The Invisible Patients: Young People And Chronic Disease

Puberty tends to be a critical period in a person’s life. This is also a time where there is often a big difference between the age a person has in the passport and how adult the person is, both in the head and in terms of physical development. After this period  , the time comes from one is 18 to 25. That is when we say that young people become adults. It is during this period that young people with chronic illness go from belonging to the child and adolescent health service and to the regular health service. This leads to instability, which can increase the chance that they end up doing risky things. This is the group of experts call invisible patients

As of today, there is no separate health service for this group of patients. That is why we call them invisible. There is no doubt that these groups have a need that is very different from other groups. And the need is different both physically, mentally, socially and emotionally.

Chronic disease in invisible patients

Because chronic illness requires a  strict and complex routine to stay in check, it is often difficult for patients to accept the situation they have found themselves in. So while their healthy counterparts experience freedom and autonomy, patients with chronic illness do not have the same progress (Bell, Ferris , Fenton & Hooper, 2011).

All diseases are different,  and there may be cognitive effects or other side effects of the medicine. For example, medications that work against seizures can also have a calming effect. And those who keep asthma or cancer at bay can cause irritability and difficulty focusing.

It takes no more than encouraging adolescents to  take the initiative  and change the role of their parents during the period when they are adults. If they do, they will improve both the interaction with others, the diagnosis and the treatment (Van Staa, 2011).

After looking at the literature around the field, we have found that the health system has shortcomings in terms of the needs of these invisible patients. In addition, we see that medical centers for adults often do not have what is needed to be able to meet the complex needs of the part of the population that develops the fastest. The part that needs professional follow-up and training. Studies mention two specific things the invisible patients want: access to psychosocial services and greater control over their own lives.

A possible future for invisible patients

However, there is good news: It is possible to help with the transition to adulthood even if people are struggling with chronic diseases. For example, we can give them the tools they need to develop their own ability to take care of themselves, as well as information about this transition period (Kennedy, Sloman, Douglass & Saywer, 2007).

The main objectives of such a transition are as follows:

• To work from a socio-environmental framework. This requires a shared responsibility between healthcare professionals, patients and caregivers (Okumura et al., 2014).
• Controlling conflicts within the family, experiences related to the disease and changing expectations related to the medical treatment of adults. Again: This is something that requires the work of all members of that team (Schwartz et al. 2013).
• To increase the patient’s responsibility gradually through childhood and puberty. For example, one can teach children to make their own appointments with the doctor. It helps them learn to take responsibility for their own health, gives them a sense of accomplishment and also increases their self-confidence (Bell, Ferris, Fenton & Hooper, 2011).

• To train health professionals to take care of and take care of young people who are struggling with their health.
• Doing something about the nervousness among pediatricians, adolescents and their parents when it comes to the topic of future health care.
• Develop appropriate tools  to evaluate the child or adolescent and the family.

Puberty can be a complicated time in life, and even more so if you are also limited by an illness without a cure. Therefore, it is important to work with the young people  so that they do not end up as invisible patients entering puberty with a sense of being lost and hopeless.

Source list

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 Transitions from Pediatric to Adult Cystic Fibrosis Care: Program Implementation and Evaluation. Bmj Wuality & 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). Unravelling Triadic Communication in Hospital Consultation with Adolescents with Chronic Conditions: The Added Value of Mixed Method 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.