OBJECTIVE: This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.
METHODS: 12 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.
RESULTS: Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.
CONCLUSIONS: MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.
OBJECTIVE: To study the efficacy of 5 minutes of mindful breathing (MB) for rapid reduction of distress in a palliative setting. Its effect to the physiological changes of the palliative cancer patients was also examined.
METHODS: This is a randomized controlled trial. Sixty palliative cancer patients were recruited. They were randomly assigned to either 5 minutes of MB or normal listening arms. The changes of perceived distress, blood pressure, pulse rate, breathing rate, galvanic skin response, and skin surface temperature of the patients were measured at baseline, after intervention, and 10 minutes post-intervention.
RESULTS: There was significant reduction of perceived distress, blood pressure, pulse rate, breathing rate, and galvanic skin response; also, significant increment of skin surface temperature in the 5-minute MB group. The changes in the 5-minute breathing group were significantly higher than the normal listening group.
CONCLUSION: Five-minute MB is a quick, easy to administer, and effective therapy for rapid reduction of distress in palliative setting. There is a need for future study to establish the long-term efficacy of the therapy.
OBJECTIVE: The objective of the study is to assess the psychometric properties of the Suffering Pictogram, a new suffering assessment instrument on a population of palliative care patients.
DESIGN AND SETTING: This is a validation study conducted at University of Malaya Medical Centre, Kuala Lumpur, Malaysia. Ninety one palliative care patients were recruited. Patients were interviewed with the Suffering Pictogram and FACIT-Sp.
RESULTS: The median completion time for the Suffering Pictogram was five minutes. The Suffering Pictogram showed good internal consistency, with a Cronbach's alpha of 0.836. The total scores of the Suffering Pictogram correlated strongly and negatively with FACIT-Sp total score (Spearman's Rho = -0.625, p care. The instrument can be used as a screening tool to detect suffering directly.
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.
PURPOSE: To explore the experiences of hope of palliative care patients.
METHODS: A qualitative study was conducted at University of Malaya, Kuala Lumpur, Malaysia. Adult palliative care in-patients were recruited and interviewed with semi structured questions on hope. Transcripts from the interviews were thematically analyzed with qualitative data management software NVIVO.
FINDINGS: 20 palliative care patients participated in the study. The themes generated from thematic analysis were (1) The notions of hope, (2) The sources and barriers of hope and (3) The contents of hope.
CONCLUSION: Hope is an ever-present source of energy that gives people strength to carry on even in the most adverse situations. Understanding hope from the palliative care perspective may allow healthcare providers to develop strategies to better foster hope in the terminally ill.
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.