No money, no treatment, no life : the lived experiences of haemodialysis patients in Nigeria

Background: Chronic kidney disease is one of the major health challenges across the world, and a silent killer of Nigerian people because they can’t pay for life saving treatment which has been available for over 30 years. People pay for their own haemodialysis (HD) treatment without any government or healthcare insurance-based support system. Studies have explored the lived experiences of dialysis patients in other parts of the world, where governments support the patients with the cost of care, there is no evidence that reports the lived experiences of what it means to be a dialysis patient in Nigeria. It is important to expose the experiences of HD patients living in a healthcare system where there is unequal access to treatment; where factors such as culture, cost, family and dependents needs influence and affect compliance to treatment. The aim of the study was to explore the experiences of CKD patients receiving HD in Nigeria. Methods: Seventeen eligible HD patients were recruited (5 females and 12 males). A qualitative longitudinal research approach was used in the conduct of the study over a period of seven months. Semi-structured interviews were conducted in three waves (1, 4 and 7 month) while a reflexive journal was kept through the period of the study and was used in the data analysis. All the interview data were analysed using framework analysis approach. Following the first interview, summary of the interview transcripts was sent to the participants for confirmation before the second and the third interviews. The transcripts of the three interviews were analysed and presented as the themes. Findings: This study exposed the unique experiences of people living with ESKD in Nigeria, reported as ‘death sentence’. Those who the money to access dialysis services had survived longer while those who had no money died early. However, that survival came at a price, often the family, friends and even whole villages would sell assets to fund short term dialysis treatment. This was unsustainable and resulted in increased poverty for the families and the dialysis patient, who ultimately died due to irregular and sub-optimum treatment. Decisions to attend dialysis sessions or adhere to treatment regimen was influenced by cultural practices/societal norms, costs issues, geographical barrier, family needs and religion. Lack of accurate information on conservative management (where there would be no financial gain for the health care facility) forced patients to make decisions to commence dialysis, resulting in early death due to inability to sustain the cost of treatment. Conclusion: Healthcare practitioners need to provide accurate information on conservative management to enable patients to make informed choices over their lives. They should be discouraged from selling all they have to pay for treatment, stripping themselves and their families of meagre resources, for very little gain, and health policy should support funded HD programmes.