Type 1 diabetes (T1D) is a serious, life-long autoimmune condition where an individual’s immune system attacks the beta cells in the pancreas responsible for producing insulin, the hormone required to convert food into energy [1
]. Management of T1D requires a strict daily regimen of insulin injections, finger-prick blood tests and dietary monitoring. People with Type 1 diabetes must be constantly vigilant for episodes of hyperglycemia (extremely high blood sugars) or hypoglycemia (extremely low blood sugars), both of which can be life threatening. T1D is associated with serious long-term health complications including heart disease, vascular disease, kidney disease, blindness (retinopathy), and neuropathy [2
]. A number of large scale trials, for example, the Diabetes Control and Complications Trial, DCCT Research Group [3
], have demonstrated that with intensive management these complications can be minimized, however optimal metabolic control is elusive. While much research has focused on advancements in the clinical management of diabetes, particularly technological advancements in diabetes care, psychosocial, behavioural and contextual factors are less often documented in clinical care [4
]. Therefore further investigation into the influence of family dynamics and family context on adolescent diabetes self-management is warranted.
Disease onset for TID is rapid and usually occurs before or during adolescence [1
]. This is a time when young people are also negotiating major physical, cognitive and psychological changes, and are at heightened vulnerability for engaging in risk taking behaviours (e.g., alcohol and other drug use) and for developing mental health problems [5
]. While the rate of risk taking behavior has been found to be similar for adolescents with and without T1D, a general propensity toward risky behaviour in adolescents with T1D has been linked to poorer self care, and in turn to poor mental health and metabolic outcomes [6
Evidence suggests that adherence to diabetes self care regimes during adolescence is particularly poor [8
]. The pressures and changes of normal adolescent development can conflict with the self- awareness, restraint and orderliness needed to manage living with a chronic disease, and these tensions create a platform for significant personal and family stress and even mental illness [9
What is the appropriate role of parents in helping their child with T1D manage the transition to autonomous self-care? Parenting an adolescent can be challenging enough, but parents of children with a chronic disease have the added worry that their child will neglect self-care routines in their desire to do what other teenagers do – appear ‘cool’, experiment with alcohol, stay out late, compete with peers on the sporting field, lose weight – all those activities that can jeopardize dietary, life style and glucose/insulin self-management. Perhaps unsurprisingly, parents have been shown to experience anxieties and stress in relation to their child’s illness within four weeks of a Type 1 diabetes diagnosis in the family [10
]. Dashiff et al. [11
] in a qualitative study of 40 parents of adolescents with T1D, found parents indicated that they experienced ongoing struggle, worry and frustration about their parenting role. They reported providing support for their child’s transition to self-management mainly via the strategies of rewarding positive behaviours, providing reminders and granting more freedom. They also reported being aware that child self-management was poorer when they as parents engaged in scolding, judging, checking, nagging, or becoming emotional, but many parents found it difficult to stop these behaviours because of their worry about non-adherence. Similarly, in a study of parents of younger children with T1D, Wilson, DeCourcey and Freeman [12
] found children’s non-adherence, particularly in relation to mealtime misbehaviour, was associated with parents’ self reported over-reactive discipline.
An emotionally supportive and accepting parenting style (parental responsiveness) is well-documented as having enduring implications in improved quality of life for children and adolescents with T1D [13
]. In a sample of 81 adolescents with T1D and their parents, Botello-Harbaum and colleagues [13
] found that over a 12-month period, parental responsiveness continued to promote greater self-reported quality of life in their child. On the other hand, Drew et al. [14
] showed depleted family resources – emotional as well as financial – were associated with poorer metabolic control among 252 adolescents with T1D. Maintaining the daily routines necessary for diabetes management was less successful in families with lower parental acceptance (communication of love, warmth, acceptance) and higher levels of parental depressive symptoms, especially when there was the added stress of low family income. Rosenberg and Shields’ [15
] finding that stronger parental attachment was related to better metabolic control among 31 adolescents with T1D provides additional evidence for the importance of positive family dynamics as a background for young people learning self-management of chronic disease. That maintaining such positive dynamics is not an easy task is reflected in an Indian study of 50 parents of adolescents with T1D [16
]. Scores on the General Health Questionnaire (GHQ) showed 17 out of the 50 parents had a diagnosable psychiatric disorder, and nearly two-thirds showed tendencies toward psychological dysfunction. While the authors report that these effects are likely to be weaker in cultures where diabetes is less stigmatized, nevertheless they point to the stressful nature of having a chronically ill adolescent in the family, not just for the child but also for parent. Such findings highlight the apparent cyclical nature of successful chronic disease management of a family member, and mental and emotional wellbeing within the family as a whole.
Indeed, pediatric T1D is often characterized as a ‘family disease’ because of the important role of family interactions and parental support [17
]. In a study of 187 adolescents with T1D and their parents, Williams et al. [17
], in a US study, found close links between poor adolescent glycaemic control, family conflict and parental psychological distress. They suggest that effects are interactive, such that poorer family functioning is associated with poorer adolescent self-management, which in turn leads to more family conflict and distress.
In a Dutch study by deWit et al. [18
], parents rated the health and functioning of their adolescent with T1D using the Child Health Questionnaire (CHQ). Adolescents rated by their parents as healthier functioning and better behaved were more likely to have better glycaemic control as assessed by their HbA1c level. In particular, better metabolic control was correlated with parent-rated physical and mental health summary scores, child behaviour, the impact of their child’s disease on parents (both emotionally and time-wise) and participation in family activities. In more than 80 percent of their sample of 91 adolescents, metabolic control was sub-optimal, that is, HbA1c levels were above 7.5 percent, increasing the possibilities of these young people developing disease complications [18
]. That lower psychosocial well-being, more externalising behaviour, and greater family and parental impact were associated with weaker metabolic control again points to probable interactive relationships between disease control and family functioning, as suggested by Williams et al. [17
The aim of the current study was to attempt replication of studies showing the interactive effects of adolescent disease control and family functioning among a sample of Australian adolescents with T1D and their parents. The incidence of paediatric TID in Australia (and New Zealand) is particularly high, especially in comparison with other Western Pacific nations [19
]. Nearly three out of every thousand Australian children aged 10 to 14 (256 per 100,000) have been diagnosed with this disease, a prevalence that is rising year by year [1
]. Given that diabetes has been described as ‘one of the leading threats to the health of Australians’ (p.1) [20
], it is important to examine modifiable social and psychological factors relating to the disease within their specific contexts. While there is increasing emphasis being placed on the influence of T1D on family dynamics and parent psychosocial health, very few Australian studies have directly explored this relationship, or used both parental and adolescent reports of health and well-being. Additionally, studies from other countries examining these issues often use relatively small sample sizes, increasing the importance of replication particularly across a range of contexts.
Specifically, we aimed to assess family functioning, parent self-reported emotional wellbeing, and parental evaluation of child behaviour and adjustment via the Child Health Questionnaire [21
], and examine the relationships between these parent-reported variables and metabolic control (HbA1c), child-reported health and self-care. Our predictions, based on previous literature from other developed nations, were that higher HbA1c levels and poorer adolescent self-care would be correlated with poorer parent-reported child behaviour, poorer child mental health and lower levels of family functioning and parent emotional wellbeing.