Model | Themes/sub-themes | Participant quotes |
---|---|---|
PHRAM | Personal factors | |
Self-efficacy | Q1: “Well, [with access to an ePHR] I can find out more about my disease… [Also] I will be able to control my own condition more easily and take care of my own health… I can make better decisions about taking care of myself outside the hospital and be aware of the information in my [medical] record.” (A stage 2 CKD patient) | |
Communication preferences | Q2: “Sometimes there is discharge, swelling, etc. around my abdomen wounds, and I do not know if those conditions are not important or I must come to Urmia from another city for treatment. For example, if it is possible for me to take a photo from the wound [to share it with my doctor through an ePHR] and my doctor says whether or not I need to come to Urmia, it will be great.” (A stage 5 peritoneal dialysis patient) | |
Knowledge | Q3: “[Using an ePHR,] I can quickly access the right information. For example, I can be informed about which foods have the highest amount of potassium and how much I can consume them… or what are the side effects for a higher consumption of phosphorus in my diet?” (A stage 5 patient under hemodialysis) | |
Outcome expectations | Q4: “As a matter of fact, it [an ePHR] is very good for some patients who are in the early stages and have much stress, because they do not know much about their disease.” (A nephrologists) Q5:“ If the patient wants to go to another city to continue the treatment process and have access to the [ePHR] system, it will give them [care providers] more information [about the patient] and the patient will pay less for the diagnostic tests.” (A nurse) | |
Skills | Q6: “… very good, then I can control my health [condition]. For example, how much is my creatinine and what can I do to decrease it? It gives me all of my personal information, I can improve my care performance… my life performance will be improved [, too]”. (A stage 5 CKD patient under hemodialysis) | |
Demographics | Q7: “… Many patients are old or illiterate and this will prevent them from accessing the [ePHR] system.” (A stage 1 CKD patient) | |
Attitude | Q8: “Maybe some patients do not spend time on such things [ePHRs] or do not pay attention to them.” (A stage 5 CKD patient under hemodialysis) | |
e-health literacy | Q9: “Some patients cannot use or access the Internet and do not have enough medical information. It should be in a simple language that everyone can use.” (A stage 2 CKD patient) Q10: “… not all of them [patients] are educated. Also, some of our patients might not be able to use [an ePHR] … patients can't record everything [in the system by themselves], for example, patients can't record their CT-scan [result that] “hydronephrosis” was observed in my left kidney”, our patients can't record these types of information …” (A nurse) | |
Environmental factors | ||
Facilitating conditions | Q11: “…I'm an educated person, but, really, I don't know how to work with the internet. I think it is difficult to learn. If my daughter works with an ePHR instead of me, that will be fine because she knows how to work with it…”. (A stage 5 peritoneal dialysis patient) | |
Incentive motivation | Q12: “For example, I drink coffee or usually smoke every morning. This [ePHR] should be able to remind me or warn me … because I usually forget these things … I think if this [such feature] is available I will take more care of myself …” (A stage 2 CKD patient) | |
Social influence | Q13: “This [the use of ePHR] should be authorized by physicians and supported by them because the patient trusts her doctor……” (A care giver of a stage 4 CKD patient) | |
Technological factors | ||
Complexity | Q14: “… I think the [ePHR] system information should provide a complete explanation in simple and understandable language for our patients … but if the ePHR provides incomplete or vague explanations, the patient will be more worried than before.” (A nephrologist) | |
Perceived usefulness | Q15: “In my opinion, for each patient, we should have a specific training page [in the ePHR] related to both the CKD disease [itself] and the underlying diseases … also, it [ePHR] should be based on the level of literacy of each person, it should display an educational video, audio, or textual information.” (A nephrologist) | |
Perception of external control | Q16: “I think, only the patient should have access to the system … because it [ePHR] is a personal thing and the patient may not want to share his/her disease information with others.” (A nurse) Q17: “Because the patient's rights must be protected, the doctor and the patient must determine the level of access to the system for others…” (A nephrologist) | |
Cost | Q18: “With such a system, I may not need to make an appointment with my doctor to get advice and ask questions … this will create a problem for the doctor's earnings.” (A stage 4 CKD patient) | |
Relative advantage | Q19: “In all cases, the cost of counseling through this [ePHR] is less than the cost of face-to-face counseling. I come here from another town and one day of my life and also money is spent …” (A stage 1 CKD patient) | |
Alternative strategies | Q20: “At this moment, if patients had any questions in dialysis wards, our nurses can answer them by telephone consultation. I think the [ePHR] system will work the same way, but with the difference that the patient can ask their questions through the system.” (A nephrologists) | |
Compatibility | Q21: “I think access to this system will make our lives better, for example, our 10-year dialysis life will be 15 years … I think I will use it a lot in my daily life. For example, if this system tells us what diet we should have, it will be 100% useful.”(A stage 5 hemodialysis CKD patient) | |
Chronic disease factors | ||
Self-management | Q22: “I expect the [ePHR] system provide educational information about the [CKD] disease.” (A stage 1 CKD patient) | |
Number of healthcare settings, healthcare providers and chronic illnesses | Q23: “…Patients in the first stages [of CKD disease] need different nutritional education information than dialysis patients … The medications they take vary in different stages … Catheter type, fistula, and special care are important for dialysis patients, but early stage patients do not need this information. In the early stages [of the CKD disease], laboratory tests may be repeated every month, but in patients with end-stage [of CKD] or other underlying diseases, laboratory tests may be different and should be recorded at shorter intervals … I think that applying these features [in an ePHR system] reduces the training load of [CKD] patients for the care team staff.” (A nurse) Q24: “I have kidney problem because of my lupus disease. In my opinion, it [ePHR] should contain information about all of our related problems too … Some patients have multiple diseases and like me they may have another doctor to visit …” (A stage 1 CKD patient) | |
Access to care | Q25: “All patients do their dialysis at home after completing their training in this [peritoneal dialysis] ward. But some of them may have problems that they are not aware of or may forget our training material. So, they have to come to this hospital from their cities because we don't have another peritoneal dialysis center in our province … I think if their training is repeated through the [ePHR] system, it may reduce some of their problems.” (A nurse) | |
Preferences for self-regulations | Q26: “… the [ePHR] system reminds me "you should go to the doctor today”, or says "tomorrow or two hours later is your appointment time”, or reminds me to take my test results, this is a good thing.” (A stage 2 CKD patient) | |
Attitudes on negotiated collaboration | Q27: “I do not always have access to a doctor. I can use it [an ePHR] to send my medical records to a nephrology specialist for guidance and she can answer to my questions…” (A stage 3 CKD patient) | |
Perceived complexity of condition and treatment | Q28: “… if a patient has a problem in an emergency and this feature is in the system [messaging feature], first of all, it will lead to higher patient expectation, and we cannot respond to them all the time. Secondly, it also increases the responsibility of the system; the patients may not be able to correctly tell us their problems [through ePHR], and we may give them incorrect recommendations, or patients may not correctly understand our recommendations [given through the ePHR], and [this] may cause problems for them.” (Focus group meeting – A senior nephrologist) | |
UTAUT | Performance expectancy | |
Perceived usefulness | Q29: “… Some of our [CKD] patients are not usually alert about their problems, also about their medications. They can’t give us much information about their ongoing treatments. These patients usually get hospitalized several times and then go under the diagnostic procedures again; [for example] the patient doesn’t know that has CT [CT-Scan results] … the patient doesn’t know what medications he is currently getting, and the patient is unaware of his/her drug allergies. If all of these are recorded in such a system [ePHR], we can easily reduce the amount of patient workload, reduce their lengths of hospital stay, reduce their costs, and maybe make our healthcare system more relaxed than what it is now.” (A nurse) | |
Relative advantage | Q30: “When patients are discharged, their paper-based medical record is archived and the patient may not be hospitalized for another year. Retrieving these records from the medical records department is very time consuming and it takes time to figure out what has been done for the patient. But if this information is always made available for patients electronically [through the ePHR], we can access their medical history more quickly than usual.” (A nurse) | |
Outcome expectations | Q31: “Well, I visit a lot of patients every day. So, when a patient comes back for a visit, I do not remember their previous treatments … I think with this [ePHR] system, I do know what has been our medication therapy approach, and what have been our patient's lab result trends.” (A nephrologist) | |
Job-fit | Q32: “ I think this system provides us a time-saving tool, because patients can get answers to many of their questions through the educational section [ePHR]… we can then focus further on their care based on the information stored in their ePHR.” (A nurse) | |
Extrinsic motivation | Q33: “Using this system makes our work faster. It will also be easier for us to track and compare patients' laboratory results.” (A nephrologist) | |
Effort expectancy | ||
Perceived ease of use | Q34: “… Some of the main patient information can be entered into the system from the CKD registration system … Also, the laboratory information of our patients is available in the HIS system. I think if such information is received from these systems, it will take less time for the information to enter the [ePHR] system.” (Focus group meeting – A nurse) Q35: “Answers can be prepared for some patients' questions. For example, what is my potassium level now and what should I do? The answer should be in the [ePHR] system … Some questions can be answered immediately without the need for an on-call nurse or physician.” (A nephrologist) | |
Complexity | Q36: “If it is like the HIS system, we will enter all the information and everyone can use it easily.” (A nurse) | |
Ease of use | Q37: “It sounds interesting, we can easily guide the patients, there is no problem at all. It will be very easy for me to work with these [ePHR] systems.” (A nurse) | |
Facilitating conditions | ||
Perceived behavioral control | Q38: “The advantage of this system is that there is no need to constantly review and search patient's paper records. Also, with this [ePHR] system, it will be easier to record and access patients' information. (A nurse) Q39: “…Other medical staff can view the information, but only patients, nephrologists and nephrology ward nurses can enter the information into the [ePHR] system.” (Focus group meeting – A senior nephrologist) | |
Facilitating conditions | Q40: “… I think the level of access to the system can be determined by the doctor and the patient …” (A nephrologist) Q41: “…The patient may give us incorrect information. In my opinion, ensuring that the information in the [ePHR] system is properly understood by the patient is an important factor in its acceptance. Otherwise, the risk of transmitting incorrect information [of ePHRs] increases.” (A nephrologist) | |
Compatibility | Q42: “Well, when we connect the patient to the hemodialysis machine, we do not have immediate and accurate access to the patient's serum phosphorus and potassium levels to determine the duration of hemodialysis … by having access to the [ePHR] system, we can do our job more accurately. Also, we don't need to spend time reviewing paper-based records …” (A nurse) | |
Social influence | ||
Subjective norm and social factors | Q43: “Everything should be planned beforehand… Who will be responsible to answer patients' questions? It is possible that a patient asks a question out of my specialty. Nurses can't answer every kinds of question. There should be a resident medical doctor to be responsive to these questions… there are questions about diet or medication side effects, nurses can respond to these kinds of questions, but what about whether or not the drug should be discontinued or [what to do with] the other problems with their drugs, physicians should respond to these kinds of questions…”. (an experienced hemodialysis nurse) |