Introduction:
The burden of kidney failure is heaviest in resource limited settings (RLS). This study aimed to explore the lived experiences of kidney failure patients receiving care in one such setting, Uganda. This is the first study of its kind in Uganda and East Africa.
Methods:
This was the qualitative arm of a broader mixed methods longitudinal study. Fifty-six semi-structured interviews with 35 patients were conducted in Luganda, English or Runyankole. The interviews explored the lived experiences of patients receiving either conservative or hemodialysis management. Thematic analysis was conducted in NVivo.
Results:
Five dimensions of quality of life were explored: physical health, social health, psychological health, spiritual health and daily life. In terms of physical health, patients experienced significant symptom burden and challenges in navigating the healthcare system.
“I thought they had bewitched me, I saw myself swollen, they said that I over abuse people, I am mad [laughs], that "they bewitched her". Yet it was the kidney. I spent one month while taking herbal medicine [laughs]. Yes, I did visit them [local “witch” doctors].” 37-year-old female, non-HD
In terms of social health, patients experienced significant family support and, in contrast, limited community support. The impact of the illness on care givers was mostly negative.
“[P]eople had signed me off. Relatives, whoever would come, those abroad would ring, eh ... ‘akiriho’ [is he still alive]?” 58-year-old male, HD
Psychological wellbeing was reported to have significantly diminished. Stress and anxiety, especially over finances and the disease related life changes, were highly prominent.
“[I]’ve sold everything, my land, my cows, I have nothing left and yet this dialysis is still going on … What will I do for my other children?!” Father to 20-year-old male, HD
“[W](16)here it is worse, where it is worse, like you can’t go to the ladies you have to do it in the bucket and then you see a person carrying your stuff. It is so, it takes you back, you just feel like ah” 44-year-old female, HD
Faith was a major contributor to sustained hope. Others included; presence of children, experiencing a reduction in symptoms, and the availability and accessibility of healthcare services.
The most frequently discussed impacts on daily life arose from limitations in finances and information, such as not knowing what was acceptable to eat and missing dialysis due to lack of money for transport. Increased length of illness modified perspective often positively.
“The food! They told me which food to eat and what not to eat. But because I can’t afford, whenever I find food, when I am hungry, I eat even what they stopped me from eating.” 32-year-old female, non-HD
“[T]here are times you get to hospital and you cancel the possibility of death, just looking at someone else and you realize that they are in a worse position than you, and you’re in a much better condition and you become strong and hope for God’s mercy.” 27-year-old female, non-HD
Conclusions:
Social circumstances, personal beliefs and the duration of illness influence the lived experiences of patients with kidney failure. A multidimensional approach to care, including symptom control, financial education, and cognitive, behavioral, spiritual and educational interventions, is needed to improve patient outcomes.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.