Dr Naomi Hackworth
Associate Professor Britt Klein
Associate Professor Jan Matthews
Ms Kylie Burke
Professor Mike Kyrios
Associate Professor Fergus Cameron
Associate Professor Elisabeth Northam
Dr Lisa Ciechomski
Parenting Research Centre
$150,000 (Total funding $249,443)
Victorian Government Department of Education and Early Childhood Development $99,443
beyondblue Victorian Centre of Excellence
Project completion year
In addition to the normal developmental challenges of adolescence, young people with type 1 diabetes (T1D) are at risk of a range of negative psychological outcomes including depression, behavioural problems and lower health-related quality of life.
Parents have a protective role in mediating risk for adolescents. Supportive parenting has been shown to be associated with improved diabetes management and quality of life among adolescents with T1D. With poor adolescent adjustment, there is often associated parent distress. Therefore, there is merit in addressing both parent and adolescent needs in an intervention approach aimed primarily at reducing risk and increasing positive outcomes for adolescents with T1D.
Parenting programs have demonstrated effectiveness for both parents and their children across a diverse range of childhood difficulties including behavioural and health issues. In particular, programs with information and strategies on how to maintain or develop positive relationships, deal with difficult behaviors, manage family conflict, and promote adolescent resilience and autonomy, have been shown to be particularly useful.
Taking a cognitive-behavioural perspective, the Nothing Ventured Nothing Gained (NVNG) on-line intervention consists of two parallel programs, one for the adolescent and one for their parent. Both programs are designed to be self-administered over six weeks and contain a combination of psycho-educational material, learning activities, audio modelling, and quizzes with feedback. Parents and adolescents are encouraged to set goals, put relevant strategies into practice between sessions and self-reflect on the outcomes. Parents have an additional module on looking after themselves.
The advantage of an online intervention is that some families are socially or geographically isolated and the internet is one way of increasing access to interventions aimed at reducing adolescents’ propensity to neglect their T1D-related self-care. Most young people, including those from disadvantaged circumstances, have access to a computer, thus a web-based intervention has potential to engage adolescents who are typically early adopters of new technology.
To evaluate the efficacy of the NVNG program, a randomised controlled trial was conducted with volunteer patients and their parents from paediatric diabetes clinics at the Royal Children’s Hospital, Melbourne, Monash Medical Centre and associated rural outreach clinics. After completing pre-intervention assessments, parent/child dyads were allocated to either the intervention group, which received immediate access to the program, or the wait-list control group. All adolescents continued to receive usual care from their regular diabetes clinics throughout the course of the study.
It was hypothesised that adolescents who completed the NVNG program would show improvement in psychosocial measures of anxiety, depression, quality of life, self-efficacy, parent-reported child wellbeing, self-care, family communication, and metabolic level (HbA1c). Furthermore, parents who completed the NVNG program would report pre/post improvements in negative affect, self-efficacy and family communication. It was proposed that improvement for both parents and adolescents would be greater than that demonstrated by the wait-list control group.
Recruitment for the study resulted in considerable interest with 236 adolescents with T1D and 231 parents volunteering to take part. Ages of the adolescents ranged from 13 to 18 years, 43 per cent were males and 57 per cent were females. Parent ages ranged from 30 to 69 years and 83 per cent of them were mothers. While expressed intentions to participate were high, actual participation was much lower. Fifty four adolescents and 72 parents completed a pre-intervention assessment and those assigned to the intervention group received the program immediately. However, only 24 (45 per cent) adolescents and 41 (57 per cent) parents went on to access the NVNG program. The main barrier to participation reported by both parents and adolescents was busyness. Lack of motivation was also a frequently reported barrier, particularly for adolescents, while difficulty in understanding the program and computer problems were a concern for parents.
To obtain an indication of program effect, data were analysed for a sub-sample of parents and adolescents in the intervention condition who accessed the program (i.e. Completers), compared with those who did not access the program (i.e. Non-completers). Examples of the results are presented next. Parent reports showed positive findings for parental stress and anxiety for those who had completed the program. There was no change in fatigue and self-efficacy, however, parents’ pre-intervention scores were within the ‘normal’ range for both of these measures.
Data on adolescents who had accessed 80 per cent or more, compared with those who had not accessed the program, showed findings for Completers in the expected direction for resilience and self-esteem. There was also a positive finding for Completers for adolescent-reported depression symptoms, but a finding in an unexpected direction for anxiety, with a slight increase in anxiety for Completers and decreased anxiety for Non-Completers. Two parent-reported indicators of adolescent physical health showed positive change for Completers compared to Non-Completers.
Parents and adolescents provided information on family outcomes, such as communication, conflict and diabetes responsibility and there were some differences in what parents and adolescents reported. For example, adolescents in the Completer group had changes in the expected direction for communication, but parents’ scores showed no change. Adolescents, but not parents, in the Completer groups reported positive change in aspects of conflict. There were also different findings for adolescent and parent data with regard to diabetes responsibility.
Parents reported on the impact that their child’s diabetes had on family functioning. There were findings indicating pre to post improvement for Completers in five of six subscales of a family management measure.
The majority of parents who completed satisfaction questionnaires found the program easy to use and reported that they had enjoyed using the program, had learnt new skills, and that the program contained useful information. Most of the adolescents who responded said the program was easy to use, but their level of satisfaction was lower than the parents’.
The results of this study show that the NVNG program has potential as an intervention although further research is needed to establish conclusively the efficacy of the program and the conditions under which the most cost-effective outcomes can be achieved. What is clear is that while perceived need and interest are high, program attrition is also high. It is possible that a self-administered online program without any practitioner input is unlikely to engage and sustain all those in need of support. Ways to address this issue may be to move from a self-administered model towards a ‘minimal assistance’ model, where additional support is provided by a relevant professional. That is, program completion may be enhanced by embedding NVNG in existing service delivery where families could be referred to the program at the time when they most need it and be given the level of assistance, encouragement and support that matches their needs.