Abstract
Background: Latino patients with advanced cancer need culturally responsive, effective psychotherapeutic interventions that can assist them in coping with their diagnosis and improve spiritual and existential well-being and psychological adjustment.
Objective: This study describes the cultural and linguistic adaptation of individual meaning-centered psychotherapy for Latinos with advanced cancer.
Design: A mixed-methods, concurrent integrative approach was used for this study, using the ecological validity and cultural adaptation process models as frameworks for cultural adaptation.
Setting/Subjects and Measurements: Quantitative and qualitative data were collected through (1) a survey of mental health professionals (n = 70) who offer services to Latino cancer patients; (2) a questionnaire for Latino patients with advanced cancer (n = 54), measuring relevant intervention concepts; and (3) in-depth interviews with 24 Latino patients.
Results: Quantitative findings showed that most of the goals and concepts were highly acceptable for patients and providers. The qualitative findings supported adaptations to include using more simple definitions; changing phrases that are challenging to translate and comprehend; using words that are common to all Latino cultures, providing more than one option if needed; simplifying the questions/reflections, as needed; changing the metaphors to be culturally congruent; and modifying content to make it responsive to Latino cultural values and norms.
Conclusions: Findings demonstrate the need for adaptation to achieve the aims of the intervention, accounting for both linguistic and cultural considerations, emphasizing issues related to literacy, cultural and linguistic diversity, cultural values, and culturally congruent content. The mixed-methods approach is described to provide recommendations for clinicians, researchers, and program developers.
Keywords: culturally competent care, Hispanic Americans, language, neoplasms, psychotherapy, translating
Introduction
Latinos are the largest, fastest growing minority group in the United States, and 18% of the U.S. population has a Latino background.1 Almost 150,000 new cancers were expected to be diagnosed among U.S. Latinos in 2018.2 The lifetime probability of dying from cancer among Latinos is about one in five for men and one in six for women. Patients with advanced cancer may suffer from psychological distress and have symptoms such as depression and anxiety, end-of-life despair, and hopelessness, which further complicate their illness management and potential recovery.3,4
For Latinos in the United States, the experience of adjusting to a diagnosis of advanced cancer is influenced by cultural values and expectations, language preferences, acculturation levels, and understanding and being able to navigate the complex U.S. health care system. Culture should be a core element in the care of patients with advanced cancer, as it has an impact on how patients make meaning of their illness, respond to symptoms, make decisions about health care choices, and express affect related to the cancer experience.5 Furthermore, the roles of cultural values, acculturation, language preferences, and understanding of the medical system are critical to the care of Latino patients with advanced diagnoses since they affect quality of care, decision making, the patient-provider relationship, access to services, and quality of life.6–8
The terms “Hispanic” and “Latino/a” are used to refer to persons of Hispanic origin. The federal Office of Management and Budget (OMB) defines Hispanic or Latino as, “a person of Cuban, Mexican, Puerto Rican, Cuban, South or Central American, or other Spanish culture or origin, regardless of race.”9 Latino/a is a self-designated term of ethnicity, and for this study, the term Latino is used for consistency and without racial connotation.
A meta-analysis comparing the psychological morbidity of ethnic minorities with cancer demonstrated that U.S. Latino cancer patients show significantly worse distress, depression, and overall health-related quality of life than other minority and non-Hispanic white patients.10 In a study with Hispanic and non-Hispanic white U.S. cancer survivors, the authors found that differences in anxiety or depression were explained by Hispanic patients having younger age of diagnosis, lower educational levels, less likelihood of being employed or U.S. born, lower insurance rates, and less social support.11 Although Latino cancer patients are at higher risk of poor mental health outcomes than other groups, they are less likely to receive psychological/psychiatric services and interventions.10,12
Meaning-centered psychotherapy (MCP) is an intervention, grounded in the work of Viktor Frankl,13 which aims to help patients with advanced cancer to sustain or enhance a sense of meaning, peace, and purpose in their lives as they face limitations due to progression of disease and treatment.14 Randomized controlled trials of the individual and group formats have been conducted with advanced cancer patients, showing strong efficacy for both formats.14–16 In both individual and group MCP, there was greater improvement in the intervention than control groups for the outcomes of quality of life and spiritual well-being, which consists of a sense of meaning and faith.14–16
Cultural adaptation is the systematic modification of an intervention protocol to consider language, culture, and context in such a way that it is compatible with the clients' cultural patterns, meanings, and values.17 For the purposes of this article, culture is defined as “the belief systems and value orientations that influence customs, norms, practices, and social institutions, including psychological processes (language and caretaking practices) and organizations (media and educational systems).”18 Transcreation is used to adapt source texts, which are rewritten in the target language, using cultural considerations to convey the concepts and achieve the aims of the source text.19 Transcreation not only renders the text of written materials into another language but also infuses culturally relevant context and themes.19
Our group is using the ecological validity model (EVM)20 and the cultural adaptation process model (CAPM)21 as frameworks for the cultural adaptation of MCP, including the transcreation of the original text, to respond to the needs of the growing Latino population with cancer.22 According to EVM, to adapt an intervention for a new cultural group, seven dimensions need to be addressed: language, context, persons, metaphors, concepts, goals, and methods.20 CAPM is a complementary process model to EVM and prescribes three phases for the adaptation process: formative, adaptation iterations, and intervention and measurement adaptation.21 This article describes the results of the formative phase of the cultural adaptation of individual MCP, which are presented in terms of EVM's seven dimensions.20
Methods
Individual MCP intervention
The methods or therapeutic strategies used in the seven-session manualized MCP are didactics, experiential exercises, and psychotherapeutic techniques (e.g., reflection, clarification, and exploration), which promote the learning and use of sources of meaning as resources to cope with advanced cancer. The MCP manual is divided into seven chapters—one chapter for each one-hour session (Table 1). The sessions are conducted by mental health clinicians or supervised clinicians-in-training,14,15 and are delivered over 7 to 14 weeks.
Table 1.
Meaning-Centered Psychotherapy Session Content for Cancer Patients
| Session | Session title | Content and concepts |
|---|---|---|
| 1 | Concepts and Sources of Meaning | Introductions |
| Meaningful moments experiential exercise | ||
| 2 | Identity and Meaning | Discussion of the sense of identity before and after becoming a cancer patient |
| Experiential exercise | ||
| 3 | Historical Sources of Meaning (Past Legacy, Present, and Future Legacy) | Discussion of life as a legacy that has been given (past), that one lives (present), and gives (future); |
| Experiential exercise | ||
| 4 | Attitudinal Sources of Meaning Encountering Life's Limitations | Discussion of encountering life's limitations |
| Experiential exercise | ||
| 5 | Creative Sources of Meaning: Engaging in Life Fully | Discussion of creative and responsibility; |
| Experiential exercise | ||
| 6 | Experiential Sources of Meaning: Connecting with Life | Discussion of experiential sources of meaning, such as love, nature, art, and humor |
| Experiential exercise | ||
| 7 | Transitions: Reflections and Hopes for the Future | Review of sources of meaning, reflections on lessons learned, and hopes for the future |
Study design and procedure
A mixed-methods, concurrent integrative approach employed the EVM and CAPM as frameworks for cultural adaptation in this study. These approaches were used concurrently, as the quantitative and qualitative data were collected simultaneously, and the two sources of data were combined to optimize understanding of participants' views. The data analyses integrated the combined results of the quantitative analyses and qualitative themes when possible.23 As mentioned, the EVM focuses on providing recommendations to adapt an intervention for a new cultural group, considering seven dimensions.20 CAPM is a complementary process model to EVM and focuses on the phases of a cultural adaptation program.21
Quantitative and qualitative data were collected from Latino patients with advanced cancer and mental health providers who treat Latino patients.
This cultural adaptation program had seven phases, as described in Table 2: (1) we assembled an expert panel of Spanish speakers, embodying a diversity of broad speech communities from the Spanish-speaking world, with representation from Puerto Rico, Mexico, Colombia, Argentina, Peru, Venezuela, Uruguay, the Dominican Republic, and Spain. The group was asked to review a list of MCP concepts and phrases and offer translations. (2) The MCP manual was translated by two translators, with input from the expert panel. The first translator conducted the translation and the second one conducted a quality control review. (3) Mental health providers were surveyed to assess the acceptability and feasibility of the goals, themes, concepts, and strategies of MCP for Latino patients. (4) Fifty-five patients completed a questionnaire battery that included standardized psychosocial scales and a survey to rate the acceptability of the goals and concepts of Individual Meaning Centered Psychotherapy (IMCP) and the feasibility of the goals and therapeutic methods of MCP. (5) A nested cohort of 24 patients was invited to participate in qualitative interviews to assess the comprehensibility and acceptability of the MCP manual content. (6) Findings from the quantitative and qualitative phases were analyzed and integrated into a cultural adaptation plan. (7) Finally, the MCP manual was transcreated, guided by EVM and the findings of our mixed-methods approach. To improve the validity and rigor of the methodological approach, the following strategies were implemented: (1) the approach was guided by two well-established research models, (2) multiple sources of data were used (i.e., from patients and providers), (3) qualitative and quantitative data were integrated, (4) multiple coders were used, (5) consensus meetings to compare and reach agreements were held, and (6) there was multinational representation on the research team (i.e., to decrease regional language, idioms, metaphors, and so on).
Table 2.
Phases of the Cultural Adaptation of Meaning-Centered Psychotherapy for Spanish-Speaking Patients
| Phases | Description |
|---|---|
| 1. Setting the stage, initial work between stakeholders and cultural adaptation team | A multinational group of experts was asked to review a list of MCP concepts and phrases and offer translations. |
| 2. Setting the stage, original translation | The MCP manual was translated by two translators, with input from the expert panel. |
| 3. Initial adaptations, cultural adaptation team evaluates possible adaptations to MCP by gathering information from providers | MHPs were surveyed to assess the acceptability and feasibility of the goals, themes, concepts, and strategies of MCP for Latino patients. |
| 4. Initial adaptations, cultural adaptation team examines fit of the concepts and strategies | Fifty-five patients completed a questionnaire battery that included standardized psychosocial scales and a survey to rate the acceptability and the feasibility of MCP. |
| 5. Initial adaptations, cultural adaptation team evaluates possible adaptations to intervention by gathering information from patients | A nested cohort of 24 patients was invited to participate in qualitative interviews to assess the comprehensibility and acceptability of the MCP manual content. |
| 6. Transcreation, cultural adaptation integrates information gathered | Findings from the quantitative and qualitative phases were analyzed and integrated into a cultural adaptation plan. |
| 7. Transcreation, cultural adaptation team tailors the intervention a priori | The MCP manual was transcreated, guided by EVM and the findings of our mixed-methods study approach. |
EVM, ecological validity model; MCP, meaning-centered psychotherapy.
Participants
Mental health professionals practicing in the United States and Latin America who treat Latino cancer patients were invited to complete an online survey; recruitment occurred from July 2015 to April 2017. Mental health providers were found through professional organizations' listservs and web searches. To be eligible, providers had to work in the mental health field and have a practice in which >10% of patients were diagnosed with cancer and >10% of patients were Latino. One-hundred and sixty-five providers were invited to participate, 91 accessed the survey, 8 did not complete the survey, 13 were not eligible, and 70 completed the survey and were included in the final analysis, yielding a 42% response rate. Participants provided implied consent by completing the survey. This research was reviewed by the Institutional Review Board (IRB)/Privacy Board and determined to be exempt research as per 45 CFR 46.101.b(2).
Spanish-speaking patients with advanced cancer, who were receiving care at two cancer clinics in NYC and one clinic in Ponce, Puerto Rico, were recruited. Eligible patients had been diagnosed with advanced cancer (stages III or IV) and were Latino and fluent in Spanish. One hundred and twenty-seven patients were approached by research staff between August 2015 and October 2018. Forty-nine percent refused to participate and 9% became ineligible after providing consent (i.e., became too ill to participate), yielding a sample of 54 patients. A nested sample of the first consecutive 24 patients was invited to complete in-depth, semistructured interviews. All patients provided their written consent. This research was reviewed and approved by the three institutions' Review Boards/Privacy Boards, Memorial Sloan Kettering Cancer Center's IRB #15-076 (July 20, 2015), Lincoln Medical Center IRB #16-011 (April 12, 2016), and Ponce Health Sciences University's IRB #161129 (August 23, 2017).
Assessments
The mental health providers assessment survey comprised questions on demographics, practice characteristics (such as years of experience), and training backgrounds (such as specialized training or courses), and questions assessing the acceptability and feasibility of MCP dimensions. Guided by the EVM,20 areas of inquiry around comprehension and acceptability were goals, themes, concepts, and strategies of MCP and barriers to patients accessing and using psychotherapy and/or counseling services. The patient survey was designed around the EVM dimensions of goals, concepts, and therapeutic methods and included a brief section with demographic and health-related questions, followed by questions assessing acceptability of the goals and concepts of IMCP and the feasibility of the therapeutic methods of IMCP (such as completing assignments and reflections).
The interview guide included exploratory questions about the acceptability and feasibility of the IMCP therapeutic model and the presentation of IMCP metaphors or stories, with exploratory questions about the relevance and comprehensibility of such metaphors or stories. All the interviews were conducted in Spanish. Semistructured questions commonly used in cognitive interviewing assessed the comprehensibility and acceptability of the manual's content.24
Analyses
Statistical analyses were performed using IBM SPSS software.25 Descriptive statistics were conducted to examine participants' responses to the survey. The endorsement of patients' and providers' use of and the acceptability of MCP goals and main concepts (such as meaning, purpose in life, and experiential sources of meaning), and the feasibility of IMCP strategies (such as reflections) were analyzed.
Qualitative deductive analyses were performed using Atlas Ti software.26 Patient comprehension and acceptability of the manual's content were evaluated using semistructured questions that are commonly used in cognitive interviewing (i.e., “What does the term X mean to you?”; “Does this definition make sense to you?”).24 Deductive categories were developed and defined a priori, following standard deductive analysis procedures,26,27 which included developing a structured coding matrix with categories, codes, and definitions.26,27 The qualitative codes used for the interviews included high, moderate, low, and unspecified comprehension and high, moderate, low, and unspecified acceptability. Comprehension was defined as high when a response demonstrated clear understanding of the definition/question/exercise, as moderate when the patient partially understood the content or when the patient was able to understand it with additional clarification, and as low when the patient reported not understanding the content. Acceptability was noted as high when the patient clearly stated that he or she liked the definition/question/exercise; as moderate when the patient reported that he or she moderately liked the content, or that the patient liked it, but felt that other patients might not; and low when the patient reported not liking the content. When the level of comprehension or acceptability could not be established, it was coded as unspecified.
To improve validity and rigor,28 three to five coders per interview, representing different cultural backgrounds, coded the interviews. Codes were discussed until all coders agreed and consensus was reached. After coding, the team would suggest action plans to increase the comprehensibility and acceptability of the session content, definitions, and/or questions/exercises. To illustrate and summarize the findings, data from the 24 interviews were quantified.26,27 Quantification was possible, given that the coders reached consensus about the code that was going to be used for each phrase/question, only one code was agreed upon for each segment; frequencies of the use of codes across the 24 interviews are presented in Table 6 in a dichotomous presentation (low-to-moderate comprehension or acceptability and high or unspecified comprehension or acceptability).
Table 6.
Quantification of the Patients' Qualitative Responses to Meaning-Centered Psychotherapy Content
| Session (part) | Content/concepts | Comprehension (n = 24) |
Acceptability (n = 24) |
||||||
|---|---|---|---|---|---|---|---|---|---|
| L/M |
H/NS |
L/M |
H/NS |
||||||
| n | % | n | % | n | % | n | % | ||
| 1 | “Concepts and Sources of Meaning”/: Exploration of meaning | 1 | 4.2 | 23 | 95.8 | 1 | 4.2 | 23 | 95.8 |
| 1 | In this session, patients share their cancer stories, then share what meaning means to them.… | 3 | 12.5 | 21 | 87.5 | 5 | 20.8 | 19 | 79.2 |
| 1 (I) | Having a sense that one's life has meaning involves the conviction that one is fulfilling a unique role and purpose in life that is a gift. | 0 | 0 | 24 | 100 | 2 | 8.3 | 22 | 91.7 |
| 1 (II) | Meaningfulness refers to moments that make life worth living, when you feel needed or alive… | 4 | 16.7 | 20 | 83.3 | 6 | 25.0 | 18 | 75.0 |
| 2 | “Cancer and Meaning”: Identity before and after diagnosis | 2 | 8.3 | 22 | 91.7 | 1 | 4.2 | 23 | 95.8 |
| 2 (I) | Who am I? These can be positive or negative, including personality characteristics.… | 12 | 50.0 | 12 | 50.0 | 8 | 33.3 | 16 | 66.7 |
| 2 (II) | How has cancer affected your answers? How has it affected the things that are most meaningful to you? | 9 | 37.5 | 15 | 62.5 | 3 | 12.5 | 21 | 87.5 |
| 3 | “Historical Sources of Meaning”: Life as a living legacy | 6 | 25.0 | 18 | 75.0 | 5 | 20.8 | 19 | 79.2 |
| 3 (I) | When you look back on your life and upbringing, what are the most significant memories, . … which have made the greatest impact on who you are today? | 9 | 37.5 | 15 | 62.5 | 11 | 45.8 | 13 | 54.2 |
| 3.1 (I) | As you reflect upon who you are today, what are the meaningful activities … that you are most proud of? | 6 | 25.0 | 18 | 75.0 | 5 | 20.8 | 19 | 79.2 |
| 3.1 (II) | As you look toward the future, what are some of the life lessons you have learned … What is the legacy you hope to live and give? | 8 | 33.3 | 16 | 66.7 | 4 | 16.7 | 20 | 83.3 |
| 4 | “Attitudinal Sources of Meaning”: Encountering life's limitations | 12 | 50.0 | 12 | 50.0 | 6 | 25.0 | 18 | 75.0 |
| 4 (I) | Since your diagnosis, are you still able to find meaning in your daily life despite your awareness of the finiteness of life? | 7 | 29.2 | 17 | 70.8 | 5 | 20.8 | 19 | 79.2 |
| 4 (II) | During this time, have you ever lost a sense of meaning in life—that life was not worth living? | 0 | 0 | 24 | 100 | 2 | 8.3 | 22 | 91.7 |
| 4 (III) | What would you consider a good or meaningful death? How can you imagine being remembered by your loved ones? | 5 | 20.8 | 19 | 79.2 | 11 | 45.8 | 13 | 54.2 |
| 5 | “Creative Sources of Meaning”: Active engagement in Life through creativity and responsibility | 1 | 4.2 | 23 | 95.8 | 2 | 8.3 | 22 | 91.7 |
| 5 (I) | Living life and being creative require courage and commitment… | 9 | 37.5 | 15 | 62.5 | 3 | 12.5 | 21 | 87.5 |
| 5 (II) | Do you feel you have expressed what is most meaningful to you through your work and creative activities? If so, how? | 4 | 16.7 | 20 | 83.3 | 2 | 8.3 | 22 | 91.7 |
| 5 (III) | What are your responsibilities? Who are you responsible to and for? | 8 | 33.3 | 16 | 66.7 | 5 | 20.8 | 19 | 79.2 |
| 5 (IV) | Do you have unfinished business? What tasks have you always wanted to do, but have yet to undertake? | 3 | 12.5 | 21 | 87.5 | 3 | 12.5 | 21 | 87.5 |
| 5 (V) | What is holding you back from responding to this creative call? | 4 | 16.7 | 20 | 83.3 | 3 | 12.5 | 21 | 87.5 |
| 6 | “Experiential Sources of Meaning”: Connecting w/life through beauty, love, and humor | 5 | 20.8 | 19 | 79.2 | 1 | 4.2 | 23 | 95.8 |
| 6 (I) | List 3 ways in which they connect with life and feel the most alive through the experiential sources of love, beauty, and humor. | 10 | 41.7 | 14 | 58.3 | 4 | 16.7 | 20 | 83.3 |
| 6 (II) | Has the way you find love, humor, and beauty in your life changed after your cancer diagnosis? | 6 | 25.0 | 18 | 75.0 | 1 | 4.2 | 23 | 95.8 |
| 7 | “Transitions”: Reflections and hopes for the future | 1 | 4.2 | 23 | 95.8 | 2 | 8.3 | 22 | 91.7 |
| 7 (I) | What has it been like for you to go through this learning experience over these last eight sessions?… | 3 | 12.5 | 21 | 87.5 | 2 | 8.3 | 22 | 91.7 |
| 7 (II) | Do you feel like you have a better understanding of the sources of meaning… | 2 | 8.3 | 22 | 91.7 | 1 | 4.2 | 23 | 95.8 |
| 7 (III) | What are your hopes for the future? | 1 | 4.2 | 23 | 95.8 | 0 | 0 | 24 | 100 |
The “unspecified” code was used when the patient ambiguously stated positive acceptability or comprehension, but there was not enough information to confirm high comprehension.
H/NS, high or unspecified comprehension or acceptability; L/M, low-to-moderate comprehension or acceptability.
Results
Participant characteristics
Seventy professionals who provide mental health services to Latino cancer patients and survivors participated in the survey (Table 3). Almost half (49%) practiced in the United States, and 51% practiced in Latin America, most frequently in Puerto Rico (13%).
Table 3.
Characteristics of Mental Health Providers
| Characteristic | Participants, n (%) (n = 70) |
|---|---|
| Sex | |
| Male | 12 (17.1) |
| Female | 58 (82.9) |
| Race | |
| White or Caucasian | 44 (62.9) |
| Mixed | 23 (32.9) |
| Ethnicity | |
| Hispanic | 62 (88.6) |
| Dominant language | |
| English | 28 (42.9) |
| Spanish | 39 (52.8) |
| Other: Italian | 3 (4.3) |
| Practice Location | |
| United States | 34 (48.6) |
| Puerto Rico | 9 (12.9) |
| Argentina | 6 (8.6) |
| Spain | 3 (4.3) |
| Other countries in Latin America | 18 (25.7) |
| Academic degree | |
| Masters | 34 (48.6) |
| PhD or PsyD | 24 (34.3) |
| MD | 10 (14.3) |
| Other | 1 (1.4) |
| Years in clinical practice, years | |
| 1–5 | 24 (34.3) |
| 6–10 | 17 (24.3) |
| 11 or more | 28 (40.0) |
| Weekly number of cancer patients seen | |
| 1–10 | 23 (32.9) |
| 11–30 | 24 (34.3) |
| 31 or more | 23 (32.9) |
| Weekly number of Latino cancer patients seen | |
| 1–5 | 25 (35.7) |
| 6–20 | 33 (47.1 |
| 21 or more | 12 (17.1) |
Percentages may not equal 100% due to rounding.
Frequencies might not be based on a total of 56 participants due to missing data.
Fifty-four Latino cancer patients with stages III (40%) and IV (60%) cancer participated. Eighty-four percent received care in New York and 16% in Puerto Rico. The predominant cancer diagnoses were gastrointestinal (20%), breast (18%), and prostate (13%). The sociodemographic and diagnostic characteristics are included in Table 4.
Table 4.
Characteristics of Latino Cancer Patients
| Characteristic | Participants, n (%)a |
|
|---|---|---|
| Total (N = 56)b | Qualitative cohort (n = 24) | |
| Age, years | ||
| Mean (SD) | 58.1 (12.2) | 54.17 (13.7) |
| Sex | ||
| Male | 31 (56.4) | 16 (66.7) |
| Female | 24 (43.6) | 8 (33.3) |
| Marital Status | ||
| Married or partnered | 34 (61.8) | 20 (83.3) |
| Single | 5 (9.1) | 3 (12.5) |
| Separated | 2 (3.6) | |
| Divorced | 8 (14.5) | 1 (4.2) |
| Widowed | 5 (9.1) | |
| Education level | ||
| Less than high school | 17 (30.9) | 6 (25.0) |
| 12th grade/high school graduate | 12 (21.8) | 6 (25.0) |
| Some college or associate's degree | 16 (29.1) | 8 (33.3) |
| College Graduate | 4 (7.3) | 2 (8.3) |
| Post-college/Graduate school | 4 (7.3) | 2 (8.3) |
| Employment status | ||
| Employed | 11 (20.4) | 12 (50.0) |
| Retired | 19 (34.5) | 6 (25.0) |
| Unemployed or disabled | 24 (43.6) | 6 (25.0) |
| Race | ||
| White or Caucasian | 18 (32.7) | 11 (45.8) |
| Black | 4 (7.3) | 1 (4.2) |
| Other | 30 (54.5) | 12 (50.0) |
| Dominant language | ||
| English | 9 (16.4) | |
| Spanish | 44 (80.0) | 21 (87.5) |
| Both | 2 (3.6) | 3 (12.5) |
| Birthplace | ||
| United States | 9 (16.4) | 2 (8.3) |
| Puerto Rico | 16 (29.1) | 10 (41.7) |
| Dominican Republic | 9 (16.4) | 3 (12.5) |
| Mexico | 4 (7.3) | 2 (8.3) |
| Other countries in Latin America | 17 (30.9) | 7 (29.2) |
| Diagnosis | ||
| Breast | 10 (18.2) | 6 (25.0) |
| Prostate | 7 (12.7) | 5 (20.8) |
| Gastrointestinal | 11 (20.0) | 3 (12.5) |
| Other | 27 (49.1) | 10 (41.7) |
| Cancer stage | ||
| III | 22 (40.0) | 11 (45.8) |
| IV | 33 (60.0) | 13 (54.2) |
Values are n (%), unless otherwise noted.
Frequencies may not be based on a total of 56 participants, due to missing data, and percentages may not equal 100%, due to rounding.
MCP methods
MCP methods are the procedures for achieving the goals of the treatment. We asked patients and providers questions about the acceptability and feasibility of the therapeutic methods (session exercises, homework, and open-ended discussion). Most patients reported being interested in participating in individual psychotherapy with or without family members present in some sessions, that is, delivered every other week and last less than an hour. Description of the acceptability and feasibility of the MCP methods and goals is included in Table 5.
Table 5.
Acceptability and Feasibility of the Meaning-Centered Psychotherapy Methods, Goals, and Concepts
| Acceptability and feasibility of | Patients, n (%) | Providers, n (%) |
|---|---|---|
| Methods | ||
| Interest in psychotherapy | ||
| Would participate in psychotherapy | 38 (71.7) | |
| Unsure whether they would | 8 (15.1) | |
| No interest | 7 (13.2) | |
| Psychotherapy sessions preferences | ||
| One hour | 17 (32.1) | 40 (60.6) |
| More than an hour | 1 (1.9) | 10 (15.2) |
| Less than an hour | 19 (35.8) | 16 (24.2) |
| Meet every week | 16 (30.2) | 23 (34.8) |
| Meet every other week | 21 (39.6) | 33 (50) |
| Meet twice a week | 6 (11.3) | 9 (13.6) |
| Therapy type preference | ||
| Individual therapy | 16 (30.2) | 21 (31.8) |
| Individual therapy with family sessions | 16 (30.2) | |
| Family therapy | 3 (5.7) | 35 (53.0) |
| Group therapy | 10 (18.9) | 10 (15.2) |
| Therapeutic strategies rated acceptable | ||
| Doing a project (such as a photo album or crafts) for their family | 29 (52.7) | 29 (43.4) |
| Video-recording thoughts to share | 16 (29.1) | 19 (28.8) |
| Writing reflections | 17 (30.9) | 36 (54.5) |
| Goals | ||
| Ranked as quite a bit to extremely important goals | ||
| Maintaining hope | 47 (88.7) | 65 (92.3) |
| Making sense of the cancer experience | 42 (79.2) | 60 (85.7) |
| Finding meaning in life or thinking about the purpose in life | 39 (73.6) | 63 (90.0) |
| Understanding the purpose in life after a cancer diagnosis | 41 (77.4) | 55 (78.6) |
| Reflecting on the heritage or thinking about life contributions | 35 (66) | 47 (67.1) |
Counts for patients might not add up to 54 and for providers to 70, due to missing data.
MCP goals
The acceptability of the MCP goals (enhance hope, make sense of the cancer experience, and develop a sense of legacy) was explored with mental health providers and Latino patients with advanced cancer, whose responses were fairly well aligned. Between 66–89% of the patients and 67–92% of the providers ranked the goals as quite a bit to extremely important goals (Table 5).
MCP treatment concepts
Key MCP treatment concepts include meaning, search for meaning, hope, purpose in life, connecting with life, courage, death and dying, identity, life's limitations, sources of meaning, legacy, and meaningful death, among others. More than 50% of the providers reported that hope (80%), meaning (64%), purpose in life (61%), courage (61%), and connecting with life (58%) were important themes that they explored in psychotherapy with their cancer patients. Themes that were addressed less in psychotherapy by these providers were identity (49%), death and dying (46%), transcendence (33%), legacy (30%), sources of meaning (27%), and meaningful death (17%).
The qualitative analyses revealed that the concepts that had lower or moderate comprehension by patients were sense of meaning, sources of meaning, identity, historical sources of meaning, legacy, attitudinal sources of meaning, finiteness of life, unfinished business, meaningful death, creative sources of meaning, creativity, creative call, courage, experiential sources of meaning, connecting with life, and transcendence. Moreover, the concepts that showed low-to-moderate acceptability were legacy, finiteness of life, meaningful death, unfinished business, humor (in the context of death and dying), and transcendence.
MCP content
The content of the intervention was assessed to explore acceptability and comprehension for low-literacy patients. Cognitive interviewing was conducted to gather the necessary information to modify the content for a low-literacy audience. A summary of the patients' qualitative responses is presented quantitatively in Table 6. Half of the participants showed poor or moderate comprehension of the topics in session 4, which is introduced as “Attitudinal Sources of Meaning—Encountering Life's Limitations. Attitudinal sources of meaning are based on the theme that our last vestige of human freedom is to choose our attitude toward suffering and life's limitations.” Some patients demonstrated poor or moderate comprehension by responding as follows: “this is a little difficult”; “the last part got me lost … vestige?”; and “attitude, bad attitude … vestige, what is it?” More than a third of the patients found it difficult to comprehend questions/reflections in sessions 3, 5, and 6. Also, the acceptability of specific questions and reflections from sessions 2, 3, and 4 were evaluated by participants (33–46%) as poor to moderate. For example, a question from session 3 asks, “When you look back on your life and upbringing, what are the most significant memories … that have made the greatest impact on who you are today?” Responses included “is it worth it … looking at the past, it can depressed you”; “(the question) it's not important…we were dominated by our father … our upbringing was harsh”; and “remember them (family)…it is difficult, it makes me sad … I cannot see them, I can't travel … they live far away.” This last patient was undocumented and unable to travel or have his family visit him.
Metaphors
To illustrate important therapeutic concepts, the MCP manual uses metaphors taken from the work of Viktor Frankl. These metaphors were presented to patients who were asked to react and express their understanding and opinion of them. Patients were presented three metaphors/stories, and 71% showed low-to-moderate comprehension of the first metaphor, 67% showed moderate-to-low comprehension of the second, and 46% showed low-to-moderate comprehension of the third. During the interviews, patients were asked to offer their own metaphors or stories with the same underlying message as the original metaphor. All the MCP manual metaphors were changed for more recognizable or common examples that resonate in Latino cultures, using examples provided by patients and the expert panel. For example, the metaphor about the sculptor illustrates the message that “the stone at which we hammer is our lives and what we hammer out is our values–creative, experiential, and attitudinal.” A more common experience for Latino immigrants is the life goal of building a house in their home countries. This wish is shared by many immigrants and can easily be converted into a metaphor that illustrates the ideas behind the sculptor metaphor in a more familiar way.
Language
Language-appropriate interventions need more than literal translation. In the consensus meetings, Spanish-speaking clinicians and researchers provided recommendations to increase the linguistic and cultural fit of the manual's content, including the need to adapt the intervention to include more simple definitions (i.e., legacy); change phrases that are challenging to translate and comprehend (i.e., sources of meaning); use terms with equivalent semantic meaning (i.e., attitude); use words that are common to all cultures, giving multiple options if needed (i.e., meaning as significado/sentido); simplify the questions/reflections (i.e., avoid double-barreled questions); change the metaphors to be culturally congruent; and modify content to make it responsive to Latino cultural values and norms.
Persons
The persons concept refers to the similarities and differences between the client and therapist and the relationship between these individuals.20 To ensure attention to these factors, our cultural adaptation team and expert panel comprised experienced bilingual and bicultural investigators and interviewers from Puerto Rico, Mexico, Cuba, Nicaragua, Colombia, Argentina, Peru, and Spain.
Context
Context considers aspects and processes such as acculturation, educational attainment, literacy, and migration patterns and history. For immigrants, the cancer experience can be embedded in their migration history. Many immigrants face the triple burden of adjusting to the disease and treatment, adjusting to a foreign culture, and adjusting to a new and unknown health care system. Others face challenges in terms of being separated from family and not being able to travel abroad to see them. This was especially true for undocumented patients and those living in poverty. Some modifications were made to the intervention that took context, migration, acculturation, and literacy into consideration.
Discussion
Our research supports the transcreation and cultural adaptation of MCP for Latinos with advanced cancer. To modify for low literacy, all the key areas of the manual were examined using cognitive interviewing strategies.24 This approach allowed the team to identify areas of confusion and low understanding and to develop a comprehensive adaptation plan to contextualize, simplify, and increase the cultural responsiveness and ease of understanding the content of the intervention.
The adaptation team assembled a diverse panel of Spanish speakers who represented more than 12 different countries of origin. Experts participated in consensus meetings in which the findings from the qualitative interviews with patients were analyzed and discussed. The recommendations that emerged during the qualitative coding process included (1) adding and clarifying the definitions of all the MCP concepts; (2) using more simple and direct language; (3) rephrasing questions and phrases that showed low or moderate comprehension; (4) using words that are common to most Latino cultures, offering more than one option, if needed for broad comprehensibility; (5) simplifying the questions/reflections and avoiding double-barreled questions; (6) splitting complex questions into multiple questions or dividing them into lists; (7) providing visual aids to illustrate ideas; (8) modifying content to make it responsive to Latino cultural values and norms; (9) including popular Spanish phrases and sayings to illustrate concepts and ideas; (10) including family-focused content; (11) inviting family members to specific sessions; (12) changing all the metaphors to be culturally congruent; and (13) including notes for the therapist in the manual, with information and recommendations drawn from the study findings. These recommendations were implemented during the manual's transcreation process.
For the implementation and delivery of MCP to Latinos, it is critically important that the facilitators are not only skillful and trained in MCP but also culturally competent to treat Latino patients. For this adaptation program, the goal was not only to include culturally competent therapists but also to include a team of experts (clinicians and researchers) who are knowledgeable about Latino patients' needs and culture. This was achieved by assembling an expert panel of Spanish speakers who represented a diversity of broad speech communities from the Spanish-speaking world. The collaboration of this network has motivated some of our international partners to take part in the adaptation study. The next steps for this international research program are to (1) validate instruments to their contexts, (2) conduct interviews with key informants to modify the intervention manual and make it responsive to the cultural context, and (3) conduct pilot feasibility studies of the intervention. Given the heterogeneity of Latino culture, it is unlikely that a “one-size-fits-all” manual can be created; therefore, the transcreated manual will ultimately include notes and appendices with recommendations for treating patients from multiple cultural backgrounds and delivery in other countries.
Strengths and weaknesses/limitations of the study
Although this study has many strengths, there are some limitations. The first limitation is the small patient and provider sample sizes. Second, the patient sample was recruited primarily from New York City and Puerto Rico, and the patients were predominantly born in the Caribbean. Thus, the results may not generalize to Latinos in different geographical locations in the United States and Latin America. Future studies will include samples recruited from different geographical locations to enhance cultural fit. Third, the sample of patients was not homogeneous in terms of diagnosis and/or stages, and patients with stages III and IV cancer were invited to participate. The cancer experience of patients at different disease stages with different prognoses could vary significantly. In future studies, analyses stratified by stage and prognosis are warranted. Fourth, when asking about feasibility of the strategies (i.e., participating in therapy), contextual considerations were not considered or noted. Patients may have been willing to participate in psychotherapy of different modalities (i.e., individual, group, and family), depending on the circumstances. Future studies should consider contextual consideration of intervention implementation and access. Our study's strengths are the use of a rigorous approach that is theoretically driven, use of a mixed-methods approach, information gathered from different and diverse stakeholders, and team members and consultants representing many Latino backgrounds.
Conclusions
The lack of effective psychotherapeutic interventions to help Latino patients to cope with a diagnosis of advanced cancer is alarming and represents a cancer health disparity in need of redress. The goal of this research was to adapt and transcreate MCP for LACPs, guided by CAMP and EVM.20,21 This article describes a rigorous approach to linguistic and cultural adaptation. It highlights the critical need, when culturally adapting an intervention for a new cultural and linguistic group, to (1) use cultural adaptation frameworks to guide the research and adaptation activities, (2) conduct mixed-methods research to integrate information from multiple sources for the transcreation process, (3) include an expert panel with linguistic and cultural diversity, and (4) consult stakeholders, patients, and providers, to obtain the necessary information to modify the intervention to respond to their needs.
Acknowledgments
The authors would like to thank Sonya J. Smyk, Memorial Sloan Kettering Cancer Center, for editorial support. She received no compensation beyond her regular salary.
Funding Information
This research was supported by the National Cancer Institute: training grant T32CA009461, R21 CA180831-02 (Cultural Adaptation of Meaning-Centered Psychotherapy for Latinos), K08CA234397 (Adaptation and Pilot Feasibility of a Psychotherapy Intervention for Latinos with Advanced Cancer), and the Memorial Sloan Kettering Cancer Center grant (P30 CA008748). E.C.-F. received support from the National Cancer Institute (2U54CA163071 and 2U54CA163068) and the National Institute of Minority Health and Health Disparities (5G12MD007579-33, 5R25MD007607, and R21MD013674). Dr. W.B. received support from the National Cancer Institute (R01 CA128134, R25 CA190169), and the National Institutes of Health-Center for Complementary and Alternative Medicine (R21AT/CA0103). The funding sources have not been involved in the development of this article or its study design, data collection, analysis and interpretation of data, writing of the report, and/or the decision to submit the article for publication.
Author Disclosure Statement
All the authors declare that they have no competing financial interests.
The contents of this article are solely the responsibility of the authors and do not necessarily represent the views of the awarding agencies.
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