The diabetes teams reported that the educational process, which aims to prepare the family for leaving the hospital, began as soon as the family was admitted. The analysis of the study created a theme "Achieving adherence to self-care" followed by five sub-themes; Creating knowledge through practice; Creating a desire among the parents and children to be cooperative; Capturing the diversity of the whole family; Achieving practical application by the medically unskilled family; Obtaining an overall picture of the family.
Achieving adherence to self-care
During the initial hospitalisation of the child, the focus of the diabetic team was on teaching the family members to administer insulin, monitor blood glucose levels, regulate diet and be able to apply this knowledge in a relevant way. It was not expected that the family members would be totally competent in diabetes management by the end of hospitalisation. During the hospital stay, equal emphasis was put on encouraging parents and the sick child to actively participate in the care. Before discharge the family ought to show that they were willing to responsibly engage themselves in the care of their sick child and that they will work for the child's best interests and in close cooperation with the PDSN and the DSP.
Creating knowledge through practice
The PDSN and nurses on the ward tried, in a respectful way, to get the family members to focus on the diabetes management education programme and to try to replace their anxiety and distress by actively taking part in the child's care.
The education programme focused on differences in diet, how the blood glucose level varied and the administration of insulin. Parents were invited to ask questions. Frequently asked questions were, what the family's daily life would look like and how things would work for their sick child at school, etc. The PDSN was engaged in each family issue and revised and enhanced the family's understanding of the disease, on the basis of these issues.
"When they [the parents] have the value of the blood glucose, I [the nurse] ask what they are thinking about (regarding) the amount of insulin dose. Even if you think, as staff, that it is the wrong amount of insulin, you let them "do" it and then you evaluate the situation together with the family. You try to give them [the tools for] reasoning." (4)
A diabetes checklist in accordance with ISPAD 2009 (ISPAD clinical practice consensus guidelines) [
27] was used for information, teaching and demonstration, as well as the practical skills the parents needed to learn. The parents did not have a copy of the checklist used by the professionals. They were expected be able to handle the insulin pen, give injections, note the effect of the insulin, monitor blood glucose levels and explain the insulin doses in relation to the level of blood glucose, activities, as well as diet. The checklist was used only by the ward nurses and the PDSN, but the PDSN had the main responsibility for implementing and evaluating it.
The experiences of the diabetes team members revealed that the hospital stay was used to cram all the necessary knowledge and skills into the parents with very little possibility of the family gaining a full understanding of how to care for their child's disease. Most team members felt sure that the knowledge given to the child and parents at the hospital would not be properly followed up once the child was back at home. The PDSN focused on the point that family members should return home with the confidence that they will be able to handle the situation and that they had the capacity to meet the demands that were to be put on them, without necessarily understanding the disease and the care of it as a whole.
"The patient and their family should not become afraid in the beginning. It is very, very important to convey a feeling of hope and give them courage. The teaching and learning must be handled at their own pace and we [the staff] must recognise their pace of doing things". (1)
The diabetes team members all tried to inspire the newly diagnosed child with a feeling of pride and to try to help them to enjoy their time in hospital. One team member thought that the equipment used in the care could be a way of inspiring such a feeling. The team member's hope was that the child would find it "fun" to come home and to show the insulin pen and the blood glucose meter to friends and relatives.
It was important to plan for the diagnosed child to return home for a short leave early in their hospital stay. Before this leave the child either should have experienced a hypo-glycaemia incident while at the hospital, which mostly occurred. In rare cases a hypo-glycaemia was provoked after being prescribed by the DSP, it depended on the circumstances. The first home leave would be for some hours, then be extended to half a day, followed by spending the night and finally a weekend at home. Besides the necessary equipment for the diabetes treatment at home e.g. blood glucose meter and dextrose, during the first home leave and also subsequently insulin, the family was given the phone number to the PDSN. This was a way for the PDSN to give the parents some security and to test whether the parents and children (depending on age) were able to use the blood glucose meter and understand the value given for blood glucose when they were away from the hospital. If the PDSN felt that there was any doubt as to the parent's capacity to take the samples or that they were unable to cope, they would ask the parents to phone in the blood glucose value they had recorded and to ask any questions they might have.
"It is important that the family convey to the nursing staff that they accept to gradually take on the responsibility [for the diabetes care]". (4)
After the period at home the parents and the child often had questions they wanted to discuss with the PDSN and ward nurses. These could be related to issues such as what food to buy, whether the child could sleep over with friends, how much the child must keep active and to any other common situations in everyday life. Advice and individual support was given which helped strengthen the capability of the family.
Creating a desire among the parents and children to be cooperative
The PDSN was the one who worked most with the family, followed closely by the DSP. These professionals were responsible for the continuity of the care. The PDSN is specifically responsible for the care of the family's needs, preferences and participation in the care of the child. The goal of the PDSN and the DSP was to establish a two-way relationship with parents and the child in the early stage of the disease. Therefore, PDSN's had planned and unplanned appointments daily, or four to five times during the family's hospital stay and the DSP's at least two appointments with the family during the same period. Both parents were encouraged, to stay at the hospital and were allowed to report sick in order to take care of their child. Siblings were encouraged to stay at the hospital so that family cohesion was maintained and the siblings could gain an insight into diabetes care. Sometimes even grandparents visited the family and were also offered information about the care of children with type 1 diabetes.
A trusting relationship between the family, the PDSN and the DSP was important due to the fact that the PDSN and the DSP were to be involved with the family for years to come. In order to achieve this relationship PDSN's and DSP's emphasised that while they were both experts in the care and treatment of diabetes they were also fellow human beings who could empathise with the emotional experiences of the whole family. This way they could form an opinion about whether the parents were really willing to take responsibility for their child's illness. Sometimes the PDSN and the DSP experienced that the family members had in fact a good knowledge and the necessary skills even though the parents had expressed the opposite. The support from the care staff was then about getting family members to trust in their own abilities.
"We are not so authoritarian. The patient and the parents are, or must be, members of the team already in the initial phase of the disease. We let the patient know that he or she is the most important person in the team". (2)
A counsellor, psychologist and dietician were often not involved in the care of the family during the initial hospital stay. However, a family had often only had one short appointment with these team members where they were informed about what support they could expect to receive from them, if the need arose at any time. At that appointment the psychologist, and possibly the counsellor, discussed the ongoing situation within the family. The counsellor always gave information regarding the state financial benefits that were available to the family. The dietician took care of any special diet requirements the family had while staying at the hospital and always met the family shortly after discharge as was often it was only then that any dietary problems became apparent to them.
Close cooperation in the form of weekly meetings, between all the diabetes team members, ensured that the team members were always up to date regarding the status of each family with a child suffering from type 1 diabetes. During the weekly meetings the professionals would update themselves and offer each other necessary support. The diabetes team members worked in close proximity with each other and had daily consultations as required.
"When its teamwork, it is important that everyone address and knows what the other team members say and do. It does not mean that you have meetings with the family along with other team members". (4)
Capturing the diversity of the whole family
Instructing the parents of children with type 1 diabetes hospitalisation was individualised and was based on the diabetes teams' own frame of reference. Each hospital's diabetes team was confident that their policies were the best and not negotiable, especially when it came to the length of hospitalisation. However, some teams expressed a positive view on outpatient care although they did not enforce it that much. The instructing was tailored to each family's individual needs and, to some extent, the child's age. There was no definite line of demarcation for when a child was able to participate in its own diabetes care, but experience had shown that most often children at around the age of ten years wish to take part in their own care. It was experienced that the child's self-esteem increased when they were given the responsibility for blood glucose monitoring and the administration of insulin. For children under the age of ten, the parents were the focus of the education programme although the children were involved as well. For teenagers the focus of training was on the young people themselves but still the parents had the primary responsibility. Teenagers often acquired knowledge rapidly but for them the implementation was more difficult. The diabetes team sometimes separated the teenager and parents in recognition of the desire by young people to be independent. The diabetes team emphasised the importance of teamwork within the family.
"We [the staff] want them [the family] to be part of a team. Teenagers should not have to take all the responsibility themselves. They need support from their parents". (3)
In families where parents were divorced, both biological parents and step-parents were expected to take care of a child with type 1 diabetes, in order that they should fully understand the disease and the treatment. In these cases, both families were involved in training that took place during the hospitalisation of the child. The child's best interests were at the heart of the matter, the intention being that both the biological and step-parents would achieve the desired level of knowledge and skill in handling a diabetes sick child in the greater family.
"Everyone is informed - both the old and the new family". (4)
The education programme was identical for both Swedish and non-Swedish speaking families. One problem noted was that it could be difficult to train immigrant families due to their sometimes specific desires and when an interpreter was required. In such situations the checklist had to be completed while the interpreter was present and the time available was sometimes too short for the family to learn at their own pace.
Achieving practical application by the medically unskilled family
The home leave schedule must be followed by all families and all areas of the checklist "ticked off" before the child is discharged. The checklist had two functions, namely the acquisition of practical and theoretical knowledge as well as material for evaluation. The experience of the results of parent training was that most families had, through instruction, gained an insight into the situations that could arise for a child suffering from type 1 diabetes and had learnt to apply their knowledge even when they do not fully understand the ramifications of what they are doing. The PDSN's experienced that this "rule based knowledge" was limited, and that knowledge and the ability to apply knowledge in a relevant way are two different things. Many tools available for diabetes care remained unknown to the parents. The evaluation function involved testing the parent's theoretical knowledge by asking them questions in order to verify that the parents and the child had acquired the knowledge the PDSN advocated. Another task was to verify that the parents had the ability to perform certain aspects of self-care. One example was to explain what ketones (ketoacidosis) are, where they come from and how to take care of a child in such a situation. Another example to verify the forward situation was to ask the family to talk about their plans for the coming days after their discharge from hospital, e.g. if the child was participating in any sport or if the family was planning a vacation. It was a way to find out how the family members were thinking and the reasoning behind their decisions. If the PDSN experienced that there was some uncertainty in their reasoning, she called the family in the evening or the day after discharge, to make an extra check, so that the child did not get caught up in an unsuitable situation. As a follow up method one of the PDSN's used a knowledge based test comprised of 30 questions in which all the questions should be answered by the parents and also the child if it was over ten years of age. Afterwards the PDSN discussed the answers with the family and filled in areas where knowledge was either incomplete or missing.
"Just because you have the knowledge, it is not certain that you can put your knowledge into practice". (3)
Obtaining an overall picture of the family
The DSP's and PDSN's, implied that they had genuine concern for each family where diabetes was present and a desire to get to know the families. The overall picture of the family was achieved by observation of the family's non-verbal communication i.e. the parent's body language and how secure the parents and the child appeared to be in using the knowledge and skills they had been taught. Another way of achieving an overall picture of the family was to get to know them by discussing their daily life and interests before their child had become ill, with the purpose of being able to offer the best care for each (individual) family.
"Children's well-being reflects how parents cope with the disease and care". (4)
Did the parents appear worried, how was their behavior towards each other when being discharged from the hospital, were all important points to observe. Such subtle signs guided the professionals about how comfortable the family really was with the burden of care they were about to bear.
"It can be both words and when I [the DSP] see how the family is. Are they looking nervous and (do they) look at each other, and so on. It is like, a feeling". (2)
After a child's discharge, the PDSN was available on the phone during daytime for families to call and the diabetes nurses on the ward were available at nights and weekends.