Living with paediatric chronic illness: What are the developmental challenges?

 

Abbie Jordan (@drabbiejordan), University of Bath and Line Caes (@LineCaes5), University of Stirling will be leading this week’s EBN Twitter Chat (#ebnjc) on Wednesday 15th February between 8-9pm UK time focusing on the developmental challenges of living with a paediatric chronic illness.

 

 

 

Participating in the Twitter Chat requires a Twitter account; if you do not already have one you can create an account at www.twitter.com. Once you have an account contributing is straightforward:

  • Go to your Twitter account
  • Follow the discussion by searching for #ebnjc once linked to the discussion, click “all tweets” to keep up-to-date with recent tweets
  • Add the EBN chat hash tag (#ebnjc) to your tweets to join in, this allows everyone taking part to view your contribution

Chronic illness in childhood is common, with figures estimating as many as one in four families in the US reporting caring for a child or adolescent with an ongoing health condition (Compas et al., 2012).  As noted by Christie and Katun (2012), receiving a diagnosis of a chronic condition marks the start of a long and challenging journey for children and their families. This journey may change along the way as children grow up and develop new skills. To explore this, research has focused on exploring what it is actually like for children and their families to live and grow up with a chronic condition (Compas et al., 2012; Palermo et al., 2014).  In addition to the challenges associated with managing a chronic illness (e.g. repeated hospital appointments, daily treatment requirements), a substantial number of children who live with a chronic illness experience emotional and social difficulties. Not only the child, but their entire family is affected, with some parents and siblings reporting emotional distress and poor relationship functioning (Knecht et al., 2015; Palermo and Eccleston, 2009).

More recent research has focused on exploring some of the specific challenges that children and families face as they progress to later childhood and into adolescence.  Adolescence is a crucial time in development where young people are faced with new challenges such as such as becoming independent from parents and developing stronger peer and partner relationships. Having an ongoing chronic condition can mean that adolescents experience difficulties with engaging in everyday teenage activities, such as going out with friends or developing relationships with romantic partners. Furthermore, gaining independence for adolescents with a chronic illness has an extra layer of complexity as it will also involve the expectation to take over the responsibility for their treatment from their parents. Engaging in these ‘normative’ developmental tasks is critical for healthy development and transition from childhood to adolescence into young adulthood. In this Twitter Chat, we would like to explore the nature of some of the key developmental challenges that children and adolescents with chronic health conditions face and how these can be better managed to support engagement in age appropriate activities.

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

  1. What are the key areas of daily life in which children and adolescents living with a chronic illness and their families report difficulties?
  2. In the context of living with a paediatric chronic illness, what are the main barriers that children, adolescents and families face with regard to engaging in age appropriate activities?
  3. Why are some children and adolescents more successful in terms of engaging with age appropriate tasks and activities despite living with a chronic illness compared with others? What can we learn from these children, adolescents and families?
  4. How do you think that health care professionals can better support children, adolescents and families to engage with more age appropriate activities despite the challenges of living with a chronic illness? How do can the transition from child to parent-led self-management of a chronic illness be supported by health care professionals?

Dr Abbie Jordan, University of Bath

Dr Line Caes, University of Stirling

References

Christie, D. and Khatun, H. (2012).  Adjusting to life with chronic illness.  The Psychologist, 25, 194-197.

Compas, B. E., Jaser, S. S., Dunn, M. J. and Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8: 455-480.

Knecht, C., Hellmers, C. & Metzing, S. (2015). The perspective of siblings of children with chronic illness: A literature review.  Journal of Pediatric Nursing, 30 (1): 102-116.

Palermo, T. & Eccleston, C. (2009). Parents of children and adolescents with chronic pain. Pain, 146 (1): 15-17.

Palermo, T., Valrie, C. R. and Karlson, C. W. (2014).  Family and parent influences on pediatric chronic pain: A developmental perspective. American Psychologist, 69 (2): 142-152.

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