The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach.

BACKGROUND: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it. AIM: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks. DESIGN: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model. SETTING/PARTICIPANTS: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer. RESULTS: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified. CONCLUSION: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia.

ABSTRACTBackground:Dementia, even more than cancer, demands long-term care. While in Indonesia cancer is accepted as a disease requiring caregiving, dementia is still considered "a normal condition." These differences might affect the experiences of caregivers, especially those relating to social health, the subject of our study. We aim to describe and compare the lived experiences of family caregivers of patients with cancer (PWC) with those of patients with dementia (PWD) in Yogyakarta, Indonesia, and to explore the role of their social health in these experiences. METHOD: A qualitative design was applied. In-depth face-to-face interviews were conducted with PWC and PWD caregivers in two outpatient clinics of a tertiary hospital. The constant comparative method was applied to analyze the data that were interpreted using the concept of social health to explore the experiences of the caregivers. We used Atlas.ti software. RESULTS: Three themes were identified: problems with caregiving, dealing with problems, and beliefs in caregiving. We found more similarities than differences in the experiences of caregivers in both groups. Half of the categories were related to social health: challenges, consequences, hiding, social support, and the caregiver's approach. The organization of dementia care is characterized by simplicity and direct ties between medical specialists, PWD, and caregivers, whereas cancer care encounters coordination problems. CONCLUSIONS: Family caregivers of both groups mostly had similar experiences of the caregiving process. Gaining a better understanding of the specific experiences of caregivers, and their social health, opens new avenues for interventions to improve their quality of life.

Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training.

BACKGROUND: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. METHODS: The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. RESULTS: The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). CONCLUSIONS: Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of palliative care in Indonesia.

Family caregivers' involvement in caring for a hospitalized patient with cancer and their quality of life in a country with strong family bonds.

BACKGROUND: Being involved in caring for family members during illness is part of the Indonesian culture, even during hospitalization. It is unknown which factors influence the quality of life (QoL) of family members taking care of their loved ones. The present study aims to identify factors influencing the QoL of family caregivers of hospitalized patients with cancer in Indonesia. METHODS: A cross-sectional survey was performed. Data were collected in a general hospital in Yogyakarta from September to December 2011. Family caregivers of patients with cancer were invited to participate. Regression analysis was used to determine which aspects of caring and which demographic characteristics influenced their QoL. The Caregiver QoL Index-Cancer questionnaire was used to measure the QoL. RESULTS: One hundred of 120 invited caregivers (83%) completed the questionnaire. Being involved in psychological issues in caring (ß = 0.374; p = 0.000), younger age (ß = -0.282; p = 0.003), no previous caring experience (ß = -0.301; p = 0.001), and not being the spouse (ß = -0.228; p = 0.015) negatively influenced the QoL and explained 31% of the variation (adjusted R(2) = 0.312; F = 12.24; p = 0.000). Gender, education level, and time spent on caring did not influence the QoL of family caregivers. CONCLUSIONS: Our findings identified modifiable factors such as dealing with psychological issues and lack of experience in caring that negatively influenced the QoL of family caregivers. These factors are potential targets for intervention strategies. Education and intervention programs focusing on dealing with psychological problems in cancer care might improve the QoL of both patients and their families.

Comparison of palliative care education for family caregivers in high-and-low-income countries: An integrative review.

Background: In most resource-limited countries, palliative care is still under development. Despite the differences, the involvement of family caregivers is fundamental in both High-Income Countries (HICs) and Low-Income Countries (LICs). The lack of formal support in LICs implies that educational interventions to support family caregivers in this region could be more complex and urgently needed than in HICs. To comprehend the existing situation and identify the gaps in LICs, using HICs as a benchmark standard and conducting a review comparing educational interventions in both regions is essential. Objective: To identify and compare the existing implementation of education for family caregivers of patients with advanced cancer in LICs and HICs. Design: An integrative review guideline by Whittemore and Knafl was followed. Interventional studies related to education for family caregivers providing care for adult patients with cancer were included, and review articles were excluded. Data Sources: Data were obtained from PubMed, EBSCO, ProQuest, and ClinicalKey. The search was conducted on 18 November 2021 and updated on 9 August 2023. Review methods: Data reduction, data comparison, conclusion drawing, and data verification were conducted. Results: Out of the 11 studies included, nine were randomized controlled trials, and two were quasi-experimental studies. Among them, seven (63%) were conducted in HICs, and four (37%) were carried out in LICs. In both regions, the psychological aspect was the most commonly addressed subject in palliative care education for family caregivers. However, in LICs, no articles specifically addressed the social and spiritual aspects of family caregivers' education. Research conducted in LICs mostly involved nurses, while studies in HICs included a more diverse range of healthcare professionals. Typically, these programs required two to three sessions, with 30-60 minutes duration for 3-12 weeks. Conclusion: The social and spiritual aspects can be integrated into family caregivers' training programs in LICs in the near future. Nurses, as an integral part of the multidisciplinary team, are capable of contributing to the development of educational programs for family caregivers, especially in resource-limited countries where patients rely heavily on their caregivers and relatives. Support from nurses is fundamental in such contexts.

Common ethical dilemmas of family caregivers of palliative patients in Indonesia.

Family caregivers, especially in Asian countries, have a profound role in caring for a sick family member. However, there are wide variations between the Asian and western world in terms of culture and facilities. Therefore, the problems and needs of family caregivers between those two regions may also be distinct, and it is important to explore and elaborate based on our empirical evidence. In Indonesia, motives and values in caregiving and religion become the wheel-power of the family caregivers in providing care. This affects action and consequences for caregivers. This paper attempts to elaborate on common ethical dilemmas that usually face by family caregivers in Indonesia. Unfortunately, family caregivers typically are not prepared to make those challenging decisions. Therefore, we recommend not only that family caregivers need to be involved in the caring process, but also their issues and ethical dilemmas should be assessed and addressed by health care professionals, especially nurses, who have the most frequent contact with patient and family caregiver.

The importance of providing palliative care for patients with severe COVID-19 in Indonesia.

Patients with Coronavirus Disease 2019 (COVID-19), particularly those with a severe condition, might not survive. Pandemic situation challenges the healthcare providers in addressing palliative care to the patients. This paper aimed to describe the importance of providing palliative care for patients with severe COVID-19 in Indonesia. We used a case scenario to illustrate the common condition experienced by a patient with severe COVID-19. Health care providers in Indonesia could address palliative care for patients with COVID-19 by focusing on controlling the symptoms, avoiding futile intervention, and connecting the patients and their families. Nurses need to consider the patients' needs for family supports, even though not in physical or psychosocial support, and help the patients who need end-of-life care to be dying with dignity. Communication technology must be utilized optimally by healthcare providers to realize the communication among the patients, families, and health workers.

Measuring the Burden on Family Caregivers of People With Cancer: Cross-cultural Translation and Psychometric Testing of the Caregiver Reaction Assessment-Indonesian Version.

BACKGROUND: The Caregiver Reaction Assessment (CRA) is considered one of the well-developed instruments for measuring the multidimensional burden of family caregivers. To date, there is no available validated instrument to assist healthcare professionals in measuring the caregiver's burden in Indonesia. OBJECTIVE: To translate the CRA from English into Indonesian and to conduct psychometric testing of this CRA-Indonesian version (CRA-ID) with family caregivers of patients with cancer. METHODS: Cross-cultural translation and psychometric testing were conducted. Confirmatory factor analysis and exploratory factor analysis were performed to check, explore, and confirm the best model for the CRA-ID; internal consistency was also measured. RESULTS: A total of 451 respondents participated, of whom 40 were involved in the feasibility testing. Confirmatory factor analysis with the original factors of the CRA revealed that the fit was not satisfactory, and adaptation was needed. Through exploratory factor analysis, the best model fit was developed, and confirmatory factor analysis was performed again. Five factors from the original instrument were confirmed with an explained variance of 54.89%. Almost all items in the CRA-ID appeared to have a similar structure as the original version. Cronbach's α's ranged between .64 and .81. CONCLUSIONS: The CRA-ID appeared to be feasible, valid, and reliable for measuring the burden of family caregivers of patients with cancer in Indonesia. IMPLICATIONS FOR PRACTICE: Nurses can use the CRA-ID to measure family caregivers' burden. Its availability in the Indonesian language enhances the opportunity to conduct international comparisons of family caregiver burden using the same instrument.