 42. Copyright 2004 by Society for Prevention Research.

To address mismatches within the cognitive-informational dimension, the EC adaptation adjusted dialect, colloquialisms, and literacy level to enhance comprehension of educational materials by Latina mothers in the US-Mexico border region. This was done for both the English and Spanish versions of EC to accommodate the new consumer group of Latinas (i.e. Mexican-American women) (Reyes et al., 2016).

Regarding affective-motivational mismatches, the adaptation incorporated parenting and culturally-linked experiences of Latina mothers diagnosed with cancer. The environmental adaptation involved assessing the availability of cancer resources for Latina mothers in the border region and incorporating these in a cancer resource booklet. The adaptation also used the new consumer’s preferred medium for delivery (i.e., telephone) (Reyes et al., 2016; Palacios et al., 2018)

While cultural adaptations may interfere with the adherence to theory-driven or therapeutic components of the parent program (Castro et al., 2004), the EC program developer (Lewis et al., 2006, 2015) guided researchers in protecting the fidelity of EC as they culturally adapted the program. After the researchers addressed all sources of cultural mismatch between NLW mothers and Latina mothers for the EBI, they renamed the program Conexiones.

While researchers now recognize the importance of culturally adapting EBIs, most fail to engage the new consumer group in evaluating the acceptability of their initial adaptations (Chu and Leino, 2017). Persistent areas of mismatch (e.g. education and acculturation levels) between the Latina mothers diagnosed with cancer and the Latina researchers that adapted Conexiones may have prevented an optimal adaptation. Engaging Latina mothers in evaluating the EBI’s initial adaptation would help ensure that the program is a good fit with the comprehension level and cultural beliefs of the new consumer group. As this evaluation should occur before testing the efficacy of the adapted program (Castro et al., 2004, 2010; Chu and Leino, 2017), researchers in the present study conducted focus groups with Latina mothers to evaluate the adapted Conexiones program’s contents and activities. This was done in both English and Spanish to ensure both sets of materials were a good cultural and linguistic fit for Latina mothers diagnosed with cancer on the US-Mexico border.

Purpose

The purpose of this qualitative study was to describe Latina mothers’ recommendations for correcting persistent areas of mismatch in the adapted Conexiones program.

Methodology

Three focus groups with Latina mothers evaluated cognitive and cultural areas of mismatch and made recommendations for corrections to the adapted Conexiones.

Participants

Eligibility criteria included being a Latina mother from a border county in the southwest with the ability to read in English and Spanish. A panel of eight bilingual Latina mothers ages 26–40 participated in two focus group sessions. A third focus group session included 10 bilingual Latina mothers ages 38–58.

Measures

Eight questions guided the focus group discussion of the cognitive-informational (e.g., problems in the wording and sequencing) and affective-motivational (e.g., cultural relevance) mismatches in the English and Spanish versions of the Conexiones materials (Table 3).

Table 3.

Focus Group Questions Guiding the Evaluation of the Conexiones Program

Wording	Which sentences of the section were difficult to read or understand?
	Were difficult words used or hard to understand?
	Were the wrong words used to convey something in Spanish?
Sequencing	What was confusing about the section?
	How can we make it easier to understand?
	Was the sequencing of the instructions confusing in any way?
Cultural relevance	Are the wording and sayings in this section culturally relevant to our Latina population?
	Are any of the parts incompatible with Latina beliefs or with parenting practices?

Procedure

Upon IRB approval, participants were recruited via flyers, social media, word of mouth, and Community Health Workers. Participants called research staff to enroll in the study. Focus groups were scheduled at convenient locations for participants.

Participants completed informed consent and a brief demographic survey. Then they participated in three-hour focus groups. All focus groups were conducted in English and Spanish. A bilingual researcher moderated the focus groups while three bilingual research assistants took notes. A panel of eight Latina mothers participated in two focus group sessions evaluating the Conexiones Patient Educator Manual. The second group of 10 Latina mothers evaluated the Conexiones Mother’s Workbook in a single focus group session.

Focus group participants received English and Spanish copies of the Patient Educator Manual or Mother’s Workbook for review. The moderator read each section out loud in English and then instructed participants to identify problems in the wording, sequencing, and cultural relevance of the materials by marking areas of concern with a highlighter and writing comments within those respective sections. The group then discussed problem areas and made recommendations for corrections. The procedure was immediately repeated for the Spanish version of the same section. This same process occurred for all sections. All focus groups were audio-recorded. Participants received breakfast/refreshments and a $50 gift card at the end of the session. A high redundancy in problems identified and recommendations made by both the Patient Educator Manual and Mother’s Workbook focus groups suggested saturation.

Data Analysis

Two bilingual researchers transcribed audio-recorded focus groups. Spanish sections of the transcripts were maintained in Spanish to identify problematic sections of the Spanish educational materials. Participants did not review transcripts or participate in data analysis.

Transcripts were uploaded into ATLAS.ti software for analysis and audit trails. The transcript data were unitized as ideas rather than as full sentences for analysis (Shands, Lewis, and Zhalis, 2000). An inductive approach was used to analyze the data and identify recommendations for correcting problem areas in the Conexiones program (Thomas, 2006; Lewis and Deal, 1995). The ATLAS.ti Code Manager was used to organize codes resulting from the inductive analysis. Units were compared with each category to ensure goodness of fit and to other units within its selected category to ensure consistency (Haberman and Lewis, 1990). Constant comparative analysis across categories of recommendations ensured mutually exclusive subcategories. Subcategories were then grouped into larger order categories (Strauss, 1987; Strauss and Corbin 1990). Three bilingual researchers coded and categorized to consensus, systematically peer debriefed, and maintained an audit trail to protect the trustworthiness of study results.

Results

Focus group recommendation categories were organized according to the cognitive-informational dimension (Table 4) and the affective-motivational dimension (Table 5) of adaptation.

Table 4.

Focus Group Recommendations within the Cognitive-Informational Dimension of Conexiones

Categories	Subcategories	Definitions
I. Finding the right words or order of words	1. No direct equivalent in Spanish	Use of fancy words (Palabra dominguera); Struggling to find the word
	2. Having a different language in this region	Using words or phrases that are more common in the border region The border region has a unique dialect
	3. Suggesting a new word or phrase	To improve comprehension or ease of delivery
	4. Removing unnecessary words	Reducing the text by removing unnecessary words.
	5. “Cantinfleando”, circular reasoning, or nonsense	Circular reasoning/nonsense Repeated use of a word with different conjugations Repeated use of a word, once as a noun and once as verb
	6. Correct misspelled words	Correct mistyped or misspelled words
	7. Re-order words	Described by participants as “el burro por delante” Reverse order of adjective and noun or verb and adverb
II. Literal or incorrect translation from English to Spanish	1. Literal translation	Words or phrases were translated literally rather than being interpreted
	2. Just not making sense	Translation of the materials did not make sense
	3. Correct bad grammar in Spanish	Spanish content was following English grammar rules rather than Spanish
III. Not understanding the meaning or purpose of the program materials	1. Changing the meaning of the education materials	Recommendations made to the content would change the meaning of education materials
	2. Not understanding the need for open-ended questions	Recommendations made to rephrase questions would not follow the open-ended question structure that is needed

Table 5.

Focus Group Recommendations within the Affective-Motivational Dimension of Conexiones

Categories	Subcategories	Definitions
I. Softening the language	1. Overusing the word “cancer” is like a slap in the face	The word “cancer” was overused throughout the program material and sounded offensive
	2. Sounding negative	Sounding aggressive Insulting words Feeling bad
	3. Warming the tone to fit with Latina culture	Warming the tone when delivering the program to better engage with Latinas
	4. Use of “tu” vs “usted” consistently	Use either “tu” or “usted” consistently throughout the program
	5. Needing to be more conversational	Sounding robotic Being too scripted Not responsive to the participant Too clinical/technical

Cognitive-Informational Dimension

Finding the right words or order of words.

Seven subcategories highlighted errors in wording and recommendations for re-wording or rephrasing to facilitate comprehension and ease of delivery of the educational materials.

No direct equivalent in Spanish.

Participants struggled translating abstract constructs in the English script that had no equivalent words or phrases in Spanish to capture their meaning. One participant stated “I don’t know that there’s a word for ‘role playing’. ‘Juego de roles’, no se me hace” [referent: Role playing, I don’t think so]. These abstract concepts resulted in a suboptimal Spanish translation.

Having a different language in this region.

Participants highlighted the need to use words that the border population would understand. “[The border]has its own dialect now, you know?” While the English word listener was well understood, its Spanish translation, oyente, was not. A participant expressed, “That word ‘oyente’, they’re gonna be like ‘huh?,’” suggesting it was not a common word on the border. As representatives of the new consumer group, participants felt they served as “la voz de la comunidad” [English translation: The community’s voice].

Suggesting a new word or phrase.

Participants identified words or whole phrases that were difficult to understand. New Spanish wording or phrases were recommended to better capture the meaning intended from the English materials. They suggested “… instead of saying ‘anclándote’ [referent: anchoring yourself] you go with ‘estabilizando tus emociones’ [referent: stabilizing your emotions].”

Removing unnecessary words.

To ease the flow and improve comprehension of the Patient Educator script, participants suggested removing repetitive or unnecessary words. “I think that we don’t have to put ‘tu hijo’ [referent: your child] for everything throughout the whole thing…We don’t need that…it’s implied that it’s the kid.”

“Cantinfleando,” circular reasoning, or nonsense.

Some Spanish translations repeated the same verb although conjugated differently within the same sentence leading to nonsensical phrases. “‘Finalmente, tu harás las tres preguntas que apoyarán el apoyo para como lidia tu hijo.’” [English back translation: Finally, you will ask the three additional questions that will support how you support how your child copes.] Such faulty Spanish translations were often the result of poorly worded English sections. Resolutions required first simplifying the English script and then translating to Spanish.

Correct misspelled words.

Some Spanish words on the script were mistyped, such as “‘contradicciones’, no ‘contracciones.’” [English translation: contradictions, not contractions].

Re-order words.

Participants recommended the order of the adjectives and nouns be reversed in some areas of the Spanish translation. For example, whereas ‘the possible responses’ was translated to “las respuestas posibles,” the participants suggested it should be “las posibles respuestas.”

Literal or incorrect translation from English to Spanish.

Three subcategories identified the loss of meaning that occurred during the translation of the materials.

Literal translation.

Participants identified literal translations that did not consider the context of the message. For example, “Anything exciting happen at school today?” was translated to “¿pasó algo excitante en la escuela?” Participants stated that the Spanish word excitante suggests sexual arousal, making it an improper translation. Participants also highlighted the importance of considering context when translating to Spanish. Spanish translations of words like coping vary by context. One translation, lidiar, means to deal with something while another translation, sobrellevar, means to overcome. Literal and out of context Spanish translations resulted in content not making sense.

Just not making sense.

Participants reported that the English Conexiones script appeared complex and difficult to understand in some sections, which resulted in equally convoluted Spanish translations. In such cases they provided corrections to both the English and Spanish scripts. When considering the English phrase “You will start by referencing the stressful situation you chose to discuss and the child’s behavior that told you your child was upset”, participants reported it did not make sense and needed to be re-written in both languages.

Correct bad grammar in Spanish.

While participants agreed the English scripts were cognitively appropriate for the border population, they recommended substantial corrections to the Spanish scripts. Many grammatical corrections concerned missing or misplaced accents, which led to Spanish words being misread and therefore misinterpreted. The Spanish translation also suffered from incorrect prepositions. A participant stated, “‘una material’ it’s ‘ningún material’.” [English translation: ‘a material’ its ‘any material’].

Not understanding the meaning or purpose of the program materials.

Two cognitive-informational subcategories described recommendations that would violate fidelity to the original EBI and, therefore, were not implemented.

Changing the meaning of the education materials.

Participants made recommendations that would change the meaning and intent of the program. When discussing the Spanish translation for listener role, a participant suggested “en lugar de ‘papel de oyente’ diría ‘en tu papel de confidente.’” [English translation: instead of the ‘listener role’ I would say ‘confidante role’]. This recommendation incorrectly suggested that the mother should be a confidante rather than a listener for their child.

Not understanding the need for open-ended questions.

Conexiones teaches mothers to formulate open-ended questions that engage their children in conversations regarding cancer. A participant suggested changing the open-ended question to a closed-ended question, “‘What questions do you have about what you have heard?’, maybe we could just phrase that as ‘Do you have any questions?’” Implementing this recommendation would violate fidelity to the original EBI.

Affective-Motivational Dimension

One affective-motivational category captured the recommendations needed to make the program materials culturally sensitive.

Softening the Language

Five affective-motivational subcategories were identified to make the program more engaging and beneficial for Latina survivors. Some participants identified insulting language in the scripts, while others suggested that Latina survivors may prefer warmer language to help them feel better supported.

Overusing the word ‘cancer’ is like a slap in the face.

The participants explained how overusing the word cancer throughout the script could be irritating to Latina survivors. “… in English it sounds clinical and it’s the right term. In Spanish, ‘cancer’ almost sounds like an attack. She knows she has cancer. I don’t think she could ever forget it.” Another reason for reducing the use of the word cancer shared by participants was Latinas’ tendencies to minimize talking about health problems, “We talk about everything but we don’t talk about the thing that’s killing us.”

Sounding negative.

Participants reported certain words and parts of the script sounded negative or demeaning. For example, the English script stated certain situations could trigger emotions such as feeling teary. However, a participant stated that the Spanish translation seemed insulting, and exclaimed “¿Llorona?…¿¡Tienes cáncer y luego te dicen llorona?!” [English translation: Crybaby!?… You have cancer and then they call you a crybaby?!]. Participants made recommendations to modify all language in the script that sounded similarly negative.

Warming the tone to fit with Latina culture.

Participants mentioned that the script should have a warm tone because “… you’re talking to women that are Latinas … we’re just warmer. We communicate on a more empathetic level.” Where the instructions sounded too demanding, they suggested being mindful of the diagnosed mother’s demands and incorporating a warmer tone to engage the participant in completing the assigned task.

Use of “tú” vs “usted” to make it more personable.

Throughout the script, there was inconsistent use of formal and informal ways of addressing a person (e.g. usted vs. tú). “The Spanish goes from ‘tú’ to ‘usted’ … if you want to make it personable where they feel open, I think it’s better to use ‘tú’ so they feel they are talking to a friend.” Participants suggested these edits would create a warm and supportive dynamic between the Latina survivor and Patient Educator.

Needing to be more conversational.

Participants reported concerns that the delivery of the script “…feels very scripted” and “very robotic”. They stated that the Latina survivor may not fully engage in the program if it did not have a conversational tone. “I just think the context in Spanish is very clinical. So, we’re softening it up.”

Discussion

The community’s evaluation of the adapted program helped identify additional cognitive-informational and affective-motivational corrections required to optimize the fit of Conexiones for diagnosed Latina mothers. Recommendations to improve the ease of comprehension occurred primarily within the Spanish version of Conexiones. At times, the literal translation of the English educational materials resulted in nonsensical content, which participants described as Cantinfleando, or an incongruent manner of speaking without saying anything (Pezzati, 2007). The sections were corrected by simplifying the English script, by correcting out-of-context Spanish translations, or by removing unnecessary words contributing to a nonsensical Spanish script. Abstract terms or catchphrases in the English script lacking a direct Spanish equivalent were described conceptually in the Spanish script. Finally, the unique border dialect was incorporated into the educational materials.

Some recommendations were not implemented as they would have altered the meaning or the therapeutic components of Conexiones violating fidelity to the evidence-based EC program. For instance, participants reported not understanding the need for open-ended questions and recommended removing them from the script. Incorporating this recommendation would have violated the program’s use of a contextual model of parenting that emphasizes child-centered communication (Collins, Harris, and Susman, 1995; Lewis et al., 2015).

Participants recommended adjustments for interacting with cancer-diagnosed Latina mothers in a culturally sensitive way. Such recommendations aligned with the concepts of personalismo (a personal and empathetic way to relate to another person), respeto (a feeling of high esteem and respect for others), and confianza (the trust in the relationship) in Latinx cultural theory (Badger et al., 2013; Lopez-Class et al., 2011). To make the intervention more personable, participants recommended that the Patient Educators address the mothers using the informal tú that is used to address familiar and trustworthy people instead of the formal usted used to address strangers (Rivera, 2019). They suggested that using tú would help to establish a trusting and respectful relationship and help the diagnosed mothers feel like they were talking to a friend. Participants also noted that the script was too clinical and suggested making the text more empathetic, conversational, and engaging. They noted parts of the script had a negative connotation and recommended that warmer, less demanding words be used to respectfully engage the mothers in the activities. These recommendations will help engage diagnosed Latina mothers and maximize the benefits they obtain from the culturally-adapted Conexiones program (Chu and Leino, 2017; Lopez-Class et al., 2011).

Participants suggested that diagnosed mothers would dislike the constant reminder of their disease and recommended reducing the overused word ‘cancer’ in the educational materials. For the same reason, they also suggested that Latina mothers may experience difficulty disclosing their feelings related to their cancer in the program. This reasoning is in line with Gonzalez et al.’s (2016) suggestion that Latina cancer patients minimize their illness by denying that they have it. Similarly, the transactional model of stress and coping suggests that individuals will minimize the significance of disease (i.e., cancer) when the related outcomes are uncertain (e.g. survival) (Wethington, Glanz, and Schwartz, 2015). This tendency may also be rooted in Latina culture where mothers are expected to be stoic, hide their pain, and sacrifice themselves for their family (Im, Guevara, and Chee, 2007).

As suggested by Castro et al. (2004), engagement of the new consumer group in this step of the adaptation process helped to identify persistent mismatches and make adjustments needed to promote community ownership and buy-in for the culturally adapted Conexiones program. As recommended by Domenech Rodríguez et al. (2010), all strategies for further adapting the Conexiones program identified in this study were incorporated in consultation with the EC developers (Lewis et al., 2006, 2015) to ensure fidelity to the original program.

Lessons Learned

While community evaluation of the initial adaptation was a time-intensive process, it was essential in optimizing the cultural adaptation of the Conexiones program for diagnosed Latina mothers. Errors identified in the Spanish translation of Conexiones highlighted the importance of contracting translators who are familiar with regional language and who avoid literal translations, especially when no direct equivalent exists in the new consumer’s language. Corrections guiding cultural-specific ways of interacting with Latinas (e.g. empathy, respect, trust), especially avoiding an overly clinical approach, was also essential to designing an engaging program for the new consumer group.

Implications for Practice

While the present study evaluated the cognitive and cultural relevance of Conexiones for Latina mothers in the US-Mexico border region, similar evaluation would be required before applying Conexiones to Latina mothers of diverse national origins and regions to ensure the program captures their cultural and linguistic variations.

While frameworks for cultural adaptation of evidence-based programs are widely available in the literature (Castro et al., 2004, Domenech Rodriguez et al., 2010; Martinez and Eddy, 2005), studies describing community engagement in program adaptations are not. This may be attributed to researchers’ lack of time or experience in engaging the community in adaptation processes or failure to publish such efforts. Future research should involve community engagement to effectively address complex health disparities in underserved populations (Srinivasan and Williams, 2014).