Developing and preliminary feasibility testing of an integrated primary palliative care intervention for people with a serious illness and their families in Nigeria

    Student thesis: Doctoral ThesisDoctor of Philosophy


    Background: By 2060, the highest increase in mortality associated with serious health-related suffering will occur in low- and middle-income countries. Palliative care can relieve serious health-related suffering, lower costs for the health system and families, and is an essential health service within universal health coverage. Nevertheless, in Nigeria and many other low and middle-income countries, palliative care provision has remained at the tertiary level, and lack of integration into primary care denies access to those who are most in need.

    Aim: To develop an integrated primary palliative care intervention for patients with serious illnesses and their families within primary healthcare in Nigeria, and to test the feasibility of the intervention training among primary healthcare providers.

    Methods: A sequential mixed methods design was employed, underpinned by the pragmatist approach and the Medical Research Council framework for developing complex interventions. First, a mixed-methods systematic review used a sequential synthesis design to clarify the problem theory i.e., the concept of palliative needs among patients with serious illnesses and their families in Africa. A descriptive qualitative interview study was conducted with 48 participants; people living with selected serious illnesses i.e., cancer, heart failure, tuberculosis and stroke (n=21); their families (n=15); and primary healthcare providers (n=12) from three primary healthcare facilities in Nigeria. Two online theory of change workshops were then conducted to design an integrated primary palliative care intervention, with primary healthcare providers (n=19) and specialist palliative care providers (n=9). Finally, a mixed-method study with a pre-test-post-test design and an embedded focus group discussion was used to evaluate the feasibility of the 3-day intervention training, with primary healthcare providers (n=13) from three primary healthcare centres in Nigeria. Recruitment and retention were evaluated as well as participants knowledge, attitudes, confidence and reaction to the intervention training (satisfaction, engagement, perception of intervention appropriateness, acceptability and feasibility).

    Results: The systematic review included 159 studies and found context-specific palliative care needs such as managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children’s school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual).

    Findings from the qualitative study suggested that integrated primary palliative care must consider three major themes: 1) Engaging patients and families, who have existing trust and bonds from using primary healthcare but lack the individual agency necessary for person-centred care decisions; 2) Managing patients' and families’ expectations and preferences, for an easily accessible service that prioritises opportunities for social interaction and adequate communication; 3) Addressing staffing-related issues, including development of healthcare providers to ensure an appropriate clinical response, manage interprofessional trust and ensure clear role delineation.

    The intervention theory of change highlighted: 1) the prerequisites for integration i.e. availability of specialist palliative care team and willing non-governmental organisations for referrals of complex needs, medicines access and social support needs; 2) the implementation considerations i.e. engaging patients, families and communities through street-to-street awareness and ward health committee meetings, provision of Information, education and communication materials about serious illnesses, and interprofessional palliative care training and supervision for primary healthcare providers; 3) Outcomes i.e. improved knowledge of serious illnesses, feeling heard and valued, physical and psychological symptom relief, reduced financial and caring burden. This model is based on assumptions that patients and family members understand the usefulness and relevance of the intervention and that primary healthcare providers adopt the intervention into their ways of working.

    Findings from the intervention training feasibility study showed 87% participants’ recruitment and 92% of retention targets were met at the end of the training. All who were retained (n=12) agreed or strongly agreed that the intervention is appropriate, acceptable and feasible within primary healthcare, and were very satisfied with the training. Participants’ knowledge and confidence scores increased. However, attitude scores increased, reduced and remained unchanged in five, six and one participants respectively. Attitudes became more polarised concerning morphine use, providing spiritual care, caring for the dying within primary healthcare and the ethical obligation of palliative care.

    Conclusion: Prior evidence on palliative care needs in Africa is more focused on physical and psychological domains. The novel African-specific framework of palliative care needs will be useful for comprehensively assessing the multidimensional palliative care needs of patients with serious illness and their families within primary healthcare. Wide-scale engagement is needed in Nigeria to reinforce the role of primary healthcare in the ongoing management including palliative care of patients with serious illnesses and their families to ensure an appropriate response at the primary healthcare level. The integrated primary palliative care intervention training is perceived as feasible, acceptable and appropriate. The training also improved the knowledge and confidence of primary healthcare providers to deliver the integrated primary palliative care intervention. However, there is a need to further refine the intervention training around attitudes to diverse expressions of spirituality by patients and families, managing dying patients, and safe opioid prescription within primary healthcare.

    Date of Award1 Dec 2022
    Original languageEnglish
    Awarding Institution
    • King's College London
    SupervisorFliss Murtagh (Supervisor), Matthew Maddocks (Supervisor), Kennedy Nkhoma (Supervisor) & Richard Harding (Supervisor)

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