Quality Standards for Diabetes Care Toolkit

Introduction

The term ‘young people’ includes individuals up to the age of 25 who, based on different needs, can be divided into children, adolescents and young adults. Diabetes Youth New Zealand states there are about 2500 children and young people aged 0 to 18 years living with type 1 diabetes in New Zealand and about 200 with type 2. Numbers are estimated to be growing by 10% annually. While type 2 is often thought to be the milder form of diabetes, research has demonstrated that young onset type 2 is the more lethal phenotype, being associated with greater mortality, more complications and unfavourable cardiovascular risk factors than type 1 (Constantino et al 2013). In response to growing awareness of the risks associated with early onset type 2 diabetes, the Diabetes Care journal published a series of articles on the TODAY (Treatment Options for Type 2 diabetes in Adolescents & Youth) study, a randomised clinical trial testing the safety and effectiveness of three treatment interventions. They can be accessed here: http://care.diabetesjournals.org/site/misc/todayseries.xhtml.
For children and young people, it is important for care and support to be provided by practitioners who are appropriately educated and experienced. Issues such as trust and rapport are particularly important when working with young people, as is the tailored delivery and content of information and advice.
While children and adolescents face many of the same challenges as adults with diabetes, they have additional ones due to the fact that they:

are still growing and need to balance dietary control with nutritional needs and desires

are emotionally and intellectually immature

need support and information pitched at an appropriate level for the individual

are subject to peer influence – both positive and negative

may need to deal with contraceptive/pregnancy concerns (see Standard 20)

are presenting as individuals but within a family/whānau structure and need parental support. That support, however, needs to enable autonomy as they make the transition to adulthood and increasingly take control of their own treatment decisions and self-management.
Engagement and education of family/whānau members is therefore important, as is that of educational facilities where children and young people spend considerable amounts of time (refer to the resources section). It is suggested that schools and other educational facilities should not only have specific information about diabetes but should also have individual records for each child with diabetes enrolled in the facility, in order to support their daily diabetes needs as well as respond to emergency situations. A multidisciplinary team approach to care delivery for both individual and family/whānau is therefore required. The team should include developmental expertise, youth health specialists (eg, paediatrician, endocrinologist), diabetes clinical nurse specialist/nurse practitioner, health psychology and dietetics. Brierley et al (2010) suggest that an ideal service would also incorporate psychological support for the professional team as working with young people is emotionally challenging.
The need for psychological support of young people with diabetes is borne out by research findings. A review by Cameron et al (2007) noted that psychological morbidity is increased in children with diabetes just as with other chronic conditions. ‘Initial adjustment to diabetes is characterised by sadness, anxiety, withdrawal and dependency and ~30% of children develop a clinical adjustment disorder in the three months after diagnosis. Such difficulties often resolve within the first year but poor adaptation in this initial phase places children at risk for later psychological difficulties’ (p 2717). Longitudinal studies have found long term prevalence of psychiatric disorder in those with youth diabetes to be 2–3 times that found in the general population. The authors conclude that as mental health issues appear to be prognostic of maladaptive lifestyle practices, long term glycaemic control issues and early onset of complications, mental health screening should be considered as important as screening for other complications. ‘Routine screening for behavioural disturbance should begin in children at the time of diabetes diagnosis, with further assessment of parental mental health and family functioning for at-risk children. Interventions can then be targeted based on the specific needs of individual children and families’ (p 2720).
A recent study in the Journal of Adolescent Health identified a pattern of declining glycaemic control in the six years following diagnosis and concluded that psychosocial burdens, particularly diabetes-related quality of life, were instrumental. Depression levels were higher in those with type 2 than those with type 1 (Hood et al 2014).
Adherence among young people is a big issue, leading to early diabetes-related complications. Hanghøj and Boisen’s (2013) review of 28 studies of self-reported barriers to medication adherence among adolescents identified a range of barriers including forgetting; lack of motivation; stress and burnout; time pressure and lack of planning; lack of social support – including parental autonomy support; rebellion – not wanting to be told what to do; stigma of being different from peers; embarrassment; and being influenced by peers’ poor medication habits.
As children generally present within a family/whānau context, provision of parental education and support is an integral part of caring for the child with diabetes. Not only can parents support their child’s understanding of their condition and the importance of medication and lifestyle, but they are also responsible for creating the home environment within which the child grows up. However, the way in which parents provide support has been found to impact on their children’s outcomes, particularly during adolescence. In reviewing the literature, Moore et al (2013) concluded that better metabolic control was associated with greater parental responsiveness, defined as communication of warmth, love and acceptance; better emotional and financial family/whānau resources; and stronger parental attachment. Their own Australian study of families with a teenager with type 1 found poorer metabolic control and less adequate self-care to be associated with lower levels of family functioning, more adolescent behavioural difficulties and poorer adolescent mental health. They concluded that ‘the findings of the current study suggest the importance not only of providing information on diabetes to families, but of providing parents and adolescents with information and support on how best to strengthen their relationships, manage their emotions and maintain open communication channels in order to assist the young people with type 1 diabetes in their transition to the independent self-management of their condition’ (Hood et al 2014).