The data analysis revealed that the phenomenological experiences connected with consultation-facilitated motivation to self-management of type 1 diabetes in 15- to 17-year-olds could be organized in five categories: “Consultation setting”, “Consultation conversation”, “Roles in treatment”, “Assuming consultation-facilitated responsibility for self-management”, and “Relationship in treatment” (Table 2).
Table 2: Results from data analysis
Overall category, interview themes, and observation themes and subthemes
|
Number of units
|
Category 1: Consultation setting
|
22
|
Interview themes
|
- Judgement of setting
|
6
|
- Effect on everyday life
|
6
|
1.3 Effect on motivation to self-management
|
10
|
Category 2: Consultation conversation
|
83
|
Observation themes
|
2.1. Praise
|
15
|
2.2. Conversation about other things than diabetes
|
10
|
2.3. Normalization
|
5
|
2.4. Acknowledgement
|
4
|
2.5. Diabetes-related conversation
|
15
|
Interview themes
|
- Experience of conversation
|
10
|
- Experience of communication
|
16
|
- Effect on motivation to self-management
|
8
|
Category 3: Roles in treatment
|
84
|
Observation themes and subthemes
|
3.1. Doctor
|
3.1.1. Spokesman
|
13
|
3.1.2. Authority
|
8
|
3.1.3. Judgement and guidance
|
15
|
3.2. Nurse
|
3.2.1. Calendar
|
10
|
3.2.2. Blood sugar
|
4
|
3.2.3. Advice
|
10
|
3.2.4. Devices
|
11
|
Interview themes
|
3.1. They are trying to help me
|
4
|
3.2. They are in charge
|
3
|
3.3. They are judging me
|
6
|
Category 4: Assuming consultation-facilitated responsibility for self-management
|
41
|
Observation themes
|
4.1. Acknowledgement
|
5
|
4.2. Encouragement
|
5
|
4.3. Involvement
|
14
|
4.4. Denial of responsibility
|
5
|
4.5. Initiative
|
7
|
Interview themes
|
4.1. Assuming responsibility for self-management
|
10
|
Category 5: Relationship in treatment
|
33
|
Observation themes
|
5.1. Respect
|
16
|
5.2. Familiarity
|
5
|
Interview themes
|
5.1. Relationship
|
12
|
Table 2 shows each category’s themes and sub-themes with the responding number of units.
Consultation setting
Looking across the interviews, several adolescents expressed feeling safe during consultations and that they appreciated the conversation. No interviewee expressed dissatisfaction with the consultation settings. However, the interviewees expressing satisfaction with the consultation setting gave different explanations for their satisfaction: First of all the quality of the consultation conversation and time of day for consultations, secondly the PDCU location being close to home, and finally the feeling of safety in consultation.
The conversations and relationships with practitioners were considered to have influenced some interviewees’ experiences of having diabetes. Consultation could influence their daily lives in negative as well as positive ways as illustrated in the quotes below.
It doesn’t affect how I treat my diabetes, but more how I feel, psychologically, about myself. (Boy, 17)
Even though I come there with the purpose of checking up on my diabetes they make it feel very relaxed and very “easy to live with if you only want to”, because that’s how it is really. (Girl, 17)
The interviewees’ experiences of consultations as motivating to self-management were divided. To some of the interviewees the check-up control of their HbA1c and blood sugar values since last consultation was motivating. The check-up gave the patients an opportunity for proving to their doctors and nurses that they did in fact adhere to the treatment regime. The relationship with the practitioners was mentioned as important to these adolescents’ motivation to self-management:
They don’t say “you should do this and this and we’ll see you next time”. I think that’s a really nice experience so I’m looking forward to going, because I feel like: “I’m going to show you how good I am”, exactly because I feel like I know them. (Girl, 17)
Of course, you see your numbers coming out of the pump. Then you discuss your long-term chart and it can either be green, yellow and red. Of course, if you’re in yellow and close to green, you want to move closer to green. (Boy, 17)
Some interviewees experienced that the motivation to self-management was primarily an inward need for feeling good and thus not affected by experiences in consultation. They described it as important that practitioners understood that the adolescents wanted to take care of their blood sugar level and feel normal. However, one interviewee explained that consultation-facilitated motivation was not enough for her to change her habits.
To be perfectly honest it only changes in a week or so, then you fall back in your old routines. Sometimes you are told you really must change, but you quickly go back to your everyday life where you have to think about other things. That’s why it’s difficult to actually do what they recommend. (Girl, 16)
Consultation conversation
According to the observations, the following characterized consultation conversations at the PDCU: First, the practitioners generally praised the patients for their commitment to treatment, especially while controlling the patient’s blood sugar measurements since last consultation. Second, the practitioners used part of the consultation to talk with the patients about other things than diabetes like the weather, school, friends, transportation to the hospital, the future, and hobbies. Third, at times the practitioners normalized the difficulties that patients from this age group could experience, such as following treatment plans, remembering to measure blood sugar, or thinking that it was unfair that they had diabetes. Fourth, at times the practitioners acknowledged that it could be difficult having diabetes or answering practitioners’ questions during consultation, and, finally, the practitioners generally discussed diabetes-related themes, including HbA1c, and future changes in treatment, but also other subjects of interest to this age group, e.g. alcohol intake and transfer of treatment.
All in all, the practitioners tried to help their patients by praising their efforts and acknowledging and normalizing difficulties with self-management and having diabetes. They also consistently small-talked with their patients about other things than diabetes. As illustrated in the quote below, some of the interviewees said that the conversations about other things than diabetes were important, because it made them feel like they were not just perceived as patients by the practitioners.
It becomes a bit more personal. I feel like I don’t just go see a doctor and a nurse, because they try to understand who I am as a person and I like that. (Boy, 16)
According to one interviewee, it also made sense because the things that troubled her everyday life would naturally affect her self-management. Another interviewee said that it was nicer having the practitioners tell her what to do than her parents doing so. To these adolescents, the practitioners’ interest in their lives was motivating to self-management. However, one interviewee only experienced the conversation about other things than diabetes as mere small-talk. The importance of these conversations thereby differed between interviewees.
To some interviewees, it was important that the practitioners listened to them, making them feel respected as equals in their diabetes treatment, even though their choices were not always what was best for their HbA1c level.
If they told me “you must eat in the morning or else…”, I’d have told them “I don’t think it’s okay you’re telling me that”, but I think they respected what I said. (Boy, 16)
The first time we agreed that I should try to manage it myself I just don’t think I was old enough, because it didn’t look pretty, but the advice and motivation they gave me helped me do what I do today, helping me being good enough at controlling it. (Boy, 16)
According to these statements, the adolescents experienced that their autonomy was acknowledged by the practitioners and to some interviewees this made it easier for them to adjust to the practitioners’ advice as compared to advice from their parents. However, a group of interviewees had experienced that in the past practitioners had spoken harshly to them during consultations. For most of these adolescents, this had made them less motivated to self-management.
Personally, I don’t feel like doing it when I’m told off, as compared to when they say: “we believe you can do it”. (Girl, 15)
One adolescent said, however, that it made her realize she needed to do more.
It made me sad, which they also realized, but it wasn’t because of the way they said it, it was because I hadn’t done a better job. I was disappointed with myself because I thought I was doing okay… well, it was a good kick to make me do more. (Girl, 16)
Therefore, the majority experienced a harsh tone as negative for motivation but it could also be considered motivating to self-management. The difference may depend on how the adolescents perceive their own autonomy in management.
Roles in treatment
According to the participant observations, the doctor and the nurse each had different roles in treatment during consultations.
During consultations the doctor was spokesman, meaning that they initiated the conversation, either by asking the patient what they wanted to talk about or by presenting the agenda of the conversation. The doctor also summarized the conversation for parents who had left the room during part of the consultation, though in one consultation this task was executed by the nurse. It was observed that in the consultation the doctor was an authority who decided whether the parents were to participate in the whole consultation or only in part of it. The doctor also distributed tasks to the nurse. In some cases, the patients did not question the doctor’s decisions concerning treatment changes. The doctor gave diabetes-related advice, e.g. about alcohol consumption, calmed the patients and their parents if they had diabetes-related concerns, decided, often in consultation with the nurse, how treatment should proceed, and set the date for the next consultation.
Based on the observations, the nurse’s role in consultation was to measure HbA1c and report the result, to handle the pump, e.g. printing diagrams with information about blood sugar measures and insulin administration, to adjust the pump to treatment changes, and to give advice regarding pump related problems, e.g. change of batteries. The nurse also advised patients and families about carbohydrates, transition of treatment and management of the pump, made new appointments for consultations, and invited patients to an informal youth arrangement at the hospital.
Although the observational data showed differences as to which tasks were handled by the doctors and nurses, respectively, interview data indicated that the adolescents did not differentiate between the two professions and considered them as a team. However, the adolescents had different opinions about the roles of these teams. A few interviewees explained that the practitioners were trying to help them, hence acknowledging their personal, sensitive questions, e.g. about pregnancy. Communicational relations were thereby characterized by a knowledge about the practitioners’ good intentions. Others experienced the practitioners as authorities, who had the final say in future treatment.
I feel like they know what’s the best thing to do, so I want to do what they tell me to, because I’m also counting on and hoping that it’ll help me. (Girl, 17)
To perceive practitioners as experts could be helpful in maintaining self-management tasks but also a surrender of the responsibility for self-management, thus undermining autonomy. In relation to this point of view, being praised during the conversations for their level of HbA1c was experienced as important in figuring out what the adolescents needed to do better and what they did well.
If there’s something I need to do better, they are always good at pointing out the things I’m doing good. (Girl, 17)
However, to some interviewees the practitioners’ judgement of the blood sugar diagrams and HbA1c was a negative experience because it forced them to face realities. The practitioners were also expected to tell whether or not the adolescents took care of their diabetes.
They can tell from my numbers whether things are going bad or worse and it’s just a matter of whether I understand it too and of course it’s best if I do. (Girl, 16)
It’s not like I don’t dare, I’m just nervous because I know I have to face the truths in a way and being told again: you have to do this better. (Girl, 17)
This point of view gave the practitioners a more judging role in treatment and possibly the adolescents less of a feeling of autonomy.
Assuming consultation-facilitated responsibility for self-management
Assuming consultation-facilitated responsibility for self-management was observed during participant observations. The practitioners acknowledged the patient’s problems with assuming responsibility for self-management and accepted their refusals of treatment-related changes. The doctors had conversations with their patients about becoming wiser than the pump. One doctor recommended patients to think independently in relation to the pump instructions regarding insulin administration, whereas another doctor advised a patient to follow the pump instructions more carefully. The practitioners involved their patients in the consultation conversation by asking them questions, e.g. regarding future treatment. Parents were not always asked to leave the consultation room and only left if the doctor asked them to. In some cases, the parents or the nurses withdrew the patient’s responsibility for treatment by changing the setting of the pump without the patient’s knowledge. The practitioners also told one of the patients that her parents should be involved in a hospitalization, when the patient said she wanted to handle it on her own. In seven consultations, the patients assumed responsibility for self-management, in two cases the parents were reproved for suggesting changes to future treatment, both times in connection with parents having been asked to leave the consultation for a period of time. The practitioners generally supported the adolescent’s suggestions for assuming responsibility, e.g. going to future consultations without their parents, but not in the case of handling hospitalization alone, however.
Overall, the practitioners supported their patients in taking over responsibility for self-management from their parents, for instance by inviting the patients to participate in the conversation and, in some cases, by managing part of the consultation without their parents’ participation. Most interviewees had opinions about their parents leaving the consultation room. One interviewee experienced it as positive that his parents did not leave the consultation, because he felt reassured by their presence. Another said that he felt neutral about his parents staying or leaving. However, most interviewees experienced it as positive that their parents left the consultation room for a period of time. Handling the consultation on their own made these adolescents feel more responsible.
I get to speak about the way I see things, so it’s not just my parents’ point of view that’s discussed. (Boy, 16)
The adolescents may also have felt more confident in assuming responsibility and disagreeing with their parents when they had had consultation time alone with the practitioners. The practitioners may therefore be able to enhance the process of assuming responsibility for self-management between parent and adolescent. However, in relation to the process of assuming responsibility for self-management between patient and practitioners, observations were more mixed as shown in the example of becoming wiser than the pump. One interviewee told that, on the one hand, the practitioners told him to be more autonomous regarding the pump instructions, but, on the other hand, they also encouraged him not to.
I think they were on both sides. I think they said I did it a bit too much, but that it was still okay and cool to see that I’m thinking about that stuff. (Boy, 16)
The process of assuming consultation-facilitated responsibility between patient and practitioners is possibly a separate process from that between parent and child, which is likewise important for the development of adolescent autonomy regarding self-management.
Relationship in treatment
In the participant observations, the relationship between patients and practitioners was observed as follows: First, in case of conflict between the diagrams from the pump and the patient’s experience, the practitioners chose to believe in their patient’s view of things, thereby respecting the patient’s experiences and their problems related to self-management. Second, the practitioners, especially the nurses, knew their patients well. They would ask their patients about hobbies and everyday life, have inside jokes, and have a way of comparing self-management tasks with the patient’s areas of interest, as shown in following observation:
The nurse tells the family that they should eat the same type of pasta each time to know how the body reacts to that particular type of pasta. “We can’t give you an answer”, she says. She compares it with sport, where you also have to do the same exercise several times to become better. The patient says that he will choose a day every week where he will test one type of pasta.
The way the practitioners knew their patient’s hobbies and tried to connect with them showed that the patient-practitioner relationship was more than just a formal relation and could have a positive effect on the motivation to self-management. When asked about the episode described above, the interviewee said:
I just see it as a new way of proving something and it motivates me […] [the nurse] knows I care about my sport and play computer games with my friends, and she knows I make bets with them, just for fun of course, but of course I want to be the best you possibly can be, instead of the worst you can be. (Boy 16)
Most interviewees told that they experienced the treatment relation as positive, especially their relationship with the nurse, who was the same in every consultation. Two interviewees said that they did not mind not seeing the same doctor in every consultation, as long as the nurse was the same, whereas one adolescent thought it was strange.
There has been a new doctor with [the nurse] every time it’s a bit … a bit weird in my opinion. I don’t know why … I think I can be open and I’m not afraid of talking to them, because they have their oath of silence. (Boy 16)
Overall, the adolescents mostly used the practitioners’ names when talking about them instead of calling them by their title. This gave the impression that the relationship with practitioners was familiar and important to the adolescents, making them feel safe in consultation. One interviewee said that if the nurse was present in consultation, she did not need her mother’s presence. Two interviewees said that the relationship mattered to the motivation to self-management, because the practitioners knew that the adolescents were not bad diabetics in case the blood sugar measurements were not optimal, and that they just had had a rough period. All in all, the analysis showed that the relationship to the practitioners mattered to most of the adolescents and affected their experience of feeling safe in consultation and motivated to self-management.