Managing. In A Family With Diabetes

Transcription

1 Abstract Managing diabetes in a child or teen requires constant attention and adjustment of insulin, carbohydrate intake, and activity level. Intensive diabetes management has the potential to improve diabetes outcomes; however, negotiating the many lifestyle accommodations essential to optimal diabetes control can place a significant burden on some children and families. Parenting a child with diabetes also involves a complex process of helping the child to achieve age-appropriate independence while assuring the child s safety in managing his or her diabetes. Each developmental stage brings new challenges to achieving the delicate balance between optimal diabetes control and age-appropriate independence in self-care management. Despite the laborious and intensive nature of diabetes treatment, an overarching goal of parenting a child with diabetes is to ensure that the family s quality of life is maintained and the child is able to participate in all academic and social activities that their peers enjoy. Although many families adapt and thrive, others struggle to make these adjustments. Working with families who are overwhelmed, encouraging them to identify and develop networks involving schools, extended family, community, and church groups can help them to increase available support. Helping families to access treatment when they are struggling can relieve further pain and improve management adherence and diabetes outcomes. Nurses are in a key position to evaluate the family s adaptive and coping skills and assist them to negotiate the psychosocial challenges that living with diabetes entails. Key words: Children; Insulin-dependent diabetes; Parents; Psychosocial challenges. he purpose of this article about diabetes and families is to provide clinicians with an overview of challenges that families and children face across a developmental spectrum from a toddler with diabetes to the young adult moving into the adult healthcare system. This should help clinicians offer guidance to families as they face the challenges of life with a chronic illness, relieving T January/February 2011 Judith M. Ayala, MSW, LCSW, CDE, and Kathryn Murphy, PhD, RN Managing Psychosocial Issues In A Family With Diabetes MCN 49

2 some of their burden and better equipping them to cope. Diabetes is a labor-intensive chronic illness that is qualitatively different from many other chronic illnesses; there is never a time when one can hope for remission or a hiatus from the work of disease management. Educating families about diabetes enables them, to the extent that they are capable, to become the primary managers of their child s diabetes care (Brink & Chiarelli, 2004). At the time of diagnosis, children and parents are taught to analyze blood glucose patterns and to problem-solve with food, activity, and insulin so they are able to achieve assigned target goals. Ongoing education provides parents and patients with more sophisticated problem-solving skills and increases competence, confidence, adherence, and possibly family relationships (Chisholm et al., 2007). Providing families with the skills and support to achieve optimal glucose control is the key to lowering the risk of long-term macrovascular and microvascular complications (American Diabetes Association [ADA], 2010b; Brink & Chiarelli, 2004). Parenting a child with diabetes involves ongoing evaluation of the child s readiness for additional responsibilities of self-care management. Allowing the child to engage in age-appropriate activities while taking on some of the tasks of diabetes management requires that parents strike a delicate balance between allowing an age-appropriate degree of independence and ensuring the child s safety and good metabolic control. The relentless demands of daily management to minimize the short-term risks of acute hypoglycemia and diabetic ketoacidosis (a potentially fatal condition resulting from either an illness and/or insulin omission), as well as concerns about long-term consequences of suboptimal diabetes control, may be a source of significant stress for the entire family including the affected child, parents, a nd siblings (Hollidge, 2001; Streisand et al., 2008). Despite the clinician s best efforts to support the child and parents, some families are unable to cope and adjust. Family problems, childhood depression, eating disorders (EDs), and a variety of contextual factors (including poverty) are among the psychosocial problems that are associated with chronic poor diabetes control. Early identification of a child and family who are struggling is important because of the potential impact on child and family quality of life and diabetes outcomes (Lewin et al., 2006). Parenting Challenges: Balancing Safety and Developing Independence Parenting a child with diabetes involves a delicate balance between assuring that the child is medically safe and encouraging the child to assume a developmentally appropriate level of independence similar to that of their peers. There is a guiding principle that all affected families should know: Child First, Diabetes Second ; this helps parents to consider the bigger picture as they integrate diabetes into the structure of the child s and the family s life (Sullivan-Bolyai, Rosenberg, & Bayard, 2006). Infants and Toddlers: Developing a Support Network That Parents Can Trust Parents have described a sense of constant vigilance to convey the overwhelming and relentless responsibility they feel (Grey, 2009; Streisand, Swift, Wickmark, Chen, & Holmes, 2005; Sullivan-Bolyai, Deatrick, Gruppuso, Tamborlane, & Grey, 2003). One of the most salient sources of stress for mothers of young children with type 1 diabetes is the fear of hypoglycemia (Streisand et al., 2005). This struggle, while perhaps felt most acutely with young children, remains a constant struggle for many parents. Infants and toddlers with diabetes present unique challenges. A child s rapid growth, erratic eating, changing insulin demands, and limited ability to recognize hypoglycemia markedly increase the complexity of managing a young child s diabetes (Grey, 2009). Because of this, finding reliable and safe childcare for young children can be challenging for parents. Relatives, neighbors, and babysitters who were available before the diagnosis may no longer be a resource because parents are afraid to trust anyone but themselves in caring for their child s diabetes. Conversely, friends and family may be less willing to assist because they are now too frightened to care for the child (Sullivan-Bolyai et al., 2003). When both parents must work, the challenge of finding safe daycare is sometimes compounded by programs that continue to discriminate against children with diabetes and refuse admission despite federal laws protecting children with disabilities (ADA, 2010a). Going to School: A Safe and Seamless Experience Schools are required under federal law to accommodate the needs of children with diabetes within the usual school setting and allow them full participation in all school activities. Parents should be aware of their child s educational rights and accommodations provided under Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act of 1991, and the Americans with Disabilities Act (ADA, 2010a). Accommodation includes assistance with blood glucose monitoring, insulin administration and access to snacks as needed. A healthcare plan that clearly outlines responsibilities of parents, school personnel, and the child can foster an environment in which the child feels secure and parents are assured that their child is safe. School-age children with diabetes need to spend time outside the home, with friends in their homes, and with peers in group activities. To participate in activities independent of their parents, children with diabetes must assume responsibility of their diabetes care (Silverstein et al., 2005). Most children will need help with more sophisticated problem-solving skills such as calculating how much insulin to give to cover carbohydrates that are eaten or to correct a high blood glucose level. Because of this, parents should identify a responsible adult who can be available for consultation in managing blood glucose while at school, outings, sleepovers, and other activities. Although many children resent wearing medical-alert identification because they feel it makes them visibly 50 volume 36 number 1 January/February 2011

3 different, all children with diabetes should be encouraged to wear a medical-alert bracelet or necklace for their own safety. Adolescence: Safety and the Push/Pull for Independence Many parents, sensing their teen s increased need for independence, relinquish involvement in their teen s diabetes care. Parents may erroneously equate the teen s intelligence and drive for independence with confidence that they can be responsible for their diabetes management with minimal supervision. Some parents may prematurely hand over the responsibility simply because they are exhausted from years of intense management, and weary of the conflict and pushback from their teen. Given the complexity of care, many adolescents do not have the problem-solving ability, maturity, or skill to manage their diabetes independently (Helgeson, Reynolds, Siminerio, Escobar, & Becker, 2008). Helgeson and colleagues found that shared responsibility for diabetes care tasks between the adolescent and parent had a positive impact on an adolescent s psychological health, self-care behavior, and The intricacies of technology and more intensive management can potentially affect parental oversight. Basal bolus programs, multiple injections to provide background insulin as well as to cover carbohydrate intake, and insulin pumps necessitate that adolescents are able to independently make immediate management decisions. The challenge for parents is to develop a structure in which they can review decisions made by the adolescent to be sure that they are thoughtful and safe. Insulin pumps are becoming more sophisticated and refined; however, many parents are not as technologically savvy as their teen and find this daunting. This barrier can further marginalize the parent from being able to be involved in the diabetes care. For this reason, nurses should be sure to offer parents additional education and problem-solving training to bolster their self-confidence and to stay abreast of the changing technology with their child s pump (Streisand et al., 2005). Driving a car is a major concern for all parents at this stage. The healthcare team should initiate the discussion about safe driving when a teen with diabetes There is a guiding principle that all affected families should know: Child First, Diabetes Second. This helps parents to consider the bigger picture as they integrate diabetes into the structure of the child s and the family s life. good metabolic control. When diabetes management tasks were shared, the tasks did not fall solely on the teen or the parent, and shared responsibility was associated with less depression, less anger, higher diabetes self-efficacy, better self-care, and better metabolic control, particularly for the older adolescents (Helgeson et al., 2008). Families must find a balance between expecting their teen to manage diabetes self-care while still being watchful and ready to intervene when the adolescent falters. In their analysis of communication between 11- and 15-year-old children with diabetes and their parents, Ivey, Wright, and Dashiff (2009) found that trust between parent and child was an overarching theme. Parents statements reflected significant concerns about trusting their adolescent to care for his or her diabetes, and those concerns were associated with fear, frustration, and poor communication. Teens were reciprocally frustrated about their parent s lack of trust. This study suggests that clinicians can support parents and teens by facilitating trust and positive parent adolescent communication that is supportive rather than blaming (Ivey et al., 2009). is ready to drive, as parents may not think about setting up specific diabetes rules. Rules should include testing before getting behind the wheel, knowing to pull over immediately when feeling low, having a quickacting carbohydrate available to treat a low, and always wearing a medical-alert identification (Silverstein et al., 2005). The desire to fit in and experiment with alcohol, drugs, and sex add to the stress of parenting as these have greater ramifications when a child has diabetes. Preconception counseling should be provided during routine diabetes clinic ap pointments starting at pub erty to help teens underst and the risks of having diabetes and an unplanned pregnancy. Young girls must understand diabetes does not preclude future pregnancies, but preconceptional hemoglobin A1c (HbA1c) levels of <7% are optimal (ADA, 2010b). Meeting privately with the teen at some point during each clinic visit provides the opportunity to discuss safe sex practices and the effects of alcohol and substance use on diabetes and the teen s ability for self-care. January/February 2011 MCN 51

4 Consistency, a cornerstone of successful parenting, is also an essential component of parenting a child with diabetes. Young Adult: A Time of Transition For parents, letting go becomes a particularly harsh reality when their teen leaves for college or moves out of the home. The transition of a young adult moving from home to living on their own and independently managing their diabetes safely represents the cumulative efforts of years of training, education, and the establishment of good healthcare habits (Weissberg-Benchell, Wolpert, & Anderson, 2007). It is the responsibility of the diabetes team to s tart the process of transitioning the responsibility for self-care management early in adolescence. A significant challenge for parents is providing the support for a safe and seamless transition from the pediatric endocrinologist to an adult provider. Many young adults drop out of the system, unable to navigate the challenges of obtaining medical insurance, making and keeping appointments, and securing prescriptions. Pacaud, Yale, Stephure, Trussell, and Davies (2005) found that 31% of the adolescents in their survey had a lapse over 6 months between their last pediatric visit and their first adult visit, with 11% lost with no follow-up. Nurses can provide an extremely important service for young adults with diabetes by giving them concrete information on accessing health insurance, ordering ongoing diabetes supplies, making medical appointments, and choosing an adult endocrinologist who will meet their needs. Parenting Challenges: Parent Child Issues and Sibling Relationships Optimal diabetes control requires skilled parenting. Consistency, a cornerstone of successful parenting, is also an essential component of parenting a child with diabetes (Wysocki, 1997). Already viewing diabetes as a burden on their child, parents may have difficulty enforcing diabetes care expectations, including injections, blood glucose tests, and counting carbohydrates. However, these expectations, which are meant to ensure the child s safety, can actually be treated by parents as no different from other expectations for the child such as homework, curfews, and household chores, all of which should be non-negotiable. Reminding parents that hold- ing firm on expectations will enhance the likelihood that their child will grow up healthy and well adjusted and may help to deal with the inevitable guilt that parents experience when enforcing diabetes rules and consequences (Botello-Harbaum, Nansel, Haynie, Iannotti, & Simons-Morton, 2008). Although parents are the ultimate decision-makers, children need to be engaged and given some choices in their diabetes care (Wysocki, 1997). For instance, choosing not to test is not an option, but choosing which finger to test is negotiable. The quality of family life in both clinical and nonclinical cohorts has been associated with parenting styles that combine warmth and affection with thoughtful, firm limit setting and respect for their child (Botello-Harbaum et al., 2008; Schor & American Academy of Pediatrics, 2003). Siblings must also adjust when a child is diagnosed with diabetes. Although siblings may appear to be adjusting well, they may be experiencing anxiety, poor self-esteem, and survivor s guilt. They may worry silently about their sibling while not sharing their concerns with parents (Hollidge, 2001). Jackson, Richer, and Edge (2008) note that stress in the parents and the adjustment of the child with diabetes and that of their siblings are all interrelated. Psychoeducational groups for parents to better understand the needs of nondiabetic siblings and groups for siblings to discuss their experiences of living with a brother or sister with diabetes may be supportive to families, but the effectiveness of these types of interventions has not yet been demonstrated (Hollidge, 2001). Children and Families at Risk The chronic nature of diabetes can be stressful for even the most well functioning family unit and individual child; therefore, clinicians should be able to recognize the signs and symptoms of depression, eating disorders (ED), and the family who is struggling to identify children and families at risk and intervene accordingly. Childhood Depression Children and adolescents with type 1 diabetes may be at risk for depression when compared with their nondiabetic peers. Findings in a study by Hood et al. (2006) 52 volume 36 number 1 January/February 2011

5 Parents have described a sense of constant vigilance to convey the overwhelming and relentless responsibility that is felt by caretakers of infants and young children with diabetes. indicated that nearly one in seven youth with type 1 diabetes met the clinical cutoff for depression by their own report, that is, nearly double that of the highest estimate of depression in youth in general. Symptoms of depression include increased irritability, moodiness, a change in sleep pattern or appetite, loss of interest in once pleasurable activities, a drop in school performance, poor diabetes control, and a sense of being overwhelmed. Parents may dismiss these symptoms in their child as being lazy or not caring when in fact the child may be depressed. As objective observers, nurses are in a position to recognize these symptoms and help the family to understand behaviors that they may have attributed to other factors. Responding to childhood depression is important because it impacts the child s quality of life. Further, childhood depression has been clearly associated with poor metabolic control and episodes of diabetic ketoacidosis (Delameter, 2009). A number of clinically useful standardized instruments for screening children for depression are available. Kovacs (1985) Children s Depression Inventory is a self-report measure of depressive symptoms designed for children and adolescents. The Beck Depression Inventory (Beck et al., 2001) is a self-report inventory for individuals ages 13 and over, which rates the severity of depressive symptoms. In addition to antidepressants, several treatment modalities such as cognitive behavioral therapy, individual and/or family therapy, as well as interventions that improve problem-solving skills and further diabetes education may decrease depression in children and adolescents with diabetes (Kanner, Hamrin, & Grey, 2003). Disordered Eating Diabetes management demands an inordinate emphasis on food. Children are taught to count carbohydrates and match insulin for meals and snacks. Low blood glucose reactions are treated with food, regardless of whether the child is hungry or not. If the blood glucose is high and the child is not on a basal bolus program, food, meals, and snacks may have to be postponed or eliminated. The literature is conflicting with regard to whether children with diabetes are at higher risk for EDs or disordered eating behaviors (DEBs) than their peers. Some studies have found that girls with type 1 diabetes meet diagnostic criteria at significantly higher rates than nondiabetic peers with estimates up to 16% (Kelly, Howe, Hendler, & Lipman, 2005). Insulin omission has been identified as a method of purging and a strategy that adolescent girls with diabetes may use to lose weight (Kelly et al., 2005). There are a wide range of signs and symptoms of ED/DEB in youth with type 1 diabetes, which can vary in severity. Acute weight loss accompanied by an elevated HbA1c may indicate deliberate omission or underdosing of insulin or disturbed eating practices (Kelly et al., 2005). Recurrent hospitalizations for diabetic ketoacidosis may be indicator of an ED/DEB (Silverstein et al., 2005). There are a variety of tools to assess EDs in general; however, they often fail to identify insulin omission as a primary weight loss strategy (Kelly et al., 2005). The Diabetes Eating Problems Survey is a tool that specifically targets individuals with diabetes (Neumark-Sztainer et al., 2002). If clinicians suspect a patient is struggling with an ED/DEB as indicated by rapid weight loss or gain, frequent dieting, purging behaviors, insulin omission, elevated HbA1c, frequent diabetic ketoacidosis, and low self-esteem, a thorough assessment by a multidisciplinary team should be recommended (Kelly et al., 2005) Parenting and Family Stress The stress that parents experience when caring for a child at home with diabetes places them at risk for anxiety, depression, and other adjustment disorders. One third of parenting stress the first year after diagnosis has been shown to be associated with parents perceived inability to execute the diabetes regimen, the responsibility for diabetes management, and fears of hypoglycemia (Streisand et al., 2005). Depression and anxiety may impede parents ability to understand and use information, and therefore should routinely be assessed during follow-up (Streisand et al., 2005). Educators can incorporate a rating of self-efficacy after each training module that could highlight areas in which a parent needs extra education/ support (Streisand et al., 2008). In addition, educators can forewarn parents that they can expect an increase in their level of stress as they adjust to their child s illness January/February 2011 MCN 53

6 The transition of a young adult moving from home to living alone and independently managing their diabetes safely represents the cumulative efforts of years of training, education, and the establishment of good healthcare habits. and assure them that this is normal. However, if symptoms persist or interfere with day-to-day functioning, a mental health referral may be warranted (Streisand et al., 2008). The importance of family functioning to diabetes outcomes including metabolic control and risk for diabetic ketoacidosis is clearly evident in the literature. Family factors such as communication style, level of conflict, parental involvement in diabetes care, and overall functioning have shown strong associations with suboptimal diabetes control (Anderson et al., 2009; Lewin et al., 2006). Significant family issues that persist once addressed by the clinician should be referred to a family therapist or other mental health professional. Creating a Safety Net for Children at Risk In addition to mental health problems, overwhelming life issues such as poverty, being underinsured, and living in single-parent family are also associated with poorer outcomes (Thompson, Auslander, & White, 2001). Creating a village by involving and strengthening extended family and community resources is imperative for families at very high risk (Butler & Lawlor, 2004; Thompson et al., 2001). Broadening the traditional definition of family to include extended family, friends, and neighbors widens the support available to assist the parent who is overwhelmed with life issues that impact their ability to safely care for their child. A close relationship with the diabetes care provider can serve as an important resource for families, as irregular and infrequent contact with the healthcare team has been found to be negatively associated with metabolic control (Delameter, 2009). In-home multisystemic therapy can also provide support for children with chronic poor metabolic control. Ellis et al. (2005) demonstrated that intensive, homebased psychotherapy improved testing adherence and reduced diabetes-related stress among teens with chronically poor diabetes control. This stress reduction could improve the psychological well-being of a subset of these adolescents. Collaboration between the school nurse and the diabetes team also has the potential for strengthening the child s safety net (Butler & Lawlor, 2004). Glycemic control improved in a group of poorly controlled children and adolescents when school nurses supervised blood glucose monitoring and injections at school (Nguyen, Mason, Sander, Yazdani, & Heptulla, 2008). Sometimes families living in chaotic households may require a less-intensive management program that is simpler and more realistic for the family to carry out. For example, prescribing an insulin program using premixed insulin instead of a basal bolus program can be helpful. Perhaps a family that is unwilling or unable to embrace blood glucose testing six times per day will be able to commit to a less demanding program of two tests per day. Although programs such as this fall short of what most healthcare providers would prefer to prescribe, adherence may be better. Healthcare providers cannot lose sight of the important finding from the Diabetes Control and Complications Trial, which demonstrated that ANY improvement in diabetes control is beneficial in decreasing the risk of the progression of complications. Reducing the HbA1c from 12% to 11% falls far short of an ideal goal of intensive management but a 1% reduction is associated with significant risk reduction in long-term microvascular complications, as shown in the classic study by Skyler (1996). Clinical Implications Nurses who are aware of the psychosocial challenges families face caring for a child with diabetes can play a seminal role educating, advocating, and intervening to help children and families live well with this chronic condition. As nurses who seek to provide the best medical and family-centered care possible: Recognize and address the barriers that parents of toddlers and infants with diabetes face in developing a supportive network of caregivers. Remember that one goal in raising a child with diabetes is to provide them with the same opportunities 54 volume 36 number 1 January/February 2011

7 in school and social activities as their peers without diabetes. Assist the family in advocacy and planning. Advise parents of the need for their continual involvement in their teen s diabetes care. Ensure that young adults who are transitioning to seeing adult endocrinologists rather than pediatric endocrinologists are knowledgeable about navigating the healthcare system. Recognize and discuss with parents the family dynamics that do not support optimal diabetes control. Teach parents the importance of paying attention to nondiabetic siblings and providing them with an opportunity to discuss how diabetes has impacted family life. Be cognizant of the signs and symptoms of disordered eating, depression, and overall family functioning. Help families develop a village that involves a supportive network involving schools, extended family, friends, and community resources. Judith M. Ayala is a Social Worker, Diabetes Center for Children, The Children s Hospital of Philadelphia, Philadelphia, PA. She can be reached via at Ayala@ .chop.edu. Kathryn Murphy is the Associate Director, Diabetes Center for Children, The Children s Hospital of Philadelphia, Philadelphia, PA. She can be reached via at Murphy@ .chop.edu. The authors have disclosed that there are no financial relationships related to this article. DOI: /NMC.0b013e3181fc5e94 References American Diabetes Association. (2010a). Diabetes care in the school and day care setting. Diabetes Care, 33(Suppl. 1), S70 S74. doi: / dc10-s070 American Diabetes Association. (2010b). Standards of medical care in diabetes Diabetes Care, 33(Suppl. 1), S11 S61. doi: / dc10-s011 Anderson, B. J., Holmbeck, G., Iannotti, R. J., McKay, S. V., Lochrie, A., Volkening, L. K., & Laffel, L. (2009). Dyadic measures of the parentchild relationship during the transition to adolescence and glycemic control in children with type 1 diabetes. 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