Dr. J.J. Beltman and drs. M. de Fouw (Leids Universitair Medisch Centrum, Leiden, The Netherlands)
In Sub-Saharan Africa where life expectancy is short, supportive and palliative care for severely ill patients are hardly available. Ethiopia is one of the countries where lack of access to pain relief and palliative care are apparent. In our study we assessed palliative care and support programs for women, mostly affected by cervical cancer and breast cancer. Breast and cervical cancer are the leading cancers among women in Ethiopia, with 15244 and 6294 new cases each year.
Most women identified with cervical and breast cancer present in advanced stage where curative treatment is no longer an option. Comprehensive palliative care services are needed but scarce, strong analgesics like morphine are hardly available and knowledge of palliative services in health facilities is limited.
We aimed to understand the current practices of palliative care, and the needs and preferences of both patients and their caregivers. We conducted in-depth interviews with terminally ill women (34) and their caregivers (27), and key informant interviews (16) with community leaders, religious leaders, health care professionals and policy makers.
All patients received support from the palliative care programs, but stated that it was insufficient to meet their needs. Most women (4 out of 5) suffered from moderate to severe pain, half of the women frequently experienced moderate to severe difficulties with sleeping or eating.
“She (the volunteer provider) has been caring. However, I am not happy and lose hope when my pain comes back. I then feel uncertain about my life. I feel like am dying. It is bad to live under uncertainty, losing my ability to make decisions about myself. The volunteer at times fails to help under such circumstances” (42 years old female patient)
Besides pain, and difficulties with sleeping or eating women suffered from other complaints like cough and vaginal bleeding, that strongly limited their daily activities.
“I bleed every time. It clots and clots and brought offensive smell since I do not have support to clean it and of course no one comes closer. I got weaker and weaker. Only recently volunteers came to help me – thank God.” (38 year old female patient)
Women felt very worried about their situation, and did not often talk about their worries and concerns with their caregivers. Religion did support women in feeling more hopeful about their situation.
Caregivers were often related to the patients, in half of the cases a daughter or son cared for their own mother. Neighbours and other community members supported less than 1 in 4 patients. Most caregivers experienced sad feelings while providing support to terminally ill women and experienced the work as consuming. At the same time, they felt confident about the care they were providing although they missed information on the diagnosis, signs and symptoms.
Health care professionals, community leaders, religious leaders and policy makers recognized the existing gap in palliative care provision and lack of knowledge on palliative care services. They pointed out the lack of organization of care, lack of skilled providers, lack of budget and low priority that is given to palliative care services.
During our study we found that only a selected group of women was included in the support programs, although the programs define palliative care in a broad definition including chronic illnesses like diabetes and hypertension. Considering the population size in the areas where the programs are active, many women with palliative care needs are not identified.
Our study demonstrates that there is an unmet need for palliative care services, that palliative care services should focus more on pain and symptom relief including training of related caregivers, and palliative care services should be integrated with existing community networks, religious structures and local and national health systems.
Datum: 18 oktober 2019
Locatie: Universiteit van Amsterdam, Science Park
Het PROGRAMMA zal uit de volgende sprekers bestaan:
Prof. Dr. Tinde van Andel (Naturalis Biodiversity Center)
The Baka (Pygmies) are former hunter-gatherers, living in the tropical rainforest near Lomie, southeastern Cameroon. The goal of the van Andel et al. expedition (1 April-25 April 2019) was to collect botanical vouchers for the edible forest plants that were reported earlier during interviews by postdoc Dr. Sandrine Gallois on wild food collection and dietary preferences among Baka in the village of Le Bosquet. The fieldwork has been completed: we collected 104 botanical vouchers of wild edible plants from secondary and primary forest. We matched all Baka names mentioned during the previously conducted interviews, with the exception of four species. These are collected at the moment by Gallois herself, after she received field training in the collection, documentation and preservation of ethnobotanical specimens by the applicant.
We (van Andel, student Heger and Gallois) also collected several edible species that were not in the preliminary database. A total of 11 different wild yams were collected, and eight different Irvingia species. Our results show that the Baka make ingenious use of the Central African rainforest, characterized by large-fruited trees adapted to dispersal by large, ground-dwelling mammals (elephant, chimpanzees, gorilla’s, etc.). Many of these large fruit species, some with unpalatable flesh, are cut open to obtain the seed kernels, which can only be consumed by humans after long and complicated detoxification techniques, such as roasting, soaking in running water, smoke-drying, etc. These seed kernels are rich in proteins and fats, and form an important component in the Baka diet.
We made sure to include field assistants of different age, gender and specializations (e.g., healers, hunters, grandmothers), which allowed us to document several types of ritual food: specific plant species only eaten by elephant hunters, post-menopausal women or small boys after their circumcision ceremony. Most of the wild food species are collected in primary forest, and we documented several edible species that have not been previously documented as eaten by humans in the literature (e.g., roots of Palisota barteri, stems of Anchomanes difformis and seven species of edible ferns). As all Baka are now somehow involved in agriculture, we could not make a distinction in wild plants use between farmers and true hunter-gatherers. However, the botanical variety of wild-gathered food plants remains very high, even though people now also spend time in cultivating cassava and bananas. Unfortunately, illegal logging of Baillonella toxisperma (Sapotaceae) and Diospyros (Ebenaceae) in the area deprives the Baka of some of their most valuable sources of edible fruits and oil. The Baka villagers requested our help in writing a book on their wild food plants, to which we agreed.
Het onderzoek van Seringe Huisman, dat zij tijdens haar masterstage deed en dat werd ondersteund door de Treub Maatschappij, is gepubliceerd in Vegetation History and Archaeobotany. Het complete verhaal is hier te downloaden.
Treub Maatschappij – Society for the Advancement of Research in the Tropics
Institute for Biodiversity and Ecosystem Dynamics (IBED), University of Amsterdam
“Biodiversity & Global Change in the Tropics”
Coordinators: Carina Hoorn & Daniel Kissling
Time: Thursday 17 November 2016, 1330-1700
Location: H0.08, University of Amsterdam, Science Park
1335-1345 Rene Boot (Tropenbos International | Ecology and Biodiversity, University of Utrecht | Chair Treub): “Introduction to the Treub Maatschapij”.
1345-1415 Suzette Flantua (Paleoclimate, University of Amsterdam): “Plant distributions and climate change in the Andes”.
1415-1445 Patrick Jansen (Plant-animal interaction, Wageningen University): “Disruption of the Mesoamerican Biological Corridor”.
1445- 1515 Jose Joordens (Human evolution, University of Leiden): “Revisiting Trinil: reports from the August expedition”.
1545-1615 Sancia van der Meij (Marine invertebrates, Naturalis): “What makes a good home? Factors influencing host specificity in coral-associated fauna”.
1615-1645 Roy Erkens (Plant molecular phylogeny, Maastricht University College): “Evolutionary patterns in the pantropical plant family Annonaceae”.
1645-1715 Marieta Braks (Entomology, RIVM): “Zika: the new face of an old problem”.
DRINKS AT THE ATRIUM 1715-1900