The authors of this article are Valéria de Cássia Sparapani, Eufemia Jacob, and Lucila Castanheira Nascimento. Valéria de Cássia Sparapani is a professor at Santa Catarina Federal University, Department of Nursing while Eufemia Jacob is an associate with the UCLA School of Nursing. Lucila Castanheira Nascimento is a full professor at the University of São Paulo at Ribeirão Preto College of Nursing. The three authors are registered nurses.
This study addresses the various aspects of life associated with being a child with diabetes; hence it was chosen. More importantly, type 1 diabetes mellitus (T1DM) often develops during childhood and adolescence (Fortunato et al., 2016), and the necessary change of lifestyle in the management of the disease makes it a challenging disease for a child to live with.
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According to Sparapani et al. (2015), “the purpose of the study was to increase our understanding of “what it is like” to be a child with type 1 diabetes mellitus and explore factors that interfere with disease management” (17).
Transitioning from a healthy life to a life characterized by managing a chronic disease such as T1DM is a problematic aspect, especially for children. Significant adjustments in lifestyle are needed to achieve adequate diabetes management in children and adolescents, which consequently affects the chance of living a normal childhood (Freeborn et al., 2013). Sparapani et al. (2015) investigated the concept of being different and what it is like to live with T1DM. Children and adolescents with T1DM express their emotions differently and are highly vulnerable due to disease management stressors.
The study utilized qualitative interviews to collect data, where children and adolescents were interviewed to examine the thoughts and feelings of children as they manage diabetes. Qualitative interviews are a personal form of research which helps the researcher explain, understand, and explore the participants' opinions and experiences. The researchers needed to explore a specific idea hence opted for the quantitative research approach (Scibbr, 2019).
The sample size for the study was 19 children. The sample participants were purposefully selected from an outpatient clinic where the participants were aged 7-12 years. The participants had lived with diabetes for a year.
Data collection was through three steps with the first step involving the creation of a scenario that simulated the real-life experiences that children face in their daily life. The second step required children to make puppets that helped them identify people whom they interact with daily. Children conducted the first two steps in groups of three to seven while the thirst step involved individual interviews during appointment dates. The previously created puppets were used to encourage children to talk about their daily routines and how he or she manages the disease. A research assistant made notes as the children described their experiences. The interviews were recorded and transcribed (Sparapani et al., 2015).
Data analysis was consistent with Mayan’s guidelines for content analysis. Data coding was accomplished by meanings attributed to passages and paragraphs, after which categories and subcategories emerged. The relationship between the categories with one another was identified, and repeated issues recognized. Observations and non-verbal behaviors were expressed through square brackets.
Four themes emerged from the study, and these include conflicting desires, insecurity, fear, and pain, inadequate knowledge of the disease and prejudice, rejection, and shame. Children often have certain routine activities, and those with T1DM cited their inability to accomplish these activities. For instance, children love candies; however, having diabetes means they could not eat candies. Additionally, for most children, blood sugar monitoring and insulin administration was associated with negative emotions. Contact with needles created fear, insecurity, as well as pain, and this consequently affected glucose self-monitoring and insulin-self-administration. Most children felt that they lack control over the disease and its long-term complications, which led to negative emotions. The children also lacked knowledge of the disease, as they avoided talking about T1DM with anyone due to shame. Thoughts that others have about the disease affected the children’s ability to manage the disease effectively. Prejudice and rejection by peers also negatively affected the children and limited their ability to develop relationships with peers (Sparapani et al., 2015).
After reading the participants’ experiences, I felt that children and adolescents with T1DM often struggle with their emotional reactions to the disease and how other peers may react to the condition. Children with diabetes worry about their interactions with others, including their ability to engage in ordinary activities common among children. Establishing a routine of glucose monitoring and injection is especially difficult for a child due to the fear of needles. Feeling different and embarrassment about the disease affects coping abilities for the children.
As a nurse practitioner, I can use the study results to identify the educational needs of children and adolescents with T1DM. A nurse needs to understand how a child living with the condition feels about the disease, which will help promote positive coping. I will use this information to create interventions that specifically focus on helping children live an emotionally healthy life with the disease.
The main limitation identified from the qualitative approaches used in the study to corpus analysis is that the researchers' findings cannot be broadened to more extensive populations (Leung et al., 2015). This is because, as described in the study (Sparapani et al., 2015), the research findings were not tested to determine their statistical significance. Generalizability is essential in research studies Leung (2015), and the larger the sample size, the easier it is to generalize the results.
In my opinion, the study has significant implications in nursing practice, considering the increasing prevalence of T1DM among children and adolescents. The study explores the idea of the experiences of children living with T1DM and utilizes interviews to acquire this information. Interviews can help a researcher get a personal opinion. As the study targets children of a specific age group, the article provides an in-depth case-oriented analysis of the children’s experiences. The purposeful method of sampling selected by the researchers ensures that only information-rich cases are included in the study.
References
Fortunato, F., Cappelli, M. G., Vece, M. M., Caputi, G., Delvecchio, M., Prato, R., Martinelli, D., & Registry Workgroup, A. C. (2016). Incidence of type 1 diabetes among children and adolescents in Italy between 2009 and 2013: The role of a regional childhood diabetes registry. Journal of Diabetes Research , 2016 , 1-7. https://doi.org/10.1155/2016/7239692
Freeborn, D., Dyches, T., Roper, S. O., & Mandleco, B. (2013). Identifying challenges of living with type 1 diabetes: Child and youth perspectives. Journal of Clinical Nursing , 22 (13-14), 1890-1898. https://doi.org/10.1111/jocn.12046
Leung, L. (2015). Validity, reliability, and generalizability in qualitative research. Journal of Family Medicine and Primary Care , 4 (3), 324. https://doi.org/10.4103/2249-4863.161306
Scibbr. (2019). Quantitative vs. Qualitative Research: The Differences Explained [Video]. YouTube. https://www.youtube.com/watch?v=a-XtVF7Bofg
Sparapani, V. C., Jacob, E., & Nascimento, L. C. (2015). What Is It Like to Be a Child with Type 1 Diabetes Mellitus? Pediatric Nursing , 41 (1), 17-22.
