Young people taking responsibility for self-management of chronic conditions: when is the ideal time?

 

EBN’s next Twitter Chat: Wednesday, Dec 11 at 8pm UK time. Use the hashtag: #ebnjc

Twitter Chat Lead:  Dr. Line Caes

Lecturer at the Division of Psychology, Faculty of Natural Sciences, University of Stirling. @linecaes

Adolescence is a stage in development characterised by rapid changes in physical, cognitive, emotional and social functioning, which when combined with the experience of a chronic illness can create unique challenges (Viner & Christies, 2005). For adolescents with a chronic illness, an additional developmental task is to gain independence for their disease self-management. Successful transfer from parent-led to adolescent-led disease management is key to adaptive management of the chronic illness into adulthood, thereby preventing continued disability. Across several chronic illnesses, it has been found that optimal executive functioning (i.e., the capacity to coordinate thoughts and behaviours including skills such as decision making and planning) within the context of a supportive parent-child relationship is essential for a smooth transfer of disease management  responsibilities (Hatchette et al., 2006; Helgeson et al., 2008). However, such executive functioning skills are still developing in adolescence and could therefore put adolescents at risk for problematic disease management.

Indeed, while executive functioning improves throughout childhood, not all processes demonstrate linear development with some aspects (e.g. decision making and working memory) showing a dip in performance during early adolescence(Blakemore & Choudhury, 2006). The increasing independence combined with this eratic development of executive functioning could in part explain why adolescence represents the developmental stage with the worst ratings for engagement with disease self-management (e.g. Costello et al., 2016; Miller et al., 2012; Simons et al., 2010). While no evidence is available on the exact mechanisms, preliminary findings in paediatric diabetes suggest that the development of executive functioning plays a prominent role in diabetes care. For example, considerable parent-child agreement on who takes responsibility for diabetes-related tasks and increased levels of executive functioning were positively associated with greater self-management and adherence. This in turn considerably improved their quality of life (Berg et al., 2014; Miller et al., 2012; Smith et al., 2014). More recent evidence therefore suggests that continued, supportive parental involvement might be particularly beneficial to adolescents with impaired or low levels of executive functioning (Berg et al., 2019).

Taken together, these findings highlight the difficulties with identifying an ideal timing for a smooth and successful transfer of responsibility from parent to adolescent for disease management. In this Twitter Chat, I would like to explore your perspectives on the challenges involved with determining the right time and approach to support adolescents,

in taking more responsibility for their disease management.

To get your started, I have added some key questions that we will discuss in the Twitter Chat.

  1. In the context of living with a paediatric chronic illness, what are the main barriers that adolescents and families face with regard transferring responsibilities for disease management?
  2. Which executive functioning skills do you think adolescents need to master to ensure a smooth transfer of responsibilities?
  3. Do you observe difficulties in adolescent to master those important executive functioning skills? If so, which skills present the most difficulties?
  4. Do adolescents differ in terms of the age at which they master these executive functioning skills? If so, how do you determine when a good age is to start this gradual transition of responsibilities?
  5. How do you think that health care professionals can better support adolescents and families to ensure a smooth transition of responsibilities?

References:

Berg, C. A., Wiebe, D. J., Suchy, Y., Hughes, A. E., Anderson, J. H., Godbey, E. I., … & King, P. S. (2014). Individual differences and day-to-day fluctuations in perceived self-regulation associated with daily adherence in late adolescents with type 1 diabetes. Journal of pediatric psychology, 39(9), 1038-1048.

Blakemore, S. J., & Choudhury, S. (2006). Development of the adolescent brain: implications for executive function and social cognition. Journal of child psychology and psychiatry, 47(3‐4), 296-312.

Costello, R. W., Foster, J. M., Grigg, J., Eakin, M. N., Canonica, W., Yunus, F., … & Group, R. E. (2016). The seven stages of man: the role of developmental stage on medication adherence in respiratory diseases. The Journal of Allergy and Clinical Immunology: In Practice, 4(5), 813-820.

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