The adolescent with special needs

L’adolescente con bisogni speciali

El adolescente con necesidades especiales

Friday, 15 october 2010Catanzaro - Italia

Dra. Laura Rosario BatallaCanelones, Uruguay

4th Joint Meeting on Adolescent Medicine

Why adolescent has special needs?

• Onset of chronic diseases, such as psychiatric disorders or insulin-dependent diabetes.

• For every death that occurs, there are three teenagers who do not die, but they have serious injuries.

• Greater survival of chronic childhood-onset and congenital diseases, and better prognosis of surgical procedures in malformations

• Severe acute disease, requiring long and arduous treatment or prolonged hospitalization, or accidents, even if cured without physical sequelae

• A previously healthy teenager, to whom suddenly is made a diagnosis that will affect his life forever

• a patient who already has a chronic disease that will accompany him forever, and that inevitably has to go through the adolescent stage

• a serious situation that puts the patient and his family in the limits of its adaptability and tolerance for adversity : is an instance of shock

THREE SITUATIONS

• Worldwide is estimated that Between 5 and 20% (reportedly) of the population of children and adolescents suffer from some type of chronic disease.

• Disability prevalence reaches 7.6% of the total population. (Uruguay, 2004)

STATISTICS

CHRONIC DISEASE

• Definition: A condition that affects daily functioning for more than three months a year, or requires hospitalization for more than one month per year, or puts the patient at risk for any of these conditions.[1]

[1] Pediatric Update Program – S.A.P. – Módulo 4

DISABILITIES

• Definition: "Disability is all limitations and

restrictions on participation, originating from a deficiency that affects a person on a permanent basis to cope in their daily lives within their physical and social environment”[1]

•[1] “International Classification of Functioning, Disability and Health” (CIF), adopted by the World Health Assembly on 22 May 2001.

The male population under 30 years showed higher incidence of disability than the female of the same age.

“National Survey of People with Disabilities ”; Uruguay, 2004

Children and young people represent 17.9% of the population with at least one disability.

9.4% of disabilities

of all ages are

a result of

accidents.

“National Survey of People with Disabilities ”; Uruguay, 2004

EDUCATION

81.8% and 90.6% for people with and without disabilities.

“National Survey of People with Disabilities ”; Uruguay, 2004

CHRONIC DISEASE

We can consider chronic disease pathologies as diverse as:

asthma, diabetes, multiple sclerosis, encephalopathy, epilepsy, HIV infection or chronic hepatitis, hemato-oncological diseases, myopathies, psoriasis ...

and hay fever

WHAT IS OUR ROLE?

PhysiciansHealth team membersSupport

… Healing?

What is our role?

DIAGNOSIS IN ADOLESCENCE

• The health team approach is essential. • The diagnosis should be given clearly and

accurately, planning the time • Eventualy, more than a health team

member.• it should be agreed the information that

each one will give to the patient

A group of people who have different skills, A group of people who have different skills, and depend on each other to work efficiently, and depend on each other to work efficiently,

to achieve common goals and objectivesto achieve common goals and objectives

INTERDISCIPLINARY TEAM

INTERDISCIPLINARY TEAM

Should the adolescent patient be present at the time of diagnosis?

Adolescent has the right to "be heard and get answers when making decisions that affect their lives ”

(Law No. 17823, "Childhood and Adolescence Code”, Chapter 2, Article 8. – Uruguay, 2004)

But… What is the best moment?

Time is our most valuable ally:

• The time we can give to the family

• The time they need to assimilate the new life situation.

• Emphasize the strengths of the family.

• Give importance to the positive aspects that the patient can develop in the future

• Each one must think about which "good thing" may be told to that family

• Many times, in our good intention to seek the best professionals to confirm the diagnosis, or to find the best treatment, we refer patients to other colleagues, without letting them know that this is nothing more than a consultation, but we will still be their own doctors, and main physicians.

• And we should not forget that this diagnosis falls in the middle of teenage troubles, so both the patient and his family are in new situations, one of which they never expected to go through.

THE ARRIVAL OF ADOLESCENCE

Explain to the family, and as far as possible to the teenager himself, which are the changes to expect, and what are the consequences they have on the underlying disease.

Carla

A 14 years patient with diabetes mellitus diagnosed at age 5, came to our Department because their disease, previously controlled and well balanced, had started to become difficult to maintain with adequate blood glucose numbers. Doses were studied, types of insulin adjusted as diet and exercise, but she kept losing weight, with widely varying numbers of high glucose and glycated hemoglobin. Questioning alone, shows an inadequate use of insulin, with lower doses than those given with the explicit purpose of increasing glycemia and reducing weight.

• Serious infectious diseases, surgical complicated diseases, and mainly in accidents or violence, which determine the placement of a teenager in a third stage care service.

• We must stay in touch with doctors on call, the Emergence, internists, who take care of our patients while they are in this situation.

PROLONGED OR SEVERE ACUTE PATHOLOGY

We can be very useful:

• Explaining what the colleague on duty can not,

• Explaining what they did not understand, in the language we know that our patient will understand,

• Cooperating with our colleague in deciding the best time of discharge and outpatient treatment, cause we know better the environment to which the patient will return.

We must always bear in mind that our patient with chronic disease, or disability, may have a medical or surgical situation, related or not, with their underlying disease.

One patient presented with severe psychiatric disorders had a major abdominal pain, diffuse, and that she could hardly precise. With low fever, very upset by the pain and screaming "I can not stand the pain, I want to kill myself!", she was evaluated by a doctor on call, and diagnosed as a decompensation of the underlying pathology, with risk of suicide attempt. Entered into a psychiatric hospital, a nurse, before giving the powerful sedative indicated, examined her abdomen and took her temperature. With fever and a diagnosis of "acute abdomen" was transferred to a general hospital, where she was diagnosed with "appendicitis and acute peritonitis”, and underwent emergency surgery.

a) growth evaluation, development, nutritional status,

b) extra domestic activities performed by adolescents, their inclusion in the peer group and social context and

c) the emergence of sexuality.

CONSULTATION: THREE KEY ELEMENTS

a) growth evaluation, development, nutritional status

A 12 year old patient came to the Adolescent Service for health control. He was a healthy child up to 9 months of life, when suffered from a serious meningococcal meningitis with purpura fulminans. The rapid progression of the disease forced to amputate both legs, all the fingers of his left hand and two of the right hand. With such terrible physical injuries, while maintaining his intellectual integrity, he recovers and start his rehabilitation: prostheses are placed, that the moment the patient handles properly, even playing sports.

Rodrigo

On arrival at the exam I remark the need to know his height and weight. Astonished, he said to me that "for years that no one measured or weighed me!". The mother said that after beginning the use of prostheses had no control over anthropometry. I measured and weighed him with the prosthesis, and then asked the mother to consult the manufacturer about their length and weight. A simple subtraction then helped us in the following interview, to know these fundamental data in adolescence, and follow up.

b) extra domestic activities performed by adolescents, their inclusion in the peer group and

social context

• The achievement of autonomy, impossible in many cases, can be negotiated in others and even be encouraged.

• Pay atention:– frequent or long hospitalizations – loss of classes – delay in performance

• Project for education to adolescents hospitalized for prolonged periods

• Psycho pedagogyc, psychology and psychiatry

• Assist young people who should be admitted in hospital, in order not to be delayed the acquisition of skills or knowledge

• Avoid the drop out of school.

Police HospitalMontevideo - Uruguay

Police HospitalMontevideo - Uruguay

c) the emergence of sexuality.

• The adolescent sexuality is a conflictive issue for the family, and even for professionals who are not trained in its approach. Moreover if the adolescent has a chronic illness, and even more so if he carries a disability. But sexuality does not drown into disability or illness.

• it can be a side to work for the acquisition of autonomy

• it can be a side in the inclusion of the adolescent's peer group

• In the case of chronic diseases will be very important genetic counseling

• what is the best contraceptive method to use, for women and men

• In extreme cases: it should be considered with parents or guardians, the possibility of permanent sterilization.

CARING FOR THE CAREGIVER

We must remember

that the patient's family

cares FOREVER

CARING FOR THE CAREGIVER

• The patient may require: – total care (chronic encephalopathy, severe sequelae

of accidents),– comprehensive monitoring (psychiatric illnesses that

preclude autonomy, as intellectual retardation or chronic psychosis)

– sporadic monitoring (chronical deseases than determining disability periods that alternate with periods of autonomy, such as demyelinating diseases or neoplasms).[1]

•[1] Fernández Moya, Jorge "Chronic Disease", presentation at VI Pan American Congress of Systemic Therapy, Association of Systemic Psychotherapy in Buenos Aires, 1 to 3 October 2009

CARING FOR THE CAREGIVER

• promote the alternation in the care of patients for the family: post relay

• crisis of care • assist in the weaving of these decisions: who

cares, what, when, how. • The family is often overwhelmed by the daily

cares, and need "view from the outside"

EDINSON AND ERIKA

Edinson and Erika are two teenage brothers, 18 and 17 years respectively. Both were diagnosed at 8 years of disease ataxia telangiectasia or Louis Bar. This determines impaired balance and stereotyped movements, which cause a very severe difficulty in walking. They live in the countryside, about 15 km from the nearest town in the deep inside of my Uruguay. Every three months they come to visit. Their father is a policeman and mother a housewife. They have a younger brother, healthy. This family may be worthy of commiseration. Quite the contrary, has developed plans for their children, who deserve our admiration and respect: both of the study Edinson agriculture tasks and Erika as a cook. Both help with the field tasks. Their father has manufactured a "walker", adapted to the rough and uneven terrain of the establishment in which they live. And their mother takes them on a bike to their place of study, on alternate days each. These parents are showing and example of how disability can be lived in several ways, and as they say:

• "we could have chosen to complain, but we choose to grow them."

BRUNO

Bruno always liked football, but could not find a place where he could go, not only economically, but also because he can not go alone anywhere, except to school where he walks. A classmate told him about a team and took a bus to Portones. Since then, they started to come together on the bus. This is how Bruno first started riding buses alone. Beyond that, he found a peer group with which he shares not only a love for sport, but they identify within the same group, although all have different capabilities (microcephaly, deafness, Down syndrome). The first competition was in October, in Fray Bentos and they won the National Special Olympics, his first medal. My parents thought it was not going to last for long. Meanwhile, Bruno was going training.

BRUNO

A day he comes home and says he is going to Puerto Rico. Nobody paid any attention, we all thought it was "some stuff of his" until the teacher calls home and says that Bruno was selected to go on to play in Puerto Rico. Our concern was that Bruno never went anywhere alone and we were very scared. I was terrified that he might get lost, missbehave or not pay attention to teachers. The only thing he lost was some clothes, but really it was an unforgettable experience for him: the competition, the airline, travel, meet new people, be without his family. Olympic Committee told us that all was well, and when we went to the airport they say they brought a silver medal. It was also nice to see the ceremony on the Internet, filmed marching, he and his friend. It was beautiful!

THANK YOU VERY MUCH!