AIMS: This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients and/or families for end-of-life care in Muslim-majority countries.
DESIGN: Systematic review.
DATA SOURCES: PsychINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials, PubMed, Applied Social Sciences Index and Abstracts (ASSIA), Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and gray literature was included. Qualitative studies analyzed using thematic analysis and quantitative component provided triangulation.
RESULTS: The initial search yielded n = 5098 articles, of which n = 30 met the inclusion criteria. A total of 5342 participants (4345 patients; 81.3%) were included; 97.6% had advanced cancer. Most (n = 22) studies were quantitative. Three themes and subthemes from qualitative studies were identified using thematic analysis: selflessness (burden to others and caregiver responsibilities), ambivalence (hope and hopelessness), and strong beliefs in Islam (beliefs in death and afterlife and closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families.
CONCLUSION: Despite the scarce evidence of relatively low quality, the analysis revealed core themes. To achieve palliative care for all in line with the total pain model, beliefs must be identified and understood in relation to decision-making processes and practices.
OBJECTIVE: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused.
DESIGN AND SETTING: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused.
RESULTS: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations.
CONCLUSION: Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.
BACKGROUND: Often, dying patients and their families receive their care from general nurses. The quality of end-of-life care in hospital wards is inadequate.
METHOD: A self-administered questionnaire was completed by 553 nurses working in a tertiary teaching hospital in Malaysia.
RESULTS: The barrier with the highest mean score was "dealing with distressed family members." The facilitator with the highest mean score was "providing a peaceful and dignified bedside scene for the family once the patient has died." With regard to barrier and facilitator categories, the barrier category with the highest total mean score was patient-related barriers and the facilitator category with the highest total mean score concerned facilitators related to healthcare professionals. In the multivariate analysis, age, patient family-related barriers and healthcare professional-related facilitators significantly predict the quality of end-of-life care.
CONCLUSION: The results of this study suggest that there is an urgent need to overcome barriers related to the patient and family members that hinder the quality of care provided for dying patients, as well as to enhance and implement the facilitators related to healthcare providers. In addition, there is also a need to enhance the quality of end-of-life care provided by younger nurses through end-of-life care courses and training.
RELEVANCE TO CLINICAL PRACTICE: Helping nurses overcome barriers and implement facilitators may lead to enhanced quality of care provided for dying patients.
BACKGROUND: With increasing demand for hospitals to provide end-of-life care, the low quality of palliative care provided in hospital settings is an issue of growing concern in developing countries. Most dying patients receive their care from general nurses, irrespective of the nurses' specialty or level of training.
METHOD: A structured cross-sectional questionnaire survey was conducted of 553 nurses working at a teaching hospital in Malaysia.
RESULTS: The mean scores for nurses' knowledge about end-of-life care, their attitudes towards end-of-life care and the perceived quality of end-of-life care were low. The factors identified as significantly associated with the quality of end-of-life care were nurses' levels of knowledge and their attitudes towards end-of-life care.
DISCUSSION: Factors that contributed to the low quality of end-of-life care were inadequate knowledge and negative attitudes. These findings may reflect that end-of-life care education is not well integrated into nursing education.
CONCLUSION: The findings of this study suggest that there is a need to increase the nurses' level of knowledge and improve their attitude towards end-of-life care in order to enhance the quality of care provided to dying patients.
IMPLICATIONS FOR NURSING AND HEALTH POLICY: Nurse managers and hospital policymakers should develop strategies to enhance nurses' level of knowledge, as well as providing adequate emotional support for nurses who care for dying patients and their families. Nurses should be proactive in increasing their knowledge and adopting more positive attitudes towards end-of-life care.
Objective: This study aimed to develop and validate the questionnaire on end-of-life care knowledge, perceptions, and preferences among hemodialysis (HD) patients.
Subject and Methods: A cross-sectional study was conducted among 92 HD patients from 14 centers. It involved four phases including (i) developing the questionnaire and pretesting, (ii) improving and editing and redistribution to respondents for the pilot study, (iii) factor analysis (FA), and (iv) internal consistency reliability testing.
Results: The result of FA with varimax rotation performed identified three domains for the 41 items, with 10-20 items in each domain. All the 41 analyzed items had a good factor loading of more than 0.4 with the lowest value of 0.421 and were nicely fit into three respective domains: knowledge, perceptions, and preferences. Internal consistency reliability analysis Cronbach's α values were between 0.5 and 0.7 for all domains, higher than the level set for this study (0.5).
Conclusion: The questionnaire was successfully validated and considered a useful tool in describing ESRD patients' end-of-life care knowledge, perceptions, and preferences.