IMPORTANCE: In the Kilimanjaro region of Tanzania, there are no advance care planning (ACP) protocols being used to document patient preferences for end-of-life (EoL) care. There is a general avoidance of the topic and contemplating ACP in healthcare-limited regions can be an ethically complex subject. Nonetheless, evidence from similar settings indicate that an appropriate quality of life is valued, even as one is dying. What differs amongst cultures is the definition of a 'good death'.
OBJECTIVE: Evaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.
DESIGN: 13 focus group discussions (FGDs) were conducted in Swahili using a semi-structured guide. These discussions were audio-recorded, transcribed, translated, and coded using an inductive approach.
SETTING: Kilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.
PARTICIPANTS: A total of 122 participants, including patients with life-threatening illnesses (34), their relatives/friends (29), healthcare professionals (29; HCPs; doctors and nurses), and allied HCPs (30; community health workers, religious leaders, and social workers) from KCMC, or nearby within Moshi, participated in this study.
FINDINGS: In characterizing Good Death, 7 first-order themes emerged, and, of these themes, Religious & Spiritual Wellness, Family & Interpersonal Wellness, Grief Coping & Emotional Wellness, and Optimal Timing comprised the second-order theme, EoL Preparation and Life Completion. The other first-order themes for Good Death were Minimal Suffering & Burden, Quality of Care by Formal Caregivers, and Quality of Care by Informal Caregivers.
INTERPRETATION: The results of this study provide a robust thematic description of Good Death in northern Tanzania and they lay the groundwork for future clinical and research endeavors to improve the quality of EoL care at KCMC.
BACKGROUND: Palliative care has been developed in recent years in many sub-Saharan countries in Africa due to activities of African Association for Palliative Care. Palliative care units have been established also in most hospitals in Tanzania. Yet very little is known about their functions. Long-term studies about the sustainability of palliative care have not been carried out.
METHODS: The attitudes of 101 members of hospital staff and persons in charge of palliative care services of Ilembula District Designated Hospital (IDDH), Tanzania, were assessed using a modified and prevalidated questionnaire annually in 2014 to 2017. The inquiries were executed on randomly allocated days. Also, the patient and economy registries were analyzed. Additional qualitative data were obtained in personal interviews and during observational visits twice a year at the IDDH.
RESULTS: Ilembula District Designated Hospital has a true multiprofessional palliative care team, which provides services in the hospital, in the villages, and at homes. The activities are based on careful 5-year planning and budgeting. Up to 17 villages have been included in the services. Ninety-five percent of the patients were HIV infected. Short-acting morphine oral solution was the only available strong opioid. The hospital staff evaluated palliative care as good or excellent; 50% of the staff would need more support in the end-of-life care.
CONCLUSIONS: A sustainable palliative care service can be built in a Tanzanian rural hospital if an advanced planning and budgeting are made. In Tanzania, the biggest group of palliative care patients are still HIV-infected individuals. There is a lack of opioids in the country.
BACKGROUND: In Africa, the core of home-based care (HBC) in the villages is provided by volunteer helpers, individuals chosen to provide both support to patients and important information to health officers. Yet, voluntary work in palliative care and the burden of being a volunteer have not been studied in Africa.
OBJECTIVE: To study the content and burden of volunteer work in the palliative home care of Ilembula District Designated Hospital (IDDH), a secondary care institution in Tanzania.
DESIGN: A descriptive prospective study using semistructured and closed questionnaires.
SETTING/SUBJECTS: The modified Palliative Care Evaluation Tool Kit (PCETK) and Professional Quality-of-Life Scale (ProQOL) were used to study the work content and workload of 47 volunteers in the palliative HBC of IDDH. ProQOL was translated to Kiswahili. Fifty-seven health care professionals and students validated the translation. Factorial analysis and Cronbach's alphas were calculated for reliability.
RESULTS: Responses to PCETK and ProQOL were received from 34 (72%) to 20 (42%) volunteers, respectively. The Kiswahili translation of ProQSL appeared to be highly reliable. On average, a volunteer worked 20 hours/month and had 22 patients. The main activities included helping with daily tasks, preparing meals, assisting with transport, and reporting the patient's clinical condition to the health care officers. The volunteers reported high satisfaction ratings (average 4.2, standard deviations 0.38) and had higher scores than the validation group in the compassion fatigue scale (2.42 vs. 1.55, p < 0.01) but no burnout.
CONCLUSIONS: The volunteers had high commitment and workload. Even so, coping strategies for dealing with suffering and death should be better addressed in training.
Purpose: Palliative care remains an urgent, neglected need in the developing world. Global disparities in end-of-life care for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for palliative care development suitable to this context.
Methods: In-depth interviews were conducted with 20 caregivers of pediatric patients with cancer and 14 hospital staff involved in pediatric end-of-life care. This was combined with 1 month of participant observation through direct clinical care of terminally ill pediatric patients.
Results: Data from interviews as well as participant observation revealed several barriers to palliative care: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of end-of-life care in this setting, including community cohesiveness and strong faith background.
Conclusion: This study provides a unique but focused description of barriers to palliative care common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective-and more appropriate-palliative care policies for young patients with cancer in the developing world.
The number of people in need of palliative care is growing worldwide, particularly in the developing world. The World Health Organization recognises palliative care as a basic human right, but there are many challenges for delivering palliative care in low- and middle-income countries. In the African continent, the African Palliative Care Association (APCA) provides guidance for political advocacy for developing palliative care programmes and has developed the APCA Palliative Outcome Score (POS), an evidence-based tool for measuring outcomes of palliative care. This article focuses on palliative care delivery in Shirati, Tanzania, located in the Rorya District in the Mara Region in northern Tanzania, highlighting the impressive work done with limited resources and despite many challenges. Recommendations for future research include evaluation of outcomes using the APCA POS, the application of mobile technology, and governmental advocacy for increased access to opioid medications, which have shown promise in broadening the reach of palliative care in the East African Community.
Les aventures de sept adolescents qui après le décès de leur grand-père commun reçoivent de sa part une mission chacun. DJ a 17 ans et sa quête consiste à gravir le Kilimandjaro pour y répandre les cendres du défunt. Un beau livre d'aventures sur fond de sentiments très touchants d'un grand-père extrêmement attaché à ses petits-enfants... Beaucoup de tendresse et d'amour.
OBJECTIVE: Little is known about the current views and practices of healthcare professionals (HCPs) in Sub-Saharan Africa (SSA) regarding delivery of hospital palliative care. The present qualitative study explored the views of nursing staff and medical professionals on providing palliative and end-of-life care (EoLC) to hospital inpatients in Tanzania.
METHOD: Focus group discussions were conducted with a purposive sample of HCPs working on the medical and pediatric wards of the Kilimanjaro Christian Medical Centre, a tertiary referral hospital in northern Tanzania. Transcriptions were coded using a thematic approach. RESULTS: In total, 32 healthcare workers were interviewed via 7 focus group discussions and 1 semistructured interview. Four major themes were identified. First, HCPs held strong views on what factors were important to enable individuals with a life-limiting diagnosis to live and die well. Arriving at a state of "acceptance" was the ultimate goal; however, they acknowledged that they often fell short of achieving this for inpatients. Thus, the second theme involved identifying the "barriers" to delivering palliative care in hospital. Another important factor identified was difficulty with complex communications, particularly "breaking bad news," the third theme. Fourth, participants were divided about their personal preferences for "place of EoLC," but all emphasized the benefits of the hospital setting so as to enable better symptom control.
SIGNIFICANCE OF RESULTS: Despite the fact that all the HCPs interviewed were regularly involved in providing palliative and EoLC, they had received limited formal training in its provision, although they identified such training as a universal requirement. This training gap is likely to be present across much of SSA. Palliative care training, particularly in terms of communication skills, should be comprehensively integrated within undergraduate and postgraduate education. Research is needed to develop culturally appropriate curricula to equip HCPs to manage the complex communication challenges that occur in caring for a diverse inpatient group with palliative care needs.