Important End-of-Life Topics among Latino Patients and Caregivers Coping with Advanced Cancer

Abstract

There is a known end-of-life related disparity among Latino individuals, and there is a need to develop culturally sensitive interventions to help patients and caregivers cope with advanced cancer. Latino patients and caregivers coping with advanced cancer were asked to list important end-of-life topics to culturally inform a psychosocial intervention adaptation process. A qualitative study was conducted, and semi-structured interviews were performed, audio-recorded, and transcribed. Recordings and transcriptions were reviewed and analyzed using thematic content coding. The semi-structured interview described and demonstrated intervention components and elicited feedback about each. Free listing method was used to assess important topics among Latino advanced cancer patients (n = 14; stage III and IV) and caregivers. Patients and caregivers were given a list of 15 topics and asked which topics they deemed important to integrate into the intervention. Overall, more than half of the participants considered it important to include 13 of the 15 topics related to daily activities (eight subcategories), psychosocial support (three subcategories), discussing diagnosis and support (three subcategories), and financial difficulties (one subcategory). Patient-caregivers reported importance in most end-of-life topics. Future research and intervention development should include topics related to psychosocial support, daily activities, discussing diagnosis and support, and financial difficulties.

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

“…Family caregivers play an essential role in the care and support of patients in palliative care and are considered fellow sufferers alongside patients (Cormio et al, 2014;Pan and Lin, 2022;Rosario-Ramos et al, 2022). The literature review showed some studies in this area in other countries (Chang et al, 2013;Wang et al, 2018;Chua et al, 2020).…”

“…The family caregivers' unmet needs and unresolved problems may harmfully affect their well-being and the patient's health outcomes (Nelson et al, 2022). Therefore, the path to successful caregiving for cancer patients in palliative care may lie in acknowledging that family caregivers play a fundamental role (Cormio et al, 2014;Pan and Lin, 2022;Rosario-Ramos et al, 2022).…”

“…As the delivery of palliative care to cancer patients moves toward community care (Murray et al, 2015), family caregivers are expected to become even more involved in providing palliative care (Finucane et al, 2019). Even the most patient, compassionate and empathetic family caregiver can reach a point where it seems impossible to continue as emotional strains amount (Cormio et al, 2014;Pan and Lin, 2022;Rosario-Ramos et al, 2022). In turn, caregivers' needs are interconnected with patients' well-being and will not just decrease their quality of life but negatively impact the patient's health outcomes (Milbury et al, 2013;Fiest et al, 2018;Leykum et al, 2022).…”

Acceptance of Caregiver–Patient Support to Latinx Coping with Advanced Cancer (CASA) Intervention: A Caregiver Case Study

“…A case study of a participant from the pilot study of the cultural adaptation of CASA [ 30 , 31 , 32 ] is presented, focusing on the comprehension and acceptance of the sources of the meaning of the Latino advanced cancer caregiver’s experience. The Ponce Research Institute Institutional Review Board (IRB) and Ethical Committee approved all the study procedures.…”

“…It is a method that is more suited to capturing information descriptively as opposed to a survey or experimental design [ 34 , 35 ]. In the parent study [ 30 , 31 ], multiple caregivers were interviewed, and most participants were very concise in their interview approach. However, the research team decided to explore the present subject’s data as he was more elaborate when answering our questions, providing us with deeper insight into his experience as a caregiver.…”