What is it like to be a child with type 1 diabetes mellitus?
Background And Significance
Although previous research examined disease management in children and adolescents with T1DM, very little research examined "what it is like" for a young child to live with T1DM. Several studies examined experiences at time of diagnosis and coping with the diagnosis (Miller, 1999; Moreira & Dupas, 2006; Paro, Paro, & Vieira, 2006), and quality of life (Cameron et al., 2002; Wagner, Abbott, & Lett, 2004). Some studies described the experience of transferring self-care responsibilities from parents to children (Schilling, Knafl, & Grey, 2006) and how family relations interfered with adequate disease management (Ellis et al., 2007). Other research studies addressed difficulties with self-administration of insulin (Dall'Antonia & Zanetti, 2000) and self-care experiences at school (Faro, Ingersoll, Fiore, & Ippolito, 2005; Newbould, Francis, & Smith, 2007), including bullying (Storch et al., 2006).
Marshall, Carter, Rose, and Brotherton (2009) reported evidence of tension and anxiety during the transition period and feelings of loss related to life before and after the disease. Fears of hypoglycemia episodes and dietary mismanagement have also been reported as sources of tension and anxiety (Burke & Dowling 2007), as well as the absence of support from classmates, family, and the school (Damiao, Dias, & Fabri, 2010; Morris et al., 2006). Although these studies contribute to the knowledge related to interactions and difficulties present in the lives of children and adolescents with T1DM, they did not explore details about "what it is like to be a child with T1DM", how they expressed their emotions, and if there were factors that interfered with disease management.
Qualitative interviews were conducted from August 2008 to August 2009 to examine thoughts, feelings, and how the young child managed having diabetes. The interviews were facilitated by the use of puppets in a simulated environment. The children constructed the puppets prior to the interviews to facilitate communication of thoughts and expression of feelings. The use of puppets was a developmentally appropriate strategy for communicating with children 7 years of age and older. Studies indicate that researchers and professionals should use dynamic techniques and consider issues related to the children's developmental stage when interacting with them. Otherwise, the approach may prevent the real expression of children's experiences when they are face-to-face with an adult (Greenspan, 2003; Pelicand, Gagnayre, Sandrin-Berthon, & Aujoulat, 2006). The study received approval from the hospital's Institutional Review Board. Written informed consent was obtained from the children's parents, and each child gave his or her assent to participate in the study.
Setting and Sample
The research was conducted in an outpatient clinic of a university hospital in Sao Paulo, Brazil. The university hospital was a referral center for treatment and follow up of children and adolescents with T1DM from birth to 18 years of age. Approximately 150 children were followed per month in the outpatient diabetic clinic. The center has weekly multidisciplinary team meetings for parents and children with T1DM. Children were purposively recruited from the outpatient clinic. The eligibility criteria were children 1) 7 to 12 years of age--the age group was selected because there was little in the literature about the experiences of children about daily experiences with T1DM, and they were likely to benefit with use of puppet strategies; and 2) diagnosis of diabetes for at least one year. Children who met the inclusion criteria were invited by the first author to participate in the research. Parents' consent and children's assent were obtained.
Data collection consisted of three steps. First, children participated in the construction of the scenario. The scenario was used as a "stage" on the day of the interview and simulated the environments they encounter in daily life. The construction of the scenario allowed children to create a familiar space that enhanced their ability to express feelings and communicate thoughts. Second, children made puppets that allowed them to identify people they interact with daily. Figure 1 is an example of the "stage" used to conduct the children's interviews. It consists of a colored fabric panel, measuring 1.40 x 2.0 meters; figures are designed by the children to adhere to the panel. These figures include leisure places, teachers, family members, and devices, such as syringes and capillary glucose devices. Figure 1 also consists of the puppets made by the children who can represent themselves, their mothers, nurses, friends, and others (Sparapani et al. 2014). The construction of scenarios and the making of puppets were done by groups of three to seven children, which occurred around the times they were scheduled for their weekly appointments in the outpatient clinic. The principal investigator (PI), two research assistants, and one occupational therapist facilitated these sessions. The research assistants were undergraduate nursing students trained by the PI on data collection procedures under her supervision. The occupational therapist was a masters student with experience in conducting research with children using puppets. The sessions took two hours and were held in a quiet room near the parent waiting area. The third step was the individual interview on the date each child was scheduled for his or her subsequent appointment, which occurred about 15 days to three months from the previous session. One interview was conducted with each child, and all 19 children participated in the construction of the scenarios (Step 1) and puppets (Step 2).
The interviews started with the child placing the puppets in the simulated environment that was created in the previous steps. The interviewer used a puppet to represent himself or herself. The child selected the puppets to represent him- or herself and the people they interact with daily. The child selected puppets that may include parents, teachers, siblings, nurses, or doctors. The interviewer encouraged the child to talk about his or her daily routine and how he or she manages diabetes throughout the day.
During the interviews, a research assistant with experience in conducting interviews with children made field notes in the diary. Details about environment, the respondents' posture, interactions with the interviewer, and the available resources were noted. Interviews were recorded and lasted between a minimum of approximately 40 minutes and a maximum of one hour and 20 minutes. After each interview, the interviewer and the research assistant met to check and verify their understanding about what the children expressed during the interviews. The interviews were recorded and fully transcribed, which permitted an accurate analysis and interpretation of children's expressions and feelings. Quotations from the statements were used in the results section to provide readers with more reliable data. After transcribing the interviews, discussions took place between the researchers about the meanings attributed to the text. The categories and subcategories were identified, which facilitated data interpretation and increased methodological rigor.
Analyses began at the same time the recordings were transcribed, which is consistent with Mayan's (2001) guidelines for content analysis. The acquired information was organized by meanings attributed to specific passages and paragraphs, after
which categories and subcategories emerged, and data coding was accomplished. The last step of the analysis following the guidelines was the integration of data, identifying how the categories were related to each other, what issues were found repeatedly, and what conclusions were reached (Mayan 2001). Curved brackets (...) were placed in the text to indicate texts that were truncated so that the flow of thoughts continues with other similar statements. Square brackets [...] were placed to refer to important observations that contextualize statements or express participants' nonverbal behaviors.
Nineteen children (13 girls and 6 boys) participated in the interviews. The mean age was 9.8 + 1.8 years (range 7 to 12 years); average time since diagnosis was 3.3 years (range 1 to 10 years). During the interviews with children using puppets, four types of feelings emerged that described the experience of "what it is like" to be a child with T1DM: 1) conflicting desires, 2) insecurity, 3) fear, and 4) pain. The following examples illustrated the children's emotions and feelings.
Children with T1DM expressed that they were unable to accomplish some routine activities. For example, one 10-year-old girl described limitations in leisurely activities when she spent a day in a water park:
So I did not want to eat. Ah! Because in the water park, everything is water (...). If you eat, for example, if you have lunch, you have to spend three hours without getting in the pool and spend three hours without fun! Not me! I ate potatoes, diet soda, and that's it. And I was there, just sunbathing. Then I ate (...), because it was too low [referring to blood glucose level] because I played too much (...). After that, I ate a snack and juice (...), and I had to drink 'guarana' with sugar because it was not getting high. After that, it became high because I continued eating things (...).
The child expressed being worried about diabetes control; and yet, she wanted to do whatever she wanted during her leisure day. The conflict led to the child not adhering to the dietary restrictions. She expressed the internal tension between having to adhere to treatments, which was painful and full of restrictions, and accomplishing the desires inherent in being a child, like playing.
A short-term complication of diabetes is hypoglycemia, as a consequence of prolonged exercise and inadequate nutrition. One 9-year-old boy described an episode of hypoglycemia, which restricted the activities he enjoyed, such as swimming:
In the pool [referring to the place he likes to go]. Ah, after lunch till the evening. (...). At about five o'clock [referring to the time he remains in the leisure place]. I stay in the pool from lunchtime.. .until about five o'clock in the evening. A lot of times when I swam.. .my sugar got very low. I was in the pool, and I start to feel shaky.
Diet restrictions and disease management may add stress to the child and increase his/her risks of depression and anxiety. One 8-year-old girl expressed both the existence of these stressors and feelings:
I feel sad just because of that! Sometimes I cannot eat things, then I say: "Oh life, I can't eat anything!"
One of the most difficult aspects of having diabetes was not being able to eat candies, a common desire of a child. One 9-year-old girl expressed her feeling about eating candies, by saying that her desire for candies would be alleviated if they did not exist:
(...) It would be good for everybody, and I think if there were no sugar in the world, the world would be better. It is because, sometimes, when I see sugar, I feel like eating it, and if there is no sugar, only diet things, I would not feel like eating it. If there are only diet things, I could eat a little bit.
However, the meaning of eating candies and sweets changes for the child and family when the child has low blood sugar; the child sees low blood sugar as an opportunity for eating candies more frequently and in larger quantities. One 8-year-old boy revealed:
My aunt gives me candy, gives me an egg with cheese and chocolate, so good (...). It helps to get high. And she adds ham. When the level is 60, she does other things.
Insecurity, Fear, and Pain
Blood sugar monitoring and insulin administration led to negative feelings and emotions. Children reported that the contact with needles and pricks causes fear, insecurity, and pain, and affects their ability to independently and correctly monitor blood sugar and self-administer insulin. One 8-year-old girl stated not liking needles, leaving the insulin administration technique to her mother:
No.' [Don't apply insulin] (...) My mom! [She will apply]. (...) I'm afraid of it! Because of mat, hum, that needle! Ah, I do not like to see it.
One 8-year-old boy demonstrated insecurity at the time of insulin aspiration from the insulin bottle:
[He did not aspirate insulin from the insulin bottle] Because I'm afraid of doing it wrong.
One 12-year-old girl reported that she did not properly achieve the rotating application due to the pain she felt during the procedure in certain body places, mainly in the periumbilical region:
(...) I do not apply insulin in the belly. I used to apply it in the belly; it was the best place to apply, but now I think it hurts. It has been more than three years that I do not apply it in the belly.
Worry about Long-Term Effects
Children felt bad about having diabetes and directly associated the lack of control of the disease to long-term complications. One 8-year-old girl stated that the dietary restrictions require not eating too much sugar and that, if it occurs, she will suffer amputations or even die:
[Diabetes] It is one thing I've never seen; I thought it was only an adult's disease and not a child's disease! (...) You cannot eat sugar! Because otherwise, if you have a lot of sugar, you can amputate a leg, an arm, and even, you can die.
Inadequate Knowledge of the Disease
Children demonstrated lack of understanding about how the disease works in their body. The children were not able to adequately explain their understanding of the disease. They expressed fear or shame, so they avoid talking about the disease to people they live with. They do not ask questions, not even when they do not understand, as one 8-year-old girl stated:
[The child does not explain to her friend about diabetes] (...) Because I hardly understand anything!
Prejudice, Rejection, and Shame
The perceptions other people have about what it means to be a child with diabetes can led to feelings and attitudes that will also interfere with disease management. Reports of prejudice and rejection lead to children's feelings of insecurity and difficulty in developing relationships with peers and others from their social network. One 12-year-old affirmed that because of diet restrictions, her friends consider her a different child:
It is because, so, they think I'm a "smarty-pants" girl, but I'm not.
These perceptions may damage friendship with peers who could be a source of support for disease management. Verbal and nonverbal expressions of people who they live with may influence decisions regarding diabetes and prevent children from feeling safe about revealing their diagnosis to friends. One 10-year-old expressed how she felt when testing blood sugar in the classroom:
I feel [shame]! I feel, you know, I'm there shrunken. Then the others are just looking at me [widen eyes], so I am ashamed of the others who keep looking at me. They are like that [widen eyes]. There's no way to be there. Then I go out (...).
Significant changes in lifestyle are needed to achieve adequate diabetes management in children and adolescents. These changes may be complex because of differences in cognitive, emotional, and physical growth and development (Jacquez et al., 2008). Children face challenges as they live with a chronic disease like diabetes. These limitations are not only physical but also emotional, psychological, and social (Nascimento, 2003). Data from this study highlighted these limitations and present valuable testimonies of children with diabetes, who go through situations of conflicting desires, insecurity, fear, pain, worry, and shame on a daily basis.
Children's vulnerability increases because of stressors of the disease management in addition to the normal pressures of daily life (Grey & Thurber, 1991). Similar to other findings (Smith & Carlson, 1997; Turner, 2008), children in this study reported stressors related to being different because of having diabetes, monitoring blood sugar, diet restrictions, and activity limitations (Smith & Carlson, 1997), and the lack of accurate knowledge (Turner, 2008). Their testimonies, in which the children show their anxiety, sadness, and fear, as well as experience conflicting desires, confirm this enhanced vulnerability. The disease control may be painful and stressful for children, especially during their leisure time. The children in this study experienced conflicting needs: 1) being the child and doing what they wanted as a child, and yet, 2) they were not able to do as they want or as other children their developmental level would be able to do because they have to adhere to the restrictions and limitations posed by having diabetes (Marcelino & Carvalho, 2005). This conflict is particularly evident when hypoglycemia occurs, and sugar and sweets were the child's desires, making glucose control in the young child even more challenging. Therefore, pediatric nurses' planning during care delivery and assessment of young children should take into account the complexities of the child's developmental stage and the daily experiences in different environments.
A family member, a teacher, or a friend may assist children with blood glucose monitoring (Soutor, Chen, Streisand, Kaplowitz, & Holmes, 2004), insulin administration (Schilling et al., 2006), and monitoring diet and exercise. The children's reports in this study reinforce the importance of an adult helping them daily, not only to accomplish techniques, but also to offer support in response to the children's psychosocial needs. Therefore, in addition to teaching parents or caregivers of these children about disease management, such as rotating insulin application sites, correct aspiration, and administration of the drug, they also need to teach about paying attention to emotional needs, such as fear of needles and lancets, pain, and insecurity. Parents and caregivers may be taught how to help and allow children to express their thoughts and feelings routinely, possibly through the use of puppets and other strategies. Similar to others findings (Alderson, Sutcliffe, & Curtis, 2006; Wagner, Heapy, James, & Abbott, 2006), support from parents and caregivers will help children in managing the disease and achieving good glucose control.
In addition, parents may use strategies, like the use of wireless devices, beepers, and text messages, to remind children about the times of blood sugar testing or insulin administration (Soutor et al., 2007). Diet management may also be addressed by using reminders to minimize episodes of hypoglycemia (Soutor et al., 2007). These strategies may be more effective when started during early childhood, and prepare children for adolescence when they may achieve greater independence for diabetes management. Dashiff, Riley, Abdullatif, and Moreland (2011) examined the experiences of parents of adolescents in transitioning diabetes self-management to their children; they found that the most useful behavior was to offer frequent reminders. However, they also found that frequent reminders could be frustrating to adolescents (Dashiff et al., 2011). In this study, we used puppets to engage children in conversations about disease management and explore feelings. Family members, teachers, and friends may also find this strategy important in allowing the child to express thoughts and feelings and in teaching them about their disease and its management.
Diet is often the most difficult aspect of disease management (Silverstein et al., 2005). The study results indicated that the main diet-related difficulty involved sugar. The heightened preference for sweet taste during early development is universal and evident in children around the world (Liem & Mennella, 2004). Dealing with the desire to eat sweets and the blame for not resisting to this desire were examples of barriers that were also described in other studies (Delamater, 2009; Leite & Shimo, 2008; Moreira & Dupas, 2006; Samson, 2006). One child in our study revealed an episode in which hypoglycemia was used as a pretext for increased "sweets" intake. Parents, caregivers, and health care providers need to exercise caution in these situations and pay particular attention when repeated numbers of hypoglycemia episodes occur because younger children understand this complication differently. Pediatric nurses' interventions, especially involving parents and caregivers, are necessary, and both nurses and parents/caregivers need to recognize such distress by exploring with the children, either in the hospital setting or during clinic visits, their thinking about "sweets" and management of their disease.
Dietary restrictions were a cause of sadness for young children engaged in this study. The impact of diabetes on eating behavior cannot be under estimated and can cause psychological distress. Even though dietary restrictions may not always be associated with psychiatric disorders, findings from the research conducted by Butwicka and collaborators (2012) evoke interesting discussion. These authors investigated the frequency of theft among children and adolescents with T1DM and its association with diagnosis of a psychiatric disorder and metabolic control of diabetes. They reported that all children who admitted theft, as shoplifters or from their parents, told that the main motivation for the maladaptive behaviors was to get "sweets." A higher prevalence of psychiatric disorders (mood, behavioral, and eating disorders) was observed in those T1DM children with worse metabolic control (Butwicka et al, 2012).
Despite children's young age, they establish the association between adhering to treatments and preventing serious complications, such as amputation of a limb, loss of vision, or death. Similar to findings by Roper, Call, Leishaman, Ratclife, and Mandleco (2009), children in this study demonstrated knowing the long-term consequences of not taking care of the disease. However, young children did not understand how these complications occur. Diabetes education that includes the pathophysiology of disease and long-term effects of inadequate management is important, but it also helps these children cope with negative feelings to promote psychological, emotional, and social well-being needs to be part of clinic visits.
In this study, young children found it difficult to talk about diabetes with their peers. They experienced situations of rejection and moments of shame. Palladino and Helgeson (2012) also found that children and adolescents with T1DM had difficulties relating with peers and were less adherent to disease management when interacting with peers, thereby increasing their risk for poor glucose control. Therefore, children with T1DM need additional skills to communicate with peers about their disease, possibly using puppets to help explore thoughts and feelings related to the disease and its management. Children need help in finding ways to tighten friendship bonds, overcome prejudices, and solicit help, so peers may be supportive partners who could possibly strengthen the ability of children with T1DM to manage disease. Pediatric nurses and parents may encourage peers (with permission from peer parents) to come with young children to clinic appointments, so peers may also learn and understand about T1DM and its management, possibly participate in construction of scenarios and puppets, and explore feelings, conversations, and their understanding.
Nurses who develop educational activities for young children with T1DM should address not only the physical aspects (blood sugar monitoring, insulin administration, diet, and exercise management), but also focus on interacting with the child, participating and understanding the experiences of pain, increasing understanding of the disease, and improving the child's quality of life, particularly the emotional and psychosocial aspects. Patient education after the initial diagnosis and allowing the children to express feelings and ask questions about their conditions as appropriate to the child's development stage are of paramount importance. The use of puppets was an effective strategy in communicating with children and encouraging them to express their feelings, their understanding of the disease, and how they deal with the disease daily.
Implications for Practice
An understanding of what it is like to be a child with T1DM may help pediatric nurses and other health care professionals to evaluate and value feelings, as well as understand children's daily experiences. Children expressed thoughts and feelings, such as conflicting desires, insecurity, fear, pain, worry, and shame. Nurses need to acknowledge that children with T1DM may have these feelings, facilitate individual expression of these feelings through the use of puppets the children create, and use strategies that will promote positive coping as they live with the disease. Investigating children's self-perception and perceived self-image about their illness allows for the identification of knowledge gaps and enables interventions that are more focused on the children's emotional and psychosocial needs.
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Valeria de Cassia Sparapani, MSc, RN, is a PhD Candidate, University of Sao Paulo, Ribeirao Preto College of Nursing, WHO Collaborating Center for Nursing Research Development, Sao Paulo, Brazil.
Eufemia Jacob, PhD, RN, is an Assistant Professor, University of California - Los Angeles, School of Nursing, Los Angeles, CA.
Lucila Castanheira Nascimento, PhD, RN, is an Associate Professor, University of Sao Paulo, Ribeirao Preto College of Nursing, WHO Collaborating Center for Nursing Research Development, Sao Paulo, Brazil.
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|Title Annotation:||Continuing Nursing Education|
|Author:||Sparapani, Valeria de Cassia; Jacob, Eufemia; Nascimento, Lucila Castanheira|
|Date:||Jan 1, 2015|
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