A qualitative study on the educational needs of young people with chronic conditions transitioning from pediatric to adult care

Figures & data

Table

•Can you tell me how you manage your illness and your treatments now that you are becoming an adult? •How would you react if you had an incident once you were cared for by adult care? •How would you describe adult care? •Can you tell me what you think is important for adolescents to know before they leave the pediatric unit? •What are your feelings about leaving the pediatric service? •How would you describe a young person with your condition who goes in for adult care? •How important is your illness in your life? •Do you have specific interests in certain health topics? •Who do you talk to if you have questions about alcohol, tobacco, drugs, sexuality, etc? •What is your life plan? •Is there anything you consider important that we have not discussed today?

Table 1 Sample description

Characteristic	N=17
Average age	18.2
Gender (n)
Female	10
Male	7
Pathology (n)
Type 1 diabetes	5
Liver transplantation	3
HIV	2
Sickle-cell anemia	2
Epilepsy	1
Cystic fibrosis	1
Multiple sclerosis	1
β-Thalassemia	1
Mastocytosis	1
Type of pathology (n)
Prevalent	8
Rare	9
Transition (n)
Pre-transfer	7
Post-transfer	10
Hospital center (n)
Amiens University Hospital Center	6
Necker Hospital	7
Jean-Verdier Hospital	4

Table 2 List of identified themes and breakdown of relative codes

Themes	Codes
Learning a new role with an illness	Afraid of being categorized as “sick”; negative attitude toward the illness; comparing oneself to non-diseased individuals; sense of injustice (why me?)
•As a human being
• Being responsible for the illness and its treatment	Learning from parents; feeling of self-efficacy
• As a patient	Participation in the decision; willingness to be viewed as an adult
Learning a new lifestyle	A need for information on general health matters; not identifying health care professionals as resources for health questions
Learning a new health care service	The change is not perceived in relation to oneself; the change is mostly perceived in relation to the parents; peace of mind regarding the change; the change is grasped after the fact; a modification in the relationship with the health care personnel; more biomedical consultations in the adults’ unit; administrative management is difficult to handle
Maintaining a dual relationship with pediatric and adult care	Trusting the pediatric doctor more for urgent or personal questions; needing time to trust new health care professionals; a sense of security provided by the dual relationship with pediatric and adult services
Having experience sharing with peers	Exchanging tips and tricks to live with the illness; sharing similar experiences; a common vocabulary

Figure 1 Proposed approach for generic transition-oriented patient education.