Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population.

OBJECTIVES: Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. METHODS: In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. RESULTS: Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p = 0.004), anxiety (3.02 [1.19-7.71]; p = 0.021), caring for the patient alone (2.69 [1.26-5.77]; p = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p = 0.04), and patient's religion (3.90 [1.21-12.61]; p = 0.02) were independently associated with caregiver burden. SIGNIFICANCE OF RESULTS: FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.

Providing Care During the COVID-19 Pandemic: The Experience of Formal Caregivers in Long-Term Care Facilities in Chile.

The current study aimed to identify the main challenges to formal caregivers from different long-term care facilities (LTCFs) that care for older adults (aged ≥60 years) in Chile during the coronavirus disease 2019 pandemic. Chile's national LTCF governing body (SENAMA) sent a survey to 1,190 LTCFs, receiving 996 responses. LTCF characteristics were number of residents, certification with SENAMA, licensure, geographic zone, and poverty level. Four dimensions were assessed: (a) concerns, (b) challenges, (c) needs, and (d) opportunities for improvement. The majority of respondents replied negatively to these four dimensions. Among those who responded positively, the fear of infecting a loved one, staff shortages and overwork, the need for access to psychological support, and improving payments were among formal caregivers' primary concerns. Targeting supportive interventions for formal caregivers, clinically and psychologically, is essential to preserve caregivers' health. [Journal of Gerontological Nursing, 49(5), 39-44.].

Development and Validation of a Tool to Assess the Structural Quality of Palliative Care Services.

CONTEXT: The current gap in access to palliative care requires the expansion of palliative care services worldwide. There is little information about the structural components required by palliative care services to provide adequate end-of-life care. No specific tools have been developed to assess the structural quality of these services. OBJECTIVE: To develop and validate a tool to assess the structural quality of palliative care services. METHODS: A scoping review of literature was performed to identify structural quality indicators of palliative care services. National experts participated in a two-round Delphi method to reach consensus regarding the importance and measurement feasibility of each proposed indicator. Consensus was reached for each indicator if 60% or more considered them both important and feasible. The selected indicators were tested among Chilean palliative care services to assess instrument psychometric characteristics. RESULTS: Thirty-one indicators were identified. Thirty-five experts participated in a two-round Delphi survey. Twenty-one indicators reached consensus and were included in the structural quality of palliative care services tool (SQPCS-21). This instrument was applied to 201 out of 250 palliative care services in Chile. Achievement for each indicator varied between 8% and 96% (mean 52%). The total SQPCS-21 score varied between 3 and 21 points (mean 11 points). CONCLUSION: The SQPCS-21 tool to assess structural quality of palliative care services, has good content and construct validity and its application provides information about institutions at the individual and aggregated level. This tool can provide guidance to monitor the structural quality of palliative care worldwide.

Long-term Care in the Agenda: The Case of Chile.

The Chilean presidential elections of 2021 included an unprecedented topic in the country's political debate: long-term care (LTC). Although some public policies and programs have been in place for at least 20 years, during this 2021 presidential election LTC was mentioned for the first time in a political campaign. Five out of seven candidates highlighted the importance of LTC in their proposals and designed policies to address it. Why did this topic gain momentum as a campaign topic in 2021? What can explain the sudden inclusion of a new topic on the Chilean political agenda? Using Kingdon's multiple streams framework this article aims to understand the factors explaining the inclusion of LTC in the Chilean political agenda during the past presidential elections. A two-step qualitative research design was performed using a case study approach. As a first step, a documentary analysis of the campaign programs was conducted searching for references to LTC proposals. In a second step, semi-structured interviews were carried out with representatives from three of the seven campaign teams, including the teams that reached the ballotage. Data were analyzed using Kingdon's multiple streams framework. Results showed that the availability of national data on LTC needs helped highlight the problem and acted as a facilitator for advocacy; international organizations and other countries' experiences in implementing LTC systems served as policy entrepreneurs; and four events-the feminist movement, the social outbreak with the constitutional process, and the COVID-19 pandemic-pushed LTC forward on the political agenda. The case of Chile illustrates how Kingdon's framework can be used to identify facilitators for LTC inclusion on the political agenda, serving as an example for other countries facing similar issues and fostering the global debate around the increase in LTC needs.

Constraints that discourage participation in the labour market by female carers of older relatives in Santiago, Chile.

Providing care for older people who have support needs is mainly a familial and female responsibility in Chile. Despite Chile's development level, the participation of females in the workforce lags behind (at around 50%), and 72% of female carers of an older relative are not in the labour force. This paper explores the reasons why in Latin America adult children remain out of the labour force while caring for an older parent or parent-in-law who has support needs. It draws on 30 in-depth interviews of family carers from low- to high-income households. The interviews were carried out in Chile in 2017, and were analysed using an inductive thematic analysis to identify core themes related to the subjects' reasons for remaining out of the labour force. Four factors hinder the combination of paid work and caring for a parent or parent-in-law with support needs: (a) externalised care was too expensive; (b) finding non-precarious, flexible work was difficult; (c) their perception of femininity or womanhood conflicted with the idea of combining care and paid work; and (d) they experienced a lack of public and/or social support.

Insulin Adherence in Type 2 Diabetes in Mexico: Behaviors and Barriers.

OBJECTIVE: To investigate factors associated with insulin adherence in subjects with type 2 diabetes mellitus (T2D) attending a tertiary care centre in Mexico City. MATERIAL AND METHODS: Cross-sectional study, including 200 patients. Adherence to insulin therapy was measured with a medication adherence questionnaire. Sociodemographic data and factors related to insulin omission were collected and compared between the nonadherent and adherent groups. RESULTS: We categorized 117 (58.5%) patients as nonadherent and 83 (41.5%) as adherent. Among the adherent, only 22 patients (11%) had excellent adherence to insulin therapy. The following factors were associated with nonadherence: lack of planning of daily activities (46.1%), fear of hypoglycemia (41%), economic factors (15.4%), and number of insulin applications (2.31 versus 1.76 applications per day). CONCLUSIONS: In this study, patients with type 2 diabetes attending a tertiary care referral centre showed inadequate adherence to insulin therapy. The principal factors associated with insulin omission were low socioeconomic status, fear of hypoglycemia, and a greater number of insulin applications per day.