Demographic profile of participants
The results were obtained from interviewing 15 parents of children with CKD. Nine of them were mothers and six were fathers. Seven parents had two children and eight of them had one child. Four parents had primary education, two held a high school diploma and nine of them had bachelor’s degrees. The duration of a child’s illness ranged from 7 months to 12 years.
Categories
Two overarching categories of “improper behavior of personnel” and “unprofessional performance of personnel” were extracted from data. The category of improper behavior of personnel” had sub-categories of ‘staff aggression” and “staff indifference”. "Disturbed interaction", "poor patient care", and "poor skills of personnel" were considered as the sub-categories of "unprofessional performance of personnel" (Table 1).
Table 1
Categories, subcategories and primary concepts of the study.
Categories | Sub-categories | Primary concepts |
Improper behavior of personnel | staff aggression | - Health professionals’ irritability - Non-clinical staff short temperedness |
staff indifference | - Inattention to parents’ awareness - No attention to parents’ concerns |
Unprofessional performance of personnel | Disturbed interaction | - Lack of providing information to parents - Lack of easy access to the doctor |
Poor patient care | - Ignoring patients' problems - Lack of providing care in a timely manner |
poor skills of personnel | - Improper diagnosis and treatment by some physicians - Poor skills of some nurses - Poor skills of some non-clinical personnel |
Improper behavior of personnel
Staff Aggression
Health professionals’ irritability
Participants mentioned doctors’ anger as a communicating obstacle in hospital. Some parents said that they were afraid to ask them questions about their child’s condition. Participant 6 said:
“…my husband keeps telling me to ask his doctor about his condition to see how it’s going. I told him, I can’t ask his doctor much; he gets upset so easily. Actually, that’s how he is. I can’t ask him much…” (P.6)
Some parents complained about inappropriate behavior by some nurses. This is how one of the parents described her experience in this regard:
“…I asked her (my daughter’s) nurse a question, she did not answer me and got angry. She told me “I do not know anything about your child, just ask her doctor…” (P.1)
Non-clinical staff short temperedness
Some parents were upset with non-clinical personnel such as housekeepers. One of the parents mentioned:
“… my son was eating something, a bit of his snack dropped on the floor. The housekeeper got mad and yelled at him...” (P.6)
Staff Indifference
Inattention to parents’ awareness
Participants voiced that some of the physicians paid no attention to parents’ level of understanding with medical terminology when answering their questions. Participant 3 voiced:
“…The doctor said: ‘Mr. …, we would give your child Albumin, his cholesterol level has gone up and his glucose has gone down.’ He thought I was a doctor like him or I was one of his colleagues. And I was stumped and said thanks Dr. … later I would wonder: ‘what’s glucose, what’s cholesterol...’ (P.3)
No attention to parents’ concerns
A few of the participants noted that some doctors and nurses refused to answer parents’ questions and ignored their concerns. One of the parents stated:
“… The pediatric resident told us to take lab results to my professor urgently. He should see this immediately… The professor was at a conference. It was winter. I was really worried and sat in front of the conference hall in the yard for one and a half hours. After the conference was over, the professor came out. I said, ‘dear professor, this is my kid lab report … the resident said you should see this…’ He didn’t take a look at the report and said, ‘The resident should read the lab report for me and I’ll give the answer to him, not to you…” (P.7).
Unprofessional performance of the personnel
Disturbed Interaction
Lack of providing information to parents
In this study, some participants stated that they were not provided the necessary information about their child’s disease and their treatment process. This unawareness made it difficult for parents to make decisions about their child’s treatment and caused them great anxiety and concerns. A mother shared her experience as follows:
“They gave me a brochure and it’s just some simple information about the disease. I asked my child nurse to give me some information about her diet, activities, etc. The nurse told me to check out the internet, you can find everything online” (P.6).
Lack of easy access to the doctor
According to the participants, it was extremely difficult to visit the attending doctors in the hospital. Some of them voiced that the residents and interns come and visit the patients. Sometimes, if we have questions about our child’s condition, we have to wait several days to see the doctor. One of the parents stated:
“It’s been 3 days now I haven’t seen her doctor yet. Some other doctors came and saw my kid. When I ask them ‘how I can visit her doctor. They just say, he will be here any minute’...” (P.13)
Participant 7 shared her experience as follows:
“His doctor referred us to a doctor in Tehran. We passed through a Herculean task to see the doctor. At first, a resident visits my child, then a surgeon saw him. It took us about 2 hours until we finally reached the doctor…” (P.7).
Poor Patient Care
Ignoring patients' problems
Some of the parents experienced poor quality of patient care in the hospital. They complained that their child problems were ignored by some of the healthcare providers. A mother stated:
“… I said to the nurses that my son wasn’t feeling all right at all and asked them to come and check on him. Once my son felt extremely bad and started having a seizure… I shouted ‘someone please help me…’” (P.1)
A father shared his experience as follows:
“… My wife shouted ‘oh, God, my child died, someone please help him.’ I fought the security man, he didn’t let me in. I rushed into the department. They checked his blood pressure; it was 4. I said, ‘for God’s sake, we are here since this morning; Sister, you didn’t even check on him.’” (P. 5)
Lack of providing care in a timely manner
Some participants complained about the lack of timely care services and medical interventions based on previous scheduling, as one of the parents stated:
“… They told us to be here at 8 in the morning for surgery. We stayed in a hotel the night before and went to the hospital early in the morning. We sat in the waiting room until 1 PM. My child was sitting there with an empty stomach all that time. The doctor finally showed up at 1…” (P.7).
Poor Skills Of Some Healthcare Personnel
Improper diagnosis and treatment by some physicians
Some parents were dissatisfied with the primary inappropriate diagnosis and treatment by some physicians. The parents talked about their experience as follows:
“… She was being under her doctor’s supervision for two years. The other day, I saw that her eyes had become sunken and her body had been terribly dried. We are here now and the doctor said the dose of her medications has to be adjusted before she discharges home…” (P.6).
“… His feet were swollen little by little, his hands, his face, and every part of his body was swollen; he had become like a ball. Then, we took him to the clinic. They said ‘it is because of his cold and you don’t have to worry about it. It will be OK’. He got worse and hospitalized…” (P.11)
Poor skills of some nurses
Some parents were disappointed with the poor performance of nurses that had caused pain and discomfort in their children. Regarding this issue, Participant 13 stated:
“When we were in the emergency department. A nurse tried to insert her IV catheter, she tried several times but didn’t succeed. She still wanted to try one more time. I said, Oh! ma’am, you made a lot of holes in my child’s hand. Please, ask someone else to come.’” (P.13)
Poor skills of some non-clinical personnel
Some parents complained that incorrect laboratory test results and poor performance of radiology staff caused them extreme anxiety. Participant 5 and 7 describe their experience:
“… After I got the lab results. Laboratory technician told me, one of his results was too high. We were under great stress because of this test result. We saw his doctor and re-checked the test...It was 83 and the doctor said it wasn’t high at all…” (P.5).
“After surgery, they moved him to ICU. Then, the doctor came and ordered radiology imaging. After the imaging was done, they gave the image to the doctor. He said it didn’t show anything. He said they had used –I don’t know– too little or too much of rays. He got upset and said imaging should be repeated…” (P.7).