The results are described according to Logic of Care: patientism, doctoring, shared doctoring, activity, sensitivity and individuation.
The parents usually found themselves in a state of shock and had had practically no previous experience of T1DM when the child was diagnosed with diabetes. A diabetes team consisting of a DSP, a PDSN, a dietician, a social worker and psychologist often introduced themselves during the family's first days in the hospital and gave the family a planning timetable for the hospital stay. This rapid initiation of therapy and making of appointments with the diabetes team was experienced by the family as confusing but, at the same time, as providing a sense of security. The parents were on sick leave for about a month after diagnosis. Both parents were recommended to stay at the hospital with their child during the planned admission, i.e. for 10–14 days depending on the child’s age and status. The parents described that they usually both stayed at the hospital in the daytime, but often only one parent stayed overnight.
When a preschool child protested against taking blood glucose measurements or insulin injections the parents reported that the professionals tried to cooperate with the child in various ways. Sometimes, the child did not accept, but the professional then set a limit and said that it had to be done and proceeded to inject the child.
“Because it was a period when she refused to [go with the insulin injections] …They tried to coax for a while but then stopped, and it was good because I learned that this is the line as well, now you just do it”
Some families had felt that at times the professionals were not responsive enough to the child’s opposition towards insulin injections. The child would communicate via its parents and the professionals gave in after a while and left the room whereupon the child did not want to speak or respond to the professionals any more. In this situation one mother took a decision together with the child to manage the injection by themselves in spite of having no training in giving injections but having watched the professional’s procedure. The mother and the child did it and all of the times afterwards. Both the family and the professionals were satisfied with the outcome.
The parents experienced that they had received a wonderful reception and excellent care when entering the paediatric hospital. The professionals took care of the child directly and the parents saw them as being knowledgeable and calm. Being informed about the good treatment that exists today and about the parents not having been able to prevent their child from getting T1DM was very important as they immediately got feelings of guilt and wondered if the onset would have been possible to avoid.
“The DSP and the PDSN reassured us [parent and child] by saying that we will know everything before going home, which had a calming effect” (3, mother).
The parents had the impression, when encountering the DSP and PDSN that they had a great deal of knowledge and extensive experience of diabetes care as well as a strong commitment to teaching the parents to be able to take care of their child’s body affected with diabetes. At first the DSP lectured on diabetes and its treatment and after that the PDSN took over with a similar content, but in a more practical way. The DSP and the PDSN overlapped when it came to knowledge about T1DM, which was appreciated by the families, as it became a form of rehearsal. The families who did not receive this commitment and confirmation experienced that they never understood the disease during the period of hospitalisation.
The parents felt that the DSP and the PDSN had taught them about what had happened in the child's body and what the body needed in order to be able to function in the future. The teaching continued step by step about how diet, activity and insulin affected the child's body. Both children and parents were recommended to be present, but sometimes the child, depending on his/her age, went to play-therapy. When the child was present, the professionals turned to the child with the teaching and also emphasised, with eye contact, the seriousness of having T1DM. This presentation was experienced by the parents as a support in getting the teenagers, in particular, to understand the seriousness of the situation.
” … I think she realized pretty quickly at the first appointment with the doctor when he explained to her that this is a dangerous disease… she understood that this [the disease] was nothing that she lost the next week but would have to live with it” (8, mother).
The education was experienced as being intense. Parents felt like they were being made a cram of knowledge, especially when the child was not present. However, the parents accepted this as they wanted to learn as much as possible about the disease. A few parents felt that they never really became acquainted with the diabetes team and found no structure in the learning during the hospitalisation. They became frustrated because they felt they did not understand the diabetes or the management of it at all. They were full of questions but could not formulate them. Many experienced the learning as being about what to do but not about why it should be done, which lead to their feeling of overprotecting the child after discharge. It was not until three months after discharge, when the family had an appointment with the diabetes team, that they gained a fuller understanding of the diabetes and the care.
Some parents expressed that they wished the professionals had given more active advice on how to live with diabetes at home. All the parents were struggling to be good parents; both in terms of managing the child's diabetes but also in terms of ensuring that the child's life would continue to be as normal as possible despite the diabetes.
“Sometimes it may feel easier and safer to say no [relating to food and compromise on time], but it’s all about the child’s life not about our [the parents] life”
The professionals were perceived as having a lot of patience and an open-minded attitude towards the parents when they found it difficult to absorb and understand the disease and care. Parents highlighted that the DSP often drew cartoons that made it easier to understand the teaching. All the families had received brochures and a book about T1DM to read on their own. In spite of intense days there was, nonetheless, time for reflection and discussion for the parents among themselves.
Some families found calculating the insulin dose difficult but they were then offered a template so as to facilitate in making the decision about how much insulin was needed in relation to the blood glucose value. Blood glucose was measured before and after every meal and at night. The same adherence to diet and insulin doses as during the hospitalisation was followed during the one to three months after discharge. Gradually the professionals left the issue of how much insulin the child should have in relation to blood glucose level and diet. The parents saw this as a positive signal allowing the family to gradually become more independent in their management of diabetes.
Great emphasis was placed on the symptoms of hypoglycaemia but teaching about what to do in the event of hyperglycaemia was limited. The parents expressed that problems with hyperglycaemia often arose in the evenings or during the night after discharge due to a lack of knowledge. Many children had sporting activities and the parents appreciated the teaching and advice about what to consider before and after sporting. The appointment with the dietician was based on the child’s diet before diagnosis which was then modified so as to be an appropriate diet for the child after the diagnosis. There was some discrepancy regarding the dietician’s teaching efforts but, on the whole, the parents appreciated the dietetic advice.
“…Dieticians …they are so far from reality and are so careless with food. They have their learning as well, eh … But it’s good, you should aim high”
Sometimes the children could choose a blood glucose meter and insulin pen while others only had the opportunity of choosing the colour of the blood glucose meter. Some of the parents thought it was safest to choose the same blood glucose meter and pen that had been used at the hospital. The parents reported that the choice of insulin was not discussed with the parents.
The parents expressed having felt that a spirit of compassion and caring permeated the entire hospital stay. It was encouraging to both of the parents that they were on sick leave and were at the hospital during daytime so they could support each other both in the medical caring and in their sorrow. Parents and their children very much appreciated the play-therapy and the hospital school. It was a way of forgetting the disease and the misery they felt, at least for a while.
The parents reported that after having been in hospital for 10 to 14 days they longed to go home; even if they did not feel they had the care completely under control they felt ready for discharge. Parents were informed that they could phone the DSP or PDSN if there were any problems.
Prior to diagnosis, the majority of parents had presented non-specific complaints such as enuresis or weight loss in the child. Immediately the doctor suspected that the child had T1DM, and referred the family to the nearest paediatric hospital. At the hospital the diagnosis was confirmed with new blood samples and the first information about the disease was given.
According to the parents, the professionals at the ward and the PDSN taught them and their children to take care of the practical stages such as taking blood glucose measurements as well as giving and/or taking insulin injections. To begin with, the professionals showed them how to do it and the child and their parents watched. After the family had practiced giving injections using an orange, the parents pricked themselves in the finger to take blood glucose measurements and injected sodium (NaCl) into their stomachs. Some parents pointed out that the professionals never asked if they were afraid of injections, they just assumed that the parents would be able to inject themselves.
“Today it’s dad’s turn to try and inject himself in the stomach [said the PDSN]… Well, you couldn’t back down so it was just to go ahead and do it and it was all right”
The parents reported that the professionals gave the injection to the children until such time as they either felt ready to inject themselves or their parents were ready to inject them after some boosting and encouragement. The children either injected themselves immediately or it could take days or weeks until they felt ready to inject the insulin by themselves. In the case of the preschool children it was often the parents who took the blood glucose measurements and gave the insulin injection to the child.
The parents told of how, before discharge, parents and children over 10 years of age had a kind of examination of their acquired knowledge and skills, answering a questionnaire and discussing the answers with the PDSN. Another way of evaluating was when the PDSN asked the family what they planned to do the next few days after discharge and how they thought they would act in various situations that might arise.
When young teenagers objected to taking their insulin injection the professionals would try to talk them to terms by asking: “What happens in your body if you don’t receive insulin?” This treatment was appreciated by the parents as a good approach and a great way of dealing with young people.
The teaching included information that the blood glucose levels should correspond to certain values, even though some parents noticed that their child got hypoglycaemia at other values.
“Hypoglycaemia did not come until … he can be low down on the three … without having a hypo … he has even made measurements for three with no feeling of hypo. It took some time for him to believe it was a difference between being low and having hypo …”
During the first few days the families felt restricted to the ward. Gradually, they were encouraged to stay in the hospital environment for brief periods. In a dialogue with the diabetes team the appropriate time for going on a short leave was determined. For some families, this might take place at an early stage due to some kind of celebration, such as breaking-up day or Midsummer. The parents reported that such short leaves were endorsed by the DSP and the PDSN and were well planned together with the family.
The diagnosis came as a shock and the parents experienced that they were saddened by the news that their child had got a chronic disease. At the hospital, the parents described themselves as living in the moment because they wanted to learn to take care of the sick child's body but, at the same time, they felt sad inside. They had to keep up a “brave” face for their children and they only surrendered to crying when they were alone. The parents expressed that it was disappointing that there was no time for grief and shock. The social worker and psychologist included in the diabetes team had introduced themselves to most of the families but no specific appointments were planned except that they all met the social worker for a discussion of social benefits regarding the child’s chronic illness. Some parents did not feel ready to talk with a psychologist, while others lacked the opportunity.
“I felt like we put our problems in their hands and they took care of them in a nice way… it’s not just facts and figures but there’s also a concern”
Parents were quick to realise that the care of the child's diabetes required a solid structure in their daily lives but the willingness to learn about how the child's body functioned was immediately apparent.
“I asked the PDSN about how well I have to manage her disease. Must it be to 120% or if it was okay with 80% sometimes. The PDSN replied that it was okay with 80% sometimes. It was a relief”
The parents described how the dietician took the family to a grocery store and the family told the dietician about what kinds of food they used to buy. The dietician then gave them alternatives they could choose from and guided them as to what to think about when shopping. Several of the children had previously drunk a lot of milk and had eaten white bread but, on the whole, the change of diet was uncomplicated when the dietician and the family discussed, and found, alternatives.
The PDSN had informed the teachers and pupils at the child's preschool or school about T1DM and what it means to have this disease. Furthermore, she informed them about how the teachers and pupils could help the child, both in everyday life and in the event of an emergency such as hypoglycaemia. The parents also said that often even relatives were given basic information about T1DM.
“It is important that those who take care of her in school know what to do. She can inject the insulin by herself, but you have to make sure she puts the pen on the correct insulin value… She's only seven years old…”
The parents reported that they brought the routines they had learned at the hospital back home. It was important to adhere to the same times and procedures with regards to diet, insulin and different activities. All routines had an influence on family life and made a big change in their social situation. The parents felt sad that life could not be the same as before; they could no longer do things spontaneously in their family since everything would have to be planned in advance.
“It is very focused on times … when we had guests in the evening and they called and said they will be 30 minutes late, you had to say it was okay, but it meant that our daughter had to eat before the guests arrived … so it affects the social side very much”