Background/Objectives: End-of-life (EOL) preparedness remains critically understudied among Hispanic patients with advanced breast cancer and their patient-caregiver dyads, despite evidence that preparedness significantly influences quality of life, care decisions, and caregiver well-being. This study aimed to explore how Hispanic patient-caregiver dyads conceptualize and experience EOL preparedness. Methods: A qualitative descriptive design was employed, guided by the Dyadic Cancer Outcomes Framework, which highlights patient and caregiver characteristics, relationship processes, individual and relational outcomes, the cancer care trajectory, and the broader social context as interrelated influences on dyadic experience. Semi-structured individual interviews were conducted in Spanish with 11 metastatic patient-caregiver dyads (n = 22 participants) recruited through Ponce Health Sciences University and the Ponce Research Institute in Puerto Rico. Data were analyzed using codebook thematic analysis in NVivo 15, with themes interpreted through the framework's components. Results: Six interdependent themes of EOL preparedness were identified: psychological and emotional, spiritual, informational, practical, physical, and caregiver role preparedness. Spiritual preparedness, grounded in faith, prayer, and surrender to divine will, functioned as the foundational axis organizing all other themes. Preparedness was dynamic and turning-point-driven, challenged anew at each stage of disease progression. Financial vulnerability, caregiver invisibility within formal care systems, and insufficient anticipatory information were identified as primary barriers. Family support and faith communities were the most consistently cited facilitators. Conclusions: The findings yield the first grounded, dyadic conceptualization of EOL preparedness with Hispanic advanced breast cancer patient-caregiver dyads. We propose a formal definition positioning preparedness as a dynamic, multidimensional, relationally embedded, and spiritually anchored process that is fundamentally interdependent between patient and caregiver. These results directly inform the development of a culturally tailored, dyadic EOL preparedness intervention for this underserved population.
Practical training and recruitment strategies are critical for the sustainable implementation of psychosocial interventions. However, few studies have examined how to prepare community partners and doctoral students to support culturally adapted psycho-oncology interventions. This pre-pilot study aims first to evaluate two distinct training programs and recruitment procedures, and second to explore preliminary pre-post outcomes of the Caregiver-Patients Support to Cope with Advanced Cancer (CASA) intervention, using the Consolidated Framework for Implementation Research (CFIR). Three clinical psychology graduate students received CASA training, and two community partners completed Recruitment training. We present descriptive pre- and post-assessments, along with qualitative feedback, for both training and institutional (Puerto Rico Biobank) and community-based recruitment outcomes. A related-samples nonparametric analysis examined pre- and post-CASA intervention signals. Results indicated knowledge gains among doctoral students (pre-test M = 3.3; post-test M = 9.3) and community partners (pre-test M = 4.5; post-test M = 9.5). Preliminary outcomes revealed significant improvements in spiritual well-being (Z = -2.618, p = 0.009) and quality of life (Z = -2.957, p = 0.003) and a reduction in depressive (Z = -2.764, p = 0.006), anxiety (Z = -2.667, p = 0.008), and distress (Z = -2.195, p = 0.028) symptoms following CASA. Of 26 recruited dyads, institutional referrals enrolled 16 dyads (61.5%), while community partners referred 10 dyads with a 90.9% success rate. Findings support the feasibility of both training and CASA exploratory outcomes suggest meaningful psychosocial benefits for Latino dyads coping with advanced cancer. Combining institutional infrastructure with community engagement may enhance sustainability and equitable access to psycho-oncology care.
OBJECTIVE:To determine associations between spiritual well-being (faith and meaning dimensions) with emotional suffering (anxiety, depression, hopelessness, and quality of life) in Latinos with advanced cancer and examine themes of existential coping. DESIGN:In a mixed-methods study, participants were recruited from cancer clinics in New York and Puerto Rico. Measures included the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale, the Hospital Anxiety and Depression Scale, and the Beck Hopelessness Scale. A subset of participants completed in-depth semi-structured interviews exploring the roles of existential and religious factors in adjustment to cancer. Correlations were conducted, and the interviews were analyzed with a thematic analysis approach. RESULTS:A sample of 142 Latinos with advanced cancer participated (67.6% stage IV and 32.4% stage III). The spiritual well-being, faith and meaning factor were associated with anxiety and depression symptoms. Meaning was associated with lower hopelessness and showed stronger associations with emotional suffering than the faith dimension. Lower acculturation was associated with higher hopelessness but not with depression/anxiety. In semi-structured interviews (n = 24), recurrent themes were: (1) receiving existential support from counselors; (2) receiving spiritual support from family and/or friends; (3) focusing on being spiritual and finding purpose rather than on a specific religion or faith; (4) religious coping; and (5) spiritual coping, focused on self-growth, finding meaning, and helping others to cope. Patients identified sources of meaning, including helping others, having a fighting spirit, a spirit of learning, enjoying work, enjoying life, family and children, confidence in providers/treatment, God/faith, and spirituality. SIGNIFICANCE OF RESULTS:Meaning had a more significant influence than faith on emotional suffering. Participants emphasized the importance of finding meaning and purpose, self-growth, and helping others as ways to cope with an advanced diagnosis. Interventions with a meaning-making approach, emphasizing finding purpose and growth, are needed for Latinos with advanced cancer.
When dealing with a cancer diagnosis, patients and informal caregivers often face situations that challenge their communication skills and may prompt them to seek counseling or other supportive resources. However, studies and interventions addressing effective communication needs within the Spanish-speaking community are scarce. This study aims to document the communication needs and preferences of cancer patients and caregivers about the format and delivery of a culturally tailored community-based intervention. Using a community-engaged research framework, we conducted a cross-sectional survey of 92 cancer patients and caregivers in Puerto Rico. Participants selected communication needs for which they desired additional support, and patient and caregiver responses were compared using Fisher’s exact tests with correction for multiple comparisons. Ninety-two participants (52 patients and 40 caregivers) completed the survey. The highest rated communication topics included ‘Develop problem-solving skills’ (76.9
Background: Toolkits/toolboxes represent a promising intervention tool for cancer care and mental health. However, research is needed to identify their key components and effective implementation strategies. Methods: Following PRISMA-ScR, the search was conducted across five databases using key terms. Included studies addressed mental health or cancer care using toolboxes or toolkits for adults, documented their delivery or implementation strategies, and were experimental or quasi-experimental in Spanish or English. Excluded studies involved adaptations, relied solely on qualitative methods, did not address the specified population, or were systematic reviews. Three independent reviewers conducted title/abstract screening, full-text review, and data charting, with discrepancies resolved by a senior reviewer. The review protocol was prospectively published in the Open Science Framework (OSF). The Downs and Black’s checklist was used to evaluate quality and assess for bias. Results: A total of 33 studies were included in the final review. The toolkits/toolboxes primarily consisted of themes related to mental health and wellness in cancer care. Most mental health diagnoses reported consisted of depression or depressive symptomatology (14, 20.3%) followed by anxiety (12, 17.4%). Educational (13, 15.1%) and cognitive and behavioral strategies (13, 15.1%) were the most frequently used, followed by self-management (10, 11.6%). A total of 13 (39.3%) included Hispanics/Latinos in their sample. In terms of quality appraisal, representation of the entire population was the least frequently met criterion (10, 30%). Conclusions: This review identified important methodological gaps in implementation and population representation, as well as intervention components that can represent promising key aspects of toolkits/toolboxes.
Sexual and gender minority individuals experience significant health disparities, including elevated rates of stress-related mental health conditions and chronic physical health conditions. Among Hispanic and Latinx populations, these disparities are particularly pronounced. They face intersecting minority stressors related to ethnicity, sexual orientation, and gender identity. This study examined the prevalence and association between stress-related mental health conditions and chronic physical health conditions among sexual and gender minorities in both a full sample and a Hispanic/Latinx subsample. Using data from 413,360 participants in the All of Us Research Program, we assessed the likelihood of reporting chronic physical health conditions among sexual and gender minorities with stress-related mental health conditions. Logistic regression analyses were performed, adjusting for age and body mass index, as these are known covariates. Findings indicate that, in the full sample, sexual and gender minorities were more likely to report chronic physical health conditions compared to their cisgender and heterosexual counterparts. Within the Hispanic/Latinx population, sexual minorities groups with stress-related mental health conditions were over twice as likely to report chronic physical health conditions compared to those without such conditions. The association between gender minority status and chronic physical health conditions was stronger than that observed for sexual minority status, underscoring the compounded health risks faced by gender minority individuals. These findings point the urgent need for targeted healthcare interventions. They also highlight important implications for public health policy and clinical practice, particularly the development of culturally responsive strategies to reduce health disparities among sexual and gender minority individuals.
The National Institute on Minority Health and Health Disparities Research Framework (NIMHD-RF) provides a multidimensional structure to examine health disparities across domains and levels of influence. While influential, its current Behavioral Domain centers on observable behaviors and underrepresents key psychological factors and determinants that shape health outcomes among minoritized populations. This gap limits the framework’s capacity to account for complex factors such as internalized stigma, identity-related stress, and cultural processes that significantly contribute to mental health disparities. In this viewpoint, we propose an adaptation of the Behavioral Domain into a Psychological/Behavioral Domain to better reflect the interconnected psychological, biological, sociocultural, and environmental factors influencing health. The revised domain incorporates psychological vulnerabilities, coping strategies, and identity-based stressors across all levels of influence, from individual to societal, and acknowledges macro-level processes such as structural stigma and inequitable policies. This reframing emphasizes that behaviors are shaped by psychological experiences and systemic inequities, not merely individual choice. By explicitly integrating psychological factors and determinants, the framework becomes more robust in guiding culturally responsive, equity-driven research and interventions. This adaptation aims to enhance the framework’s utility in mental health disparities research and to support efforts to achieve health equity for historically underserved populations.
BACKGROUND: Patients with advanced cancer and their caregivers face significant psychosocial challenges, including distress, existential crises, and social isolation. Hispanic/Latino (H/L) communities experience disproportionate health disparities, exacerbating these challenges. Limited access to psychosocial care due to barriers, such as transportation and socioeconomic constraints, is especially evident among patients living in rural areas of Puerto Rico, where access to services is more restricted compared to metropolitan zones. These disparities underscore the need for culturally tailored interventions. OBJECTIVE: This study assesses the acceptability and refinement of the Caregivers-Patient Support for Latinx Coping with Advanced Cancer (CASA) intervention through the perspectives of healthcare providers and community partners. Using the RE-AIM framework, we examine the intervention’s Reach, Effectiveness, Adoption, Implementation, and Maintenance to enhance its impact and sustainability. METHODS: We conducted a qualitative study using Community-Based Participatory Research (CBPR), involving semi-structured interviews with 11 community partners and 10 healthcare providers actively involved in cancer care in Puerto Rico. Data were analyzed using a thematic content analysis within the RE-AIM framework to assess the feasibility, barriers, and facilitators of the intervention. RESULTS: Participants highlighted the relevance of the CASA intervention in addressing psychosocial needs, emphasizing the importance of integrating cultural values. Key facilitators included community engagement and telehealth, while barriers included patient resistance and logistical challenges. Recommendations included enhancing community partnerships and training. CONCLUSION: The findings support CASA as a culturally tailored intervention that meets the unique needs of H/L patients and their caregivers. Community engagement and flexible implementation strategies are essential for its sustainability.
(1) Background: Coping with a cancer diagnosis can be a challenging process, in which patients and caregivers often require family support. For an adequate support network, there must be clear communication among patients, caregivers, and family members. However, the literature has not adequately discussed communication interventions with extended family members. Our research team identified the need to incorporate communication strategies among patients, caregivers, and extended family. For this reason, we aimed to develop a communication module for patients with cancer, caregivers, and extended family members. (2) Methods: We conducted two steps to address the study’s objective: (a) a narrative literature review to identify communication strategies or interventions and (b) a data triangulation with the narrative literature review findings, the primary study findings, and the cultural expert expertise. (3) Results: The module content included learning what to say and improving general communication. Within the content were communication strategies such as prompt lists, priority lists, methods of telling others, delegating, seeking support, and others. (4) Conclusions: Enhancing the communication among patients with cancer, caregivers, and extended family promotes adequate family support. Nevertheless, future studies should explore the acceptability and implementation strategies of protocols focused on communication.
Objective: The present study explored the association between the losses incurred due to breast cancer diagnosis, symptoms of depression, PANIC/GRIEF, and contextual factors within the context of Hispanic/Latina (H/L) patients diagnosed with breast cancer (BC). Methods: This study was a cross-sectional study of adult H/L BC patients (n = 129). The participants were H/L women diagnosed with breast cancer (stages 0–4) in the past five years. Sociodemographic variables were assessed, as well as depression symptoms (Patient Health Questionnaire-9; Spanish version), grief (The Affective Neuroscience Personality Scales, Grief subscale; Spanish version), and general losses (Grief diagnostic instrument for general practice, loss categories section). Results: The mean age for the sample was 55.37 (SD = 11.57). The most frequent non-death-related losses were loss of liberty (f = 63, p = 48.8%), followed by fear of own death (f = 67, p = 51.9%) and loss of quality of life (f = 65, p = 50.4%). A higher mean rank was observed in depressive symptomatology scores for those who experienced loss of liberty (U = 73.91, p < 0.008), quality of life (U = 77.30, p < 0.001), and fear of their own death (U = 74.88, p < 0.002). The results indicate a significant positive relationship between the number of reported losses and depressive symptomatology (r = 0.340, p < 0.001). In terms of contextual factors, the participants who reported their income not being enough to cover their expenses reported a greater number of losses related to diagnosis (U = 74.67, p < 0.001) and more depressive symptomatology (U = 69.84, p = 0.041). Moreover, a relationship was observed between grief and academic levels (r = −0.234, p = 0.008). Likewise, a relationship was observed between age and the number of losses (r = −0.461, p < 0.001). Conclusions: Our results provide new evidence on how primary non-death-related losses due to a breast cancer diagnosis impact the mental health of H/L BC patients.
Background/Objectives: Lay Community Health Workers (CHWs) play a critical role in reducing mental health disparities, particularly among underserved and vulnerable populations, by bridging gaps in care and promoting mental well-being. This narrative review aimed to identify and characterize training programs designed for CHWs, with a focus on those targeting cancer patients and individuals with chronic conditions. Methods: A comprehensive literature search was conducted across databases including PubMed, EBSCOhost, Scielo, Redalyc, and Google Scholar. From an initial pool of 10,372 references, 27 relevant articles were selected, encompassing research articles, training materials, curricula, and other resources. Results: The identified training methods included role-playing, instructional videos, and manuals designed to equip CHWs with skills in mental health intervention, prevention, management, education, and stigma reduction. Training programs also incorporated evidence-based interventions and psychological skill training. This review highlights a notable gap in research on CHW-led interventions in cancer palliative care and mental health. Conclusions: The findings support the development of a specialized mental health training program tailored for CHWs working with cancer survivors, to enhance their capacity to address mental health challenges, reduce stigma, and promote psychological well-being. Future efforts involve developing a training intervention for CHWs to support the needs of cancer survivors.
Background: Studies evaluating the effects of natural disasters on cancer outcomes are scarce, especially among USA ethnic minority groups, and none have focused on the effects of concurrent natural disasters and the COVID-19 pandemic. The goal of this secondary data analysis is to explore the impact of concurrent exposure to COVID-19 and earthquakes on psychological distress and symptom burden among Puerto Rican cancer survivors. Methods: This secondary data analysis (n = 101) was part of a longitudinal case–control cohort study (n = 402) aimed at describing unmet psychological needs among Puerto Rican cancer patients and non-cancer subjects previously exposed to Hurricane María in 2017. The research team pooled data from participants (cancer survivors and non-cancer group) from their baseline assessments and from follow-up assessments conducted during January–July 2020 (earthquake and the lockdown period). A descriptive, paired t-test, non-parametric mean rank test, and two-sided Pearson correlation analyses were performed. Results: Psychological distress and cancer symptom burden diminished over time. Resilience was significantly correlated with all the psychological and symptom burden variables during both pre- and post-earthquake and COVID-19 assessment periods. Conclusions: The results support the role of resilience, social support, and post-traumatic growth as potential protective factors preventing psychological distress and diminishing cancer symptom burden among cancer survivors exposed to natural disasters and the COVID-19 pandemic.
Background: Cancer affects the emotional well-being of patients and caregivers, highlighting the need for effective communication strategies. This study explores a community-based communication intervention for Latino caregiver–patient dyads coping with cancer. The acceptability of the intervention, along with its associated facilitators and barriers, are crucial considerations. Methods: Three focus group interviews involved healthcare providers, community partners, patients, and caregivers to discuss the communication needs of this population and the components of a communication intervention while identifying facilitators and barriers to the intervention. Qualitative thematic content analysis was conducted using Nvivo v12, ensuring reliability through independent analysis and consensus building. Results: Participants (89% female, average age of 53) included patients (30%), caregivers (30%), community partners (25%), and healthcare providers (15%), and they discussed the overall acceptability of adapting a communication intervention, where they emphasized benefits for caregivers and patients, primarily through support groups. Communication strategies accepted by participants include psychological support, cancer education, assertive communication skills, and methods for improved interactions with healthcare providers and extended family. Conclusions: Participants’ responses align with the current literature, emphasizing problem-solving, mutual support, and communication strategies and underscoring the role of community partners. The study underlines the necessity for culturally tailored communication interventions for Latino families facing cancer.
Objective: The current study aimed to explore changes in health-related behaviors and social practices in Hispanic cancer patients during a government-mandated lockdown and their relationship to Methods: Secondary analyses were conducted on data gathered by a longitudinal cohort study to describe the unmet needs of Hispanic cancer patients living in Puerto Rico exposed to Hurricane Maria in 2017, earthquakes in 2020, and COVID-19. However, our study solely focuses on the data from the COVID-19 pandemic period. Results: Most participants were women (n = 72) with breast cancer (81.2%). Participants exhibited changes in religious practices (60%), physical activity (58.4%), and sedentary behavior (50%); 31.4% experienced changes in eating habits and sleeping patterns. Responses to the study questionnaire involved staying connected with family (85.5%) through phone calls (78.2%); 69.9% of the participants reported observing shifts in the family dynamics. A strong majority endorsed the government-imposed isolation measures (95.6%). Patients not undergoing treatment were likelier (r = -0.324; P = .010) to support the measures. Finally, younger patients experienced more work-related changes (r = -0.288; P = .017) and were less inclined (r = -0.293; P = .011) to find the isolation measures appropriate. Conclusion: This paper describes the lockdown-related changes in health and social behaviors sustained by cancer patients, changes which could potentially impact their overall health and health-related quality of life. Our results fill an existing gap in our findings and contribute to understanding the experiences of cancer patients (in particular, Hispanic patients) during the COVID-19 pandemic.
Background: Cancer disproportionately affects Hispanic populations, yet the preparedness of Hispanic caregiver–patient dyads facing cancer remains understudied. This study aims to identify essential components of preparedness needs and inform future psychosocial interventions for this demographic. Methods: Secondary analyses were conducted utilizing focus groups to develop a communication intervention for Hispanic patients and caregivers. Transcripts were qualitatively analyzed using NVivo v12 (2020). Results: Analysis revealed symptom management and treatment comprehension as pivotal aspects of preparation. Additionally, preparedness among our sample emerged by addressing the multifaceted dimensions of preparedness, including psychological, emotional, educational, familial, practical, financial, and spiritual aspects. Conclusions: Tailoring interventions encompassing diverse dimensions of preparedness can foster inclusivity and maximize their impact on supportive measures. This underscores the necessity for culturally sensitive approaches when delivering interventions supporting Hispanic individuals navigating the challenges of cancer.
Introduction:Latino people with cancer might face additional health, emotional, and socioeconomic burdens of the COVID-19 pandemic.Methods:This study included data from two waves of (independent) assessments with providers of mental health services to Latino/Hispanic people with cancer from the United States, Spain, and Latin America (first wave: May-July 2020; second wave: March-July 2021) who completed a cross-sectional online survey with open-ended and closed-ended questions, including concerns of people with cancer with/without COVID-19.Results:The response rates were 15% for Wave 1 (N = 88) and 14% for Wave 2 (N = 115). For Wave 1, 74 surveys were completed by clinicians and included in the analyses; for Wave 2, 115 surveys were included. Providers (first [77%] and second [84%] waves) reported that most patients had concerns about stress/symptoms of anxiety, followed by concerns about COVID-19 exposure (first [74%] and second [82%] waves) and family members' exposure (second wave 75%), hospital visits or appointments (82%, 79%, respectively), treatment/testing delays (69%, 72%, respectively), general health (58%, 71%, respectively), and income/salary loss or reduction (60%, 50%, respectively). According to providers, concerns of patients diagnosed with COVID-19 included fear of death and dying, spreading the disease, getting worse, and lack of appropriate medical care.Conclusion:Our findings reveal the need to address health, emotional, and socioeconomic burdens of the COVID-19 pandemic throughout Latin America, Spain, and the United States for Latino people with cancer. Interventions targeting the health care access, emotional, and socioeconomic needs of Latino people with cancer are warranted.