Internet-Based Chronic Disease Self-Management for Youth

Internet-Based Chronic Disease Self-Management for Youth

Jennifer Stinson (The Hospital for Sick Children, Canada) and Navreet Gill (The Hospital for Sick Children, Canada)
DOI: 10.4018/978-1-4666-4422-9.ch012
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Chronic health conditions in children and youth are important health problems that seriously affect all aspects of their everyday lives. There is growing recognition of the need to promote disease self-management in youth with chronic health conditions. While there is evidence of the effectiveness of self-management programs to improve health outcomes in pediatric chronic illnesses, there are barriers to youth receiving these services. Internet-based programs offer an innovative approach to improve the availability, accessibility, and acceptability of these programs. This chapter provides an overview of Internet-based chronic disease self-management treatment programs for children and youth. It defines and describes the underlying theories, processes, and content elements of Internet-based self-management programs. Practical tips for program development and evaluation in terms of improved health outcomes are also discussed based on the authors’ experience with developing the “Teens Taking Charge: Managing Arthritis Online” self-management program for adolescents with arthritis. Future directions for theory, research, and clinical practice are also described.
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Self-management can be defined as “the individual’s ability to manage the symptoms, treatment, physical and psychological consequences, and life style changes inherent in living with a chronic illness” (Barlow, Wright, Sheasby, Turner, & Hainsworth, 2002, pp.178). It is a dynamic and continuous process of self-regulation that encompasses the ability to monitor one’s health condition and to carry out the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life (Barlow et al, 2002). The daily tasks requiring self-management are three-fold:

  • 1.

    Taking care of one’s overall health (e.g., healthy eating, being physically active, relaxing and reducing stress, and being knowledgeable about one’s condition, treatments and medications, etc.);

  • 2.

    Carrying on with normal activities and roles in life (e.g., maintaining healthy social relationships and staying involved in home, social, and school/work activities); and

  • 3.

    Managing the emotional changes that are inherent in the chronic illness experience such as anger, fear, frustration, low mood, etc. (Lorig & Holman, 2003; McGillion LeFort, & Stinson, 2008).

To successfully manage these tasks, individuals with chronic health conditions need a set of core self-management skills which include: problem-solving skills; decision-making skills; how to find, evaluate and utilize appropriate resources; how to work effectively in partnership with health care providers and; how to take action to change behavior (McGillion et al., 2008).

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