LOS PRINCIPIOS DE LAS NACIONES UNIDAS Y EL COMPORTAMIENTO DE IRAK

The first theme-understanding ESKD and treatment focuses on two key sub-themes: knowledge and information gaps and superstition and self-interpretation. These two themes highlight the experiences of Nigerian HD patients, exposing poor information provision, lack of knowledge and gaps in both disease and treatment education, which reinforced superstitions and caused self-interpretation which was often inaccurate.

5.3.1.1 Knowledge and information gaps

Many participants demonstrated a lack of adequate information regarding the cause, treatment and possible outcomes of their condition. This resulted for most patients in raised levels of uncertainty and the need for self-interpretation to try to make sense of their condition and HD. The uncertainty associated with this condition arose from being given contradictory information, not knowing what to eat or drink and what foods to avoid, not knowing the local sources of the foods that were recommended by the healthcare practitioners (HCPs). This uncertainty, particularly surrounding a lack of adequate information, was demonstrated by some participants during the interviews when they had to pause many times to ask me the local sources of protein which they had been advised to avoid and to ascertain the possible local sources of the foods they had been advised to eat and the amount of fluid to take each day. The responses of the participants regarding knowledge of their treatment confirmed the inadequate and inappropriate information provision to ESKD patients in the context of this study was a major issue.

For one participant, the nurses rarely have the time to give adequate information on the prescribed food and drink choices. Participants felt nurses were much more interested in the patients making the necessary payments for the dialysis than having time to give them any reasonable information regarding their treatment, when information was provided it was usually at the first session, before the commencement of dialysis:

Dr Bob wrote a list of the foods and drinks I should avoid. He said they are mostly foods containing protein. They included foods like beans, milk, and many others. For the nurses immediately, you come they find out if you have paid and have the necessary materials. So, they don`t bother or have time to talk about the foods and lifestyle you should maintain especially if they had told you during the previous

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dialysis sessions. It`s like they only tell the patients before patients start dialysis (the first dialysis session /pre-dialysis). Well, if you ask them they can answer you. If you don`t ask them, they may not have the time to tell everyone (Mr J, Int. 1).

The perception of the HCPs not giving the participants details of the prescribed food and drink choices was maintained throughout the period of the study. Although some of the participants described being given information, they insisted simply telling them to avoid foods that contain protein was not enough. They often made suggestions on the need for the HCPs to provide them with printed materials on the list of the food and drink choices as demonstrated thus:

The nurses informed me to avoid any food that contains protein. They told me that that will include beans, egg, red meat, etc. They encouraged me to eat fish, and white meat. I was told to avoid any food that contains protein as it is dangerous for my health. They also highlighted the importance of me avoiding medications that are not prescribed by the doctor and the need for me to be taking the pills the doctor prescribed for me. The nurses should do more in explaining to the patients at every session of dialysis or during any contact the foods they should be eating and those they should avoid. For instance, if you are telling me to avoid foods that contain proteins, how can I know all of them? So, I think it will be better if these things can be highlighted on leaflets and explained to us in our local dialect. It will make a lot of difference for us. Simply saying avoid any food that contains protein is not really clear especially to patients who are not educated (Mr G, Int. 1).

In India my doctor referred me to the nutritionists, again …. I was even given a chart of the things I should eat or avoid. I wasn`t given such here but the only thing is that there is no organised way of doing this here and just may be when you ask they will tell you don`t eat this, don`t eat that unlike in India where there was already a plan and you are given a copy of the plan; in fact, I still have the note from my doctors in India. Down here I believe the nurses should be able to educate dialysis patients on their nutrition and lifestyle especially when they don`t seem to be compliant with the dietary regimen. To tell you the truth, the nurse is the first contact (the main contact) between a patient and the hospital. So, they should be able to tell the patient the things to avoid helping the patient (Mr M, Int. 1).

The need for a continuous reinforcement of information by the HCPs reflected participants experienced throughout the study. The assumption that patients already knew what to eat or drink and what to avoid was not helpful to the participants as summarised by the comment from Mr F thus:

Apart from the initial time when I commenced dialysis, the nurses have never given me any further information on what I should eat or avoid. Maybe they assumed that I already know and didn`t see any reason to waste their scarce time talking about that again with me. I would like the nurses to take time to explain to me the things I

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should not eat and those that I can eat especially those that are available locally and are relatively affordable (Mr F, Int. 1).

When patients have limited understanding of health information or what the HCPs are communicating to them they feel disempowered to make rational health decisions on simple actions such as deciding what food or drinks they should take. This was expressed by one of the participants that despite being informed of the prescribed food and drink choices, she could not decide how to choose foods that do not contain protein from the local food sources available to her:

The nurses and the doctors told me the kind of food I should be eating the first day I went for dialysis. They always remind me again whenever I ask them any question regarding that and the amount of fluid I should be taking but most of the time I find it difficult to know what food contains protein especially when I eat the local food I harvested from my farm (Mrs O, Int. 1).

For some other patients, there seemed to be a discrepancy in the way the HCPs provide them with information. This depends on the healthcare setting (Private or public). The public dialysis settings were reportedly more likely to give health information to the patients than the private settings, which they accuse of being only interested in money while not paying much attention to their well-being:

I was at the Park Lane Teaching Hospital and now at the UNTH and the nurses did give such information to me; meanwhile this is not done in most private establishments (private renal facilities) as they are too busy for that and are a lot more money-conscious. The private of facilities are business-oriented and they want you to keep coming (patronising them) but when you come to the UNTH, you will be educated on your nutrition and lifestyle by the dieticians. They explain this to us each time we attend the renal clinic. It is only in private settings that they do not do this. Therefore, I would want the private renal facilities to improve on (Mrs E, Int. 1).

Another participant had an opposite experience and identified that the private dialysis facilities provided him detailed information regarding his food and drink choices as prescribed by the doctors while this was not available in the public dialysis facility. He attributed this lack of information to excessive workload of the dialysis nurses in the facility, which made it difficult for them to have adequate time for patient education:

There is no further information that I was given here. When I was admitted in the other private clinic where the diagnosis was first made the nurses explained everything to me regarding the kind of food I should be eating, types of drink and the quantity and other lifestyles I have to avoid or maintain. In fact, there are leaflets containing this information in that clinic and some were pasted on the walls of the

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clinic. So here, it is only what the doctor told me that I maintain. The nurses have not been telling me anything regarding what to eat and what to avoid. I think they are too busy. You can see the number of people who are waiting here today to be put on the machine. That is how it is every time you come here (Mr N, Int. 1).

Surprisingly, some of the participants reported not being given information regarding their food and drink choices. Because of this lack of information on diet and lifestyle modifications required in this condition, Mrs C during the first interview session was more focused on adhering to the medications that were prescribed for her by the doctors. The interview highlighted that despite her daughter was a medical doctor and has been supporting her financially in her treatment cost but had not been addressing her information needs. She worried about the HCPs in the dialysis facility not giving her information even though she has been undergoing dialysis in the facility for over a year. She was overwhelmed by sense of uncertainty not knowing what the appropriate food and drink choices for her condition could be. Her voice during the conversation echoed the frustration she felt with a lack of information by the HCPs:

I have never been told or given information on the things I should avoid eating or lifestyle it was only in Abakaliki that I was educated on nutrition and lifestyle. They hardly tell me anything on all that. All I do is to keep to the medications prescribed by the doctor (Mrs C, Int. 1).

Another participant, MR I during the first interview expressed worries over the delay and lack of adequate information by the HCPs. He had consistently eaten foods that he was supposed to avoid because of lack of information regarding. Mr I demonstrated willingness and readiness to self-care if given the right information on time despite his lack of belief in dialysis as a treatment for his condition. He also suggested that the HCPs should make a list of the foods they should eat and give to the patients at every point of contact:

I strongly believe that lack of proper or adequate information regarding my diet and lifestyle is the main cause of my body always swelling and this makes me to come here for dialysis. If I am avoiding the things, I should avoid my kidneys will start getting better but I don`t always know those things. For instance, it was just yesterday that I heard that people who are receiving dialysis are not supposed to eat Okro soup. Okro soup incidentally is my favourite soup and I have been having it without being told that I shouldn`t eat it now. I was told that I should not eat Semolina and that`s also one of my favourite foods. It was only yesterday that I started eating bitter leaf soup. So, ignorance of the specific food I should eat or avoid is a major source of worry for me. I just want to know whatever I can do in my capacity to help myself even though doing dialysis is not a solution to my problem. They should write

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out the list of the foods and drinks to be taken and those to be avoided, make photocopies of it and give to the patients each time they come here for dialysis. It will go a long way in helping us (Mr I, Int. 1).

For Mr K, it was only the doctors who gave him information, the nurses did not. He rationalised the reason for this lack of information from the nurses to be either due to the amount of work they must do, since there were always too many patients waiting on the queue to be dialysed. Whereas the doctors had more time to give patients information during consultation at the renal clinic:

I was not told anything. They did not inform me about the kind of food I should be eating or those I should not eat. It was only the doctor who told me on the first day before I started dialysis. Since then, I can’t recall hearing anything of such from the nurses. Maybe they are too busy or they felt the doctor must have told me and felt the doctor must have told me and so couldn`t bother to talk about it (Mr K, Int. 1).

Another participant described a similar experience and expressed disgust at the way some nurses communicated with them, although he pointed out that other nurses treated them well with respect and dignity:

Erm….like I said the other time, the doctors are generally nice to me and they give me the details of my care and try to encourage me to comply with my treatment regimen. However, most of the nurses here show some signs of stress and aggression. I don`t like the way they talk to the patients. To be fair to them …erm there are some of them who are very good and they show you kindness and compassion and provide answers to your questions as a patient (Mr F, Int. 2).

When I interviewed some of the participants during the first interview session, their responses showed that they were not given adequate information regarding their treatment, food and lifestyle while they continued dialysis treatment. I was struck that the HCPs did not continue to reinforce the health information continuously at every dialysis session. However, during the second interview session, some revealed that nurses did provide them with the necessary information although continued to point to the doctors who were more readily disposed to do this. This reinforced the importance of using a qualitative longitudinal approach in this study, it offered me an opportunity to understand the changes or otherwise which could occur in the experiences of care of the patients. Reflexive journal field notes:

January 7, 9 and 20, 2016; April 17, 2016.

During the second interview, Mr G not only complained about the nurses not giving him enough information regarding his treatment regimen, he alleged that the nurses treated him

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and other patients in the facility in a paternalistic manner as though they have no right to know anything about their treatment. He felt “ignored”, “neglected”, “not being heard” and powerless because of his health condition. There was a clear resentment of the loss of control over his life because of the condition and being on dialysis. I did not see this as the issue with him since he had been on dialysis for just fifteen months as at the time of this second interview:

Erm, …...the doctors are a lot better than the nurses here. I’m not saying that all the nurses here are bad, no. All I`m saying is that many of them appear too stressed up and when you ask them questions, they hardly take time to explain things to you. Maybe…...maybe…erm they are too busy because of the number of people who come here for dialysis. There are those of them who still take time to give you details of the answers to any question you ask them. What I mean is that when you ask them questions, they will claim they are busy and will not answer you. Some of them still explain to me later on anyway but I would expect them to have more time to give us more information regarding our treatment. They should treat us like people who have rights. It`s not our fault that we are sick and we come here for treatment (Mr G, Int. 2).

During this second interview with Mr G, my instinct was that the nurses were too busy with their work that they did not have enough time to provide answers to his questions. From my observation, there were too many ESKD patients on the waiting list and I could hardly find a conducive room in the facility where I could conduct the second interview due to the number of patients who were present. It was possible that he was not actually ignored as he felt but I was careful not to influence what he thought or said about his experience of care by the nurses. It may therefore well be that the nurses did not realise that he felt ignored and neglected at the postponement of when to provide him with the information he required. Reflexive journal

field notes: April 15, 18 and 24, 2016.

Some of the participants in this study also reported conflicting health information by the HCPs. Giving of conflicting information to the participants could be because of poor knowledge of renal diets by the HCPs and in most cases, could result in uncertainties among the patients in the facility. It can also lead the patients to the consumption of foods and drinks that are not recommended for ESKD patients and deny them the opportunity to make effective diet decisions. For some of the participants like MR G, he recalled being given conflicting information regarding his diet by the HCPs, and how he had inadvertently depended on local foods, which he was supposed to avoid:

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Even when they tell you to avoid taking certain fruits, usually they are not clear or specific about it; orange is a fruit, water melon is a fruit and to my mind banana is a fruit. So, there should be clearer explanations. The other day I came here I asked one of the doctors on duty and he said to me “you can eat anything”. I was not