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Paediatric palliative care in the Asia Pacific region: where are we now?

Chong PH, Hamsah E, Goh C

BMJ Support Palliat Care, 2017 Mar;7(1):17-22.
PMID: 26338851 DOI: 10.1136/bmjspcare-2014-000812

Paediatric palliative care services have increased both in numbers and capacity around the world in response to the needs of children living with life-limiting conditions. Members of the Asia Pacific Hospice Network, who render care to children, have increasingly realised the need to map existing services for enhanced collaborative, educational and advocacy efforts. An online survey was conducted over 2 months among professionals in the region to document current service provision, and at the same time to explore individual training needs and practice challenges. A questionnaire crafted through consensus by members of a new special interest group within the network was used to collect data. 59 distinct responses from 16 countries were obtained to build a directory, which has already been circulated. Content analyses of narrative responses yield further findings. Half of these services catered to adults as well as to children. Staffing and service provision varied across the region but most members worked in teams consisting of multidisciplinary professionals. Numerous service and funding models were found, reflecting wide differences in local conditions and responses to diverse patient populations unique to paediatric palliative care. The highest training needs centred around bereavement and spiritual care. Capacity and funding issues were expected, but significant lack of support by paediatricians was found to be alarming and warrants further study. Amid the heterogeneity, these services share common struggles and face similar needs. Identifying individual profiles of different services potentially helps to draw everyone together, towards a common vision, and towards creating opportunities for sharing of expertise and experience.

Matched MeSH terms: Palliative Care/standards
Fulltext Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study

Ahmad Zubaidi ZS, Ariffin F, Oun CTC, Katiman D

BMC Palliat Care, 2020 Dec 08;19(1):186.
PMID: 33292214 DOI: 10.1186/s12904-020-00691-1

BACKGROUND: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia.
METHODS: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis.
RESULT: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden.
CONCLUSION: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.

Matched MeSH terms: Palliative Care/standards
Fulltext The experiences of suffering of end-stage renal failure patients in Malaysia: a thematic analysis

Beng TS, Yun LA, Yi LX, Yan LH, Peng NK, Kun LS, et al.

Ann Palliat Med, 2019 Sep;8(4):401-410.
PMID: 30943744 DOI: 10.21037/apm.2019.03.04

BACKGROUND: The population of end-stage renal failure (ESRF) receiving dialysis treatment is increasing worldwide. For most patients with ESRF, dialysis can extend their life. However, treatment can be demanding and time-consuming. Despite dialysis treatment, many patients continue to experience various sufferings.
METHODS: A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering of ESRF patients on maintenance dialysis in Malaysia. The results were thematically analyzed.
RESULTS: Nineteen ESRF patients were interviewed. The themes and subthemes were: (I) physical suffering-physical symptoms and functional limitations, (II) psychological suffering-the emotions and thoughts of suffering, (III) social suffering-healthcare-related suffering and burdening of others and (IV) spiritual suffering-the queries of suffering.
CONCLUSIONS: These findings may help healthcare professionals to fill in the gaps in the delivery of best renal palliative care.

Matched MeSH terms: Palliative Care/standards
Optimisation of the continuum of supportive and palliative care for patients with breast cancer in low-income and middle-income countries: executive summary of the Breast Health Global Initiative, 2014

Distelhorst SR, Cleary JF, Ganz PA, Bese N, Camacho-Rodriguez R, Cardoso F, et al.

Lancet Oncol, 2015 Mar;16(3):e137-47.
PMID: 25752564 DOI: 10.1016/S1470-2045(14)70457-7

Supportive care and palliative care are now recognised as critical components of global cancer control programmes. Many aspects of supportive and palliative care services are already available in some low-income and middle-income countries. Full integration of supportive and palliative care into breast cancer programmes requires a systematic, resource-stratified approach. The Breast Health Global Initiative convened three expert panels to develop resource allocation recommendations for supportive and palliative care programmes in low-income and middle-income countries. Each panel focused on a specific phase of breast cancer care: during treatment, after treatment with curative intent (survivorship), and after diagnosis with metastatic disease. The panel consensus statements were published in October, 2013. This Executive Summary combines the three panels' recommendations into a single comprehensive document covering breast cancer care from diagnosis through curative treatment into survivorship, and metastatic disease and end-of-life care. The recommendations cover physical symptom management, pain management, monitoring and documentation, psychosocial and spiritual aspects of care, health professional education, and patient, family, and caregiver education.

Matched MeSH terms: Palliative Care/standards*
Fulltext Palliative care in Malaysia: a decade of progress and going strong

Lim RBL

J Pain Palliat Care Pharmacother, 2003;17(3-4):77-85; discussion 87-9.
PMID: 15022953 DOI: 10.1080/j354v17n03_11

Palliative care first began in Malaysia in 1991, and since then there has been a growing interest in the field and its development both from the government and nongovernmental organizations. It is important to recognize the potential advantages and disadvantages of palliative care provided by both government and private programs to maximize development for the greater benefit of patients. A close relationship between these two bodies must be created so that there is smooth continuity of service and no overlapping of roles. This article highlights some thoughts on how palliative care has developed over the years from the perspective of a clinician who is currently working in the government sector and cooperating with nongovernmental organizations to develop a palliative care network in the region.

Matched MeSH terms: Palliative Care/standards