What Is It Like to Be a Child With Type 1 Diabetes Mellitus?
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 as pect 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 in vestigated 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.
Discussion
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 as pect 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 in vestigated 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.