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Abstract
Background With the rise of non-communicable diseases in Tanzania, palliative care (PC) is increasingly needed to improve the quality of life for these patients through pain and symptom management and providing psychological care, social and spiritual support. Despite a larger portion of the population having access to healthcare services at primary healthcare (PHC) facilities in Tanzania, PC services are limited and less organised at this level. This study explored the challenges facing the provision of PC and the opportunities for strengthening PC services at PHC facilities in Tanzania.
Methods We adopted an exploratory qualitative case study to conduct in-depth interviews with 15 health facilities in charge from 15 purposefully selected PHC facilities in Dar es Salaam City, Tanzania, in August 2023. We analysed the gathered information using qualitative content analysis.
Results Two categories emerged from the analysis of the gathered information. These are (1) challenges facing the provision of PC services at PHC facilities and (2) opportunities for strengthening PC services at PHC facilities. The challenges are grouped as provider-level, facility-level and patient-level challenges. The opportunities are organised into three subcategories. These are the increasing demand for PC services, the availability of multiple supporting systems and a functional referral system.
Conclusion This study underscores the challenges and opportunities for providing PC services at PHC facilities. These findings call for a collaborative effort from health system players to strengthen the available PC services. The efforts should include expanding the coverage of PC services at the PHC facilities and healthcare providers’ training. Expansion of PC services should include introducing them in places where they are unavailable and improving them where they are not available. PC training should consider preservice training in the health training institutions’ curricula and continued medical education to the existing staff. Furthermore, we recommend community health education to raise awareness of PC services.
- Palliative Care
- Primary Health Care
- Adult palliative care
Data availability statement
Data are available on reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
The study involved health facility in-charges from urban and semiurban primary healthcare (PHC) facilities, which strengthens its ability to reflect practice at PHC facilities in both rural and urban areas.
The study only explored health facility in-charges’ perspectives, which might have affected the comprehensiveness of the study findings.
The study was conducted in Dar es Salaam City Council and involved only 15 PHC facilities; therefore, it might not give the magnitude of the challenges and opportunities for strengthening palliative care services.
Introduction
With the global rise in non-communicable diseases (NCDs), palliative care (PC) services are becoming increasingly needed to improve the quality of life for these patients through pain and symptom management and providing psychological care, and social and spiritual support.1–3 However, like in other low-income and middle-income countries (LMICs), Tanzania has limited access to PC services across her health system levels.4 A study has estimated that among 40 million people who need PC services annually worldwide, 80% of them are found in LMICs.5 6 Conversely, less than 5% of those who need PC services in LMICs have access to them.4
The WHO recommended incorporating PC in NCD action plans for all countries.7 In addition, integrating PC services into healthcare systems starting at the primary healthcare (PHC) level is a useful strategy to attain high-impact reinforcement of early identification and treatment of pain and other symptoms in patients with chronic illnesses.8 Also, PHC is the main entry point for many patients, and thus, strengthening the services’ affordability and accessibility to all patients in need is crucial.9
Tanzania has a healthcare system organised in a pyramid of three levels, primary, secondary and tertiary levels.10 The PHC level at the bottom mainly delivers health services at the community level, dispensaries, health centres and district hospitals.11 This level offers basic care for outpatients and inpatients who are then referred to higher levels with more specialised care when needed.12 The secondary level includes a regional referral hospital located at the regional level, while zonal hospitals and national hospitals function at the tertiary level. All the health facilities are managed by a health facility in charge who oversees the health facility operations. They are usually medical doctors, clinical officers or clinical assistants depending on the level of the facility. At PHC facilities, their main roles include; ensuring the smooth running of the health facility, linkage with the Council Health Management Team, leading a clinical department and providing the necessary support for the effective and efficient delivery of health services by all health service providers, oversee the quality of service, patient safety and ensure patient satisfaction, management and control of disease outbreaks and other emergencies.13
HIV/AIDS, malaria and tuberculosis are Tanzania’s top causes of death for people aged 15–59 years.14 In comparison, NCDs account for the bulk of deaths in those aged 60 years and beyond.14 However, over the 30 years, the burden of NCD has increased, contributing nearly a third of all deaths in Tanzania.15 In addition, about a third of the overall mortality rate increase has been reported at PHC facilities.15
In Tanzania, the scarcely available PC services are predominantly provided by private organisations and specialised hospitals.4 By 2005, only four institutions (public and faith-based organisations) were providing PC services in Tanzania.4 Through support from faith-based organisations and government efforts, the number increased to 16 hospices/hospital-based PC services and 26 home-based PC services.16 Despite these improvements, PC development is still not promising. Various stakeholders strived to get a PC policy and achieved a stand-alone PC policy in 2016.17 However, investment in PC is low and slow despite the presence of a PC policy since 2016.
Tanzania Health Sector Strategic Plan (2021–2026) outlined the significance of providing home-based care and access to high-quality PC services at PHC facilities for patients who are terminally ill or who experience extreme pain because of disability or chronic illness.18 The government intends to enhance its knowledge of PC, broaden outreach programmes and outpatient care, and ensure that all patients who require PC have access to the necessary medications, including oral morphine, counselling, and psychosocial support for at-home care. To link patients needing PC to medical facilities and offer appropriate home-based care for the elderly, the health sector intends to increase the capacity of community and in-home caregivers.
Despite these strategies, PC services are scattered and not organised in PHC facilities where a large part of the population access healthcare services. This pushes patients needing PC services to the secondary and tertiary levels. The increased demand for PC services amidst the few fragmented available PC services overwhelms the few available facilities. For instance, the Dar es Salaam region with close to six million people has only four facilities that provide PC services. None of the PHC facilities provides comprehensive and structured PC services. This study focused on exploring the challenges facing the provision of PC and the opportunities for strengthening PC services at PHC facilities in Tanzania.
Materials and methods
Study design
We conducted a qualitative exploratory case study to explore the challenges facing the provision of PC and the opportunities for strengthening PC services at the PHC level in Tanzania. An exploratory case study was deemed appropriate as providing PC services at the PHC is a complex phenomenon involving social processes from providers, the organisation of services, communities and individual clients.19 20 Furthermore, an exploratory case study is considered appropriate with the infancy of PC services at the PHC in Tanzania, where little information is available to underpin the theoretical conceptualisation of PC services in this context. Case studies provide wide views, experiences and personal perspectives, which are crucial in establishing and strengthening PC services at the PHC.20
Study area
This study was conducted in Dar es Salaam City Council, a cosmopolitan city with approximately 1.7 million people. The Dar es Salaam City Council has 322 PHC facilities (hospitals, health centres, and dispensaries) owned by the government/public, faith-based institutions and private. These facilities offer basic care for outpatients and inpatients.
Among 322 PHC facilities present in Dar es Salaam City Council, none of them offers structured and comprehensive PC services. These facilities offer inpatients, outpatients and very few offer home-based care. However, the services provided are not real PC since they do not include a holistic approach through managing pain and other symptoms, psychosocial and spiritual care.
Sampling method and sample size
We purposefully identified 15 health facilities from Dar es Salaam City Council. Specifically, we carried out maximum variation sampling to ensure that we selected facilities within the PHC at different levels, locations and volumes of patients. The maximum variation sampling was aimed to enable us to document unique or diverse opportunities and challenges for strengthening PC services across the diverse characteristics of PHC facilities.21 Therefore, we included hospitals, health centres and dispensaries from those with large patient volumes to those with low volumes (table 1). We also included facilities from urban and semiurban settings, public and private. In each selected health facility, we interviewed the health facility in charge. We concluded our sample size at 15 after attaining information saturation, where no more new information was coming with additional interviews.22
Study sites
Patient and public involvement
None.
Data collection
We conducted in-depth interviews (IDIs) with 15 health facility in-charges to explore the challenges and opportunities for strengthening PC services at PHC facilities (table 2). A semistructured interview guide developed in English and later translated into Kiswahili was used to conduct the IDIs. The guide was translated into the Kiswahili language, the widely spoken language by most people in Tanzania. The guide included questions that explored services provided at PHC facilities, organisation of the services, challenges in delivering the PC services and available opportunities for strengthening the provision of PC services. These questions were followed with probe questions based on participants’ responses. Interviews were conducted by two researchers with PC experience assisted by three research assistants who were trained before data collection. IDIs were conducted in a quiet, private room chosen by the participant in the health facility. Interviews were audio recorded by an accompanying research assistant during the IDI, which a researcher carried out. Each IDI lasted between 25 and 40 min.
Sociodemographic characteristics of participants
Data management and analysis
Audio-recorded IDIs were transcribed verbatim by the researchers. Qualitative content analysis was used to guide the analysis, as described by Graneheim and Lundman.23 Analysis was conducted in Kiswahili to ensure the original meaning was retained and that only the final codes, subcategories, categories and quotes were translated into English. Transcripts were read and reread by four researchers to get familiarised with the collected data. Transcripts were manually analysed by identifying meaning units related to the challenges and opportunities for strengthening PC services at PHC facilities. Codes were developed to label the reduced meaning unit. The developed codes were further analysed based on their similarities and differences. Similar codes were grouped to form subcategories, further abstracted to categories. Although described as a linear process, the analysis was iterative. On agreement by all researchers, the final agreed codes and categories were presented with the support of succinct quotes.
Results
Two categories emerged from IDIs of health facility in-charges at PHC facilities (table 3). These are challenges facing the provision of PC at PHC and opportunities for strengthening PC services at the PHC facilities in Tanzania.
Summary of the findings
Challenges facing the provision of PC at PHC facilities
Three challenges were uplifted during the analysis, these were; provider-level challenges (limited knowledge of providers on PC), facility-level challenges (some of the medicine for PC belongs to facilities of higher level, lack of organisational structure on providing psychological support) and patient-level challenges (overexaggerated fear of side effects of drugs/medicine and misconceptions about chronic illness resulting in failure to access health services).
Provider-level challenges
Health facility in-charges reported that many of the healthcare providers have inadequate knowledge of PC. As a result, it becomes a challenge to deliver PC services to patients who are in need.
… maybe it would help us to include palliative care as a topic in the curriculum because not many people know about palliative care. (health facility in charge—08)
Facility-level challenges
Participants explained that some of the medications used in PC for pain management are only available in higher-level facilities, particularly tertiary-level facilities. Examples of these medications include morphine.
…regarding pain management, because of the lack of staff and medicine for pain management at this level, we cannot manage pain properly… (health facility in charge—06).
In addition, participants highlighted that there was no organisational structure for providing PC at the PHC facilities despite the large number of cases they see at this level.
Palliative care no, honestly no, but we see those patients who have long-term illnesses. We have special clinics for diabetes, hypertension, etc. But to say that we provide palliative care as palliative care for us, no we don’t… (health facility in charge—08).
Patient-level challenges
The majority of the informants stated that patients’ misconceptions regarding chronic illnesses make them afraid of taking the medication. They added that people with chronic illnesses including diabetes, hypertension and cancer choose traditional medicine instead of hospital medication due to fear of side effects.
So, I think there is a lack of education in the community, especially for these long-term diseases like Cancer, Hypertension, and Diabetes…many people have been using herbs for fear of side effects from chemicals contained in industrial medicine (health facility in charge—04).
In addition, exaggerated fear of the side effects of drugs/medicine was stated in this study. Informants alluded to the existence of many beliefs on the treatment of chronic illnesses including the one that once one starts using medicines for some diseases such as hypertension and diabetes then the disease will be much more pronounced and weaken the body completely, so patients suffering from these diseases opt to use traditional treatments by using some herbal treatment.
…I always sit with them (patients) to see why they refused the medicine. I have realized that often it is because they are afraid to get used to the medicine and that it will make them use it until they die… The other thing is that they are afraid of the side effects of the medicine (health facility in charge—04).
Opportunities for strengthening PC services at PHC in Tanzania
The category of opportunities for strengthening PC services in Tanzania was revealed by three subcategories. These are increasing demand for PC services, the availability of multiple supporting systems and the existence of a functional referral system.
Increasing demand for PC services
The participants stated that there is an increase in the demand for PC services at PHC facilities due to the increase in non-communicable and chronic diseases. They added that there are campaigns to encourage patients to report to the nearby facility in case of any challenge.
We have to provide palliative care services because when patients with NCDs or chronic illnesses are discharged from higher level facilities they are told to attend clinics in nearby health facilities …. that pushes us to empower our staff on how to provide these services in our health facility… (health facility in charge—06).
Services for elderly people have also been identified as an opportunity to strengthen PC services.
It is needed not only for patients with chronic illness but also for elderly people (health facility in charge—15).
Availability of multiple supporting systems
The existence of multiple support systems such as home-based care, and support from the local government authority, was stated as potential opportunities to strengthen PC services at PHC facilities. Some facilities provide home-based care once per month to people in need, especially the elderly. Health facility staff usually do home-based care in collaboration with local government leaders.
We do home-based care on a monthly basis and sometimes we collaborate with local government leaders in providing these services. If they give us information about the presence of a very sick patient in their area, the team goes out to provide appropriate care to the patient (health facility in charge—15).
The existence of a functional referral system
Participants stated the existence of a functional referral system as an opportunity to strengthen PC services at the PHC facilities. The ability to refer a patient from PHC facilities to regional and national hospitals is an opportunity to ensure a continuum of PC services.
Of course, it depends, you know for chronically ill patients, advice is always provided, so even if s/he comes today you will give him/her advice, and if the patient needs advanced care then we refer them… (health facility in charge—13).
Discussion
We aimed to explore the challenges facing the provision of PC and the opportunities for strengthening PC services at the PHC level in Tanzania. Three groups of challenges have been identified. These are those at the providers’ level, facility level and patients’ level. The opportunities revealed by this study include the increasing demand for PC services, the provision of home-based care services and the existence of a referral system.
As revealed by our study, limited PC knowledge among healthcare providers negatively affected the provision of PC services in their workplace. This limited knowledge among healthcare providers is not unique to Tanzania but to many other LMICs due to a lack of or few number of trained healthcare providers.24 A study conducted at a tertiary-level facility in northern Tanzania revealed that despite the provision of PC services, most of the healthcare providers did not receive PC training.25 Lack of training in PC was also documented in a seven-country study to limit the development of PC services in Africa.26 The training of healthcare workers in Tanzania at all levels (certificate to degree) lacks even a module on PC training. The latter creates the void that has been unveiled in this study. We feel that it is high time for the healthcare training across all levels to have a module on PC. Amidst the increasing burden of NCDs and chronic illness, continuing medical education on PC training is also necessary for in-service healthcare workers. The training should consider all levels including the PHC level where the majority of the patients are attended.
The lack of some essential medicine for pain management such as oral morphine also poses a challenge in PC provision at PHC facilities, as revealed in our study. The lack of oral morphine limits the expansion of PC services, despite the high demand for the service due to cancer and other chronic illnesses.27 However, policy changes in drug prescription and training of healthcare providers to prescribe the drug have been shown to improve access to oral morphine in other settings.28 In Tanzania, the prescription of morphine is restricted to tertiary and specialised hospitals only. The restriction not only limits the availability of morphine at the primary level but also makes the availability of morphine difficult as patients in need have to travel to those facilities for refilling. In our opinion, easing access to morphine by making it available to PHC facilities is considered a feasible option. In Uganda, for instance, the availability of oral morphine at PHC facilities has improved the quality of life of many people.29
Overexaggerated fear of side effects of medicine has been identified as one of the challenges in our study. The fear of modern medicine is coupled with increasing trust in herbs and other traditional medicines and remedies in many parts of the world.30 While the latter may delay patients from reaching the healthcare facilities, it sends a message of declining trust in the health system. In other places, linking the traditional health system to the biomedical system has proven successful as it decreases the delay in accessing modern healthcare services to those in need.31–33 The fear of modern medicine for chronic illness is also entwined with misconceptions that modern medicine causes more side effects than traditional herbs, which also contributes, to many patients with chronic illness not accessing medical care early and going to a late stage of the disease.34 Also, patients fear that using opioids may result in addiction or abuse, making them fail to use opioids.35 Providing adequate information about the use of opioids is the best way to address this barrier.
Amidst the challenges in PC services provision, the study has identified opportunities to strengthen PC at PHC facilities. The rise in NCDs and the increase in the ageing population have increased the demand for PC services worldwide.36 An increase in NCDs such as diabetes, hypertension, cancer and many others makes PC a necessary health service to relieve the suffering of patients and their families and improve their quality of life.37 These conditions mostly need specialised clinics and PC services. The introduction and integration of PC into the healthcare delivery system are inevitably becoming necessary. It has been demonstrated that early PC integration considerably improves the quality of life for elderly people with advanced cancer and/or chronic illnesses.38 Strengthening the PC services at the PHC facilities through an integrated approach has the potential to serve a larger population compared with the existing approach, where most PC services are available at higher levels of the health system.
The provision of home-based care services as revealed in our study, if well planned and supported, has the potential to benefit chronically ill patients at a reduced financial cost of accessing the services in a hospital setting to these patients.39 There is strong evidence of functional home-based care in Tanzania for people living with HIV and AIDS.40 Lessons from this programme can be adopted to strengthen PC. The lessons learnt from home-based care in HIV and AIDS can be integrated into the health facility structure and be tailored to suit PC services.41
The existence of a functional referral system as revealed in our study provides an important opportunity for the continuum of care for patients in need of PCs. A challenging referral system has been found to affect the continuum of care and even result in negative outcomes.42–44 Timely access to referral services has revealed cutting significant morbidity and mortality of patients with chronic illness and acute pain.45 46 With the organised health system in a pyramid fashion in Tanzania, strengthening PCs at the PHC facilities can ensure access and a continuum of care from basic to specialised services. The latter not only will facilitate timely referral but also ease access to patients in need.47
Methodological consideration
The trustworthiness of our study was assessed by using four criteria; credibility, dependability, conformability and transferability.48 Credibility was enhanced through the involvement of researchers with different professionals and experiences and the inclusion of urban and semiurban PHC facilities. Confirmability was enhanced through the derivation of the categories based on the study participants’ experiences of working in PHC facilities rather than the researchers’ interpretation. To ensure dependability, researchers conducted a study in the facility of each study participant. We enhanced transferability through a detailed description of the methodology used.
Implications of the study
Findings from this study highlight challenges and opportunities for strengthening PC services in PHC facilities. This information can be used by the relevant authority(s) to plan and implement PC services at the primary level, as WHO recommends. This will influence the policymakers to place strategies for strengthening the healthcare system and PC for universal health coverage.
Limitations of the study
We used a purposive sampling to identify 15 health facility in-charges from Dar es Salaam City Council. This sampling strategy might be prone to bias; however, for the scope of this study, we focused on the health facility in-charges since the PC services are in the infancy at this level. We understand that the perspectives of leaders significantly influence the availability of certain services; therefore, future studies might consider recruiting available healthcare providers.
Additionally, the study was conducted in Dar es Salaam City Council with 15 health facility in-charges; therefore, it might not give the magnitude of the challenges and opportunities for strengthening PC services, hence limited generalisability. However, these findings might be useful in areas with similar settings.
Conclusions and recommendations
This study underscores the challenges and opportunities for strengthening PC services at the PHC level from both the supply and demand side. The findings point out the need for strong collaborative efforts from health system players in strengthening the little available PC services including scaling them up to the PHC system. Training of healthcare providers should include adequate coverage of PC services and this should go hand in hand with equipping the facilities with necessities for the provision of PC services. Community health education targeting raising awareness on PC services should be prioritised in health promotion campaigns.
Data availability statement
Data are available on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
The Muhimbili University of Health and Allied Sciences (MUHAS) Institutional Review Board granted ethical clearance for the study (MUHAS-REC-06-2023-1763). The permission to conduct the study was obtained from the President's Office—Regional Administration and Local Government Tanzania, the Regional Secretariat, the City Council Authority and hospital management teams. Each research participant gave informed consent after receiving an adequate explanation of the research. The consent form included details on research objectives, confidentiality, rights of the participants, autonomy, what participation involved and consent to publication.
Acknowledgments
The authors express their gratitude to the Regional Secretariat and City Council for permitting the research to be conducted at Dar es Salaam City Council and taking part in the supervisory role during data collection. They also thank the Muhimbili University of Health and Allied Sciences for providing approval for the study to be conducted. The authors are very grateful to the study participants for their willingness to participate in the study and they highly appreciate the commitment and good work of the research assistants in data collection. The authors are very grateful to the funder of this research ‘Tanzania Comprehensive Cancer Project’, the funding has made it possible for this research to be conducted.
References
Footnotes
Contributors NS, FY, VM, CVM and OVN designed the study. FY, VM and JTJL conducted data collection. NS, FY, GK and JTJL conducted data analysis. VM and CVM reviewed the codes and categories that emerged during data analysis. NS, FY and VM developed the first draft of the manuscript. OVN is a person responsible for the overall content as a guarantor. All the authors contributed to the final draft of the manuscript.
Funding The Tanzania Comprehensive Cancer Project granted funding for this study.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.