Aim: This study aims to explore the experiences of bereavement after stillbirth of Pakistani, Bangladeshi and White British mothers in a town with multi-ethnic populations in England.
Participants: A purposive sample of Pakistani, Bangladeshi and White British mothers aged over 16 (at time of infant birth), who suffered a stillbirth in the preceding 6–24 months and residing in a specified postcode area were invited to take part in the study, by an identified gatekeeper (audit midwife) from the local National Health Service Trust, in addition to local bereavement charities.
Design: Qualitative methods using face-to-face semi-structured interviews were undertaken, recorded and transcribed verbatim. Using framework analysis, several themes were identified.
Findings: There were three main themes identified from the data; 1. knowledge and information of pregnancy and perinatal mortality; 2. attitudes and perceptions to pregnancy and perinatal mortality and 3. experiences with maternity care. The findings revealed mostly similarities in the bereavement experiences of the Pakistani, Bangladeshi and White British mothers. A few cultural and religious differences were identified.
Conclusions: This study found important similarities in bereavement experiences of Pakistani, Bangladeshi and White British mothers and highlights considerations for policy makers and maternity services in how the timing of bereavement after care is provided, including advice surrounding the infant post-mortem. 209
PURPOSE: The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services.
METHODS: This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics.
RESULTS: There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21).
CONCLUSION: A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.
BACKGROUND: Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh.
METHODS AND FINDINGS: Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning.
CONCLUSIONS: In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.
Context: The psychosocial and spiritual needs of individuals with life-limiting conditions in low- or middle-income countries have not been well described. Understanding these needs is important to providing holistic palliative care.
Aim: This study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh.
Subjects and Methods: Individuals with advanced incurable illnesses (advanced cancer and HIV/AIDS) from a wide geographical distribution across Bangladesh were interviewed about their health status, emotional and spiritual experiences with their illness, coping and support systems, and greatest needs and fears.
Results: We interviewed 221 individuals with incurable cancer (82%) or HIV/AIDS (18%). Self-reported health status was poor or very poor for 48%, and 44% reported feeling unhappy all of the time. The majority (61%) rated their current level of unhappiness as 10/10. Spouses (50%), children (15%), and parents (13%) were the most common caregivers. Money and medical care were equally the most common needs (46%). Participants' greatest fears were for the future of their children (38%), being in pain (29%), and dying (28%).
Conclusions: There is a significant burden of psychosocial and spiritual concerns among patients with advanced incurable illness in Bangladesh, with sadness being very frequent and of high intensity. Family and friends provide significant emotional and practical support to patients who are seriously ill, but very few patients access any professional support for these concerns.
Les besoins de sauver des vies prennent souvent le dessus lors des crises humanitaires, au détriment de la souffrance et des besoins en soins palliatifs des gens affectés. Les soins palliatifs peuvent contrôler les symptômes et alléger la souffrance d’un large éventail de personnes malades ou blessées lors d’une crise humanitaire. À ce jour, très peu de programmes fournissent des soins palliatifs lors de situations de crise humanitaire. L’accent sur les résultats quantifiables et le manque de standards ou d’expertise sont des obstacles à la fourniture de soins palliatifs dans ces contextes. Notre équipe a identifié un besoin important en soins palliatifs chez les réfugiés Rohingyas au Bangladesh où de nombreuses personnes souffrent de douleurs et autres symptômes, mais sont incapables d’accéder aux soins dont elles ont besoin. Nous avons développé un programme communautaire, où les agents de santé communautaire fournissent des soins à domicile, avec le support des professionnels de la santé, ce qui garantit que les personnes atteintes de maladies graves reçoivent un soutien pour leurs symptômes physiques, notamment le soulagement de la douleur, ainsi qu’un soutien psychosocial et spirituel.
BackgroundTelephone consultation for patients and their relatives is a new aspect in the area of palliative care (PC). The centre for palliative care (CPC) in Dhaka, Bangladesh has been delivering a 24/7 telephone service since 2009.AimThe aim of the study is to describe this 24/7 PC telephone consultation service (TCS); the development and the use of the service and the challenges experienced by the physicians delivering the consultations.MethodsA descriptive mixed method study. Data on telephone consultations were collected from (CPC) from 2009 to 2016. Descriptive statistics were used to identify characteristics of patients, callers’ relationship to patients, reasons for calling, and suggestions/advice provided. A group interview with the consulting physicians was conducted and analysed to describe the development of the service and the challenges experienced.ResultsFrom December 2009 until August 2016, a total of 4195 calls were registered from palliative patients and their carers. The service was utilized most frequently by informal caregivers of patients (80%), pain was the most commonly recorded symptom (24%), and suggestions were mainly provided about general medicine (31%). The service providers are facing many challenges but they are motivated by the positive feedback from patients and carers and by the ability to at least do something.ConclusionThe TCS developed at CPC is a convenient way of delivering advice to palliative patients and their families in rural areas of Bangladesh, where the PC service is not available.
As in the case in other developing countries, palliative care remains a major unmet need in Bangladesh. The authors present a project undertaken to provide community-based palliative care to people living in two slum towns in Bangladesh.
Background: Palliative care is the practical care which seeks toward maximization of quality of life intended for people and families in front of life-threatening illnesses. Though the concept of palliative care is not new, still it is not eminent in Bangladesh. As young generations are future representatives of any society, their basic concepts and knowledge should be clear and broad.
Objective: The endeavor of the study was to ascertain the level of basic concepts and knowledge of young generations living in Dhaka city, Bangladesh about palliative care.
Method: A cross-sectional survey study of young adults (those are living in Dhaka city, Bangladesh) was conducted from April 2016 to November 2016. Information regarding their knowledge and concepts was collected by self-made questionnaire by literature review.
Results: The study was conducted with the total number of 3152 young adults (n = 3152). Among them 55.01% were male and 44.98% were female. It was found that their age range was between 20 and 28 and most of them (n = 1643) were between 23 and 25 years. It was also found that 40.31% knew about the concept of palliative care and 62% of their information source was Internet and 14% from books and 8% from health professionals and 12% from mass media and 4% others. And a larger portion of them which was 59.69%, did not know the concept of palliative care. Among those 40.31% young adults who knew about palliative care, 46% believed their concepts were clear about palliative care and 54% thought their concepts were not clear. And astoundingly 78% assumed that palliative care only deals with cancer patients. It is important to notice in the study that, young males are comparatively more aware then young females.
Conclusion: The findings reveal that most of the young adults living in Dhaka city do not have clear concepts and knowledge about palliative care. There should be more awareness-related programs on this aspect.