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Palliative Care Challenges in Nigeria: A qualitative study of interprofessional perceptions

  • Ashti Doobay-Persaud
    Correspondence
    Address correspondence to Ashti Doobay-Persaud, MD, Departments of Medicine and Medical Education, Feinberg School of Medicine, (A.D.P), Division of Hospital Medicine, Northwestern University, 710 N. Lakeshore Drive, Suite 800, Chicago, IL 60610, USA.
    Affiliations
    Departments of Medicine and Medical Education, Feinberg School of Medicine, (A.D.P), Division of Hospital Medicine, Northwestern University, Chicago, Illinois, USA

    Center for Global Health Education, Havey Institute for Global Health, Feinberg School of Medicine (A.D.P., D.S., O.F., N.P.,), Northwestern University, Chicago, Illinois, USA
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  • Daniel Solchanyk
    Affiliations
    Center for Global Health Education, Havey Institute for Global Health, Feinberg School of Medicine (A.D.P., D.S., O.F., N.P.,), Northwestern University, Chicago, Illinois, USA
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  • Oriana Fleming
    Affiliations
    Center for Global Health Education, Havey Institute for Global Health, Feinberg School of Medicine (A.D.P., D.S., O.F., N.P.,), Northwestern University, Chicago, Illinois, USA
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  • Nikhil Patel
    Affiliations
    Center for Global Health Education, Havey Institute for Global Health, Feinberg School of Medicine (A.D.P., D.S., O.F., N.P.,), Northwestern University, Chicago, Illinois, USA
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  • Denise Drane
    Affiliations
    Searle Center for Advancing Learning and Teaching; Program Evaluation Core (D.D.), Northwestern University, Evanston, Illinois, USA
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  • Joshua Hauser
    Affiliations
    Section of Palliative Care, Departments of Medicine and Medical Education, Feinberg School of Medicine, (J.H.), Division of Hospital Medicine, Northwestern University, Chicago, Illinois, USA

    Jesse Brown VA Medical Center (J.H.), Chicago, Illinois, USA
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  • Ann Ogbenna
    Affiliations
    College of Medicine (A.O.), University of Lagos, Lagos, Lagos, Nigeria
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Open AccessPublished:October 13, 2022DOI:https://doi.org/10.1016/j.jpainsymman.2022.10.002

      Abstract

      Context

      Palliative care awareness, education and practice vary widely across global health systems, especially throughout low- and middle-income countries such as Nigeria. Unfortunately, qualitative investigations into the context, experiences and challenges of Nigerian health care professionals providing palliative care in these settings are still underrepresented in the literature.

      Objectives

      The aim of this study was to better understand the perceptions of palliative care providers in Nigeria.

      Methods

      The authors conducted an online survey of health professionals caring for patients with palliative care and end of life needs. Survey participants were recruited via convenience sampling from a palliative care training program in Lagos, Nigeria.

      Results

      27 palliative care program participants (12 physicians, seven nurses, four pharmacists, two psychiatrists and two physiotherapists) responded to the two-question survey. 39 free text responses were collected and analyzed. A majority (33%, n = 13) of responses reported challenges associated with caring for patients with cancer. Suboptimal pain management was the second most common response type (18%, n = 7). Other significant responses included caring for patients with comorbidities (13%, n = 5), patients seeking spiritual care (8%, n = 3) and patients who were unable to afford standard treatment (5%, n = 2). Uncategorized responses (23%, n = 9) included experiences caring for patients with injuries sustained in military operations and COVID-19, among others.

      Conclusion

      These results provide valuable insights into the palliative care experiences and challenges of an interdisciplinary set of health care practitioners providing palliative care in Nigeria. Further research is needed to elucidate the facilitators and barriers of delivering palliative care in similar settings.

      Key Words

      Key Message

      Our study provides an insight into the clinical experiences of an interdisciplinary set of health care professionals practicing palliative care and underscores the multifaceted array of clinical challenges in Nigeria. As palliative care training and delivery programs become more widespread, understanding the clinical context is crucial for policymakers and educators.

      Introduction

      Palliative care is an approach that is chiefly characterized by the focus on providing holistic care to patients, and their families, to improve their quality of life and alleviate suffering associated with chronic or incurable illnesses.
      • Radbruch L
      • Lima LD
      • Knaul F
      • et al.
      Redefining palliative care—a new consensus-based definition.
      In Nigeria, the clinical concepts at the heart of palliative care have been discussed since the early 1990’s, however there continue to be too few integrated palliative care training and service programs across the country today.
      • Chukwunyere ND
      Palliative care: the Nigerian perspective.
      • Ogunkorode A.
      Global perspectives on palliative care: nigerian context.
      • Onyeka TC.
      Palliative care in enugu, nigeria: challenges to a new practice.
      • Shambe IH.
      Review of article palliative care in Nigeria: challenges and prospects.
      Training has been identified as an aspect that is critical to the improvement of implementation and access of palliative care services in Nigeria and throughout the world.
      • Chukwunyere ND
      Palliative care: the Nigerian perspective.
      ,
      • Ogunkorode A.
      Global perspectives on palliative care: nigerian context.
      ,
      • Mason S
      • Paal P
      • Elsner F
      • et al.
      Palliative care for all: an international health education challenge.
      • Rhee JY
      • Garralda E
      • Torrado C
      • et al.
      Palliative care in Africa: a scoping review from 2005–16.
      • Stoltenberg M
      • Spence D
      • Daubman B-R
      • et al.
      The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America.
      However, designing successful palliative care training programs relies on a thorough understanding of the regional and cultural contexts that affect health systems and care delivery.
      • Stoltenberg M
      • Spence D
      • Daubman B-R
      • et al.
      The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America.
      Unfortunately, qualitative palliative care research describing the experiences and challenges faced by Nigerian clinicians providing end-of-life care is underreported.
      • Agom DA
      • Onyeka TC
      • Iheanacho PN
      • et al.
      Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review.
      To address this gap, this paper will investigate the current clinical experiences of providers who care for patients requiring palliative care services and the barriers they face when trying to provide care. The aim of this study was to better understand the perceptions of palliative care providers and the context of care in Nigeria.

      Methods

      Setting and Participants

      We conducted three three-day online training conferences in April 2021 at Lagos University Hospital in Lagos, Nigeria based on an adaptation of the Education in Palliative and End of Life Care curriculum.
      • Hauser JM
      • Preodor M
      • Roman E
      • et al.
      The evolution and dissemination of the education in palliative and end-of-life care program.
      A convenience sample of participants were invited by email to complete the survey prior to the second of the three trainings to inform the curriculum for the last two days of training.

      Survey Design

      Two optional open-ended survey questions were designed by global health and palliative care faculty from Northwestern University and University of Lagos. The questions were added to a pre-training survey that also included basic demographic questions as well as assessments of knowledge, skills, and confidence in various topics in palliative care. Participants received a survey link via email prior to attending the training. The questions were spread over two pages and respondents were able to review and amend their answers before submitting.
      The first question was: “Please describe a recent case where you had to apply palliative care skills” The second question was: “Please describe a recent case where palliative care support may have been needed but was not available or used.”

      Data Collection and Analysis

      Responses were saved, de-identified and aggregated for analysis. Manual thematic content analysis was used to analyze responses using a deductive coding approach.
      • Saldaña J.
      The coding manual for qualitative researchers.
      Author ADP reviewed all free text responses line by line and developed an initial set of index coding categories. Two researchers (ADP, OF) then independently reviewed all the responses line-by-line using these index codes and assigned codes for every response as well as pulling exemplary quotations for each coding category. An additional category was also created to identify emergent themes that were not included in the codebook which were defined as common themes that were not already represented in the index codes. To ensure inter-coder reliability, any discrepancies were discussed and resolved. A third researcher (AO) then independently reviewed all responses, performed another round of coding and resolved any outstanding coding disagreements and/or discrepancies. Finally, all researchers (ADP, OF, AO) reviewed and confirmed the identified themes and representative quotations. Throughout the collection and analysis process all researchers engaged in personal and epistemological reflexivity techniques – including continually reflecting on their own clinical experiences and biases.
      • Ramani S
      • Könings KD
      • Mann K
      • et al.
      A guide to reflexivity for qualitative researchers in education.
      ,
      • Rankl F
      • Johnson GA
      • Vindrola-Padros C.
      Examining what we know in relation to how we know it: a team-based reflexivity model for rapid qualitative health research.
      Themes were considered ‘major’ if they appeared with a high frequency, they were considered ‘minor’ if they appeared with a lower frequency but had previously been reported as concerns or barriers.
      • Onyeka TC.
      Palliative care in enugu, nigeria: challenges to a new practice.

      Results

      A convenience sample of 27 program attendees from a variety of professional backgrounds responded to the survey (Table 1). Participants included clinicians from major hospitals across Nigeria, including Lagos University Teaching Hospital, Jos University Teaching Hospital and University College Hospital, Ibadan. Out of 54 possible free text responses (two questions per participant), a total of 39 responses were received and subsequently analyzed. This represents a 72% response rate among program attendees that responded to the survey.
      Table 1Characteristics of Survey Participants
      Type of Health Professional Number
       Physician12
       Nurse7
       Pharmacist4
       Psychiatrist2
       Physiotherapist2
      Three major themes and two minor themes were identified (Table 2). The first major theme was the challenges of caring for patients with cancer (33%, n = 13). Respondents frequently cited challenges associated with caring for reproductive neoplasms, as well as late stage diseases:“A 75-year-old man with prostate cancer with widespread bony metastasis…[h]e received radiotherapy and 2 weeks after could not walk.”“…[A]dvanced cervical cancer in a 36-year-old woman…with renal impairment.”“…[A] colleague's sister cancer (late stage)…good pain control till she voiced goodnight within the last hour of her death. It wasn't easy…”
      Table 2Major and Minor Themes from Free-Response Survey About Palliative Care
      Major Themes• Caring for patients with cancer (n = 13)

      • Inadequate pain management (n = 7)

      • Caring for patients with comorbidities (n = 5)
      Minor Themes• Patients seeking spiritual care (n = 3)

      • Caring for patients who cannot afford treatment (n = 2)
      Second, trainees also reported that suboptimal pain management (18%, n = 7) was a significant concern. Trainees described how the lack of access to pain control medications, specifically opioid analgesics, leaves many patients in significant discomfort due to uncontrolled pain:“I managed a known sickle cell disease patient with vaso-occlusive crisis. Her pain was sub optimally managed until I intervened by adding an opioid…”“Lack of morphine to treat pain.”“…[A] patient who was given diclofenac for pain but she didn't get relief, so I educated her about the option of oral morphine…and she felt better.”
      Caring for patients with comorbidities (13%, n = 5) was the last major theme identified. Clinicians described the challenges associated with providing palliative care service for those patients with dementia and other mental health concerns:“A patient with two years history of colorectal carcinoma, with dementia. Had had two episodes of home fall, each needing surgical intervention.”“Managing a person with mental illness with comorbid physical conditions”“Middle aged lady with terminal cancer and severe depression.”
      Patients seeking spiritual care (8%, n = 3) was identified as a minor theme. Responses included situations where patients eschewed palliative care for spiritual guidance:“A case of cervical cancer, the patient and family vehemently refused palliative care and would rather go to their church for prayers and spiritual support because they believed it was a spiritual attack”“I had a 12-year-old girl who was admitted due to severe pain. Her pain medication moved from moderate to severe. There was still no relief. The highest dose for severe pain applicable to her age was administered and the relief was only temporary. The parents then decided to now seek spiritual assistance since all medical assistance proved abortive.”
      Another minor theme described by respondents was associated with patients who were unable to afford standard treatment (5%, n = 2) and consequently did not receive support or care:“Not all components are available and when available very expensive and out of reach for the patient.”“Patients who are unable to afford treatment and have to deal with their problems alone.”
      Uncategorized responses (23%, n = 9) included a range of experiences, such as caring for patients with COVID-19 and combat injuries sustained in military operations:“As a medical officer in the barracks, some of my patients are soldiers with ailments which are aftermath of their operation in North Eastern Nigeria. They have palliative care needs but little or none is available for them.”“Isolation center for COVID-19”“Brought in dead patients”

      Discussion

      Three major themes, two minor themes, and other assorted barriers were identified. The major themes included caring for cancer patients, challenges with pain management and caring for patients with comorbidities. One of the largest barriers to providing comprehensive palliative care worldwide is the lack of certified trained health care professionals within structured healthcare setting.
      • Centeno C
      • Garralda E
      • Carrasco JM
      • et al.
      The palliative care challenge: analysis of barriers and opportunities to integrate palliative care in europe in the view of national associations.
      ,
      • Cai Y
      • Lalani N.
      Examining barriers and facilitators to palliative care access in rural areas: a scoping review.
      Nigeria, along with many other low- and middle-income countries (LMICs), is currently facing a shortage of palliative care providers.
      • Agom DA
      • Onyeka TC
      • Iheanacho PN
      • et al.
      Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review.
      Nigeria is classified as a region with ‘isolated palliative care provision’ by the Worldwide Hospice Palliative Care Alliance and the World Health Organization. This designation is used for regions that exhibit patchy palliative care activism; large proportion of donor-dependent program funding; limited morphine availability; and relatively few palliative care services compared to the size of the population.
      • Rawlinson F.
      The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients.
      ,

      Worldwide Palliative Care Alliance. Global atlas of palliative care at the end of life. 2014. Available at: https://www.thewhpca.org/resources/item/who-global-atlas-on-palliative-care-at-the-end-of-life. Accessed October 14, 2022.

      Designing and implementing effective palliative care programs will therefore be dependent on understanding cultural and clinical contexts that affect local healthcare systems.
      • Stoltenberg M
      • Spence D
      • Daubman B-R
      • et al.
      The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America.
      The theme identified by the majority of healthcare professionals was difficulties caring for patients with cancer, which is a well-documented challenge in Nigeria and throughout the world.
      • Agom DA
      • Onyeka TC
      • Iheanacho PN
      • et al.
      Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review.
      Comprehensive discussions about specific barriers to palliative cancer care in Nigeria are limited, however cultural stigma associated with palliative care services, as well as issues surrounding timely referral pathways have been identified as obstacles to effective and efficient palliative cancer care in other settings.
      • Aldridge MD
      • Hasselaar J
      • Garralda E
      • et al.
      Education, implementation, and policy barriers to greater integration of palliative care: a literature review.
      • Grant L
      • Downing J
      • Luyirika E
      • et al.
      Integrating palliative care into national health systems in Africa: a multi–country intervention study.
      • Hui D
      • Heung Y
      • Bruera E.
      Timely palliative care: personalizing the process of referral.
      Respondents described the inability to provide adequate pain management for their patients as another major concern. Pain is the most cited complaint among palliative care patients and the lowest rated in terms of care satisfaction.
      • Agom DA
      • Onyeka TC
      • Iheanacho PN
      • et al.
      Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review.
      ,

      Human Rights Watch. Global state of pain treatment: access to medicines and palliative care. 2011. Available at: https://www.hrw.org/sites/default/files/reports/hhr0511W.pdf. Accessed October 14, 2022.

      ,
      • Harding R
      • Selman L
      • Powell RA
      • et al.
      Research into palliative care in sub-Saharan Africa.
      Unfortunately, the responses to our survey lacked sufficient detail to pinpoint the specific barriers to opioid access. Others have argued that some Nigerian clinicians are hesitant to prescribe strong opioids due to a number of factors including false beliefs surrounding side effects, addiction and legal issues.
      • Onyeka TC.
      Palliative care in enugu, nigeria: challenges to a new practice.
      However, our findings support that inadequate pain management continues to be a major challenge and underscore the importance of program improvements and linkages across institutions, policy-makers, implementation experts and governmental bodies. Caring for patients with comorbidities was another major theme identified by respondents. A majority of respondents specifically noted challenges with dementia and other mental health concerns (80%, 4/5). In comparison with cancer-related palliative care research, there is a paucity of research on care plans for patients with comorbidities and most clinical research does not include patients with comorbidities.
      • Abu-Odah H
      • Molassiotis A
      • Liu JYW.
      Global palliative care research (2002-2020): bibliometric review and mapping analysis.
      ,
      • Smith SM.
      • Soubhi H
      • Fortin M
      • Hudon C
      • O'Dowd T
      Managing patients with multimorbidity: systematic review of interventions in primary care and community settings.
      Given that many patients who require palliative care often have comorbidities, future research should strive to include these patients.
      The two minor themes were issues with patients seeking spiritual care when they determined medical assistance lacking and financial barriers to treatment. Despite the limited number of responses in our study sample, both of these issues are frequently reported in the palliative care literature and continue to be of great concern in the provision of palliative care services.
      • Agom DA
      • Onyeka TC
      • Iheanacho PN
      • et al.
      Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review.
      There were a range of uncategorized concerns, including caring for deceased patients, as well as patients with COVID-19 and military combat injuries. Many of these issues relate to other well documented hurdles to palliative care in low- and middle-income countries and rural regions throughout the world.
      • Agom DA
      • Onyeka TC
      • Iheanacho PN
      • et al.
      Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review.
      ,
      • Centeno C
      • Garralda E
      • Carrasco JM
      • et al.
      The palliative care challenge: analysis of barriers and opportunities to integrate palliative care in europe in the view of national associations.
      ,
      • Cai Y
      • Lalani N.
      Examining barriers and facilitators to palliative care access in rural areas: a scoping review.
      Limitations of the study include the small sample size and convenience sample. Additionally, all study subjects were participants in a training program offered by a single institution. These issues may make it difficult to extend the results of this study to the larger population of palliative care providers. However, this paper adds to a growing body of research addressing cultural, social, and economic barriers underpinning palliative care development. The major findings of this study are corroborated in the palliative care literature, but there may be other barriers to palliative care that were not identified due to the small sample size. A final limitation of the study is the responses to the survey questions were relatively brief and sometimes lacking in detail. A strength of the convenience sample and collection of data just prior to the training was that identified barriers were discussed and addressed in real time during the training to provide tailored solutions.

      Conclusions

      The themes identified in this study provide insights into the experiences and challenges faced by an interdisciplinary set of health care practitioners providing palliative care in Nigeria. Practitioners who responded to our online survey reported barriers associated with access to analgesia and challenges related to caring for patients with cancer, complex comorbidities and spiritual needs. Future research should include in-depth qualitative investigations using interviews and/or focus groups to explore themes identified in this study. As palliative care training and delivery programs become more widespread throughout low- and middle-income countries, it is crucial to better understand the experiences of those providing palliative care services.

      Ethical approval

      The study protocol was approved by the institutional review board of Northwestern University and determined to be exempt (Protocol STU00214815).

      Disclosure and Acknowledgments

      Research reported in this publication was generously supported by the Robert J. Havey, MD Institute for Global Health's philanthropic funds at Northwestern University, Feinberg School of Medicine . All authors declare no conflict of interest.

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