Relationship between perceived social support and mental health status of the advanced cancer patients receiving palliative care in Bangladesh.

Background: Cancer patients experience significant changes in their social roles along with various physical and psychological challenges. Despite the growing recognition of the importance of palliative care in Bangladesh, there is a notable gap in research focusing on the psychosocial issues faced by patients with advanced cancer. Aim: This study aims to explore the level of social support perceived by Bangladeshi cancer patients and determine how this support relates to their mental health status. Methods: This cross-sectional study was conducted among 115 advanced cancer (stages III and IV) patients admitted to the palliative medicine department of a tertiary care hospital in Bangladesh. Perceived social support was measured by the Multidimensional Scale of Perceived Social Support, and the mental health status of the patients was assessed by Depression, Anxiety, and Stress Scale-21. Data collection was done from June to November 2023. Relationships between perceived social support, depression, anxiety, and stress were assessed by the Spearman correlation test. The moderating effect of perceived social support on patients' mental health variables was determined by multiple linear regression and simple slope analysis. p Value <0.05 was considered to be statistically significant. Result: The study included an almost equal number of male (49.6%) and female (50.4%) patients, with a mean age of 50.7 ± 14.4 years. Overall, perceived social support was moderate to high for most (74.7%) of the participants. Among the participants, 78.3% experienced anxiety, 77.4% suffered from depression, and 70.5% experienced stress. Depression, anxiety, and stress were all negatively and significantly (p < 0.05) correlated with perceived social support. Younger patients reported higher levels of anxiety, stress, and depression. Perceived social support had a significant buffering effect on depression and anxiety among the younger patients. Conclusion: Perceived social support has a profound and significant effect on the mental health of advanced cancer patients. Integrating psychosocial support early in palliative care can be highly beneficial to the mental health of these patients.

Social support and mental health of cancer patients This cross-sectional study was conducted among 115 patients with advanced cancer (stages III and IV) admitted to the palliative medicine department of a tertiary care hospital in Bangladesh. The majority of the patients with advanced cancer suffer from depression and anxiety and experience high level of stress. Younger patients report more of these psychological issues. High level of perceived social support is associated with lower levels of depression, anxiety, and stress. It acts as a buffer against these negative emotions. Patients who experienced a high level of social support while dealing with physical pain reported less depression.

Validation of Bengali version of Edmonton Symptom Assessment Scale-Revised (ESAS-r Bengali): A multidimensional symptom assessment tool for patients with advanced incurable diseases receiving palliative care.

Objective: Routine symptom assessment represents the cornerstone of symptom management of patients with advanced incurable diseases in palliative care. At present, there is no validated tool to assess symptoms among the Bengali-speaking population with incurable diseases. The aim of the study is to translate, culturally adapt, and validate the Edmonton Symptom Assessment Scale (Revised) into Bengali language. Methods: The study was conducted in two phases. Forward and backward translations of the English version of the Edmonton Symptom Assessment Scale (Revised) into Bengali were conducted by four independent translators. After obtaining reviews from an expert committee, pre-testing and cognitive debriefing the Bengali version of the tool was finalized. The final validation was conducted among 110 patients admitted to the Palliative Medicine Department of Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh. Validity (content, face, and construct validity) and reliability (internal consistency) were assessed in the final validation phase. Result: All participants responded to all items. Seventy percent of the participants completely understood all questions but 30% had difficulty with three questions. The expert committee expressed their satisfaction regarding the face and content validity of the questionnaire. The Bengali version also had high reliability (α = 0.862). Principal component analysis with the distribution of varimax rotation of Edmonton Symptom Assessment Scale (Revised) Bengali ranged from 0.41 to 0.83. Conclusion: After the translation and cross-cultural adaptation, the Bengali version of the Edmonton Symptom Assessment Scale (Revised) achieved good levels of validity and reliability. It can be used as a symptom assessment tool for Bengali speaking population receiving palliative care.

Impact of Community Palliative Care on Quality of Life among Cancer Patients in Bangladesh.

Cancer, a leading cause of mortality worldwide, is often diagnosed at late stages in low- and middle-income countries, resulting in preventable suffering. When added to standard oncological care, palliative care may improve the quality of life (QOL) of these patients. A longitudinal observational study was conducted from January 2020 to December 2021. Thirty-nine cancer patients were enrolled in the Compassionate Narayanganj community palliative care group (NPC), where they received comprehensive palliative care in addition to oncological care. Thirty-one patients from the Dept. of Oncology (DO) at BSMMU received standard oncological care. In contrast to the DO group, the NPC group had a higher percentage of female patients, was older, and had slightly higher levels of education. At 10 to 14 weeks follow-up, a significant improvement in overall QOL was observed in the NPC group (p = 0.007), as well as in the psychological (p = 0.003), social (p = 0.002), and environmental domains (p = 0.15). Among the secondary outcomes, the palliative care group had reduced disability and neuropathic pain scores. Additionally, there were statistically significant reductions in pain, drowsiness, and shortness of breath, as well as an improvement in general wellbeing, based on the results of the Edmonton Symptom Assessment Scale-Revised. At the community level in Bangladesh, increased access to palliative care may improve cancer patient outcomes such as QOL and symptom burden.

Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh.

Background: Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been described in resource limited settings, suggesting a simple and low-cost approach to providing palliative care. The implementation of community-based palliative care for children has not previously been described. Context: This community case study describes the implementation of an innovative model of community-based palliative care program in and urban informal settlement, (Korail Slum, Bangladesh). The program is led by a local government hospital, with experience in community-based palliative care, in partnership with the local community. Problem: Children with serious conditions in an urban unformal settlement do not have access to health services which address their medical, psychosocial and spiritual needs. This gap leads to a significant burden of preventable suffering for them and their families. Solution: A community-based palliative care program was implemented, which includes home care by trained community health workers, with support and supervision from palliative care nurses and physicians. The program's objective is to provide effective symptom management, clear communication about the child's condition with parents, and psychosocial support including support for basic needs. The program was free for families including medications, medical equipment, physiotherapy, and speech therapy. The program was monitored through regular assessments of quality of life using standardized tools (PedsQL Family Impact Module), as well as interviews and focus group discussions. Conclusion and lessons learned: A model of community-based palliative care for children can be implemented in an urban informal settlement. Program effectiveness is enhanced by community health workers who share language, culture, and life-experiences with the individuals they serve. Partnerships with local health care facilities and community groups strengthen the program's sustainability. Ensuring financial sustainability remains a challenge.

Coping strategy among the women with metastatic breast cancer attending a palliative care unit of a tertiary care hospital of Bangladesh.

BACKGROUND: Breast cancer is one of the leading cancers among the Bangladeshi women. Coping helps these patients to adjust with this life-changing disease. Each individual has unique and different coping mechanism. But we know a little regarding their coping strategies. This study aims to explore the different coping strategies adopted by the women with metastatic (stage IV) breast cancer attending the palliative care unit and their relationship with the common mental health issues like anxiety and depression. METHODS: This cross-sectional study was conducted among 95 patients with metastatic (stage IV) breast cancer attending the Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Bangladesh from April 2021 to September 2021. Data was collected by face-to-face interview using a structured questionnaire adapted from Hospital Depression and Anxiety Scale (HADS), Brief COPE inventory and Eastern Cooperative Oncology Group (ECOG) performance scale. Pearson correlation test was used to find the relationships between various domains of coping strategies and psychological variables. Correlation matrix was done to observe the internal correlation among different coping strategies. Kruskal-Wallis H test was done to find the relationship between different coping strategies and ECOG performance status. RESULT: The mean age of the respondents was 48.9 ± 9.9 years. Most of them were married (94.7%), Muslim (92.6%) and homemakers (82.1%). Commonly used coping strategies by the patients were: acceptance (median 10; IQR 10), religion (median 9; IQR 8-10) and instrumental support (median 9; IQR 6-10). Significantly strong positive correlation was found between emotional and instrumental support (R = 0.7; p = 0.01), planning, acceptance and active coping (R = 0.7; p = 0.01); behavioral disengagement, self distraction and denial (R = 0.5; p = 0.01). Significantly fair negative correlation was observed between active coping and depression (R = -0.4, p <0.001). Patients with better performance status on ECOG scale (Grade 0-2) leaned more on the positive coping strategies like instrumental support, emotional support, positive reframing and venting. CONCLUSION: Different coping strategies, especially positive coping helps the patients to adapt with their disease over time. All women suffering from breast cancer should be routinely screened and assessed for psychological distress and ensure early intervention and management to promote a better quality of life.

Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review.

BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. AIM: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. DESIGN: Scoping review methodology. DATA SOURCES: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. RESULTS: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. CONCLUSION: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.

Depression, anxiety, and performance status among the women with metastatic breast cancer receiving palliative care in Bangladesh: A cross sectional study.

Background and Aims: Advanced breast cancer patients suffer from various psychological issues including depression and anxiety. This study aims to explore these psychological issues and their relationship with the performance status. Methods: This cross-sectional study was conducted among 95 patients with metastatic breast cancer attending the Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Bangladesh from April 2021 to September 2021. Data was collected by face-to-face interview using a structured questionnaire along with Hospital Depression and Anxiety Scale. The performance status of the patients was determined by the Eastern Cooperative Oncology Group (ECOG) performance scale. The association between different variables were assessed by χ 2 test and Fisher Exact test. Result: Mean age of the respondents was 48.9 ± 9.9 years. Most of them were married (94.7%), muslim (92.6%) and homemakers (82.1%). More than half (52.6%) of the patients were evaluated having ECOG performance status grade II. Four out of ten  (44.2%) patients had moderate to severely anxiety, and almost one-third (36.9%) patients were suffering from moderate to severe depression. The patients with high educational status were found to have less depression. In addition, patients faring better on ECOG performance scale (Grade 0 to I) had significantly (p < 0.05) less depression and anxiety. Conclusion: Depression and anxiety are one of the major psychological sufferings among the women with metastatic breast cancers. All women suffering from breast cancer should be routinely screened and assessed for phychological distress and ensure early intervention.

Program evaluation: improving the quality of life of older people in an urban slum in Bangladesh.

AIMS: The study aimed to explore the quality and impact of care provided through an innovative palliative care project to improve the quality of life of older people in an urban informal settlement in Bangladesh. METHODS: Center for Palliative Care (CPC) at Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka, in collaboration with the Worldwide Hospice Palliative Care Alliance (WHPCA) has been operating this community project since 2015. A cross-sectional observational design was used in this program evaluation study. A total of 594 people received services including 227 patients (Group-1) receiving regular and intensive palliative care and 367 patients with less intense needs (Group-2) receiving relatively less support based on need. In addition, current group-1 patients (total 114) and a matched cohort of 58 group-2 patients were interviewed with an experience of care survey questionnaire. Baseline and demographic data were presented in tables. The Z-test was used to measure mean statistical differences between two groups. RESULTS: Multiple comorbidities were common. Pain was the most frequently noted physical symptom along with anxiety, sadness, and depression as common psychological concerns. Compassionate palliative care for the older people had significant (p < 0.05) impact on psycho-social and spiritual care, caregiver training, responding to emergencies, and reduction of out of pocket healthcare expenditure among the intensive intervention group. CONCLUSION: Using a community-based approach following this model may play a significant part in expansion of palliative care throughout Bangladesh to meet the huge need and scarcity of such services.

Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh.

We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child's needs and in all families, the child's condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities.