Objective. Adolescence is considered the most difficult stage in life for coping with diabetes. As a result, pediatric diabetes care is continually in need of better management tools, such as many that can be found on the internet. Research shows that care is most effective when tailored to an individual patient’s needs and wishes. The present study gives insight on the latter by describing the disease and current outpatient pediatric diabetes care as experienced by adolescents with Type 1 diabetes mellitus (T1D) and their recommendations for improvement of care by using the internet.
Research Design and Methods. Data were gathered by interviewing adolescents who were diagnosed with T1D (N=16), aged 13 to 19 and treated in a tertiary care diabetes center. Interviews focused on 1) problems adolescents encounter in their diabetes self-care, 2) whether current diabetes care addresses these problems and 3) improvement of care by implementing an online treatment environment (yet to be developed). Audio recordings were analyzed qualitatively.
Results and Conclusions. Adolescents experienced diabetes as an unpredictable disease, especially in stressful events. Having the disease made them feel different from their healthy peers. They were content with their own involvement in their treatment and the approach of the diabetes team, although less satisfied about accessibility of physicians in case of non-urgent matters. Adolescents expected that an online treatment environment would contribute to improvement of organization of diabetes care, low level contact with their diabetes team and peer support.
Keywords: Adolescents, T1D, type 1 diabetes, patients’ perspective, qualitative research, hospital-delivered diabetes care, internet.
Citation: Boogerd EA, Kremer J, Prins JB, Kees Noordam K, Verhaak CM. Adolescents’ perspectives on having Type I diabetes, on current outpatient diabetes care, and on improvement of care by using the internet. J Participat Med. 2016 Aug 24; 8:e11.
Published: August 24, 2016.
Funding Souce: This research was supported by a grant from the Dutch Diabetes Foundation.
Competing Interests: The authors have declared that no competing interests exist.
Type 1 diabetes mellitus (T1D) is a disorder of carbohydrate metabolism caused by an insulin deficiency.  Effective disease management requires patients to closely monitor their blood glucose levels several times a day and additionally administer insulin  Food intake, stress and physical exercise also have a profound influence on blood glucose levels, which therefore have to be taken into account as well. 
Adolescence is often considered as the most difficult phase in life for dealing with diabetes. Adolescents tend to focus on short-term rather than on long-term outcomes. So, although good disease management results in fewer complications in the long run,  in the short-term, it can be associated with lower quality of life. Diabetes can also conflict with the growing need for autonomy and independence, a characteristic of adolescence and a necessity for successful diabetes self-care.  Some parents have trouble decreasing control over their adolescent child, which can hinder growth in self-confidence and development of self-identity.  In addition, adolescents are afraid to be excluded or rejected by their peers.  When they frequently encounter lack of understanding or ignorance from healthy peers, they tend to ignore their condition, leading to decrease in diabetes control.  Diabetes management requires adapting one’s lifestyle to the necessary demands and the adolescents’ willingness to do so. 
The complicated character of disease self-management during adolescence encourages practitioners and scientists to continuously work to find ways to improve diabetes care.    For instance, there is a growing recognition of the importance of patients’ perspectives on healthcare practice. In this study, the authors aimed to contribute to the knowledge on adolescents‘ perspectives by reporting on the results of interviews with adolescents’ preferences for diabetes care.
Information and communication technology (ICT) has become increasingly important in pediatric diabetes care.  Although most research on ICT usage was conducted in adult diabetes care, promising results have also been shown in pediatric age groups. Harris and colleagues (2012) describe the use of devices, delivery of care by telehealth and providing support and information through the Internet as three major eHealth components.  Use of the Internet has been found to facilitate interaction and support among adolescents with diabetes and their health care providers.  It can also provide adolescents, families, health care providers, the health care industry, policy makers, and the general public with platforms to interact and to learn from each other.  Although the number of studies that investigate the use of Internet in care is growing, there is still much to learn about optimal utilization for specific patient populations. Support of day-to-day diabetes self-care, access to information and support of patients by health care providers are three key examples.  A first step is to identify users’ attitudes towards internet use for these purposes. 
In the present study, the authors assessed the views of adolescents with T1D about their diabetes, their outpatient diabetes care provided by the Children’s Diabetes Center Nijmegen (KDCN) and the potential value of using the Internet in diabetes care. Qualitative research methods were used to explore three research questions:
- What problems do adolescents encounter in their diabetes self-care?
- How do adolescents evaluate their current diabetes care in relation to these problems?
- In what ways do adolescents think an online treatment environment might improve current diabetes care?
This study will add to knowledge about adolescents’ perspectives on having T1D and their received care. Further, the authors believe this is the first study assessing adolescents’ expectations of the potential value of the internet in their diabetes care. The input of participants was translated into recommendations for usual care and used as a basis for development of an Internet intervention. This study was approved by the medical-ethical board.
Research Design and Methods
Sample and Procedure
Participants were 16 adolescent patients between the ages of 13 to 19 years, who were diagnosed with T1D and received regular outpatient hospital-delivered diabetes care. Adolescents who were unable to read questionnaires because of language or cognitive problems were excluded. Thirty-five patients who visited the KDCN in March of 2008 received an invitation by mail to participate in a 60-minute, semi-structured group interview in April of 2008. Three of the 35 (8.6%) invited patients decided to participate. Subsequently, in May and June of 2008 another 35 adolescents were requested by their physician during their regular consultation, to participate in a semi-structured, individual interview subsequent to their consultation. Thirteen adolescents (37%) agreed to participate in the individual interviews. Altogether, nine boys and seven girls with a mean age of 15.5 years (sd=1.79) were included in the final analyses. The interviews were conducted by the authors (EB, CV) who were not involved in the delivered diabetes care. Interviews all took place outside of the diabetes clinic , without the presence of parents or healthcare professionals. Main questions used in the interviews were developed by the research team (EB, CV and CN) and screened by a team of pediatric endocrinologists and nurse practitioners prior to the study. A list of questions is displayed in Table 1.
Current Diabetes Care
The current diabetes care conforms to standards published by the American Diabetes Association (ADA) and the International Diabetes Federation (IDF), the leading authorities in international clinical guidelines.  As such, diabetes care is delivered by a multidisciplinary team, consisting of a pediatric diabetologist, a nurse practitioner, a psychologist and a dietician. Adolescents visit the center once every 3 months. When problems arise, interim visits are planned. During these outpatient visits approximately 30 minutes are spent consulting the diabetes nurse and approximately 15 minutes consulting the pediatrician. Further, adolescents meet the dietician yearly and a consultation with the psychologist can be planned on adolescents’ or physicians’ demand.
Data on patient characteristics were analysed by means of descriptive statistics in SPSS. Relevant themes on having diabetes, on pediatric diabetes care and on the potential of the internet in diabetes care were derived from interview-transcripts, using thematic content analysis.  All interviews were recorded on audio and prepared for analysis by means of verbatim transcription. Information that might reveal the participants’ identities was removed for anonymity. Results were explored following steps for qualitative content analysis.  Considering the group size, the authors regarded the three participants as three different sources of information. Therefore, the transcript of the group interview was broken down into three transcripts, each containing one participants’ opinion. This led to 16 transcripts (three derived from the group interview and the transcripts from the 13 individual interviews). Step 1 in the final analyses (initial coding) was to divide these transcripts into text segments, by means of incidence-to-incidence coding. In step 2 (axial and selective coding), all codes and segments were compared to assess whether text segments with comparable codes covered the same topics. The text segments that covered the same topic were then clustered and one theme was identified for every cluster of text segments. In step 3 (theoretical coding), meaning was given to the themes, by consulting the content of the segments. The results were discussed several times during the process within the research team to clarify the themes.
Analyses resulted in 10 themes, each allocated to one of the three research questions.
1. What problems do adolescents encounter in their diabetes self-care?
The adolescents in our study perceived their diabetes as unpredictable, which made it difficult to take on a proactive attitude. Undertaking physical exercise was often mentioned as difficult because of difficulty in predicting glucose levels. Adolescents reported that their stamina decreased after they were diagnosed with diabetes. The adolescents who felt strongly about this were all male.
The interviewed adolescents mentioned that having diabetes made them feel different compared to peers without diabetes. They brought up everyday situations like eating in a snack bar or drinking alcohol when going out at night, noting that and they couldn’t eat or drink in as carefree a fashion as a “regular teenager.” Further, they declared that they felt uncomfortable measuring blood glucose levels and injecting insulin in public spaces, such as at school or when going for a swim since the insulin-pump stands out: “… I have sort of a pump and a patch on my belly and I think that’s, well, I don’t like everybody seeing that, you know, in the pool, and well, I think that’s very bothersome… ”
Adolescents declared that they had little or no contact with peers with diabetes. A few adolescents in the interviews stated they had visited a diabetes camp in the past and had made friends there with whom they were still in touch, although mostly at a minimal level. When asked, the interviewees responded that they believed contact with peers with diabetes enhanced self-care capabilities or capabilities of other, less experienced teens with diabetes. Adolescents explicitly stated that they preferred online contact over real-life contact. The adolescents who regularly talked to peers with diabetes did so using instant-messenger programs on the internet or email.
2. How do adolescents evaluate the current diabetes care in relation to these problems?
Attitude of diabetes team.
The adolescents believed that their diabetes nurse and, to a lesser extent, their physician, were on a personal level with them. This facilitated an open atmosphere in which they felt free to discuss personal issues as was expressed by one of the interviewed adolescents: “… they know who you are and that’s, in my opinion, a big plus. I mean, you should know who your patient is. And they also remember what… Look, if I had said something about my book reports the diabetes-nurse would remember that the next time I get here…” Adolescents stated that their physician and diabetes nurse explicitly asked for their perspective and ideas about interventions and lifestyle changes, as this interviewee clearly stated: “…yes, they listen to me, yes. They always ask me what I want to change or ehm… what I should do about it (…) well, they let me think about it for myself properly, because it is up to me, right?” They also reported that the diabetes team provided them with advice that was relevant to their own personal situation, which was, most of the times, aimed at enhancing self-care capabilities. Additionally, adolescents attributed different roles to the nurse and physician. The first was perceived as someone to share your diabetes-related problems with and the latter as the person who could intervene. One adolescent stated that her medical physician should “loosen up a little.”
Coordination of care.
Although the nurse and physician generally achieved a good fit of care content to adolescents’ personal needs and wishes, they failed to do so regarding the coordination of care. Firstly, the preset time schedule of consultations could be improved. Although some adolescents stated that consultations were okay the way they were, another part of our sample preferred a better fit to their medical conditions or a longer consultation with the physician. One of the adolescents described the consultation with her nurse as a waste of time: “It’s not that I find it very annoying, but it feels like I’m just sitting there (at the consultation with the nurse) for thirty minutes.” Adolescents of 15 and over urged for the above-mentioned improvement. Participants further stated that they would prefer to decide upon the frequency of their consultations to the diabetes center, instead of a standard frequency of once every 3 months. Also, adolescents complained that they had to “tell their story twice.” In the reported situation, the nurse provided the physician with a summary of her 30-minute conversation, but adolescents still had to repeat “the important stuff” in the additional consultation with the physician.
Patient-professional communication in between visits.
Adolescents stated that physicians are hard to reach regarding non-urgent matters. Concerning the accessibility by telephone, one adolescent stated: “…there is this telephone number. I can use that to make a reservation for a telephone-consultation with the physician. Both numbers are accessible only when I’m at school. And the other thing: When I call in on Tuesday, they have a free spot no earlier than on Thursday…” Communicating with the diabetes nurse through email was perceived as efficient and fast: answers were received within a satisfying period of time. Some adolescents stated that they communicated with their nurse at least once in the period in between the quarterly visits, although most adolescents declared that they communicated with their nurse rarely or not at all in between consultations. Although communication with the diabetes nurse was considered functional, adolescents declared they almost never exchanged information, for example on recent blood glucose levels.
Alignment of diabetes team.
Alignment of the multidisciplinary diabetes team was considered important for continuity of delivered care. For good alignment, effective communication among caregivers was essential, according to adolescents. In the present study, only one of the interviewed adolescents recollected miscommunication within the diabetes team that had interfered with the treatment during the previous year.
Adolescents concluded by stating that dealing with diabetes was a different process for every individual. The diabetes team could offer support, but everyone had to find out for themselves what worked best, as this eighteen-year-old spoke out: “I think that you have to help yourself a little, because you know your body better than any physician does. So I think you are the best physician for yourself…”
3. What do adolescents think about an online treatment environment improving current diabetes care?
The internet and diabetes care.
All adolescents reacted very positively to the idea of an internet-delivered online treatment environment to current diabetes care. That the internet was considered a suitable medium for this group of patients was colorfully declared by one adolescent: “I am on the internet all the time already, so opening another browser window is not such a big effort…” They mentioned that easy communication with the diabetes team should be facilitated in an online treatment environment as well as contact with peers with diabetes. Two interviewees assumed that uploading blood glucose values online would be helpful, because it kept the physician up-to-date on this data and they could stop keeping a diary of glucose values.
Adolescents stated that they would actively use an online treatment environment to some extent, if it were a part of their diabetes care. Only one adolescent declared that, although she supported the project, she would not use it herself.
Adolescents explained that daily situations not related to diabetes obstruct good disease management. To support them through outpatient diabetes care, medical providers should involve adolescents in their treatment and decision making and take note of diabetes-related issues such as physical exercise, snacking and peer contact. The internet could contribute to improvement of pediatric diabetes care and could enhance contact among adolescents with diabetes.
Adolescents on Having Diabetes
Adolescents mentioned that physical activity was hard to combine with diabetes self-care. This is consistent with studies which have noted a variety of explanations for avoidance of physical activity.  But we were pleased to see that our participants did not let complaints hinder them from engaging in physical activities.
Our participants stated that they sometimes felt different compared to their healthy counterparts. This is generally found in studies among adolescents with T1D.  Adolescents in the study by Carroll and Marrero expressed similar concerns about how to react when confronted with distrust or over involvement by friends.  However, friends can also be of great support when managing this disease.  Contact with peers with the same disease is helpful, but opportunities are often limited. According to our participants, this type of interaction should be facilitated online rather than face-to-face.
Adolescents’ Perspectives Concerning Their Diabetes Care
As in other studies, our adolescents appreciate being able to communicate on a personal level with their diabetes nurse and their physician. They are also content with the extent to which they can participate in their personal diabetes care and medical decision-making.  Newbould, Smith and Francis emphasized the importance of a sense of equality in the relationship between patient and health care professional in adolescent diabetes care. Our study also supports this notion.
Adolescents’ remarks about the limited time spend with the physician in quarterly visits found by Carroll and Marrero was also evident in our sample. In particular, the older (15+) participants would rather have more time with their physician, even if that is at the expense of time with the diabetes nurse.  Further, our adolescents’ request for easier access to physicians for non-urgent matters was similar to results in earlier studies.  Conversely, adolescents realize that their treatment team should have better access to their blood glucose levels. The lack of reporting and tracking of blood glucose data by adolescents in our sample is a well-known problem in adolescent diabetes management. 
Adolescents’ Perspectives Concerning Usage of the Internet to Improve Pediatric Diabetes Care
Studies on the use of ICT in adult and adolescent diabetes care were mostly aimed at users’ experiences following several months of intervention. In the present study, however, participants were asked to report their preferences and expectations prior to using an internet-delivered intervention rather than their experiences of using one. Our results show similarities to the results of former studies. For instance, in one study of an internet-based communication device d’Annunzio and colleagues found that adolescents with diabetes were most positive about the quick and easy private contact with the diabetes team, which is in line with our adolescents’ expectations about usage of the internet.  Adolescents are optimistic about what the internet has to offer them, and consider it useful for pediatric diabetes care as a supplement to face-to-face outpatient visits.
Implications for Clinical Diabetes Care
The most important message of our adolescents is that the diabetes team should approach them on an individual personal level, whether it is face-to-face or through the internet. They appreciate the level of involvement in their treatment and the attention given to personal diabetes-related problems. Further, adolescents state that they need better coordination of their diabetes care with their individual needs and wishes. The results of our study also underscore the importance of the direct impact of everyday situations, like physical exercise, snacking and peer contact on glycemic control. Adolescents should therefore be offered guidance in developing coping strategies that prepare them for stressful situations that are not directly related to diabetes. Further, most adolescents stated that they would appreciate more contact with peers who also have diabetes, preferably in an online environment. A good next step would be to develop and study an internet based patient portal which facilitates online patient-professional interaction and interaction between peers with diabetes.
Implications for Further Research
Research should focus on the effects of online peer support for coping with the disease. Although adolescents who had attended diabetes camps were found to show better treatment behavior and sometimes improved glycemic control, adolescents in our sample prefer peer contact to be online.  Also, future studies should try to identify the view and expectations of adolescents and the treatment team on ICT-devices prior to implementation. This will enhance insight in how to fit ICT use in pediatric diabetic patients with their needs and wishes.
Although data were gathered and carefully studied by trained professionals and analyzed through tested steps of qualitative research,  this study also has some limitations. First is the use of a convenience sample, which can limit the generalizability of the findings.  Therefore, interviews were conducted until saturation occurred.  A second limitation is that analysis was conducted under supervision of a team of researchers, rather than by a team of researchers directly. To minimize bias, results from the group interview were checked by the participants themselves. In addition, several peer debriefings were conducted in which interpretations were discussed by a small group of scientists to enhance the quality of general interpretations.  The data were gathered in 2008 and, since then, there have been significant changes within the field of e-health.  However, the problems faced by adolescents in our study have been found in previous studies  as well as in more recent studies.  This emphasizes the ongoing need for studies which report needs and wishes of patients and focus on the importance of the patients’ view on care in order to improve it. This reflects the importance of our results, when aiming to develop innovative interventions to improve current diabetes care.
Patient centeredness has become an important part of health care delivery and quality management. This study shows that adolescents can point out remarkably well what they need, what they appreciate and what fits them. Explicitly asking adolescents for their opinion has helped us find a better match between their wishes and needs as a part of pediatric diabetes care. We discovered that more knowledge is needed regarding coping with diabetes in stressful situations. Further, equality in the relationship between patient and healthcare professional and coordination of care that is a good fit with individual needs are essential for good diabetes care. The internet is considered as a suitable medium to achieve better pediatric diabetes care.
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Copyright: © 2016 Emiel A. Boogerd, Jan Kremer, Judith B. Prins, Kees Noordam, and Chris M. Verhaak. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.