Impact of CKD on Life Participation in Latin America

Abstract

Introduction

Patients with chronic kidney disease (CKD) carry symptom and treatment burden, which together with comorbidities, can impair their ability to engage in life activities. Different values and priorities regarding life participation may vary depending on the population and setting. We aimed to describe the perspectives of life participation in patients with CKD not requiring kidney replacement therapy (KRT) in Latin America.

Methods

In April 2024, we conducted a workshop with facilitated breakout groups (small group discussions) involving patients, caregivers, and health care professionals in Spanish language to discuss the impact of CKD on life participation in patients with CKD. Transcripts were analyzed thematically.

Results

Sixty-six participants, including 51 patients and caregivers, and 15 health care professionals from 5 countries (Argentina, Chile, Uruguay, Bolivia, and Peru) attended. Five themes were identified as follows: despair and sense of doom (coming to a sudden halt, diminished involvement in social activities with family and friends, paralyzing fear, fragility and vulnerability, and losing mental fortitude); stigmatized and judged (alone in the diagnosis, reprimanded for dietary choices, and discriminated by employers and colleagues); debilitating symptoms (incapacitated by pain and fatigue impairing functioning); threatening life goals (obscuring decision-making around family planning and relinquishing career aspirations); and garnering hope and strengthening resilience (overcoming challenges with family support, finding strength in spirituality, encouraged by clinicians, and physical activity to promote well-being).

Conclusion

Patients with CKD experienced despair, hopelessness, loneliness and isolation, debilitating symptoms, and uncertainty about their family and vocational goals, which contributed to impaired life participation. Strategies are needed to address these challenges to enhance the capacity of patients to live well with CKD.

Graphical abstract

Patients with CKD have an increased risk of mortality, life-threatening comorbidities, including cardiovascular disease, and experience treatment complications and side-effects.¹ Patients with CKD may experience increasing symptom burden as the disease progresses, which can be debilitating and impair their overall quality of life.² They may feel uncertain and anxious about the potential need to make a decision on supportive care or KRT, including kidney transplant or dialysis.³

Life participation, defined as the “ability to participate in activities (e.g., leisure, family, work/study) that are meaningful and important to patients” has been identified as a critically important outcome based on consensus which involved 1399 participants from 73 countries patients with CKD, their caregivers, and clinicians through the Standardized Outcomes in Nephrology (SONG) initiative.⁴ Although the domains of life participation are broad and applicable to all settings, in certain settings such as Latin America, there may be different values and priorities placed on these domains. For example, there may be specific sociocultural norms relating to for example, spirituality, larger family structures, social hierarchy, and an importance placed on self-respective and dignity,⁵ so that the value placed by patients on different aspects of life participation may have more specific meaning in this population.

Little is known about the perspectives of patients and caregivers on life participation in CKD in Latin America. The aim of this study was to describe the perspectives of patients with CKD, their caregivers, and clinicians on life participation in CKD before the need for supportive care or KRT. This may inform strategies and interventions to improve life participation in CKD.

Methods

Context and Scope

As part of the SONG-CKD Life Participation initiative, a workshop, conducted in Spanish language, was held in person on the April 13, 2024 in Buenos Aires, Argentina during the World Congress of Nephrology. This workshop report focusses on the perspectives of patients, caregivers, and health care professionals on the meaning of life participation, and the challenges and enablers of life participation in patients with CKD (stages 1–5, before the need for KRT).

Attendees and Contributors

We invited patients with any stage of CKD, including patients receiving KRT, because they could reflect on their experience prior to receiving KRT. Patients aged ≥ 18 years were eligible and their caregivers. Health care professionals with expertise or interest in CKD, (nephrologists, researchers, allied health professionals, regulators, and funders) attended the workshop. Patients, caregivers, and health care professionals were invited from CKD patients’ networks and societies (e.g. Fundación the Pro Renal Health Foundation of the Chilean Society of Nephrology, ISN, and Sociedad Latino Americana de Nefrología e Hipertensión).

A total of 66 participants from 5 countries participated. The 51 patients and caregivers (CKD prior to KRT: n = 33, dialysis: n = 1, transplant: n = 1) were from Argentina (n = 41), Chile (n = 9) and Uruguay (n = 1). The 15 health care professionals (nephrologists, researchers, and allied health professionals) were from 5 countries, including Argentina (n = 6), Chile (n = 5), Uruguay (n = 1), Bolivia (n = 1) and Peru (n = 1). The full list of attendees of the life participation workshop is provided in the Appendix and Supplementary File S1 (includes their institutions).

Countries were selected based on geographic proximity to Buenos Aires (feasibility and resources to fund travel); existing partnerships with regional societies and patient networks; and differences in the provision of care for patients with CKD. For example, Bolivia has a comparatively low density of nephrologists (∼10.6 per million population), whereas Chile has a higher density (∼17.4 per million).^6,7 In Uruguay, there is a national Renal Health Program for patients with CKD not requiring KRT, which facilitate access to outpatient nephrology clinics⁸; Argentina has a larger nephrology specialist network in the Latin America.⁹

Data Collection

Before the workshop, the workshop program and background materials were shared with all attendees. The workshop question guide was developed based on the literature and input from patients, caregivers, and health care professionals, and focused on the impact of CKD on life participation (Supplementary File S2).

Breakout discussions (7–10 participants) were moderated in Spanish language with a semistructured guide (Supplementary File S2) and audio-recorded for thematic analysis. Facilitators requested that all participants discuss their perspectives and suggestions based on their experiences prior to KRT. We have added in the workshop question guide: “For those of you who are receiving dialysis or kidney transplant thinking back to before you started dialysis or received a transplant.” Participants were allocated to breakout groups comprised of 7 to 10 participants, including patients, caregivers, and health care professionals to discuss the topics of the meaning of life participation as well as the challenges and enablers of life participation in people with CKD. We sought to ensure that each breakout group included ≥ 2 patients or caregivers, and that clinicians were not in the same group as patients under their care. The groups were moderated by a trained facilitator and cofacilitator(s).

After the breakout discussion, all attendees reconvened in a plenary session and each group provided

a brief summary of their breakout group discussion, providing a final summary and closing remarks. All discussions were audio-recorded and transcribed verbatim in Spanish language.

Data Analysis

The transcripts were entered into HyperRESEARCH software for coding and analysis. Author, AMG read the transcripts line-by-line to inductively identify concepts and develop themes and subthemes. The analysis was reviewed by the facilitators to ensure that it captured the full breadth and depth of data. We used investigator triangulation in which AH and AJ reviewed the themes and member checking to ensure that the themes reflected the breadth and depth of the data. The preliminary findings were circulated to all attendees who were invited to provide feedback and additional comments, which were integrated into the final report.

Results

We identified the following 5 themes on the impact of CKD on life participation in patients: (i) despair and sense of doom, (ii) stigmatized and judged, (iii) debilitating symptoms, (iv) threatening life goals, and (v) garnering hope and strengthening resilience. The themes and subthemes are described below and illustrative quotes supporting each subtheme are provided in Table 1. A thematic schema depicting the themes is provided in Figure 1.

Table 1.

Illustrative quotes

Despair and sense of doom
Coming to a sudden halt	“Accepting the disease is challenging—you want to live as before” (patient) “Many wake up unable to do anything and suddenly are ‘kidney patients’ without knowing why” (patient)
Diminished involvement in social activities with family and friends	“CKD limits your ability to participate with others” (patient)
paralyzing fear, fragility and vulnerability	“Fear of getting sick is paralyzing and impedes daily life” (patient) “It’s part of my life now to carry this disease” (patient) “You feel incapable” (patient)
Losing mental fortitude	“Mood is shaped by how we cope with illness” (patient)
Stigmatized and judged
Alone in the diagnosis	“I faced a social crisis with the rest of the world” (patient) “I became socially isolated because of CKD” (patient) “At diagnosis you feel alone—that happened to me” (patient) “You stop leisure and family gatherings because you worry” (patient)
Reprimanded for dietary choices	“I have to inform everyone that I have CKD and cannot consume alcohol or meat, so please do not pressure me to do so” (patient) “You can’t eat that; you can’t drink that’—it wears me down“ (patient) “I visit my parents’ house, where they prepare a lovely meal. I say, “Mom, this has too much salt! Why didn’t you set aside a pot for me?” (patient)
Discriminated by employers and colleagues	“I meet work goals, yet I’m discriminated against due to ignorance about CKD” (patient)
Debilitating symptoms
Incapacitated by pain	“I felt physically knocked out by pain” (patient)
Fatigue impairing functioning	“He’s frustrated that he can’t do household tasks he used to” (caregiver) “Today I can do things; two years ago, when sick, I couldn’t” (patient) “In a tennis match I passed out and couldn’t continue” (patient)
Threatening life goals
Complicating decisions regarding family planning	”My doctor said pregnancy or kidneys—I chose my health” (patient) “I couldn’t imagine dialysis while caring for a baby” (patient)
Relinquishing career aspirations	“How do we show clinicians that patients struggle to study or work?“(HP)
Garnering hope and strengthening resilience
Overcoming challenges with family support	“We travelled and I worried constantly about my daughter'” (caregiver) “Knowing this [Life Participation] helps me support my daughter through ups and downs” (caregiver)
Finding strength in spirituality	“Being closer to the Church strengthened me” (patient)
Encouraged by clinicians	“My doctor is wonderful—I feel genuinely cared for” (patient) “Finding treatment while enabling the best possible life is crucial” (patient)
Physical activity to promote well-being	“Practice sport regularly as part of managing kidney disease” (patient) “Doctors should prescribe activity to keep us physically active” (patient) “Physical activity is essential for me” (patient)

CKD, chronic kidney disease; HP, health care professional.

Figure 1.

Thematic schema of the impact of CKD on Life Participation. The following 5 themes summarize workshop discussions: (i) despair and sense of doom (sudden halt; reduced social involvement; fear, fragility; loss of mental fortitude); (ii) stigmatized and judged (feeling alone; reprimanded for dietary choices; workplace discrimination); (iii) debilitating symptoms (pain; fatigue limiting functioning); (iv) threatening life goals (family planning challenges; relinquished career aspirations); and (v) garnering hope and strengthening resilience (family support; spirituality; clinician encouragement; physical activity). Boxes indicate themes; subbullets denote subthemes; arrows illustrate interrelations (e.g., symptoms → reduced participation; support/encouragement → resilience). CKD, chronic kidney disease.

Despair and Sense of Doom

Coming to a Sudden Halt

Patients and their families described the diagnosis of CKD as being "It was a big shock (caregiver)" which impeded them from carrying out activities they valued such as going out to birthday celebrations and family gatherings. They felt that everything in life was put on hold —"I wasn’t living—I was on pause” (patient). Accepting CKD was psychologically difficult because of the potential of the diagnosis to undermine their ability to live well—"want to keep living, but I can’t because of this illness (CKD and I refuse to accept that” (patient).

Diminished Involvement in Social Activities With Family and Friends

Patients felt that CKD prevented them from being able to lead a fulfilling life—"The first thing I told the doctor was—This isn’t life” (patient). Patients felt their identity and existence were somehow diminished because CKD interfered with their ability to participate in family and social activities—“I felt forced to choose between treatment [CKD medication and diet] and time with my grandchildren” (patient).

Paralyzing Fear, Fragility, and Vulnerability

Patients reported having a heightened sense of vulnerability and were concerned about the seriousness of CKD, which limited their capacity to do activities—"Fear of getting sick is paralyzing and limits my daily activities” (patient). Some patients became more cautious and refrained from performing daily activities because of weakness; this was also observed by health care professionals—"After progressing to stages 4–5, the patient lost mobility and muscle strength [of CKD]” (health care professional). In addition, clinicians commented,—"there is an experiencing of mental fragility that can hinder the patient's motivation to participate in life, as well as a physical fragility imposed by CKD that prevents the patient from participating, even if he or she desires to do so” (health care professional).

Losing Mental Fortitude

For patients, it was difficult to remain positive. Some felt “angry with everything,” experienced low mood and lost motivation to engage in life participation—"My mood suddenly did not let me do some activities” (patient). The diagnosis of CKD was distressing for patients, which they felt could lead to depression and further incapacitated them to be able to live life as they wanted—"When I’m depressed, even daily tasks are hard” (patient).

Stigmatized and Judged

Alone in the Diagnosis

Some patients felt lonely, socially isolated, and lacking in support—"The diagnosis led me to withdraw and speak only with a small circle” (patient). They were upset about comments received from others that made them feel even more alone in their experience of CKD—“People said, ‘It’s your illness, not mine” (patient). Patients perceived themselves as being “marginalized and different from others” and felt no sense of belonging in social groups and unable to relate to others in the community.

Reprimanded for Dietary Choices

Patients at times felt judged and criticized by others for their dietary choices and were exasperated when "people tell me I can't eat certain foods … No, you can’t eat or drink that’—it bothers me” (patient). Some avoided social situations because they did not want to be reprimanded about their diet—“I sometimes skip gatherings to avoid being policed about food” (patient). Caregivers noted that patients were frustrated about having to manage dietary restrictions in social settings—“At social events [with friends] my son must eat differently—it frustrates him.”

Discriminated by Employers and Colleagues

Some patients felt that employers and colleagues did not have knowledge or understanding about CKD—“at work, people didn't understand my condition” (patient). They believed they were prevented from working because of discrimination by their employer, supervisors, and colleagues who assumed they would not be able to work because of CKD—"I was performing well in a job with sales goals when my boss, despite my performance, told me to go home due to my disease” (patient).

Debilitating Symptoms

Incapacitated by Pain

Patients experienced debilitating pain that undermined their ability to participate in activities—“I couldn't do gymnastics because I lived with cramps, and I couldn't do a lot of activities of daily living.” Caregivers remarked on—“the debilitating symptoms of the disease” and felt they needed to support patients so they would not succumb to symptoms such as pain. Some patients explained that they had to accept and adapt to pain as part of daily life—"you learn to live with pain; you carry it, and you have no choice” (patient).

Fatigue Impairing Functioning

Some patients described the fatigue they experienced as an “unrelenting feeling of exhaustion” that made tasks such as household chores (e.g. cleaning), playing sports, and going for a walk impossible—"I wanted to walk but couldn’t even get up.” Some stated that the fatigue impaired their ability to function on certain days, particularly if they had already “spent a lot of energy” during the day before—“Some days I can’t do anything” (patient).

Threatening Life Goals

Obscuring Decision-Making Around Family Planning

For patients, CKD threatened and complicated their decisions regarding family planning—”I decided not to have children because I had to choose between them and my kidney.” Having to trade off the risks of adverse pregnancy outcomes due to CKD with wanting to pursue pregnancy was challenging for patients; some reported that clinicians advised them against having children—”When we were prohibited from having children, it was devastating. It led to a year of therapy for my husband and me. Accepting this took years, and it still hurts.” Similarly, health care professionals were aware of the profound grief patients experienced because of this—“Asking patients to choose between illness and pregnancy has major repercussions” (health care professional).

Relinquishing Career Aspirations

Some patients felt that CKD undermined their ability to achieve their career-related goals, and prevented them from advancing in their careers, to get a promotion, and to earn more money. Some patients had to leave their jobs, and it was particularly distressing for those who enjoyed their work—"I am a special education teacher, working from 8 to 5 in the afternoon. I couldn't do my job well because everything affected me. I had to give up my regular job. It was a difficult decision because it was the career I loved” (patient).

Garnering Hope and Strengthening Resilience

Overcoming Challenges With Social Support

Patients emphasized that support from family and friends helped them to be able to participate in activities of daily life—“Family and friends help me get through daily tasks” (patient). Encouragement and assistance from family provided patients with the strength to navigate challenges and pursue their interest—"our support enables our daughter to manage her responsibilities and assist others facing similar challenges” (caregiver).

Finding Strength in Spirituality

Some patients turned to faith and religion, and this helped them maintain hope and continue with their daily activities—”I was never depressed; I never lost the faith that lifted my spirits allowing me to function every day… getting closer to God strengthened me to do my mindful activities every day. (patient).

Encouraged by Clinicians

Some patients felt encouraged by their nephrologist to manage their condition with optimism so they could continue to participate in life activities—"The support from my doctor was essential; it energized me to approach the treatment differently to be able to do my activities of daily living.” Health care professionals recognized that providing care should extend beyond the medical focus, and to— “Understanding how our patients feel and how they can participate in meaningful activities is just as important as monitoring their creatinine and ferritin levels.” However, some health care professionals acknowledged that they may not have adequate time in clinical consultations to assess and address life participation—"Unfortunately, we are limited to 15 minutes for consultations. We must evaluate our patients' life participation shortly and easily if we are going to do that.”

Physical Activity to Promote Well-Being

Patients emphasized that engaging in regular physical activity helped to improve life participation—"Doctors, in addition to giving patients prescriptions for medications, they should suggest playing sports to stay physically active” (patient). Physical activity improves their energy and well-being, enabling them to engage in daily life activities “exercise develops a lot of hormones that ultimately encourage you and provide you with energy to do things” (patient).

Discussion

Patients with CKD felt hopeless, which hindered their motivation to engage in activities they enjoyed and found fulfilling, including socializing with family and friends. Some patients felt that their life was on hold and were anxious because of the uncertainty of CKD progression and potential need for KRT. Judgement and misunderstanding from others, including about their dietary restrictions, exacerbated their sense of loneliness, and made them reluctant to participate in social activities. Symptoms, including pain and fatigue were described as debilitating and undermined their daily functioning. Pursuing life goals, particularly regarding starting a family and work or career aspirations were jeopardized because of CKD, which was profoundly distressing and disappointing for patients. Some depended on family and spiritual support to continue in their daily activities and appreciated encouragement and help from clinicians to manage their treatment to minimize the disruption and limitation it had on their daily living.

The findings of the workshop reflect the challenges identified by other patients with CKD, including the inability to maintain work and study, feeling depleted and being unable to socialize, and having to reorient goals and plans in terms of their career and family planning because of the uncertainties related to their health.^10,11 Of note, the workshop participants appeared to emphasize the centrality of being able to participate in family activities because this was inextricably linked to their identity and quality of their existence, and the consequences of dietary restrictions on hindering their mood and motivation to engage in social activities. This reflects the Latino culture, whereby a high value is placed on family and food.¹² For Latinos, loyalty to the extended family precedes individual needs, and that may intensify the impact of CKD on patients’ social roles and well-being, this concept is known as “familismo.^13,14” Latino patients with diabetes have reported feeling social pressures within their family and community to consume traditional foods which are high in fat and calories.^15,16 This reflects the Latino cultural value of "simpatía" which refers to respecting the wishes of others to maintain good interpersonal relationships, which explains why patients may feel that declining food at a social gathering is considered impolite and unacceptable.^17,18

For patients, support and encouragement from family enabled them to engage in life participation. Family support has been reported to be vital for Latino patients in helping to manage and adhere to treatment regimens and lifestyle changes (including diet and exercise) to manage chronic conditions including diabetes.¹⁶ Other studies conducted with patients in Latin America have reported that family members have a critical role in helping patients to manage their treatment and symptoms.¹⁹ For Latino patients, faith and religion have often been identified as a source of support that provides strength to cope with their illness, and to face their fears and maintain a positive outlook.²⁰ Some patients felt encouraged by their nephrologist to manage their condition and treatment with optimism. In the context a patient-provider interaction, “personalismo,” a cultural construct that values relationships based on warm, caring, and trusting interactions²¹ allows patients to express emotions, seek help, and promote an active role between clinician and patients to improve their ability to engage in life activities such as exercise, hobbies, family and friend activities, employment, housework and/or study.

Our workshop involved patients, caregivers, and health care professionals from multiple countries in Latin America and was conducted and analyzed in Spanish language to ensure the capture cultural and linguistic nuances. Data saturation was achieved, and no new concepts or themes were identified after coding 6 discussion groups because all the concepts were identified in > 1 breakout group. We used investigator triangulation and member checking to ensure that the themes reflected the breadth and depth of the data. However, there are some potential limitations. The transferability of the findings to other populations and settings is uncertain. We acknowledge that patients with greater health literacy, resources, engaged, residing in metropolitan areas are more likely to have been able to attend the workshop. It is possible that social desirability bias and presence of clinicians may have inhibited open and free discussion.

We suggest practical, culturally responsive strategies such as family-inclusive goal setting to address life participation, involving support person(s) or family members12, 13, 14^,16,19 in clinic consultations, “social-eating plans” that address ways to adapt traditional dishes, portion control, and how to manage social expectations12, 13, 14, 15, 16 communication that emphasizes “personalismo”—warmth, respect, and bidirectional dialogue^20,21 and facilitating access to community or faith groups or peer navigators.¹⁹There is a need to improve life participation in patients with CKD and strategies that encompass support for mental well-being, social connections (including how to manage dietary restrictions in social settings), vocational rehabilitation, symptom management, and family-based interventions are suggested. We suggest that patients should have access to counselling to manage the psychological consequences of CKD and anxiety related to uncertainties regarding their health. In addition, culturally sensitive programs that help patients to engage in social activities, and to address concerns and difficulties with dietary restrictions in social settings may help improve the social aspects of life participation. Such interventions may benefit from the involvement of dietitians, who could assist patients with dealing with social values and pressures relating to their diet,^22,23 and how to create family meal plans that encourage better food choices. Patients may require assistance to maintain work and this may involve referrals to an occupational therapist and vocational rehabilitation programs addressing workplace problem-solving and advocacy, which have been shown to improve employment outcomes in patients with chronic disease.^24,25 One study demonstrated that a counselling and education program delivered by social workers and nephrologists improved the ability of patients with CKD to maintain employment.²⁶ Identifying and addressing debilitating symptoms, such as pain and fatigue, is needed. Physical rehabilitation programs for adults receiving dialysis have been shown to improve the ability to perform daily activities and physical functioning,²⁷ which may be beneficial for patients with CKD.

We suggest the need to assess life participation in patients with CKD in clinical and research contexts. The SONG-Life Participation instrument has been developed and has validated as a core patient-reported outcome in English-speaking adults with a kidney transplant,²⁸ and current work is being undertaken to assess its psychometric robustness for its use in the CKD and dialysis populations. The instrument addresses the domains of leisure, family, work and social, which reflects those identified in the workshop. We suggest the need for cultural and linguistic validation of the SONG-Life Participation measure so that it can be used in Spanish-speaking populations, and thereby broaden its applicability for implementation in trials, research, and other relevant settings.

Patients with CKD in Latin America experience impaired life participation and being unable to engage in social activities with family; and their community diminished their sense of wellbeing. Culturally responsive strategies and interventions to help improve life participation in patients with CKD in Latin America may help to enhance their mental and social well-being, and ultimately overall health.

Appendix

List of the Life Participation Workshop Investigators

Health Care Professionals

Adeera Levin, Alejandro Ferreiro, Allison Jaure, Ana Elizabeth P L Figueiredo, Ana Malvar, Anastasia Hughes, Andrea Matus González, Andrea Viecelli, Brooke M Huuskes, Chandana Guha, Claudio Mascheroni, Cristina Vallve, Eduardo Lorca, Germaine Wong, Haydee Mellado, Hernán Trimarchi, Javier Recabarren, Laura Sola, Lili Cervantes, Linda Wang, Macarena Arancibia García, Magdalena Madero, Matías Monkowski, Mauro Lampo, Rolando Claure, Soledad Molina, and Wilmer Jim Escobar Torres.

Patients and Family Members

Adriana Alsogaray, Aldana Marrero, Alejandro Torres, Alicia Susana Ferrari, Alma Molas, Basilio Palacios, Candela Leguizamón, Carlos González, Celeste Cáceres, Cinthia Otero, Claudia Mansilla, Claudio Cirelli, Cristian Benedit, Daniela Calvo, Elizabeth Troncoso, Erika Ameku, Federico Fuentes, Fernando Balieiro, Hernán Lanzillotta, Horacio Marcelo González, Humberto Gilabert, Jorge Spinelli, Laura Torres, Lautaro de Vedia, Leonardo Garateguy, Lourdes Leguizamón, Luis Ayala, Marcela Briones, Marcela Martínez, María Carolina, María del Carmen Lombardo, María Del Carmen Toto, María Eugenia Rotundo, María Galarza, María Laura Montes de Oca, María Martha Vera, María Victoria Recabarren, Mariana Flaherty, Marta Busto, Mercedes López Marcote, Natalia Congestri, Noemi Espínola, Noemí Mercedes Marcote, Norma Hernández, Nubia Valenzuela, Paula Campodónico, Paula Farías, Roberto Luis Calvo, and Yanina Vilariño.

Disclosure

AMG was supported by Agencia Nacional de Investigación y Desarrollo (ANID) Becas Chile - Doctorado en el extranjero (72210455). AJ was supported by an NHMRC Fellowship (APP1106716). AKV was supported by an NHMRC Emerging Leadership Grant (APP119603). All the other authors declared no cometin interests.

Supplementary Material

Supplementary File (PDF)

File S1. Life Participation workshop investigators list. File S2. Workshop agenda and background materials (Spanish-language workshop).