title: Diabetes MILES Youth-Australia: methods and sample characteristics of a national survey of the psychological aspects of living with type 1 diabetes in Australian youth and their parents.
abstract: BACKGROUND
  Type 1 diabetes is a complex and demanding condition, which places a substantial behavioural and psychological burden on young people and their families. Around one-third of adolescents with type 1 diabetes need mental health support. Parents of a child with type 1 diabetes are also at increased risk of psychological distress. A better understanding of the motivators, behaviours and psychological well-being of young people with diabetes and their parents will inform improvement of resources for supporting self-management and reducing the burden of diabetes. The Diabetes MILES (Management and Impact for Long-term Empowerment and Success) Youth-Australia Study is the first large-scale, national survey of the impact of diabetes on the psychosocial outcomes of Australian adolescents with type 1 diabetes and their parents.
  
  
  METHODS
  The survey was web-based to enable a large-scale, national survey to be undertaken. Recruitment involved multiple strategies: postal invitations; articles in consumer magazines; advertising in diabetes clinics; social media (e.g. Facebook, Twitter). Recruitment began in August 2014 and the survey was available online for approximately 8 weeks. A total of 781 young people (aged 10-19 years) with type 1 diabetes and 826 parents completed the survey. Both genders, all ages within the relevant range, and all Australian states and territories were represented, although compared to the general Australian population of youth with type 1 diabetes, respondents were from a relatively advantaged socioeconomic background.
  
  
  CONCLUSIONS
  The online survey format was a successful and economical approach for engaging young people with type 1 diabetes and their parents. This rich quantitative and qualitative dataset focuses not only on diabetes management and healthcare access but also on important psychosocial factors (e.g. social support, general emotional well-being, and diabetes distress). Analysis of the Diabetes MILES Youth-Australia Study data is ongoing, and will provide further insights into the psychosocial problems facing young people with type 1 diabetes and their parents. These will inform future research and support services to meet the needs of young Australians with type 1 diabetes and their families.
authors: Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Geelong, VIC, 3220, Australia. vhagger@deakin.edu.au.|The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, 570 Elizabeth Street, Melbourne, 3000, Australia. vhagger@deakin.edu.au.
authors: Virginia
authors: http://orcid.org/0000-0003-3845-2814
authors: V
authors: Hagger
authors: Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Geelong, VIC, 3220, Australia.|The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, 570 Elizabeth Street, Melbourne, 3000, Australia.
authors: Steven
authors: S
authors: Trawley
authors: Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Geelong, VIC, 3220, Australia.|The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, 570 Elizabeth Street, Melbourne, 3000, Australia.
authors: Christel
authors: C
authors: Hendrieckx
authors: Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Geelong, VIC, 3220, Australia.|The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, 570 Elizabeth Street, Melbourne, 3000, Australia.
authors: Jessica L
authors: JL
authors: Browne
authors: Department of Endocrinology and Diabetes and Centre for Hormone Research, Royal Children's Hospital and Murdoch Children's Research Institute, Melbourne, 3000, Australia.
authors: Fergus
authors: F
authors: Cameron
authors: Department of Medical and Clinical Psychology, Center of Research on Psychology in Somatic diseases (CoRPS) TSB, Tilburg University, Warandelaan 2, Tilburg, 5037 AB, The Netherlands.
authors: Frans
authors: F
authors: Pouwer
authors: School of Psychological and Clinical Sciences, Charles Darwin University, Darwin, 0909, Australia.
authors: Timothy
authors: T
authors: Skinner
authors: Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Geelong, VIC, 3220, Australia.|The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, 570 Elizabeth Street, Melbourne, 3000, Australia.
authors: Jane
authors: J
authors: Speight
mesh_terms: D000293:Adolescent; D001315:Australia; D002648:Child; D003922:Diabetes Mellitus, Type 1 / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006297:Health Services Accessibility; D006306:Health Surveys / Q000379:methods; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D012648:Self Care / Q000706:statistics & numerical data
keywords: Adolescents; Depression; Diabetes distress; National survey; Psychological well-being; Quality of life; Self-care; Type 1 diabetes