Introduction

Type 1 diabetes mellitus (T1DM) is a chronic endocrine disease seen in childhood (Fortunato et al., 2016). A multidisciplinary team is required to set and achieve the goals of treatment, which are unique to each stage of childhood development. Pediatric diabetes nurses in the team are responsible for the education and care of children/adolescents with T1DM, which includes providing monitoring and consultancy services (American Diabetes Association, 2018). Research shows that nursing care is effective in increasing the ability of children with T1DM to self-manage their disease (Dobson et al., 2016; Samimi, Talakoub, & Ghazavi, 2018; Tiberg, Lindgren, Carlsson, & Hallstrom, 2016). Furthermore, a study performed in Portugal reported that most adolescents with Type 1 diabetes (87.4%) were happy with the consultancy services provided by their nurses (Pires, Aparicio, & Duarte, 2016). Diabetes education plays a key role in managing this disease. According to the literature, Type 1 diabetes education provided by diabetes nurses, including psychological as well as behavioral strategies, is effective in altering the lifestyle of patients, which results in a reduction in hospitalizations and associated costs because of improved glycemic control (Cheraghi, Shamsaei, Mortazavi, & Moghimbeigi, 2015; O'Hara et al., 2017).

After diagnosing and treating T1DM, it is necessary to ensure that nursing care continues at home (Clapin et al., 2017; Tiberg et al., 2016). In the limited studies of T1DM home care, those who receive home care were found to incur 30% less in healthcare costs, to be satisfied with their healthcare, and to have more time for social activities (Tiberg et al., 2016).

Adolescence is a developmental crisis period, and the presence of a chronic disease in adolescence may undermine the sense of identity and independence and change the future plans of patients (Castensoe-Seidenfaden et al., 2017). These issues make it more difficult to manage this disease in the adolescent period. Thus, it is necessary to determine the cognitive and perceptual barriers faced by adolescents with T1DM to help them gain the skills necessary to manage their disease effectively. Pender's Health Promotion Model (HPM), used widely in public health nursing applications, is often used to determine these barriers. The HPM consists of individual features and concepts and specifically addresses behavior. Knowledge of behavior and attitudes toward a disease helps determine the perceived barriers to and benefits of health promotion (Pender, Murgaugh, & Parsons, 2015). The results gained from this study should assist home care nurses to identify the barriers faced by adolescents with T1DM in managing their disease.

Qualitative studies have focused mainly on patients with Type 2 diabetes mellitus. Furthermore, the few qualitative studies that have been conducted with adolescent patients with T1DM were limited to investigating their school experiences and their mothers' experiences in having a child diagnosed with T1DM (Rostami, Parsa-Yekta, Najafi-Ghezeljeh, Vanaki, & Zarea, 2015; Schwartz, Denham, Heh, Wapner, & Shubrook, 2010). However, no study has used the HPM to investigate this issue holistically or to identify the difficulties that adolescents with T1DM face in managing their disease. Moreover, no qualitative study has been conducted on adolescents with T1DM in Turkey. Therefore, this study was designed to identify the barriers to sustaining the behaviors necessary for the effective management of T1DM.

Methods

Setting and Participants

A qualitative, phenomenological research approach was used in this study, which was conducted between June 1 and September 31, 2015, on 18 adolescents with T1DM who were registered in a training and research hospital in the western region of Turkey. Patients who came for a diabetes mellitus regular check were included in the study using a purposeful sampling method. The inclusion criteria were as follows: (a) being diagnosed with Type 1 diabetes for at least 1 year, (b) aged 11-17 years, (c) volunteering to participate in the study (adolescent and their parents), and (d) able to speak and understand Turkish. The exclusion criteria were as follows: (a) being diagnosed with Type 2 diabetes, (b) unable to complete the interviews, or (c) being diagnosed with mental retardation.

Data Collection

Interviews were conducted in a quiet, special interview room in the diabetes unit and were audio recorded. Data were collected through face-to-face interviews using semistructured interview questions. During the interview, probing questions were asked to obtain explanations and clarifications (Sandelowski, 2000). Interview durations ranged from 25 to 45 minutes (mean = 35 minutes). A semistructured interview guide was prepared (evaluation of the questions was performed by five experts and corrections were made in line with their recommendations) based on the qualitative research methods described in the HPM (Pender et al., 2015). The five interview questions were the following:

(1) Could you please describe your life with diabetes?

(2) What activities do you do to manage your diabetes (e.g., insulin injection, dosing, individual monitoring, exercise, and diabetes education)?

(3) How does having diabetes affect your life?

(4) What do you need to help you manage your diabetes?

(5) What difficulties do you face in managing your diabetes?/What conditions affect your ability to manage your diabetes?

This method was chosen because it was applicable to adolescents; it could improve patients' health by determining individuals' self-competence, social support, and perceptions (perceptions of benefit and handicap); and it caused changes in their behavior. All of the interviews were conducted by the first researcher, who participated in relevant courses and workshops on qualitative research methods. Pre interviews were conducted with five patients, although the data obtained were not included in the statistical analysis.

Data Analysis

The data were analyzed using the content analysis method, which has been suggested for qualitative research (Creswell, Hanson, Clark Plano, & Morales, 2007; Olsen Roper et al., 2009; Yildirim & Simsek, 2011). The data were analyzed independently by two researchers using an inductive approach. First, audio recording transcription was performed. Second, the researchers analyzed each transcription line by line and coded the data. Third, the coded data were assigned to relevant subthemes, which the researchers determined by unanimous agreement. Finally, the main theme was created by integrating the subthemes. The main themes and subthemes were identified and compared with the patients' statements and their answers to the study questions. At the end of each participant's statement, the interview order, age, and gender of participants were recorded using abbreviations.

Study Trustworthiness

The researchers used Lincoln and Guba's (1985) four criteria of credibility, transferability, dependability, and confirmability to ensure the reliability of the data for use in qualitative studies. To ensure credibility, the interviews were conducted in a quiet and private place and the first researcher took notes during the recording. Two experienced researchers created categories and subcategories to describe the data and findings, with the first researcher and an independent researcher examining the data and the second researcher performing the content analysis. To ensure transferability, giving detailed information related to the stages of the research and the data collection method were clearly defined, the themes obtained were exemplified using direct quotations, and the interview data were transferred verbatim. The data for dependability were consistent, because most participants gave the same answers to a given question. An expert observed all phases of the study and verified that the interpretations and suggestions that were derived from the study reflected the data gathered. In addition, the data collection devices and the raw data were retained for confirmability.

Ethical Considerations

Ethical permission was received from the "Non-Invasive Clinical Studies Evaluation Commission" and from the hospital in which the study was conducted (Decision No. 2015/14-12; Protocol No. 2123-GOA). Informed consent was obtained from the participating adolescents and their parents.

Results

The mean age of the adolescent participants was 15.06 +/- 1.7 years. Ten were male, the duration of T1DM diagnosis ranged from 1 to 14 years, and the mean HbA1c (glycated hemoglobin) level was 8.7 g/dl.

Barriers to diabetes management after discharge and home care needs for the participants were organized under three main themes: (a) negative feelings about having diabetes, (b) personal barriers, and (c) environmental barriers (Table 1).

TABLE 1. Theme and Subtheme

Theme 1: Negative Feelings About Having Diabetes

This theme was further subdivided into two subthemes: denying being diabetic and caring about self-image.

Denying being diabetic

During in-depth interviews with the participants, it was found that their perceptions of their disease were negative.

[horizontal ellipsis]I am bored now. Why can't I just die? It was the question that I was thinking every minute. Why did I become a diabetic? I'm only 14 years old. Why me, while there are so many people out there? (Fourth patient, aged 15 years, female)

Taking pills is not such a difficult thing. But the insulin represents a different dimension. It is a hard job to arrange it. (First patient, aged 17 years, female)

Caring about self-image

Being an adolescent also affected participant attitudes toward managing their diabetes. They wanted to look good.

[horizontal ellipsis]Well, I do not like at all walking with a machine (glucometer) in my pocket. (15th patient, aged 17 years, male)

Theme 2: Personal Barriers

This theme was composed of the three subthemes of lack of knowledge, fear of complications, and personal traits.

Lack of knowledge

Many patients said they had sufficient related knowledge. However, during the conversation, researchers noticed that adolescents lacked knowledge regarding diabetes management.

[horizontal ellipsis]Cigarette smoking is not harmful to diabetes. On the contrary, it is healthy. For example my blood sugar drops when I smoke. For example, I measure my blood sugar and it shows 300. Then I smoke a cigarette and I check my blood sugar ten minutes later and it shows 70[horizontal ellipsis]. (Seventh patient, aged 14 years, male)

Fear of complications

The participants stated that they feared macrovascular and microvascular complications, especially hypoglycemia. Because of hypoglycemia fears, adolescents did not want to go anywhere else.

[horizontal ellipsis]hyperglycaemia scares me. Nausea there is so scary, it is awful beyond belief. So, I eat too much. (Fifth patient, aged 17 years, male)

[horizontal ellipsis]I feel very hungry. My hands and feet tremble. I feel so ill and I mostly want to go somewhere with my friends or family, but don't want to go anywhere alone. (Seventh patient, aged 14 years, male)

In addition, some health professionals had warned the participants about diabetes complications. However, these warnings impacted their motivations negatively.

[horizontal ellipsis]Doctors sometimes say that you can go blind. This thought disturbs me. (First patient, aged 17 years, female)

Personal traits

The personal traits of some of the participants negatively affected their ability to manage their disease. The participants reported difficulties in integrating exercise, blood glucose monitoring, and dietary requirements into their daily routine.

[horizontal ellipsis]I do not have any time for sports. Honestly, this is the biggest difficulty for me. (18th patient, aged 15 years, female)

[horizontal ellipsis]It is a real torture for me to measure my blood sugar, to open it, to change the tip. It destroys my life for 5-10 minutes. (Fifth patient, aged 17 years, male)

Measuring blood sugar is a problem also for me. I forget to measure it before meals. (Fourth patient, aged 15 years, female)

[horizontal ellipsis]It (the glucometer) shows a high value all the time. In a word, I eat too much. I cannot prevent myself from eating a lot. When there is dessert at home, I eat it all. (11th patient, aged 14 years, male)

Theme 3: Environmental Barriers

This theme was divided into the four subthemes of family, friends, school, and provision of healthcare services.

Family

Continuous warnings about diabetes management from their parents disturbed the participants and caused them to feel inadequate.

[horizontal ellipsis]my family still wants to measure my sugar. It's ridiculous, I'm fifteen years old. (Second patient, aged 15 years, female)

Some of the participants reported experiencing family conflicts while performing diabetes self-care activities. As a result, they were angry with family members.

The family stops checking you after a while, and you get into the mode of "you do what you wanna do. They do not care." (Fourth patient, aged 15 years, female)

[horizontal ellipsis]I am fed up with my parents', and particularly my mother's, constantly asking about my blood sugar values. I am fed up with their controlling my food all of the time. All I want is that they let me alone and trust me[horizontal ellipsis]. (Fifth patient, aged 17 years, male)

Friends

Participants noted that friend-related concerns encouraged them to violate their dietary restrictions.

[horizontal ellipsis]You have to keep up with your friends. If you fail this, then you feel excluded from them. For example, everyone eats ice cream, and if you do not eat, it becomes weird. (Sixth patient, aged 16 years, female)

The participants noted that their friends continuously asked questions about their illness, which made them uncomfortable.

[horizontal ellipsis]I am sick of my friends' questions about diabetes. For example, my friends say "You have to take shots every day? I'd die if I had to do that."[horizontal ellipsis] It's so annoying. (Fourth patient, aged 15 years, female)

School

The participants reported receiving negative attitudes and feedback from teachers, causing them to feel bad in class.

[horizontal ellipsis]One teacher does not believe me (that I have diabetes). They say "don't play games" (when I have a hypoglycaemia moment). None of them let me go out[horizontal ellipsis]. (First patient, aged 14 years, male)

The participants further noted difficulties in managing Type 1 diabetes at school.

[horizontal ellipsis]Foods at school are not appropriate for us. (18th patient, aged 15 years, female)

Provision of healthcare services

Many of the participants stated that the length of the diabetes education that they received was inadequate.

[horizontal ellipsis]At first, I was scared and cried so much. I was scared so much to think how I would inject the insulin. What will I do if it drops or rises? They said, "You will know when it drops or rises, and you will do everything yourself." At that moment, there was so much information in front of me and the time was so inadequate. I was worried so much, saying how could I keep all this information in my mind. (First patient, aged 17 years, female)

Discussion

In this study, all of the participants perceived multiple barriers that impeded their effective management of their Type 1 diabetes. Three main themes were identified in this context, including negative feelings about having diabetes, personal barriers, and environmental barriers.

Theme 1: Negative Feelings About Having Diabetes

The results of this study support that adolescents perceive diabetes as a disease that restricts their daily lives. In addition, the participants perceived themselves as different from their peers, an indication that they may not yet have accepted their diagnosis. Similar to the results described here, other studies have reported that children with diabetes feel different from their peers (Castensoe-Seidenfaden et al., 2017; Joensen, Filges, & Willaing, 2016; Kelo, Martikainen, & Eriksson, 2011). The "disease-related perceptions" of individuals with Type 1 diabetes are effective with regard to maintaining self-management behaviors. Moreover, it has been shown that the potential reactions of adolescents to a disease diagnosis include denial of the disease and refusal to accept treatment, particularly for diseases that are not visibly apparent (Castensoe-Seidenfaden et al., 2017). Individuals who held a positive point of view before, during, or after their behavior education or training are more likely to begin and maintain the desired behaviors. Similarly, adolescents with T1DM who hold negative attitudes toward their disease face relatively greater difficulties in adapting to their disease.

The participants in this study placed a high degree of importance on their appearance, which is attributable to their age and social conditioning. This factor was identified as a hindrance to effective disease management in this study as well as other studies in the literature (Boztepe, 2011; Marshall, Carter, Rose, & Brotherton, 2009). The biological properties of an individual are his or her age, gender, and puberty/menopause status. These individual factors must be considered, as they prevent adolescents from managing Type 1 diabetes effectively by affecting their cognitive processes, reactions, and health behaviors.

Theme 2: Personal Barriers

The results of this study support that lack of knowledge about the disease is a barrier in diabetes management. Studies in the literature highlight similar findings, indicating that low blood sugar, insulin injection, dietary restrictions, and lack of knowledge of these disease issues are among the most difficult issues for adolescents with T1DM (Kelo et al., 2011; Olsen Roper et al., 2009). A qualitative study conducted in Iran found that adolescents needed to have sufficient information regarding disease management to internalize their disease (Rostami et al., 2015). Lack of knowledge about diabetes management may constitute a barrier to self-care, leading to a loss of control over the body and, potentially, to negative effects on disease management self-efficacy. Successful diabetes management may be achieved by increasing the self-care information available to adolescents. One of the barriers to ensuring good glycemic control was found to be fear of disease management complications. Other studies have shown hypoglycemia to be the most common fear among families and children (Amiri, Vafa, & Gonder-Frederick, 2013; Barnard, Thomas, Royle, Noyes, & Waugh, 2010; Castensoe-Seidenfaden et al., 2017). The mood of the adolescent is affected by the disease. Studies have found that fear of hypoglycemia negatively affects the quality of life and increases the sensation of disease burden of adolescents and their families (Amiri et al., 2013). In addition, fear of hypoglycemia negatively affects glycemic control (Shepard, Vajda, Nyer, Clarke, & Gonder-Frederick, 2014). Fear of diabetes hypoglycemia results in a perceived increase in the difficulties associated with health self-management for adolescents with T1DM.

In addition, this study revealed that personal traits such as forgetfulness and laziness decreased diabetes management efficacy. In particular, the monitoring of blood sugar levels and following medical dietary recommendations were identified as the most difficult issues for the participants in this study, which is similar to findings previously described in the literature (Carroll & Marrero, 2006; Marshall et al., 2009). Other studies have shown that adolescents have identified disease management as a particularly difficult issue (Alderson, Sutcliffe, & Curtis, 2006; Herrman, 2006; Iannotti et al., 2006). Thus, it is important to identify approaches and strategies that effectively motivate individuals to manage their disease.

Theme 3: Environmental Barriers

This study identified parental support as a protective factor for diabetes management. Previous studies have indicated that conflicts experienced with parents cause adolescents to fail to manage their disease (Boztepe, 2011; Cameron et al., 2008; Lin, Mu, & Lee, 2008; Wang, Brown, & Horner, 2013). In this study, the participants stated that their family members concealed when they ate sweet and high-calorie foods out of sympathy, which negatively affected the participant's self-esteem. However, a similar finding has not been found in the literature. The findings of this article indicate that having a negative relationship with family members is considered by adolescents to be a barrier to effectively managing a disease.

The second subtheme was the problems that participants experienced related to their school environment. Other studies have similarly found that school-provided foods are not suitable for adolescents with T1DM, that these adolescents face difficulties in physical education classes, that they do not know how teachers will intervene in cases of hypoglycemia and hyperglycemia, and that they experience conflicts with teachers (Cameron et al., 2008; Kelo et al., 2011; Schwartz et al., 2010). The participants described the absences of an infirmary and a school nurse as barriers to managing their disease, although no other studies have been found to support this finding. The reason for this difference may be that there are no school nursing programs in Turkey. Furthermore, a lack of sufficient support from teachers and inadequate medical facilities at school may increase the perceived barriers to managing disease and may reduce perceived self-efficacy.

This study also revealed that friendship relationships among adolescents prevented the participants from implementing proper diabetes management. Children with T1DM tend to hide their disease because of concerns about being excluded from their friend groups (Wang et al., 2013; Yang, Lou, Lien, & Gau, 2018). During adolescence, when peer acceptance is extremely important, adolescents may not want to perform self-care behaviors to not appear different from peers and because of fears of rejection or feeling ashamed. School nurses may provide diabetes education to students and staff in both individual and group settings.

Among the barriers perceived by the participants toward the provision of adolescent health services, the issue of inadequate training was particularly highlighted, which echoes the findings of previous studies (Cheraghi et al., 2015; Jonsson, Hallstrom, & Lundqvist, 2012). This issue may be attributable to several reasons, including that diabetes nurses do not provide age-group-specific training, that training is not standardized, staffing shortages, and large numbers of patients. Receiving inadequate education on Type 1 diabetes reduces the self-efficacy of adolescents, which likely increases their perceived barriers to disease self-management.

Conclusions

The findings of this study show that adolescents with T1DM face multifaceted obstacles to self-management. Health professionals should work with parents, teachers, and peer groups to eliminate these obstacles. Moreover, policymakers should employ school nurses, who have important responsibilities in the school-based care of adolescents with T1DM. In addition, the psychosocial needs of adolescents should be taken into consideration when promoting diabetes self-management strategies. Providing diabetes education in schools may increase both the awareness of T1DM adolescents and the commitment of these adolescents to their schools. An experimental study has been planned by the authors to design nursing interventions to help adolescents with T1DM overcome their perceived barriers to disease self-management. Finally, focus group discussions are recommended for the parents of adolescents with Type 1 diabetes.

Limitations

One limitation of this study was that the sample group consisted of adolescents with T1DM from one hospital only. In addition, it is likely that the perspectives elicited in this study did not sufficiently reflect the full range of perspectives of adolescents with T1DM. Holding focus group interviews rather than individual interviews may have elicited significantly more diverse information based on interparticipant discussions and dialogue. Finally, despite the use of inductive questions in the interviews, some of the participants provided superficial answers, which is typical of people in this age group. This resulted in the short average duration of interviews.

Acknowledgment

The authors appreciate the patients who participated in this study.

Author Contributions

Study conception and design: KPG, ZB

Data collection: KPG

Data analysis and interpretation: KPG

Drafting of the article: KPG, ZB

Critical revision of the article: ZB

References