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This scoping review aimed to identify the theory-based studies related to grief and bereavement in palliative care. The investigation was carried out by searching seven databases and conducting manual searches. The search procedure yielded 51 scholarly papers, which revealed 33 theories or models and 37 instruments. The theories and models can be classified into distinct categories, namely grief patterns and coping mechanisms. This study can be a valuable reference for future research endeavors, particularly those employing deductive methodologies. It offers guidance in selecting appropriate theories or models that can be applied to further studies.

Although medial temporal atrophy (MTA) and parietal atrophy (Koedam score) have been used to diagnose Alzheimer's disease (AD), early detection of other dementia types remains elusive. The study aims to investigate the association between these brain imaging markers and cognitive function in dementia. This cross-sectional study collected data from the Memory Clinic of Dr. Sardjito General Hospital Yogyakarta, Indonesia from January 2020 until December 2022. The cut-off value of MTA and Koedam score was set with Receiver Operating Curve. Multivariate analysis was performed to investigate the association between MTA and Koedam score with cognitive function. Of 61 patients, 22.95% had probable AD, 59.01% vascular dementia, and 18.03% mixed dementia. Correlation test showed that MTA and Koedam score were negatively associated with Montreal Cognitive Assessment-Indonesian Version (MoCA-INA) score. MTA score ≥ 3 (AUC 0.69) and Koedam score ≥ 2 (AUC 0.67) were independently associated with higher risk of poor cognitive function (OR 13.54, 95% CI 1.77-103.43, p = 0.01 and OR 5.52, 95% CI 1.08-28.19, p = 0.04). Higher MTA and Koedam score indicate worse cognitive function in dementia. Future study is needed to delineate these findings as prognostic markers of dementia severity., (© 2024. The Author(s).)

Aim: To explore the perception and lay understanding of sexual intercourse and sexual life experiences among infertile couples before, during, and after undergoing an assisted reproduction technology (ART) program., Method: The participants of this descriptive qualitative study were Indonesian couples with infertility who underwent an ART program. Semi-structured interviews were conducted between September and December 2022, and the participants' responses were recorded. Data were analyzed using a step-by-step analysis based on Braun's qualitative analysis. The study was reported based on the Consolidated Criteria for Reporting a Qualitative Research (COREQ) Checklist., Results: Fifty participants were included, and five themes were developed before and two themes during or after the ART program. The couples' knowledge varied as they experienced sexual intercourse at different periods, such as before, during, and after the ART program. Many participants reported that ART affected their emotions and mood, leading to decreased desire to engage in sexual intercourse. However, some used sexual intercourse as a basis for creating optimism and confidence in having offspring. Furthermore, couples perceived that the purpose of sexual intercourse is not only to have offspring but also to improve communication, promote intimacy, and express affection. In contrast, some perceived the ART program as time consuming, preventing them from engaging in sexual activities. However, not all couples considered sexual activity solely as a means of procreation. They concluded that sexual behavior is not only determined by genetics., Conclusion: Couples who underwent the ART program regardless of its effectiveness were aware that sexual interaction is not only for having children but also for preserving harmony and familial connection., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Authors.)

This study examines the impact of Islamic beliefs on the caregiving practices of individuals diagnosed with Parkinson's disease in Indonesia and New Zealand. The study sample comprised seventeen caregivers who participated in semi-structured interviews which were analysed using the method of inductive thematic analysis. The study delineated three overarching themes: value-driven caregiving, comprehensive care and caregivers strengthened by faith and practice. This study examined the practical applications of the Quran, Hadith and Muslim beliefs in caregiver experiences. Further research is necessary to enhance the support systems for Muslim caregivers in various circumstances, facilitating the advancement of solutions to contemporary social problems., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

The objective of this study was to translate the Ferrans and Powers Quality of Life Index (QLI) into the Indonesian language, considering its cultural and functional appropriateness, and to evaluate its psychometric properties by testing the reliability and validity. A committee approach was conducted to create the Indonesian version of the QLI (QLI-Id) and cognitive interviewing with 15 patients with cancer was conducted to identify potential problems or errors in answering the QLI-Id. A cross-sectional descriptive study was carried out using 236 responses to the QLI-Id questionnaire from patients with cancer; 62 of whom completed the same questionnaire twice within a 3-week interval to verify stability reliability. Confirmatory factor analysis results supported construct validity with model fit statistics for the original single-factor and four-factor structure of the QLI (corresponding to the QLI's total score and four subscale scores, respectively) with some rearrangement of the items within each subscale. Reliability for the total QLI-Id scale was supported by McDonald's Omega of 0.92 and the intraclass/intrasubject correlation coefficient at two time points of 0.86. The strong correlation between the QLI-Id total and the Satisfaction with Life Scale scores and the overall health/QOL domain of the EORTC QLQ-C30 (both r = 0.73) supported its construct validity. This study provides evidence for the reliability and validity of the QLI-Id as an instrument to measure the impact of cancer on the overall QOL of Indonesian patients., (© 2023 Wiley Periodicals LLC.)

The current cross-sectional study aimed to examine the relationship between social support, fear, and psychological distress among frontline nurses during the coronavirus disease 2019 (COVID-19) pandemic. Participants from 20 wards for adult patients from public and private hospitals in Indonesia were recruited. The Fear of COVID-19 Scale, Job Stress Scale, and Perceived Social Support Questionnaire were used to measure outcomes of interest. Questionnaires were completed by a total of 211 nurses. High risk working unit, higher fear score, younger age, less working experience, and less social support were significant influences on nurses' psychological distress. Social support as a modifiable factor is a potential target for intervention strategies to manage psychological issues among nurses. Findings can help policymakers and managers better understand how to support frontline nurses' psychological health and maintain well-engaged nursing staff. [ Journal of Psychosocial Nursing and Mental Health Services, 61 (5), 53-58.].

The number of patients with diabetes in Indonesia reach 19,47 million in 2021, mostly is caused by the adoption of sedentary and unhealthy lifestyles. Continuous self-management is important in diabetes care. It requires optimal coordination and communication between patients, families, and health care provider. The use of communication technology could be solution to the problem. This study aims to initiate an android-based mobile apps technology as a tool for patient, family, and healthcare provider to optimize patient with T2DM treatment. This study will be conducted in Public Health Centers (PHCs) in Yogyakarta using an exploratory sequential mixed-methods design which is divided into three phases. The first phase will use qualitative descriptive methods. Patients with T2DM, families, nurses, physicians and Health Social Security Agency officers in Indonesia will be involved in a focus group discussion (FGD) and in-depth interviews to understand their needs in optimizing the treatment. The second phase will be the development of an android-based application on the first phase results. The apps will be usability tested by involving experts (heuristic evaluation) and users (think aloud method) to ensure that the apps really meet targeted user's need. In the third phase, we will collect feedback from user after using this apps for three months. The effectiveness of the apps will be measured by self-management improvement and glycemic control of patients with T2DM. The non-equivalent control group design will be applied using a pre-repeated post-test control group. The result of this study will be an Android-based Application which will be called Integrated Diabetes Self-Management (IDSM) app to optimize the implementation of diabetes self-management which can improve glycemic control of patients with T2DM as one of the indicators of the Indonesian Chronic Disease Management Program at PHCs., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2022 Prihatin Putri et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Individuals' willingness to engage in advance care planning is influenced by factors such as culture and religious beliefs. While most studies on advance care planning in Asia have been performed in high-income countries, Indonesia is a lower-middle-income country, with a majority of strongly collectivist and religiously devout inhabitants. We studied the perspectives of Indonesian patients with cancer and family caregivers regarding advance care planning by first exploring their experiences with medical information-disclosure, decision-making, and advance care planning and how these experiences influence their perspectives on advance care planning., Methods: We conducted semi-structured interviews among 16 patients with cancer and 15 family caregivers in a national cancer center in Jakarta and a tertiary academic general hospital in Yogyakarta. We performed an inductive thematic analysis using open, axial, and selective coding. The rigor of the study was enhanced by reflective journaling, dual coding, and investigator triangulation., Results: Twenty-six of 31 participants were younger than 60 years old, 20 were Muslim and Javanese, and 17 were college or university graduates. Four major themes emerged as important in advance care planning: (1) participants' perceptions on the importance or harmfulness of cancer-related information, (2) the importance of communicating bad news sensitively (through empathetic, implicit, and mediated communication), (3) participants' motives for participating in medical decision-making (decision-making seen as patients' right or responsibility, or patients' state of dependency on others), and (4) the complexities of future planning (e.g., due to its irrelevance to participants' religious beliefs and/or their difficulties in seeing the relevance of future planning)., Conclusions: Culturally sensitive approaches to advance care planning in Indonesia should address the importance of facilitating open communication between patients and their families, and the various perspectives on information provision, bad news communication, and decision-making. Advance care planning should focus on the exploration of patients' values, rather than drafting treatment plans in advance., (© 2022. The Author(s).)

The provision of palliative care in the intensive care unit (ICU) is increasing. While some scholars have suggested the goals of palliative care to not be aligned with the ICU, some evidence show benefits of the integration. This review aimed to explore and synthesize research that identified barriers and facilitators in the provision of palliative care in the ICU. This review utilized Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review guidelines based on population, concept, and context. We searched for eligible studies in five electronic databases (Scopus, PubMed, ProQuest, Science Direct, and Sage) and included studies on the provision of palliative care (concept) in the ICU (context) that were published in English between 2005-2021. We describe the provision of palliative care in terms of barriers and facilitators. We also describe the study design and context. A total of 14 papers was included. Several barriers and facilitators in providing palliative care in the ICU were identified and include lack of capabilities, family boundaries, practical issues, cultural differences. Facilitators of the provision of palliative care in an ICU include greater experience and supportive behaviors, i.e., collaborations between health care professionals. This scoping review demonstrates the breadth of barriers and facilitators of palliative care in the ICU. Hospital management can consider findings of the current review to better integrate palliative care in the ICU.

This study aimed to identify the effects of pre-chemotherapy education with audio visual methods on the self-efficacy of symptom management in patients with cancer who received chemotherapy. The various side effects of chemotherapy could affect the self-efficacy of symptom management. Providing pre-chemotherapy education is important to improve the self-efficacy of symptom management. Nowadays, pre-chemotherapy education is only given by using print media, which can restrict transferring information to patients with cancer. This study was based on pre- and post-test, 2 group, quasi-experimental design. A total of 80 respondents were recruited with consecutive sampling between January and March 2019. Participants in the intervention group received video pre-chemotherapy education, while participants in the control group received education with a booklet (usual care). Patients completed self-efficacy symptom management questionnaires before and 1-2 weeks after chemotherapy. The analysis used the Wilcoxon and Mann-Whitney tests and by counting Cohen's d effect size. The mean scores of pre- and post-test self-efficacy of symptom management increased in the intervention group to 1.77 (p = 0.000) and in the control group to 0.64 (p = 0.001). The comparative test between the two groups showed p = 0.005 (p < 0.05) with an effect size of 0.4 (66%). This result indicates that pre-chemotherapy education had medium effect on the self-efficacy of symptom management. Pre-chemotherapy education with audio visual methods can increase the self-efficacy of symptom management in patients with cancer., (© 2021. American Association for Cancer Education.)

People with dementia (PWD) may exhibit symptoms that negatively affect their relationships with their families or friends which could cause social strain. The Negative Relationship Quality (NRQ) questionnaire can be used to measure social strain in PWD. There has never been an Indonesian adaptation of the NRQ. This preliminary study aimed to measure the validity and reliability of the NRQ among PWD in Indonesia (NRQ-INA). This study used a cross-sectional design. Forward−backward translation methods were conducted first. Pearson’s correlation and factor analysis were employed for the validity test. Cronbach’s alpha and test−retest were used to determine reliability. The NRQ-INA has four parallel items related to social strain that are divided into three subscales and asked to spouse/partner, family members, and friends, leading to a total of 12 questions. The results of validity testing from 60 respondents showed that all items in the NRQ-INA were strongly valid with correlation coefficients (r) of >0.8 (p < 0.01). Factor analysis showed a convergence with the variance explained of more than 50% for all items in each subscale, which also indicated that NRQ-INA had acceptable construct validity to measure social strain. Cronbach’s alpha values (α) were 0.926, 0.942, and 0.938 for the subscales of spouse, friends, and family members, respectively. The correlations of test−retest reliability for all items were >0.7 (p < 0.01), demonstrating a reliable NRQ-INA measurement. In conclusion, NRQ-INA had a good validity and reliability to measure social strain in PWD. Further study of the concurrent validity among PWD is still needed.

Background: Melanesians are indigenous Papuans racially and culturally different from most Indonesians. The Melanesia region is characterised by high poverty and inequalities, even though it has the highest revenue. Furthermore, Papua has the highest HIV prevalence rate, 24-fold higher than that of other regions. Therefore, this study aimed to examine the resistance of indigenous people residing in eastern Indonesia towards HIV programs., Methods: This is a qualitative study analysed using grounded theory. Data were collected from July to September 2018 through semi-structured face-to-face interviews involving 23 Papuans. The interviews were conducted in Bahasa Indonesia, audio-recorded, summarised and transcribed for analysis., Results: The results showed that being a good Papuan emerges from four interconnected categories, including culture and religion, dealing with modernisation, integrated HIV program and stigma reduction. As a substantive theory underpinning the indigenous people's experiences with HIV programs, 'Keep being a good Papuan' was a way of overcoming problems and dealing with modernism to eliminate HIV. This largely focuses on the local culture, implying any adjustment should keep their tradition and welcome modernism., Conclusions: The future of the HIV programs should be agreed upon, funded, implemented, measured and achieved by stakeholders. This could be achieved by elaborating a supportive culture and community-based interventions. Furthermore, the implementation should be prioritised to integrate and improve the programs' quality to take into account community needs and the available resources.

Background: Most studies on advance care planning in Asia originate in high-income Asian countries. Indonesia is a middle-income Asian country characterized by its religious devoutness and strong family ties. This study aims to explore the perspectives and experiences of Indonesian healthcare professionals on advance care planning for cancer patients., Methods: Focus-group discussions were conducted in July and August 2019 and were analysed using thematic content analysis enhanced by dual coding and exploration of divergent views. Purposive sampling of physicians and nurses actively engaged in cancer care in a national cancer centre and a national general hospital., Results: We included 16 physicians and 16 nurses. These participants were open to the idea of advance care planning. We further identified four aspects of this planning that the participants considered to be important: 1) the family's role in medical decision-making; 2) sensitivity to communication norms; 3) patients' and families' religious beliefs regarding the control and sanctity of life; and 4) the availability of a support system for advance care planning (healthcare professionals' education and training, public education, resource allocation, and formal regulation). Participants believed that, although family hierarchical structure and certain religious beliefs may complicate patients' engagement in advance care planning, a considerate approach to involving family and patients' religious perspectives in advance care planning may actually facilitate their engagement in it., Conclusion: Indonesian healthcare professionals believed that, for culturally congruent advance care planning in Indonesia, it was essential to respect the cultural aspects of collectivism, communication norms, and patients' religious beliefs., (© 2022. The Author(s).)

Background: Caring for children living with life-threatening and life-limiting illnesses can be challenging. Parents' roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC., Methods: This was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist., Results: Three main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers' hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House., Conclusions: Home-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times., (© 2022. The Author(s).)

Participatory action research (PAR) is a method of inquiry that promotes a collaborative approach to knowledge creation. This article examined areas of research interest that included PAR methods, highlighting the areas of improvement that such approaches might offer to researchers and scientists in the nursing field. Among the 20 included studies, participatory concepts are more likely used to direct research design than to select participants. About two-thirds of the studies reviewed used PAR principles in designing projects. Although only a few research collaborative efforts involved partners in selecting participants, 70% involved participants in data gathering. Participatory approaches to data processing and interpretation were found in over 60% of articles assessed across all content categories. Approximately half of the studies included suggestions for participatory implementation approaches; a quarter discussed participatory ways to disseminate results. The findings demonstrate how researchers are incorporating PAR principles into a variety of areas of nursing research. Promises to fully include participants and promises of reciprocal benefit are essential in order to pursue meaningful PAR., (© Copyright 2022 Creative Health Care Management.)

Background: In Indonesia, Non-Communicable Diseases (NCD) are a contributing factor to mortality with most cases involving heart disease, cancer, chronic lung disease and diabetes. Accordingly, the identification of palliative care needs is very important as a first step in providing palliative care for these patients with NCD. However, currently there is no national standardized tool nor guidance system for identifying palliative care needs of NCD patients in Indonesia. The Supportive and Palliative Care Indicators Tool (SPICT) has been used worldwide for screening palliative care needs. This study aimed to identify palliative care needs in NCD patients using the SPICT tool., Methods: This descriptive study used a cross-sectional design. Sampling technique used convenience sampling with a total sample of 124 adult patients with NCD in Dr. Sardjito Hospital Yogyakarta. Data collection used the Indonesian version of the SPICT. Data analyses used descriptive statistics and chi-square tests with p < 0,05 set as significant. Additionally, the prevalence of patients requiring palliative care was also calculated., Results: The patients with NCD requiring palliative care who were screened using the SPICT tool were 61.3%. The nurses identified only 17.7%, while the physicians identified only 9.7%. The overall agreement of the clinician's assessments to the researchers was < 32%. Meanwhile, agreement with nurses was 31 and 25% with the physicians., Conclusions: These results highlight that by using the SPICT tool, recognition of hospitalized patients with NCD needing palliative care increased from 10 to 18% to > 61%. The Indonesian version of the SPICT tool can help the clinicians to reach meet agreement in identifying hospitalized patients who need palliative care as the first step in addressing palliative interventions for patients with NCD. It can provide several benefits in screening patients with NCD from the beginning of diagnosis., (© 2022. The Author(s).)

Introduction: Piper crocatum Ruiz & Pav (P. crocatum) has been reported to accelerate the diabetic wound healing process empirically. Some studies showed the benefits of P. crocatum in treating various diseases but its mechanisms in diabetic wound healing have never been reported. In the present study we investigated the diabetic wound healing activity of the active fraction of P. crocatum on wounded hyperglycemia fibroblasts (wHFs)., Methods: Bioassay-guided fractionation was performed to get the most active fraction. The selected active fraction was applied to wHFs within 72 h incubation. Mimicking a diabetic condition was done using basal glucose media containing an additional 17 mMol/L D-glucose. A wound was simulated via the scratch assay. The collagen deposition was measured using Picro-Sirius Red and wound closure was measured using scratch wound assay. Underlying mechanisms through p53, αSMA, SOD1 and E-cadherin were measured using western blotting., Results: We reported that F IV is the most active fraction of P. crocatum. We confirmed that F IV \ (7.81 µg/ml, 15.62 µg/ml, 31.25 µg/ml, 62.5 µg/ml, and 125 µg/ml) induced the collagen deposition and wound closure of wHFs. Furthermore, F IV treatment (7.81 µg/ml, 15.62 µg/ml, 31.25 µg/ml) down-regulated the protein expression level of p53 and up-regulated the protein expression levels of αSMA, E-cadherin, and SOD1., Discussion/conclusions: Our findings suggest that ameliorating collagen deposition and wound closure through protein regulation of p53, αSMA, E-cadherin, and SOD1 are some of the mechanisms by which F IV of P. crocatum is involved in diabetic wound healing therapy., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2021 The Author(s).)

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., Competing Interests: None declared., (© The Author(s) 2021.)

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., Competing Interests: None declared., (© The Author(s) 2021.)

Aim: The study is aimed to perform a cross-cultural adaptation of the palliative care quiz for nurses in an Indonesian context to evaluate its psychometric properties., Methods: A two-phase design was used in this study, including cross-cultural adaptation and psychometric testing. The PCQN-I was tested on a convenience sample of health-care providers recruited from 20 primary health-care (PHC) centers in Yogyakarta, Indonesia, from July to October 2017., Results: The cross-cultural adaptation ultimately resulted in a total of 20 items from the PCQN-I. An expert committee revised the words in Item 4 from "adjuvant therapies" to "adjuvant therapies/additional therapies," in Item 5 from "bowel regimen" to "gastrointestinal therapies," and Item 16 from "Demerol" to "Pethidine" based on the Indonesian context. The experts retained Item 5 "It is crucial for family members to remain at the bedside until death occurs," although none of the participants ( n = 40) involved in the pilot testing could answer it correctly, and Item 19 "The loss of a distant or contentious relationship is easier to resolve than the loss of one that is close or intimate" although few participants responded correctly. A total of 150 health-care providers consisting of 100 nurses and 50 physicians were involved in the psychometric testing. The scale-level content validity index/Ave of the PCQN-I was 97 and 93 in terms of its relevancy and clarity, respectively. The reliability was calculated as the Kuder-Richardson formula 20 score was 0.71., Conclusions: The PCQN-I is a valid and reliable instrument for assessing palliative care knowledge among PHC providers. Further research is warranted to examine its reliability in different clinical settings., Competing Interests: There are no conflicts of interest., (Copyright: © 2021 Indian Journal of Palliative Care.)

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.

Objective: The aim of the study was to explore the experiences of Papuans living with HIV to take antiretroviral therapy (ART) from the patient and the healthcare providers (HCPs) perspective., Design: This was a qualitative study covering all five tribes located in Papua Provinces one of two Indonesian provinces on Papua Island. Semistructured interviews were conducted with Papuans living with HIV and their HCPs. Interviews were transcribed verbatim and coded to find themes., Results: Overall, we conducted interviews with 13 Papuans living with HIV (mean age: 33 years, 61% female) and 14 HCPs (mean age: 42 years, 64% female) within five customary areas. HCPs included three physicians, nine nurses, two others. Two main themes were identified: (1) personal factors and (2) healthcare environment-related factors. Personal factors were beliefs and knowledge of ART, stigma from family, community and HCPs as well as practical problems such as transportation because of long distance. Within the theme of healthcare environment, the competences and attitudes of HCPs were particularly relevant. The findings are important in refining HIV treatment strategies implemented in Papua, especially when extending HIV care provided by community centres., Conclusions: Despite free access to ART, Papuans living with HIV struggle to remain on treatment. Considering local culture and religion in strategies to reduce stigma should be a priority., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

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.

Background: Assessing the quality of health services provided at home (home care) is a challenge. The formulation of indicators requires open-minded people, who able to formulate several purposes objectively, and play an active role in decision making., Aim: To test the face validity of the home care quality indicator in stroke patients with the modified Delphi method., Methods: Eighty-one indicators generated from previous studies were assessed using 3 processes to get the final results: 1) conducted modified Delphi in two rounds, namely rating or scoring by experts (using median scores); 2) reviewing qualitative suggestions from experts during the Delphi process (using comments from both Delphi rounds); 3) sorting out and correcting the grammar of the appropriate indicator (based on the median score > 7, and no disagreement)., Results: Eighty-seven experts were involved in the first round Delphi and 34 experts in the second round. The experts were home care team selected from health care institutions in Yogyakarta with various professional backgrounds. Delphi process resulted in 67 indicators from 81 indicators which were divided into 10 domains: 1) Personal (2 indicators), 2) Documents (13 indicators), 3) Professionalism development (3 indicators), 4) Supporting facilities (8 indicators), 5) Administrative activities (4 indicators), 6) Health workers interaction with patients and families (15 indicators), 7) Physical conditions (2 indicators), 8) Self-actualization (1 indicator), 9) Psychological condition (5 indicators), 10) Family independent and coping (14 indicators). Selected indicators got to score more than 7 and no disagreement at all., Conclusion: Sixty-seven indicators of the quality of home care, which were generated from modified Delphi consensus, were face validated. Further research could be conducted particularly on the trial process of these indicators at the actual home dwelling service setting.

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.

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.

Background: A communication guideline that is sensitive to the local culture is influential in the process of nursing care. The Gadjah Mada nurse-client communication guideline, the "Ready-Greet-Invite-Discuss," was meant (1) to strengthen the relationship between the nurse and the client despite of socio-culturally hierarchical gap between health providers and clients in Indonesian context, (2) to provide attention to the unspoken concerns especially in the context of indirect communication which mostly using non-verbal signs and politeness etiquettes, and (3) to initiate dialog in the society which hold a more community-oriented decision making., Objective: Our aim is to compare the communication skills of nursing students who had and had not received a training using a culture-sensitive Gadjah Mada nurse-client communication guideline., Methods: This was a quasi experimental randomized control study to the fifth semester students of a nursing school at Yogyakarta, Indonesia. The intervention group was trained by the Gadjah Mada nurse-client communication guideline. Both intervention and the control group had learned general nurse-client communication guidelines. The training was 4h with role-plays, supportive information and feedback sessions. An objective-structured clinical examination (OSCE) was conducted 1week after the training, in seven stations, with seven simulated clients. Observers judged the communication skills of the students using a checklist of 5-point Likert scale, whereas simulated clients judged their satisfaction using 4-point Likert scale represented in colorful ribbons., Results: There were significant mean differences in each domain of communication guideline observed between the trained and the control groups as judged by the teachers (p≤0.05) and simulated clients., Conclusions: Training using a culture-sensitive communication skills guideline could improve the communication skills of the nursing students and may increase satisfaction of the clients., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Background: Patients with advanced cancer experience problems and unmet needs. However, we assume that patients with advanced cancer will have more problems and unmet needs in a country with a lower economic status than in an economically stronger country. We studied whether patients with advanced cancer in Indonesia have more problems and unmet needs than a similar group of patients in the Netherlands., Methods: We performed a cross-sectional survey. We compared the data for 180 Indonesian and 94 Dutch patients relating to 24 items of the Problems and Needs in Palliative Care-short version questionnaire. We performed descriptive and χ(2) analysis with Bonferroni correction., Results: The prevalence of most physical problems, including pain, was similar in the 2 groups. In Indonesia, financial problems were the most common: 70 to 80% vs. 30 to 42% in the Netherlands. In Indonesia, 25 to 50% of the patients reported psychological and autonomy problems versus 55 to 86% in the Netherlands. The Indonesian group had many more unmet needs for each problem (> 54%) than the Dutch group (< 35%)., Conclusion: Apparently, economic and cultural differences hardly influence physical problems. Nonetheless, fewer Indonesian patients reported psychological and autonomy problems than Dutch patients. This difference contradicts our hypothesis. However, we found more unmet needs for professional attention in Indonesia than in the Netherlands, which is compatible with our hypothesis. These simple comparative data provide interesting insights into problems and unmet needs and give rise to our new hypothesis about cultural influences. This hypothesis should be studied in more depth., (© 2014 World Institute of Pain.)

Objective: Patients with cancer often face physical, psychological, social, spiritual, and emotional symptoms. Our aim was to study symptoms and issues of hospitalized patients with cancer in Indonesia, a country with strong family ties, and how family members, nurses, and physicians deal with them., Methods: In 2011, 150 hospitalized cancer patients in 3 general hospitals in Indonesia were invited to fill in a questionnaire, which was based on the validated Problems and Needs of Palliative Care (short version) questionnaire. Descriptive statistics were performed., Results: Of 119 patients (79%) who completed the questionnaire, 85% stated that their symptoms and issues were addressed. According to these patients, financial (56%), autonomy (36%), and psychosocial (34%) issues were most often addressed by the family alone. Physical symptoms (52%) and spiritual issues (33%) were addressed mainly by a combination of family, nurses, and physicians., Conclusions: Hospitalized patients with cancer in Indonesia felt that most of their symptoms and issues had been addressed, and the family was highly involved. The strong family ties in Indonesian culture may have contributed to this family role. More research is needed to clarify how this influences patient outcome, quality of care, and quality of life of both the patients and their families, along with the degree of partnership between families and professionals. This information might help answer the question what advantages and disadvantages the family role in caring for a hospitalized patient with cancer generates for the patient, the family, and professional caregivers., (© 2014 World Institute of Pain.)

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 (β = 0.374; p = 0.000), younger age (β = -0.282; p = 0.003), no previous caring experience (β = -0.301; p = 0.001), and not being the spouse (β = -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., (Copyright © 2014 John Wiley & Sons, Ltd.)

Purpose: Quality indicators (QIs) for the organization of palliative care (PC) can contribute to quality improvement as they assess the key elements for adequate organization of care. They might differ between health care organization, cultures and economic resources. The aim of this study was face-validate an Indonesian set of QIs based on a European set, to compare the two sets of QIs and to test the applicability of Indonesian set., Methods: A modified two-round RAND Delphi process was conducted in Indonesia. Twenty-four health care professionals from different disciplines were invited as panellists to rate clarity and usefulness of 98 QIs. Next, a applicability pilot test took place in five hospitals., Results: A total of 21 panellists considered 76 QIs (78 %) face-valid and added two new ones. Of the QIs with the highest ratings, eight were evaluated by head nurses and two by reviewing 50 patient records. Each QI was met by at least two hospitals, and only one by all five. Regarding the two QIs on structured clinical record keeping, most medical records contained multidimensional aspects of care., Conclusions: We found that most QIs for the organization of PC developed for European countries were also considered face-valid for Indonesian hospitals. The top 10 QIs were applicable in Indonesia. This suggests that most of the organizational QIs are universal rather than country specific. The Indonesian set of QIs should be considered as a first step in developing, testing, and implementing a set of QIs for PC in Indonesia. We recommend validation in other Asian regions.