Fifteen participants, comprising nine individuals with ESKD (patient-participants) receiving haemodialysis and six informal caregivers were included in this study. The sample size was determined after achieving data saturation (40). Seven of the patient-participants were male while the remaining two were female. Duration on haemodialysis ranged from 5 months to 5 years. The youngest patient-participant was 20 years old while the oldest was 65 years old. Four of the six informal caregivers were female, and all were closely related to the patients with ESKD. Details of all participants have been provided in Table 1.
Details of patient participants
|
Name
|
Age (years)
|
Duration on haemodialysis
|
Comorbidity
|
Michael
|
64
|
5 months
|
Hypertension, diabetes mellitus
|
David
|
20
|
5 months
|
None
|
Peter
|
62
|
3 years
|
Hypertension, diabetes mellitus
|
Martha
|
28
|
3 years
|
None
|
Richard
|
53
|
3 years
|
Hypertension, diabetes mellitus
|
Daniel
|
46
|
3 years
|
Hypertension
|
Sandra
|
38
|
8 months
|
Hypertension
|
Paul
|
65
|
3 years
|
Hypertension, diabetes mellitus
|
Raymond
|
56
|
5 years
|
Hypertension
|
Details of informal caregivers
|
Name
|
Age (years)
|
Relationship to ESKD patient
|
Gloria
|
51
|
Mother
|
Margaret
|
46
|
Mother
|
Doreen
|
52
|
Wife
|
Douglas
|
34
|
Brother
|
Paulina
|
26
|
Sister
|
Eric
|
24
|
Nephew
|
Table 1: Characteristics of study Participants
|
Three main themes were derived from the analysis of the data – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Table 1 provides a summary of these themes and their sub-themes. Each of these three themes has been presented below, with relevant quotations from patient-participants, and from informal caregivers to corroborate statements from patient-participants.
Themes
|
Sub-themes
|
Motivation for initiating Haemodialysis
|
Facing life-threatening prognosis
|
Mistaken expectations of cure
|
Facing realities of haemodialysis
|
Financial demands of haemodialysis
|
Becoming a burden to family
|
Worsening quality of life
|
Considering palliative care
|
Death is inevitable
|
Desiring dignified death
|
Table 2: Themes and sub-themes
Motivation for initiating haemodialysis
Analysis of data showed that two main factors served as motivation for haemodialysis initiation – facing life-threatening prognosis and mistaken expectations of a cure. The sub-theme ‘facing life-threatening prognosis’ described participants’ expression of a full realisation that ESKD is life-threatening, especially without any form of RRT. This was mainly as a result of the clinical manifestations experienced and information gained from the renal centre. Others were also as a result of the poor prognosis of other patients with ESKD that they had met at the renal centre.
“It [ESKD] puts you in a state of fear because of the breathlessness, and blood issues [anaemia] – will I wake up the next day?” (Daniel, ESKD patient).
“Yes, we think it can cause her death. Many times, she cannot breathe at night. All the time she needs to be transfused. Looking at how emaciated and the suffering she is going through I do not doubt that this will be her cause of death…I will not be surprised” (Gloria, caregiver).
Some participants also started haemodialysis, hoping that a series of sessions would cure the disease. This mistaken expectation of a cure was the driving force for most of the initial decisions about treatment.
“I thought it [haemodialysis] was only for a few sessions and I will no longer require the treatment” (Michael, ESKD patient).
“Our understanding was that the haemodialysis is going to cure her of [the] symptoms she is experiencing” (Gloria, caregiver).
Facing realities of haemodialysis
Participants generally re-examined their health expectations and pondered the worth of haemodialysis, with its associated challenges, after receiving the treatment for some time. The theme ‘facing realities of haemodialysis’ describes this phase for participants. Expectations of haemodialysis were modified to the point where participants now hoped that their clinical manifestations would be as minimal as possible. Unfortunately, many participants felt that these modified expectations were also difficult to achieve. Some patient-participants reported that they had not noticed any improvements in their health status or quality of life even though they had been on haemodialysis for some time.
“Sometimes I have swollen leg; you can’t know where it comes from… I vomit, I go to the toilet [diarrhoea], and these are abnormal things that will not happen to any normal human being. Even though I’m doing the haemodialysis, these continue to come” (Peter, ESKD patient).
The burden of living with ESKD, including changes in health status and continuously raising large sums to finance their treatment but with little to no improvements led to feelings of despair among patient-participants. Indeed, they reported using all resources available to them to pursue treatment. Patient-participants also felt that they had become a burden to their significant others because they needed their assistance in performing activities of daily living, visiting the renal centre, or paying for the haemodialysis costs.
“They are fed up with me, they come with me to haemodialysis but they complain all the time, you see they are tired of following me here and there” (David, ESKD patient).
Informal caregivers reiterated the concerns about the realities of having their family member on haemodialysis and how onerous it is for the entire family.
“There are challenges because haemodialysis is costly. Everything is cash-and-carry and you are expected to pay without the National Health Insurance Scheme, not to talk about the cost of the [erythropoietin] injection, transportation and long hours on the machine, it is a worry” (Douglas, caregiver).
The informal caregivers also corroborated the views of patient-participants that haemodialysis was not offering any improvements in their quality of life or health status.
“She has never been well. Not a single day will this woman [patient] say ‘I feel well’. After six months of haemodialysis, there are no signs of her getting well. It is very frustrating” (Paulina, caregiver).
This led to the next theme describing participants’ perceptions regarding death and their prevailing circumstances surrounding treatment with haemodialysis.
Considering palliative care
Participants perceived palliative care as a means to provide relief from pain and other symptoms, ensuring that death does not come through endless suffering. Participants generally perceived death as an event that befalls all mankind and preferred not to expend all their resources on haemodialysis, cognisant of the inevitability of death and the devastating effect that their continuous utilisation of haemodialysis could have on their family. They also believed that, through palliative care, they could avoid or control suffering before death.
“I will opt for palliative care if that service is available for me so that I will not suffer but die peacefully” (Michael, ESKD patient).
Generally, informal caregivers were also of the view that if haemodialysis was not meeting their expectations of improved quality of life for their relatives nor guaranteeing survival, then they would not be reluctant to choose palliative care if the service is available.
“If we know the person will die eventually, I think she does not need to go through all these and lose [her] life. For me, I think that if the person cannot afford the haemodialysis, palliative care should be an option” (Gloria, caregiver).
Some patient-participants advocated that palliative care should be implemented and awareness created to enhance choosing it as an alternative or alongside haemodialysis during decision-making on treatment.
“Yes, in fact, please do that (implement palliative care). Life continues even after death, that’s our belief. So, if I’m not getting well via the haemodialysis and somebody has time to talk to me, discuss my problems and spiritual wellbeing, why not?” (Peter, ESKD patient).
For relatively younger individuals with ESKD, however, caregivers felt uneasy about being introduced to palliative care. Yet, the belief that death is inevitable made them do all that they could in order not to appear non-supportive of their relative.
“It [palliative care] can help but can you look at a young man like this one to die? What can we say? If it is the will of God, little can we do but we wish we can support him…in that case if anything happens, you know it is the will of God” (Margaret, caregiver).