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Background and Objectives: The proactive activities of professional organizations have significantly contributed to improving nurses' knowledge related-specialty in order to improve health care services quality offered by nurses. Since the palliative care improvement and development in Indonesia remain still in their infancy, and the organization of palliative care for Indonesian nurses has not been established yet, it is imperative to investigate the Indonesian nurses' viewpoints concerning the importance of establishing a palliative nursing organization in fostering palliative care services in Indonesia. This study aimed to identify what kind of palliative care related activities are carried out by Indonesian nurses and what are the perspectives of nurses regarding the importance of establishing palliative nursing organizations in Indonesia. Materials and Methods: A national study was conducted using an embedded mixed-methods design, for which the quantitative and qualitative data were collected and analyzed in the same time period from October - December 2020. Results: There were a total of 552 (92%) respondents who participated through WhatsApp, and Telegram platforms, and completed our online survey. There were four themes and nine sub themes found in this study: namely, services improvement (quality improvement, and literacy improvement sub themes), human resource development (knowledge development, individual nurse development, and professional development sub-themes), boarding and information source (boarding, and information source sub themes), and policy and legality (policy, and legality sub themes). Conclusion: While barriers exist, respondents confirmed the importance of establishing an Indonesian palliative nursing organization. Establishing a palliative nursing organization could be an important step in developing palliative care in Indonesia. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Although the concept of 'cancer-related problems' is complex, few studies compare nurses' and caregivers' perspectives on cancer-related problems, particularly in eastern cultures. The study aimed to identify the perceptions of patients and nurses concerning to what extent the problems of patients with cancer were assessed and addressed during hospitalization in Indonesia. A descriptive correlational study with cross-sectional comparisons was conducted in three major cities in Indonesia. With a convenience sample of 119 patients (response rate = 79.3%) with cancer and 147 nurses (response rate = 71%). The domains of validated Problems and Needs of Palliative Care – short version were used to measure the perceptions of the patients and nurses regarding the assessing and addressing of patients' problems. The patients stated that their physical and psychological problems were very often assessed (>84%) and addressed (>90%). Patients who reported difficulties spontaneously had a lower prevalence of problems than patients who reported problems to a professional, except for the psychological subscale (P-value 0.05). The open assessment reported that the problems exhibited lower frequency than structure assessment, while nurses addressed all sub-scale problems (P-value < 0.005). Patients' educational status, age, gender, and time of diagnosis had positive correlations with their perceptions of cancer-related problems, which they voluntarily stated. These findings indicate essential similarities and incongruities between patients with cancer and nurses perceive cancer-related problems. The results highlight the complex technical directions of cancer nursing care in Indonesia. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]