Solidarity and Suffering: Patients and their Caregiver's Experiences Enrolled in the Community-Based Palliative Care Program in an Urban Slum of Bangladesh (original) (raw)
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BIRDEM Medical Journal, 2021
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Global Pediatric Health, 2021
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 car...
plos one, 2024
Background Palliative care is paramount in the modern clinical field worldwide. However, in Bangladesh, its acceptance is limited compared to other related sectors, despite the country suffering from a huge burden of life-limiting diseases. Besides, PC teams and their approach to care are entirely different from the conventional clinical approach. This study aimed to explore the challenges faced by healthcare providers working in the palliative care unit in Bangladesh, including all groups. Design This was a cross-sectional descriptive survey involving palliative care providers. Methods A self-administered pre-tested questionnaire was used for data collection. Data was analyzed using descriptive statistics and Chi-square at p <0.05. Result The mean age of the respondents was 33.59 ± 8.05 years, and barely most (82.5%) had served for 7–9 years. More than half (51%) of doctors and 31% of nurses claimed patient agitation as a challenge. Almost all groups of respondents exhibit ethical dilemma as a barrier, although a significant relationship was found between professional level and ethical dilemma. More than half of doctors (51%), 41.5% of nurses, and 29.5% of PCA-ward staff mentioned the lack of telemedicine facilities as a challenge. Nearly half (47.1%) of doctors and nurses claimed that patients’ families had made patient care difficult, on the other hand, PCA-ward staff (70%) group ignorance of family did the same thing. Opioid phobia of other health professionals restricted the growth mentioned by the majority of all four groups of respondents. A significant relationship was found between limited dose formulation and experience of HPs (p<0.07). At the institutional level, 93.3% of nursing staff agreed that the lack of supporting staff was a drawback. A significant relationship was also found between the type of institution and the lack of a support system to conduct home-based care (p<0.002). Moreover, the majority (83.3%) of PCA-WS exhibit a lack of career development opportunities (p<0.001) as a barrier, besides, more than 7 out of 10 doctors (7.2%) felt social discrimination as a challenge(p<0.001). Conclusion Introducing new concepts comes with obstacles, but proper planning and awareness can make it necessary. Incorporating it into primary healthcare can create new job opportunities and increase familiarity among the general population. Training healthcare professionals on opioid handling can also increase its acceptance.
American Journal of Hospice and Palliative Medicine®, 2020
Background: 40 million people in the world are in need of palliative care, but only one-seventh of that population receive services. Underuse of palliative care in low resource countries exacerbates suffering in patients with life limiting illnesses such as cancer. Objectives: The current study was conducted to identify barriers, facilitators and recommended strategies for informing development of a home-based palliative care intervention for poor and medically underserved rural patients in Kolkata, India. Methods: Semi-structured interviews were conducted with 20 clinical and patient stakeholders in Kolkata, India. Questions queried current practices for delivering palliative care, along with barriers, facilitators and optimal strategies for implementing homebased palliative care. Results: We identified some key barriers to palliative care delivery in rural areas: lack of access to palliative care till late stages; patients unaware of their cancer stage; lack of affordability of me...
KNOWLEDGE AND PRACTICE OF PALLIATIVE CARE AMONG INFORMAL CAREGIVERS IN THIKA DISTRICT HOSPITAL
Palliative care is a philosophy of care that provides an organized interdisciplinary system of care. Its delivery aims at relieving and preventing sufferings of patients and family facing problems associated with life-limiting illnesses (Sepulveda et al 2002). Many life threatening diseases such as cancers, AIDS, and the associated mental illnesses in their last stages require comprehensive care. This care can be offered in the hospital, nursing home or even at home. The goal of care at this time is not to achieve cure for the disease but rather to ensure that the patient and the family achieve the highest possible quality of life. The aim of palliative care is preventing or treating as early as possible the symptoms and side effects of the disease and its treatment as well as the related psychological, social and spiritual problems. It can therefore be deduced that it's given in addition to the main treatment. However once the patient reaches the end stage of the disease whereby treatment is no longer necessary and death is inevitable, palliative care then becomes the main focus (Sepulveda et al 2002). The World Health Organization (WHO) stresses the importance of palliative care as a package for health in the developing countries. The care should be started early enough in the disease to ensure that the quality of life is maintained and enhanced rather than regained (NHPCO, 2012). In this state, it is possible for care to be provided at home by family caregivers. The healthcare professionals therefore only offer the professional help and guidance. These caregivers are sometimes faced with a challenge in their work owing to their limitations in terms of knowledge and due to their beliefs (Stajduhar, 2013). 1.1. Background Information The main goal of palliative nursing care is to ensure quality of life through a trajectory of sufferings associated with the life threatening illness. The care involves relief of pains, relief of other physical, psychological, social and spiritual sufferings, and dying and bereavement follow-up. Potential success to this care is rooted on the positive relationship between the caregiver and the patient. Part of the philosophy of palliative care is to see the patient as an individual with inherent ability to convey hope even in the face of adverse sufferings. The caregivers use the available material and non-material to increase the patients comfort, through interdisciplinary approach. The focus is on patient's autonomy and holistic care effectively expended to the family (Care, 2013). In the recent years, progress has been made to link the services provided in the hospital and home-based care in a continuum that enhance holistic support between stakeholders. The informal model of home-based care helps the families to take care of their beloved ones in their own setting and dependent on their own informal systems. There is no formal training in this case and the only time a healthcare professional is involved is during follow-up clinic visit. The informal (family) caregivers have been an essential component of care provision especially for home-based palliative care. In Kenya, these caregivers are often overwhelmed by the demand
Palliative Medicine, 2019
Background: Palliative care has been successfully integrated into many Muslim-majority countries, most frequently in urbanised areas with developed health care systems. Less is known as to how the concept of palliative care is perceived by Muslim populations and health workers in rural, resource-limited contexts. Aim: This study seeks to explore whether the principles of palliative care are congruent with the perspectives of health professionals, families and communities in rural areas of the Islamic Republic of Mauritania, in West Africa. Design: A qualitative research design was employed underpinned by a constructionist paradigm. Data were collected through 31 interviews and 8 focus groups. Data were analysed using thematic analysis. Setting/participants: A total of 76 participants were recruited from across rural Mauritania; 33 health care professionals, 12 recently bereaved family members and 31 community leaders. Data collection occurred during training events in the capital and visits to villages and rural health posts. Results: Three major themes were identified. First, there is a perceived lack of congruency between an illness which limits life and the strong belief in destiny. The second theme describes the perceived barriers to communication of issues relating to palliative care. Finally, a good death is described, framed within the interplay of religious faith and cultural practices. Conclusion: The palliative care ethos is viewed positively by the majority of participants. The need to understand and respect a Muslim individual’s faith does not diminish our obligation to personalise palliative care provided for them and their family
Various Aspects of Palliative Care in Bangladesh
Archives in Cancer Research, 2016
Palliative care ('palliative' approaches from the Latin 'pallium' meaning cloak) is several form of medical care and multidisciplinary approach that focuses on reducing severity of symptoms of diseases rather than delay progression of the disease itself or provide cure. Palliative care is all about accomplishing the possible highest quality of life (QOL) and promoting relieve and dignity for patients whose are suffering with incurable and life limiting diseases. The aspects of the palliative care in Bangladesh concern the matters of concentrating on the rights of the patients in getting release from sufferings of all kinds (physical, psychological, social and spiritual).
Case Study Describing Access to Palliative Care in Pakistan
2020
Around the world, cancer is a leading cause of death and the burden of cancer is expected to increase in low-and middle-income countries (LMICs), where 82% of the world's population resides. In these countries, which include Pakistan, aspects of the culture and traditions, inaccessibility to diagnostic and treatment facilities impede access to palliative care. In many cases people do not reach treatment facilities until they are at the stage when the person is at the end-of-life and is dying. This paints the picture of cancer as a deadly disease and as soon as it is diagnosed nothing can be done but to mourn. Little is understood about people's experiences accessing palliative care in Pakistan. This study followed Yin's methodology of case study research to describe how people accessed palliative care through Bait-ul-Sukoon Cancer Hospital and Hospice, the research setting (and bounded case) selected for this study. Theoretical propositions that guided the research were derived from the literature and from my professional experience. Data collection occurred through unstructured observations, interviews of patients, family members and the health care provider, physical artifacts, and through my reflections. Four patients, three family members and five healthcare providers were interviewed. Data analysis occurred simultaneously with data gathering and involved a reflexive analysis of the data. This study was guided by the theoretical propositions, the study objectives, and research questions which were derived from these propositions. Through this analysis process, two main themes were developed with subthemes to describe the case. I was also attentive to identity the rival cases, data that is contrary to the propositions. As the analysis progressed, linkages between the data were noted to see where the data were converging and diverging. iii The findings have described the suffering of people due in a large part to the late diagnosis of cancer. However, late diagnosis is also related to cultural beliefs, the social stigma of having cancer, the financial (and social) burden of seeking treatment, lack of education about cancer prevention and detection, healthcare system inadequacies and corruption, and healthcare providers' knowledge deficits. Poverty underlies most of the suffering and is largely the reason for late diagnosis. Participants suggested that policy-level change was needed to meet palliative care needs, and enhance early diagnosis. Policy level change for poverty alleviation would improve the determinants causing obstructions in accessing palliative care and improve access to pain and symptom management. This research underscores that at present, military and defense funds are the focus in the budget priorities in Pakistan. This deprives the population of fulfilling the need for social development and the health of the people in the country, which ultimately ruins the health and quality of life of the individuals. As a result, individuals feel emotionally distressed at the prospects of little or no betterment of their lives, their children's lives, and the generations that follow. These findings highlight the need for policy change by involving the stakeholders from social sectors, health, and education at the country level and through collaboration with the World Health Organization. Dissemination of these research findings, focusing on a public health approach and providing universal health coverage to all, is critically important for improving access to palliative care in Pakistan. This study identifies a clear need to educate the healthcare providers about palliative care. Therefore, it is recommended that in LMICs palliative care should be included in medical and nursing curricula. The findings of this study suggest that nurses should work within the scope of their practice. This is also needed for their own safety and for the safety of their patients. This iv requires close monitoring and supervision by the statutory bodies like Pakistan Nursing Council. There are implications for policy change to provide universal access to health and to achieve the sustainable development goals. Corruption is identified as one of the major hurdles in accessing health must be controlled to start with and then be eradicated.
The Suffering Experiences: Family Caregiver of Home Based Palliative Care in Malaysia
Open Access Macedonian Journal of Medical Sciences
BACKGROUND: Caring for a family member who has advanced cancer and is nearing the end of their life comes with a slew of concerns and obstacles for the caregiver. A thorough understanding of the hardships and tribulations of caregiving may be a step toward resolving the issues that these patients’ family caregivers confront. AIM: The present study aimed to explore the suffering experienced faced by Malaysian family member who has advanced cancer and is nearing the end of their life. MATERIALS: The present qualitative study was conducted through in-depth semi-structured interviews held with seven family caregivers of cancer patients selected through purposive sampling. Interviews continued until the saturation of data. All interviews were recorded, transcribed, and analyzed through conventional content analysis. RESULTS: The codes extracted from interviews produced five main themes, including empathic suffering, powerless and hopeless suffering, predictive suffering, compliance suffe...