CHALLENGES FACING CHILDREN WITH DIABETES AND THEIR FAMILIES

There are many challenges facing children with diabetes and their families. For instance, parents often ask, “What can my child do (or not do), and how can we keep our child safe?” Another area of concern for families of children with diabetes is physical activity. The clinician must be ready to address these and other challenges when caring for pediatric patients.

Managing Diabetes in School Settings

Starting daycare and then school is an exciting and challenging time for children and their parents. For children with diabetes, there are extra challenges to overcome and concerns to be addressed during this transition. Clinicians who work with young children with diabetes are aware of these challenges and provide support, encouragement, and education.

DAYCARE AND DIABETES

An important concern for parents of very young children with diabetes is whether their child can attend and be safe in daycare. Therefore, the clinician ensures that the child’s healthcare team and parents develop a written plan of care for the child and that the parents then review the plan with the daycare administration and staff.

All the staff working with the child must have basic diabetes education, be able to recognize high and low blood glucose levels, and know whom to call for assistance. It is essential that there is always at least one daycare staff member present who has been trained to perform blood glucose checks and to administer insulin if needed.

It is the responsibility of the parents to provide the daycare facility with all the diabetes supplies that their child will need, as well as the prescribed insulin and snacks (ADA, 2017b).

DIABETES AND DISCRIMINATION LAWS

Federal and state laws protect against discrimination against children with diabetes. Children with diabetes have the same right to attend daycare as any other child. The legal protections against discrimination for children with diabetes are covered under the Americans with Disabilities Act and section 504 of the Rehabilitation Act of 1973.

The role of the clinician is not to know all the details about these laws but to alert parents and children that such laws exist and to provide them with related resources, such as contact information for the American Diabetes Association, which will be able to provide specific details of the laws in their state (ADA, 2017b).

DIABETES CARE AT SCHOOL

During the school day, students must perform blood glucose checks based on their plan of care, follow a healthy diet, and self-administer insulin or manage an insulin pump. These activities are carried out with assistance and supervision from the school nurse.

In their position statement “Diabetes Management in the School Setting,” the National Association of School Nurses (2017) stresses the importance of school nurses having current knowledge and competency in coordinating and providing care to children with diabetes. In conjunction with the family and the child, the school nurse develops an individualized healthcare plan (IHP) for the child. The IHP is based on the primary healthcare provider’s orders for diabetes management for the child and the nurse’s assessment. The IHP includes instructions on how the child’s diabetes will be managed in the school setting and who will be involved in the care.

The school nurse is also responsible for developing an emergency care plan (ECP) based on the primary healthcare providers orders and outlining how to recognize hypoglycemia and hyperglycemia, including which actions must be taken to correct these conditions. The nurse ensures that all school personnel having accountability for the child during the school day or during afterschool activities are provided with copies of the ECP and know how to act upon its instructions (NASN, 2017).

However, the school nurse may not always be available to assist and monitor each individual student. School-based occupational therapists, in collaboration with school nurses, are part of the interdisciplinary team and promote and maintain self-management skills and address the mental health concerns of children dealing with diabetes in the school setting (Polo & Cahill, 2017).

It is also important that parents play a supportive role in their child’s school diabetes management plan. Parent interventions include meeting with the child’s teachers and discussing with them the specific signs and symptoms their child may exhibit when their blood glucose level is dropping, such as becoming irritable or nervous or complaining of feeling hungry or dizzy. When teachers are aware of what to look for in children with diabetes, they can intervene more quickly (CDC, 2021b).

Physical Activity for the Child with Diabetes

Exercise is good for children with diabetes. Participating in sports promotes physical and psychological well-being and helps to maintain blood glucose control. Children with diabetes indicate that being involved in sports and other extracurricular activities helps them to cope with having a chronic condition and allows them to “feel normal,” but fewer children with diabetes participate in sporting activities and other extracurricular activities compared to those without diabetes. Participation is exceptionally low in children from poorer families contrasted to children from middle-class backgrounds (Beebe et al., 2017).

Fear of hypoglycemia is the main deterrent to participating in sports (Beebe et al., 2017). It is important that the diabetes management plan devised for each child includes recommendations for physical activities and also ways to prevent, detect, and treat episodes of hypoglycemia, such as more frequent blood glucose checks and adjusting insulin doses, meals, and snacks on days when the child participates in physical activities and sports (ADA, 2017a). Awareness is essential of these steps needed to prevent and treat hypoglycemia before and after physical activities.

The ADA and the American Academy of Pediatrics recommendations for children with diabetes include at least 60 minutes of moderate to strenuous physical activities every day. Further ADA physical activity recommendations include:

  • Ensure that the child has a pre-exercise glucose level of 90–250 mg/dL.
  • Ensure that the child has access to sources of carbohydrates before beginning physical activity or participation in sports.
  • Prepare a kit for the child to take to physical activity (e.g., team practices and games) that has snacks, glucose tablets, fruit juices, water, and medications recommended by the diabetes management team.
  • For organized sports activities, ensure that coaches are aware that the child has diabetes. Many school sports coaches have experience with children with diabetes, but it is still the parents’ responsibility to explain the child’s unique experience with diabetes to the coach and what interventions will be needed if a problem arises related to diabetes.
  • Ensure children with diabetes wear medical identification bracelets during all physical activities and sports events to alert others to the child’s condition, especially in an emergency situation.
  • Educate the child on the importance of taking a break from activities, even in the middle or near the end of a game, if they start to feel that something is wrong. Parents and coaches must re-emphasize this point with the child.
  • Determine how the insulin dosage for the meal prior to the physical activity should be reduced.
  • Include a bedtime snack after physical activity.
  • Frequently monitor blood glucose levels before, during, and after physical activity regardless of whether or not CGM is employed, which is essential to identify out-of-range blood glucose levels occurring with physical activity.
    (ADA, 2020a; Hess-Fischl, 2019)
ANSWERING PARENT/PATIENT QUESTIONS

Q:What should my child with diabetes be instructed to do if they start experiencing low blood sugar while participating in sports?

A:It is important that children understand that they must stop the activity immediately and not ignore how they are feeling. They should tell their coach or supervisor about how they are feeling and eat a snack. If possible, they should check their blood sugar. They should not be left alone at any time.

DIABETES SUMMER CAMPS

Summer camps play an important role in the lives of many children. They provide a time to make new friends, learn new skills, or experience living independently away from home. However, for children with diabetes, parents may mistakenly think that summer camps are out of the question.

Clinicians must acknowledge parents’ concerns, such as: Will the child remember to check their blood sugar level? What will occur if they run out of diabetes supplies at camp? Is there a medically trained person on the camp staff who has experience dealing with diabetes? Will they be able to care for the child 24-hours a day?

The American Diabetes Association offers camps for children with diabetes, located in most states. Physicians, nurses, and counselors experienced in treating diabetes are on staff and provide 24-hour supervision for the children. These camps provide physical and emotional benefits to children with diabetes as well as improve their skills in diabetes self-management. A 2019 survey to assess the effectiveness of the ADA camp curriculum found that at least 70% of the children who participated in the camps acquired or improved their existing skills in a minimum of one diabetes activity. These activities involved drawing up insulin, self-administering insulin shots, or changing their insulin pump sites (Fawcett, 2020).

Addressing Emotional and Psychosocial Issues

Clinicians must recognize the emotional burden that diabetes management places on the family and the child with diabetes. Quality of life can be compromised, and mental health issues can develop. In addition to dealing with the day-to-day burden of managing the condition, the physiology of diabetes can directly affect emotions. The emotional health of children with diabetes and their families must be taken into consideration by the healthcare team. Establishing a nurturing, trusting relationship with the child and the family is the first step in achieving positive outcomes. The ADA recommends including mental health professionals skilled in the area of childhood diabetes as part of the diabetes management team.

CHILDREN’S COMMON EMOTIONAL REACTIONS

Children at different ages and stages of development have varying reactions to living with diabetes. Preschoolers and children in the early school years have a tendency for “magical thinking,” which can lead them to believe that insulin shots will make their diabetes go away or, conversely, that the shots are a punishment for misbehaving. Other common fears in young children with diabetes include having “holes” left in their skin from shots or having no more blood left due to regular glucose monitoring (Perez, 2016).

Role-play is an important way for young children to express their fears and concerns about their condition. For example, using role play with a teddy bear in their interactions with young children with diabetes, clinicians can ask the child to show them how “Teddy” reacts when he gets a shot. This provides far greater insight into children’s thought processes than asking them how they feel about getting insulin shots (Perez, 2016).

It is important for parents and caregivers to be cognizant of the language they use regarding blood glucose levels. The terms bad and good are not useful descriptors of blood glucose levels and can imply to children, especially small children, that an out-of-range blood glucose level means that the child themself is bad (Lebow, 2019).

School-age children (7–8 years) struggle with the reality of requiring insulin shots for the rest of their lives. Children at this age may ask themselves, “What bad thing did I do to cause this, and what can I do to make it right?” Children may not vocalize these thoughts to their parents or the diabetes care team, but clinicians must be aware that such thinking exists and gauge their responses to explain that diabetes is not the result of bad behavior (Lebow, 2019).

Another common concern for school-age children with diabetes is feeling different from other children, leading to social isolation, for instance, stating, “No one will want to play with me if they know I have diabetes.” To offset such fears, children may deny that they have diabetes or believe that it will go away. While this may be a natural protective reaction at the time of diagnosis, clinicians must understand that, left unaddressed, such thinking may lead to serious consequences, such as the child not taking their insulin or refusing to follow dietary recommendations (Lebow, 2019).

DIABETES DISTRESS

Diabetes distress is a term used to describe a sensation of being overwhelmed or a feeling of failure or frustration in the person with diabetes. It is an increased level of emotional distress related to the specific burdens of living with diabetes and its treatment. The strain of living every hour of the day and night with diabetes is often heightened in families where divorce has happened and where there are economic and cultural barriers. Young women with diabetes are more susceptible to diabetes distress compared to their male counterparts (Hood et al., 2018; NIDDK, 2018; Tamborlane, 2021).

Research also indicates that interventions put in place before symptoms of psychological distress begin are effective in preventing the development of diabetes distress in children and adolescents. These interventions include resilience promotion by developing positive problem-solving skills, developing social supports, and fostering a sense of hopefulness (Gutierrez-Colina et al., 2020).

Research findings suggest that children and youth with diabetes have higher rates of anxiety, depression, and psychological distress compared to children who do not have diabetes. Depression is the most frequently occurring mental health condition in children and adolescents with diabetes. Family conflict over management of diabetes is another source of emotional distress for children and adolescents with diabetes. Research search shows that suicidal thoughts are common among adolescents with type 1 diabetes (Tamborlane, 2021).

Research has also found that children and youth with poorly controlled diabetes and recurring episodes of DKA are at a higher risk for underlying psychosocial problems or psychiatric illness than their counterparts who have good diabetes control.

Children who developed diabetes prior to the age of 5 years and with a history of poorly controlled diabetes should be closely monitored in school to identify learning difficulties. If problems are identified, these children will require a referral for psycho-educational or neuropsychological evaluations (Delamater et al., 2018).

The ADA recommends screening for symptoms of depression and diabetes distress beginning at ages 7 to 8 years for children with diabetes (ADA, 2020a). Symptoms of depression in children can include:

  • Poor performance in school
  • Reluctance to go to school
  • Complaints of body pains and hurting not related to injury
  • Irritability
  • Clinginess
    (CDC, 2020d)
ANSWERING PARENT/PATIENT QUESTIONS

Q:Are mood swings and depression common in youth with diabetes?

A:Mood swings and depression are commonly found in youth with diabetes. The stress of having to constantly live with diabetes—there are no “days off”—can be overwhelming for children and adolescents with diabetes. This sometimes manifests as what is called diabetes distress.

PARENT AND FAMILY STRESS

Diabetes care requires a round-the-clock, full-time commitment, and a diagnosis of diabetes in a child can be devastating for parents. First reactions include fear, concern, and guilt. Examples of parents’ questions include:

  • “What will happen to our child, and will they be okay?”
  • “Is our child’s diagnosis a result of something we did or didn’t do?”
  • “How will this affect the other children in our family?”
  • “Will we be able to manage our child’s care?”

It is vital that the healthcare team address these and other concerns not just initially but on an on-going basis and to acknowledge parents’ efforts to successfully cope with the challenges of diabetes care for their child (ADA, 2017a).

Studies show that parents of children with T1D are at high risk for depression and anxiety. Parents of children with a chronic health condition such as diabetes often focus their energy and attention on the child’s healthcare needs to the detriment of their own well-being. Clinicians must be constantly on the alert for caregiver burnout and help parents understand that maintaining their own physical and emotional health is essential for their child’s well-being (Whittemore et al., 2018).

Another problem parents may face is a child who is uncooperative with diabetes care. This may happen more often with older children who, despite the best efforts of their parents, rebel against treatment and insist on making their own decisions. This can be physically and emotionally exhausting for parents. In these instances, the child and parents are referred to a mental health professional on the diabetes management team.

The needs of other children in the family must also be acknowledged and receive attention. How siblings react to diabetes can vary. Common reactions include fear that they too will develop diabetes, resentment about the extra time and attention the child with diabetes receives, protectiveness of their sibling with diabetes, and a desire to be involved in the care of the child with diabetes. As far as possible, all children in the family are included in diabetes education and a family treatment plan (ADA, 2017a). Older siblings can be an important resource in supporting and encouraging the child with diabetes in standing up for themselves and educating others about their sibling’s diabetes (Children with Diabetes, 2019).

(See also “Adolescence and Diabetes” and “Transition to Adult Care” later in this course.)

CASE

James is eight years old and was diagnosed with T1D when he was four. He lives with his mother, Margot, who is a single parent, and his 9-year-old sister. James’s mother was devastated when he was diagnosed but was determined to learn how to manage her son’s care.

At his scheduled appointment today, James is quiet and clearly unhappy, and his mother looks anxious and exhausted. The clinician notices that Margot snaps several times at her son. Relying on the trusting relationship that she has developed with the family, the clinician asks Margot if she may speak with James alone. His mother agrees, and once she leaves the room, the clinician asks James if he has anything he wants to tell her. “I want to play soccer, but my mom won’t let me. I hate this stupid diabetes!” he responds.

The clinician then asks James to wait in the playroom while she speaks with his mother: “Are you having a difficult time at the moment? What can I do to help?” Margot bursts into tears, sobbing, “James wants to play soccer, but no matter how often I tell him it’s too dangerous, he won’t listen.”

The clinician discusses with James and his mother the positive benefits of exercise and explains that participating in team sports such as soccer is possible for children with diabetes. At the same time, the clinician acknowledges Margot’s fears and hesitation. As a first step, she suggests they prepare a list of questions and concerns. Then, Margot can meet with the soccer coach and discuss the possibility of James joining the team.

When they meet with the soccer coach a few days later, the coach tells Margot that he has had several children with diabetes on his teams over the years and that he understands her fears. Although she is still concerned about the risk of hypoglycemia, Margot agrees to let James start soccer practice twice a week. She and the coach review all the pertinent details of James’s condition and management plan. James is overjoyed and excitedly tells his mother, “I’m going to be like all the other kids!”

Developing Patient Independence in Diabetes Self-Management

As children get older, it is important that they learn to actively participate in their own diabetes care and that the parents’ role in their child’s diabetes care evolves from that of caretaker to coach (ADA, 2017a). This can be a challenging time for parents and children, and some parents can become overprotective, leading to a strained relationship with the child or the entire family (Lebow, 2019).

The clinician’s role during this developmental phase is to provide education, support, and reassurance and to help everyone recognize the need for the child to be able to safely self-manage their diabetes care by the time they are old enough to leave home or live independently.

How quickly a child will become independent in most or all of their diabetes self-management differs from child to child. Transfer of care to the child is best achieved in small, manageable steps. The clinician closely monitors and assesses the child’s readiness to learn new skills and their proficiency in performing each skill, such as drawing up and administering their own insulin (ADA, 2017a).

Advice that can be given to parents and families during this transition phase includes:

  • Maintain open communication, allow the child to express their concerns, and avoid telling the child how they should feel.
  • Ensure that the child knows they can reach out to their parents regardless of any problem, whether at home or at school, without fear of the parent’s anger or censure.
  • Nurture the child’s self-confidence while providing them with emotional and practical support.
  • Strive for balance between taking care of the child and allowing them to take care of themselves. For example, when traveling, parents can carry a backup blood-testing kit and insulin supplies in case the child forgets to bring them.
  • Listen to the child’s needs and make adjustments where possible while maintaining the rules that are in place to keep the child safe. If this becomes an area of contention between the child and the parents, the best course is to discuss it with the diabetes team, ensuring that the child is allowed to express their thoughts and have them validated.
  • Continue to advocate for their child, while teaching the child the skills and knowledge needed to advocate for themselves.
  • Remember to do fun things with the child on a regular basis, individually and as a family.
  • Do not allow the responsibility of managing diabetes to become the dominant force in the child’s life; make time for hobbies, laughter, and a balanced life.
    (Lebow, 2019)

Addressing Medical Neglect

A clinician may encounter a child in which parental involvement is less than optimal for diabetes care, and type 1 diabetes is one of the most common conditions related to medical neglect of children reported to Child Protective Services. The priority in such cases is the child’s well-being and safe management of their diabetes.

It is important for clinicians to identify children at risk for medical neglect. Including a social history in the initial assessment and inquiring about any new problems during follow-up visits are crucial in getting to know families and their circumstances. Interventions that can be put in place to help families include contact with social and community services and more frequent clinical visits with the child and family.

The reasons for medical neglect can be complex and not easily fixed. Factors may include parental psychiatric illness, substance abuse, and domestic violence. Other obstacles to ensuring adequate care for a child with diabetes include difficulty with transportation, lack of a caretaker for other children in the family, financial problems, difficulty understanding the complexity of care, and lack of caretaker motivation (Fortin et al., 2016).

In some cases, parents or caretakers of children with diabetes are juggling many other responsibilities, such as other children in the family, careers, and aging parents who may need their assistance. These demands on a parents’ time may mean that the child with diabetes will have multiple caretakers who may not all be properly educated in diabetes management.

Leaving a child with diabetes in the care of a person who has not received diabetes education and/or who is not provided with the supplies and medications to care for the child is considered medical neglect. The diabetes management team must emphasize to the parents that it is the parent’s responsibility to ensure that everyone who provides care for the child is educated in diabetes management. Clinicians can supply education materials that parents can use to train babysitters and other caretakers in providing safe care. They can also role play teaching sessions between parents and other caretakers (Fox et al., 2018).

Another “red flag” for medical neglect in a child with diabetes is recurrent admissions for DKA, together with the claim that the child has been sneaking food as the cause. Such an explanation by parents or a caretaker points to the possibility of medical neglect or, at the minimum, substandard attention to and/or poor understanding of diabetes management (Fox et al., 2018).

Clinicians must also be attentive to the difficulties families may have in navigating the healthcare system. For example, obtaining health insurance may be difficult for some due to the complexity of the process or the financial burden. Coordination with pharmacies, sometimes more than one, for diabetic supplies and insulin can also be an overwhelming task for families and inadvertently lead to medical neglect (Fortin et al., 2016; CDC, 2021c).