A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America

Yennurajalingam, Sriram; Noguera, Antonio Vercher; Parsons, Henrique A.; Torres-Vigil, Isabel; Duarte, Eva Rossina; Palma, Alejandra; Bunge, Sofía; Palmer, J. Lynn; Delgado-Guay, Marvin Omar; Bruera, Éduardo

doi:10.1177/0269216313486953

Cited by 24 publications

(28 citation statements)

References 26 publications

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“…Sensitivity surrounding who needs to be included in this discussion is critical for success. For example, many cultures consider this to be an extended family discussion and not just an individual patient discussion, and inclusion of all members of the family makes a significant difference to the success of palliative interventions . This is a lesson that is relevant across all resource settings.…”

Section: What Are the Social Policy And Economic Challenges Of Effementioning

confidence: 99%

Palliative care in women's cancer care: Global challenges and advances

Cain

Denny

2018

Intl J Gynecology & Obste

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Women's cancer rates are increasing in low‐ and middle‐income countries, with presentations that are often far advanced requiring intense symptom management, thus advancing the urgent need to address palliative care. Most resource settings have some options available to assist women with advanced gynecologic cancer, and a combination of leveraging these and expanding on emerging models for palliative care could lessen suffering and improve care for women with gynecologic cancers globally. Providing palliative care for women with cancer is constrained by resources (human and physical), lack of equipment, lack of access, and policy absence or barriers. There is important work to be done in advocating for appropriate infrastructure development and legislation to assure that these options are available to women and their families. Access to adequate opioid and other pain relief options for cancer‐related pain is a particular concern given that availability, cost, and legislative prohibitions create barriers that cause suffering for patients and grief for their families who are unable to address their suffering. All of these require ongoing advocacy for continual advances to improve access and infrastructure for palliative care.

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Section: What Are the Social Policy And Economic Challenges Of Effementioning

confidence: 99%

Palliative care in women's cancer care: Global challenges and advances

Cain

Denny

2018

Intl J Gynecology & Obste

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“…This intervention did not reduce depressive symptoms in their sample. In patients with advanced cancer and depressive symptoms, it has been shown in Latin America that individuals with advanced cancer and depression prefer psychotherapeutic interventions over pharmacological treatment; the former is preferred because they promote strategies for coping with the disease, better communication, and understanding of emotional experience and the search for meaning in one's current life [28].…”

Section: Discussionmentioning

confidence: 99%

“…The first could be referred to as familyism, which emphasizes family participation in end-of-life care and advance care planning Many last decisions in end-of-life care in Latin America are still made through family consensus, with the patient having passive decisional control [27]. Another is hierarchical relationships, in which a paternalistic approach is often taken by heath care providers in Latin America who commonly avoid disclosing a grave prognosis to patients, causing delay in referral to PC services [28][29]. The cultural values of familyism and hierarchical relationship lead to families and/or the physicians often taking on all of the end-of-life care decision-making [30][31].…”

Section: Introductionmentioning

confidence: 99%

A Review of Psychosocial Interventions in Patients with Advanced Cancer in Latin America and the Value of CALM Therapy in This Setting

Troncoso¹,

Rydall²,

Hales³

et al. 2019

AJPN

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Background: Advanced cancer is associated with multiple profound and practical challenges, including physical suffering and support needs. Depressive symptoms and other manifestations of distress are common in this population. At present, little professional support is available to help to alleviate the psychological distress of patients and families living with the burden of advanced cancer. Effective interventions and their integration into local health systems are needed to meet this challenge. Managing Cancer and Living Meaningfully (CALM), a brief psychotherapy intervention for patients with advanced cancer. Research conducted in Canada has demonstrated its feasibility, acceptability and effectiveness in reducing and preventing depressive symptoms, in managing distress related to death and dying, and in preparing for the end of life. Research is needed to demonstrate the feasibility and acceptability of CALM in Latin America, a developing region comprised of 35 different low-and middle-income countries in South and Central America, where more than one million people are presently in need of end-of-life care. Aim: Review evidence for psychosocial oncology interventions in Latin America and the potential applicability and implementation of CALM therapy in patients with advanced Cancer in this setting. Methods: We used an iterative search process to locate information about psychological interventions for patients with advanced cancer in South/Central/Latin America. Multiple searches were performed in Medline, Google Scholar, National Guidelines Clearinghouse, Trip Database, Redalyc, Scielo, and Latindex for terminology describing cancer, end-of-life, psychology, and psychological interventions. In the larger resources, we added either limits or search terms for Latin America. Results: The literature identified describes psychological interventions for patients with cancer, including psychoeducation, support therapies, group therapies, cognitive behavior therapy, spirituality and hypnosis. However, very few of these interventions were specifically designed for patients with advanced cancer. The majority of articles describe psychological/ psychotherapeutic interventions being implemented in Europe, North America, and Australian settings and we could identify only two papers describing psychological interventions being applied in an advanced cancer setting in Latin America. Conclusion: The availability and practice of psychological interventions in advanced cancer in Latin America are scarce. However, interest in applying such interventions appears to be growing. The application of the CALM intervention in multiple cultures and international settings suggests that it may be feasible and acceptable and effective in Latin America. Research is needed to demonstrate this and to support advocacy for its implementation in this region.

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“…The Latino family further views this as a way to remove the burden of treatment decisions from the patient (Kwak & Haley, 2005). Perspectives of Guatemalan caregivers indicated a significantly higher percentage of passive decision making when compared with the perspectives of Chilean and Argentinian caregivers (Yennurajalingam et al, 2013).…”

Section: Decision Makingmentioning

confidence: 99%

At the Grave We Make Our Song: A Palliative Care Study in Rural Guatemala

2016

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Guatemala is ranked fourth lowest out of 18 countries by the Latin American Association for Palliative Care Index, noting few trained nurses and physicians and insufficient palliative care services (Pastrana et al., 2012; Pastrana, Torres-Vigil, & De Lima, 2014). The Worldwide Palliative Care Alliance placed Guatemala in the category of isolated palliative care provision, signifying limited availability of morphine and services in relation to population size (Lynch, Connor, & Clark, 2013; Worldwide Palliative Care Alliance & World Health Organization, 2014). Finally, the United Nations Refugee Agency reported that the provision of palliative care in Guatemala is both restricted and inadequate, specifically with regard to the availability of and access to pain control (Human Rights Watch, 2013). Thus, many Guatemalans suffer at the end-of-life (EOL) due to this critical absence of palliative care services. Guatemalans are the sixth largest Latino immigrant subgroup in the United States and this population is expected to increase (Pew Hispanic Trends Project, 2010). Most of the health-related literature on older Latinos focuses on established populations in California, Texas, and Florida. The research on Latinos in the United States is often aggregated into a single population demographic when in reality the population is widely diverse (Dominguez et al., 2015). For the past two decades, the Latino population in North Carolina (NC) has increased as a result of employment opportunities and family reunification (Larson & McQuiston, 2012; Mann et al., 2016). Although the NC Census does not report Latino subgroups, anecdotal reports from health department and public school staff indicate a growing Guatemalan community in eastern NC (B. Nuncio, personal communication, April 28, 2016). While palliative and EOL care are considered different services, these terms are often used interchangeably with palliative care being the broader term. The World Health Organization (2015) defines palliative care as improving quality of life for families and patients by preventing and/or relieving suffering. Using the palliative care guidelines from the Institute for Clinical Systems Improvement, hospice or EOL care is indicated specifically when life expectancy is estimated to be 6 months or less (McCusker et al., 2013). Palliative care can be initiated without this time limitation. Beginning palliative care closer to the start of a terminal diagnosis or illness can be beneficial by addressing the strengths, 674537T CNXXX10.

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A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America

Cited by 24 publications

References 26 publications

Palliative care in women's cancer care: Global challenges and advances

Palliative care in women's cancer care: Global challenges and advances

A Review of Psychosocial Interventions in Patients with Advanced Cancer in Latin America and the Value of CALM Therapy in This Setting

At the Grave We Make Our Song: A Palliative Care Study in Rural Guatemala

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