Demographic characteristics of participants
Healthcare providers (HCPs) comprised of 2 female registered nurses (in their early 30s) and 2 male medical specialists (one 30s and one early 40s) .
Three female and four male patients who were married and aged between 46 and 76 years were included in this study. . Education level of these patients ranged from standard seven to advanced diploma. Two female patients were housewives and one was self-employed while two male patients were retired civil servants, one was a driver and one was a businessman.
Themes Obtained in the Study
Three themes were obtained in relation to the practices and challenges of participation in shared decision-making between diabetic patients and healthcare providers at Muhimbili National Hospital (MNH). These themes are role of shared decision-making, decision aids and barriers to shared decision-making.
Role of shared decision making
Patients reported to have been engaged in conversations with healthcare providers regarding decision made on their treatments but there was no clear decision making reported from patients. Healthcare providers reported that they always engage patients with diabetes in decision-making regarding screening and treatment options. They reported that at the diabetes clinic all decisions involve physicians, nurses and patients. Following examples prove this:
“But in my experience, I engage properly my patients through conversations” (#02 D)
“Okay, a patient participates when he comes to look for service and doctor’s explanation on that particular condition or problem.” (#03 D)
“... I have to agree with my patients that retinopathy screening is voluntary. I don’t force a patient to screen because we have to discuss and agree with each other” (#01 N)
Healthcare providers reported that they like to involve patients in shared decision making (SDM) because it helps them to determine the patients’ understanding of a disease, to understand their chief complains, to adhere to HCPs’ advice on treatment, to actively participate in self-management at home and it enhances a good relationship between HCPs and patients. One of the doctor’s responses was,
“When a patient participates it helps me to know his/her chief complaint and so that I can decide on the appropriate course of action to be taken. You know diabetic patients are under self-management therefore for them it is very important.” (#02 D)
Most diabetic patients reported that they are engaged in shared decision-making and that it is very important. Participation in decision-making helps health care providers to understand patients’ preferences in the treatment options. Also, it helps health care providers to determine the type of drugs that are suitable for the patient. The following examples proved patient’s participation and its importance.
“It is important as the doctor will know which medication or drug works for me and that which doesn’t. Also, it will help him to know drugs that a patient likes and those he or she doesn’t like and why.” (#07 P)
Some few participants reported minimal or partial participation in decision-making. They reported that they do not participate because sometimes providers make decisions on their own. They also reported that only healthcare providers have the right and responsibility of deciding what is best for a patient because they are experts and patients have only to abide on what health care provider decide and plan. They said that:
“I don’t make any decision, when I visit clinic like today I just inform my doctor about my condition and he decides what tests or drugs are suitable for me” (#06 P).
Some participants expressed fear of information as one reason for not wanting to engage in discussion regarding medications which are prescribed, citing fear of uncovering adverse reactions which may affect adherence, this participant said:
Unh…it is better I’m not engaged… (Laughing) You know you may be told that the drugs you take are not safe so I, like any human being may say let me stop using them.” (# 06P)
Participants provided no report of existence of decision-making aids in this study. Healthcare providers acknowledged that they use different materials including pictures, charts, leaflets and plates, for diabetic health education to make sure patients understand appropriate diet, complications as well as treatment options. Patients are sometimes told to use other sources including Internet. However, these materials were not prepared for supporting decision-making. They said that:
“Okay, in most cases we use them and mind you that when patient comes here, he/she must read them. The important thing that makes you to use them is that some patients prefer to be taught using pictures…” (#01 N)
Healthcare providers expressed concerns that education materials that may facilitate decision-making were not sufficient at the clinic. These materials are usually donated to the clinic, and neither healthcare providers nor the hospital management were involved in their preparation. They said:
“Leaflets are available, but they are scarce. They are sometimes available and the other times not as we at Muhimbili are not producing them therefore we have to request them from donors. .” (#02 D)
Barriers to shared decision-making
Some of the factors reported by participants as barriers to shared decision making included beliefs and values, time, and educational level.
Some patients indicated that they do not participate in a shared decision-making because their beliefs and values do not allow them to. They believe that healthcare providers must be respected and considered the same as local witch doctors. This makes a patient to be resistant to be engaged in decision-making and leads to partial or no shared decision-making. One patient said:
“According to our traditional values you can’t question a witchdoctor, but you have only to comply on what he directs like bringing him a cock or whatever. This applies to our professional doctors as well.” (#08 P)
Healthcare providers and patients with diabetes held that there is shortage of time for active engagement in decision making between health care providers and patients, this was attributed to high provider-patient ratio for each clinic as well as multiple tasks of providers which limit their presence in the clinic. Respondent said:
“I might have a patient who need to stay with me during consultation for at least for 15 minutes but I have to squeeze the time because of the long queue of patients who are waiting outside. ” (#03 D)
“The time to talk to a physician satisfactorily is not enough... sometimes you find there is one doctor while the number of patients waiting is big and there is t patients overcrowding….” (#05 P)
Some healthcare providers claimed that it is difficult to engage a patient with low level of education in decision-making. They insisted that patients with low education do not understand things quickly and easily, making patients in this category not to be engaged in decision-making. Therefore, low education level of some patients was used to justify one-sided decision. For example, a doctor indicated that:
“… So you have to consider the education level of your patients at times as it may be difficult for them to understand…is easy to just make decision and give treatment. ” (#02 D)