Children with chronic medical illness, particularly organ failure, who require organ transplant, have their own emotional challenges. These children tend to worry more, are more socially isolated, have increased school absenteeism and maladjustment. Non-adherence to treatment is a huge challenge for this population and their caregivers (Berney-Martinet, Key, Bell, Lepine, Clermont & Fombonne, 2008). It has been demonstrated that children with low self-esteem, poor social skills, challenging behaviours and cognitive defficits are particularly at risk for non-adherence.
Children who have Autism Spectrum Disorders and happen to require a transplant face double challenges that interfere with medical intervention and adherence to treatment. The transplant process involves multiple invasive procedures that cause cumulative stress with little opportunity for recovery in between procedures. Furthermore, it is difficult to communicate with these children and explain why such multiple invasive procedures are necessary. Anxiety, communication deficits and cognitive impairments contribute to maladaptive behaviour, such as withdrawal, anger, and aggression; busy transplant professionals with limited experience with ASD symptoms have no idea how to handle these children/adolescents.
Objectives: To answer the following questions:
1) How can a child with ASD be involved in the transplant process?
2) How does a transplant team prepare a child with ASD for transplant? (a case example will be discussed)
Methods: Our interdisciplinary team, led by medical psychiatry, embarked on a project to create guidelines to support patients undergoing transplants. The outcome of this process was the creation of an individualized tool-kit that has guided the Nephrology team in providing supportive carefor a patient with symptoms of ASD who required a kidney transplant.
Results: This patient’s kidney transplant was successful. The child’s symptoms actually improved post-transplant, rather than his experiencing further regression and the interdisciplinary team now feels much more comfortable dealing with patients with ASD.
Conclusions: From this case an individualized toolkit was created and piloted successfully.
A generic toolkit has been created for patients with ASD spectrum disorders. A guideline and toolkit are being developed for use with other transplant populations presenting with any challenging behaviours.