Adolescence generally coincides with a critical period. Indeed, a dissociation frequently occurs between chronological age and the process of maturation (physical and psychological). Once this stage has been overcome, the age group from 18 to 25 is referred to by some as the “emerging adulthood” stage. During this period, young people with chronic diseases are transferred to the adult care service, thus experiencing instability or disorder and increasing their vulnerability and risky behavior. We are actually talking about invisible patients.
Currently, there is no specific health service for this group of patients. For this, some experts call them “invisible patients”. Undoubtedly, the needs of this type of people are very different from those of the rest of the normative groups (children, adults, the elderly …), since they are affected by various factors (physical, emotional, psychological, sociocultural, etc.) .
Chronic diseases in invisible patients
Due to the fact that chronic illnesses involve a strict and complex routine of care, the illness and its attendant situation often become difficult to come to terms with. While their healthy peers increasingly enjoy their freedom and autonomy, young people with chronic illnesses do not feel this progression in any way (Bell, Ferris, Fenton, & Hopper, 2001).
We believe that each condition is unique and that cognitive or disease-derived side effects and / or treatment may occur. So, for example, drugs that treat seizures can cause sedation, while others that treat asthma or cancer can lead to irritability or difficulty concentrating.
Merely encouraging adolescents to take initiative and change the role of their parents during the process of transition from ’emerging adulthood’ improves interaction, diagnosis and therapeutic processes (Van Staa, 2011 ).
After reviewing numerous works, we were able to demonstrate that the health system is deficient when it has to cover the needs and particularities of invisible patients. Adult care facilities are often poorly equipped for the complex developmental needs of this population which requires vocational guidance and education. These studies also recognize the two desires of patients: to access and use a range of psychosocial services and to achieve greater control over their lives.
Possibilities for the future and evolution of invisible patients
The help we can provide to these types of patients is vital for the transition to adulthood to be successful, with and despite the disease. For example, we can achieve this by using tools that stimulate the development of self-management capacities or by ensuring them sufficient information about the transition process (Kennedy, Sloman, Douglass, & Sawyer, 2007).
The main objectives for achieving success in the development of said transitions are:
- Work in a socio-ecological context. This is something that requires a shared responsibility between healthcare staff, patients and their loved ones (Okumura et al., 2014).
- Manage family conflicts, experiences related to the disease or change in expectations of medical attention for adults requiring effort from the entire multidisciplinary team (Schwartz et al., 2013).
- Increase patient responsibility in a phased and progressive manner throughout childhood and adolescence. Thus, for example, supporting young people to carry out medical visits on their own helps them promote responsibility for their own health, a sense of success and self-esteem (Bell, Ferris, Fenton, & Hopper, 2011).
- Train health workers to care for and manage chronically ill young people.
- Overcome the barriers of funding, lack of time and the need to cope with a significant number of aging population (American Academy of Pediatrics, Amercian Academy of Family Physicians, and Amercian College of Phyicians, Transitions Clinical Report Authoring Group, 2011 ).
- Manage anxiety by pediatricians, adolescents and their parents through planning for future care.
- Develop appropriate tools to assess the child or adolescent and his family.
Adolescence can be a complicated stage, it can be even more so when there is a limiting disease for which there is currently no treatment. For this it is important to work with the adolescent, so that he does not become one of those invisible patients who sometimes, after having overcome adolescence, feel lost, disenchanted and hopeless.
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group. (2011). Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics, 128 (1), 182-200.
Bell, LE, Ferris, ME, Fenton, N., & Hooper, SR (2011). Health Care Transition for Adolescents With CKD-The Journey From Pediatric to Adult Care. Advances in Chronic Kidney Disease, 18 (5), 384-390.
Okumura, MJ, Ong, T., Dawson, D., Nielson, D., Lewis, N., Richards, M., Kleinhenz, ME (2014). Improving transition from pediatric to adult cystic fibrosis care: program implementation and evaluation. Bmj Quality & Safety, 23, 64-72.
Kennedy, A., Sloman, F., Douglass, JA, & Sawyer, SM (2007). Young people with chronic illness: the approach to transition. Internal Medicine Journal, 37 (8), 555-560.
Van Staa, A. (2011). Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research. Patient Education and Counseling, 82 (3), 455-464
Reid, GJ, Irvine, MJ, McCrindle, BW, Sananes, R., Ritvo, PG, Siu, SC, & Webb, GD (2004). Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics, 113 (3), E197-E205.