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News & Press: World Diabetes Day

World Diabetes Day 2018: The Family and Diabetes

Wednesday, November 14, 2018  


 

 



Diabetes affects every family, but this impact is the most significant in pediatric diabetes – it is quite common to hear that when a child has been diagnosed with diabetes, some parents say “we’ve been diagnosed”. New responsibilities and psychological distress may change the previous family structure, responsibilities, roles (some parents are even giving up a job) and the relationships between parents/caregivers and children (including healthy siblings). On the other hand, the family affects the diabetes outcomes. As summarized in the recently published ISPAD guidelines, ”the research literature has consistently demonstrated that family factors are integral to the management of diabetes in children. Cross-sectional and prospective studies have shown that high levels of family cohesion, authoritative parenting, agreement about diabetes management responsibilities, supportive behaviors, parental monitoring of diabetes management, and collaborative problem solving are associated with better regimen adherence and glycemic control, while family conflict, diffusion of responsibilities, and over- or under-involvement in diabetes management relative to the child's developmental level and abilities have been associated with worse regimen adherence and glycemic control” (1).


Children go through distinct periods of development as they grow from infants to young adults and each developmental stage has its own challenges. The younger the child is, the more involved in diabetes care and self-management the parents/guardians are. One of the main challenges for families, is the level and intensity of support provided in adolescence. As we read in the ISPAD Guidelines, although the level of support provided by parents decreases as adolescents get older and take a greater degree of responsibility for their diabetes management, premature withdrawal of parental involvement is associated with poor diabetes outcomes, whereas continued parental support and monitoring is associated with better outcomes. However, it must be noted that over-involvement by parents is associated with poorer metabolic control, and is a stronger predictor of metabolic control than age, gender, or insulin treatment regimen (1).


The role of the parents/guardians in diabetes management changes overtime, but their continuous support is essential to maintain diabetes self-management and quality of life. Health-care professionals should never forget about the bilateral impact of the family and diabetes, especially during the first months after diagnosis. It is important to note that many parents have psychological distress after the diagnosis of T1D in their children (1). On average, 33.5% of parents report distress at diagnosis, with 19% of parents reporting distress 1 to 4 years after diagnosis, and the estimates of clinically elevated symptoms of depression and anxiety have been reported to be as high as 74% and 59%,respectively, in the month following diagnosis (2). Another study found that even one fourth and one fifth of fathers met critera for a diagnoses of post-traumatic stress-disorder (PTSD) 6 weeks after their child had been diagnosed (3). Providing support to parents after the diagnosis of diabetes of their child is an important need and can promote better diabetes management (1).


The support should be offered to parents/carers at any stage of the diabetes duration, if necessary. In some cases, diabetes distress may last much longer than a year after diabetes diagnosis. It’s important to recognize the problem, as diabetes distress in parents/caregivers may lead not only to lower parental self-efficacy for diabetes management and greater child behavior problems, but to poor diabetes control as well. Also, diabetes distress is usually associated with fear of hypoglycemia, that may lead to a "hypoglycaemia avoidance behavior", and consequently, to poorer glycemic control that increases the risk of long-term complications (4). Understanding what families of children and adolescents with diabetes must face, as well as recognizing and meeting the needs of both, parents/caregivers and a child with diabetes, are essential to achieving optimal diabetes control, avoiding long-term complications and maintaining satisfactory quality of life.

Click here and read more about this topic in the ISPAD Clinical Practice Consensus Guidelines 2018: Psychological care of children and adolescents with type 1 diabetes.

References:


1. Delamater AM, de Wit M, McDarby V, Malik JA, Hilliard ME, Northam E, et al. ISPAD Clinical Practice Consensus Guidelines 2018: Psychological care of children and adolescents with type 1 diabetes. Pediatr Diabetes. 2018;19 Suppl 27:237-49 DOI: 10.1111/pedi.12736.


2. Streisand R, Mackey ER, Elliot BM, Mednick L, Slaughter IM, Turek J, et al. Parental anxiety and depression associated with caring for a child newly diagnosed with type 1 diabetes: opportunities for education and counseling. Patient education and counseling. 2008;73(2):333-8 DOI: 10.1016/j.pec.2008.06.014.


3. Landolt MA, Ribi K, Laimbacher J, Vollrath M, Gnehm HE, Sennhauser FH. Posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. Journal of pediatric psychology. 2002;27(7):647-52


4. Barnard K, Thomas S, Royle P, Noyes K, Waugh N. Fear of hypoglycaemia in parents of young children with type 1 diabetes: a systematic review. BMC Pediatr. 2010;10:50 DOI: 10.1186/1471-2431-10-50.


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