The outcomes of ICF-CY codes
Finally, 345 concepts were extracted from the interview content, and 183 independent concepts remained after duplication, of which 171 concepts could be linked to 52 ICF-CY categories (the effective link rate was 93.4%). After the removal of the repetitive parts, there were 49 unique secondary ICF-CY codes, including 31 (63.27%) for the body function, 4 (8.16%) for the body structure, 7 (14.29%) for the activity and participation, and 7 (14.29%) belonging to the environmental factors (Table 2).
Features of health-related problems
In this study, several ICF-CY codes focused on the common themes of medical staff and parents. Overlap and difference between groups were represented through a Venn diagram of the features of health-related problems (Figure 1).
Commonality
Functions of the cardiovascular, haematological and respiratory systems. It is found that there were still some problems in cardiopulmonary, haematological and respiratory systems function after CHD surgery, especially if there were residual problems in anatomy, fatigue after exercise was common:
Sometimes my kid walk, run..maybe... about half an hour... his lips became a little bit dark and he felt tired and wanted to held in my arms. (Parent 17)
If he has residual problems, such as pulmonary regurgitation or tricuspid regurgitation, he always feel fatigue. (Medical staff 1)
Functions of digestive, metabolic and endocrine system. Medical staff and parents have said that children may be obese or emaciated after CHD surgery, which was mainly related to children's eating behavior, stomach intake and absorption.
She eat less than a normal child. She can't chew well. She chews very slowly and always wants to have a break. (Parent 10)
Usually, some are in the poor after the operation...the appetite are not good... (Medical staff 4)
Mental functions. The neurocognitive psychology of children with congenital heart disease after operation was lower than that of their normal peers.
The intelligence of my kid is worse than that of children of the same age. At least children of the same age can express themselves clearly. And they can at least calm her down. My kid can't, she can't... I brought her to the rehabilitation center...The doctor said that her intelligence might be one and a half years slower than her peers. (Parent 10)
Voice and speech functions. After the CHD operation, the ventilator may cause the children's voice disorder in a period of time after the operation.
During the follow-up, a little girl who had a CHD operation in our hospital talked to me with an weird voice. She can't make a normal sound. Then I asked her father when this voice happened like this. He said, yes, that was it after the operation, but it didn't affect her daughter drinking water and eating. (Medical staff 5)
At the beginning, when she (her daughter) just finished the operation, her voice was small... A few months later, she still couldn't speak out in her voice . (Parent 4)
Parents play a very important role in the cardiac rehabilitation stage, including stress management and disease management ability of parents. The lack of disease knowledge led to parents excessive pressure and worries that self-management affect the later rehabilitation of children.
We are worried about his recovery. Dr Zhu said that his operation was very successful, but it can't guarantee the recovery in the later stage. We are really under great pressure. We are afraid that because of some of our mistakes, some things we don't pay attention to may lead to his worse conditions. (Parent 16)
Parents are afraid to have PE classes. children after cardiac surgery always leave alone in the classroom. I always tell the parents normal activities should not be avoided. (Medical staff 2)
Health services, systems and policies. The backward medical level, especially in remote areas, can not meet the needs of postoperative rehabilitation of CHD.
In fact, when these children go back to the local area, there is lack of professional institutions to continue their rehabilitation. The local medical institutions are generally backward and the medical staff are lack of experience to treat with pediatric cardiac patients.It's better for these children to go to a higher level hospital. (Medical staff 5)
Differences in the medical staff
Wound recovery and infection. Most surgeons would pay attention to the prognosis of the wound after surgery.
In the early period of rehabilitation, I will also focus on the assessment of the incision, including whether there is infection or the poor healing of the incision. (Medical staff 4)
Self care. For children undergoing rehabilitation training, the rehabilitation therapist would focus on teaching children the skills of disease self-management and self-monitoring.
When the older child is in the second phase of rehabilitation, he has no ability to calculate his heart rate. I will tell him what it's like in exercise training and how to teach him to self-monitor in daily life. (Medical staff 13)
Differences in the parents
Movements related issues. Limb discordance can occur after some complex CHD surgery, resulting in the need for additional physical therapy.
After Glenn shunt surgery, her left limb movement was uncoordinated due to the hypoxemia during ICU. Now the recovery is very slow. (Parent 16)
Environment problems. Parents in remote areas would also be worried about the recovery of their children due to the altitude.
Because Inner Mongolia is very cold, it is said that it belongs to the plateau, so it is not very good for her circulation. (Parent 12)