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4th Joint Meeting on Adolescent Medicine

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4th Joint Meeting on Adolescent Medicine The adolescent with special needs L adolescente con bisogni speciali El adolescente con necesidades especiales – PowerPoint PPT presentation

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Title: 4th Joint Meeting on Adolescent Medicine


1
4th Joint Meeting on Adolescent Medicine
The adolescent with special needs Ladolescente
con bisogni speciali El adolescente con
necesidades especiales Friday, 15 october
2010 Catanzaro - Italia
Dra. Laura Rosario Batalla Canelones, Uruguay
2
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

3
THREE SITUATIONS
  • 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

4
STATISTICS
  • 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)

5
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

6
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 environment1
  • 1 International Classification of
    Functioning, Disability and Health (CIF),
    adopted by the World Health Assembly on 22 May
    2001.

7
  • 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
8
  • 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
9
  • EDUCATION
  • 81.8 and 90.6 for people with and without
    disabilities.

National Survey of People with Disabilities
Uruguay, 2004
10
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

11
  • WHAT IS OUR ROLE?
  • Physicians
  • Health team members
  • Support
  • Healing?
  • What is our role?

12
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

13
INTERDISCIPLINARY TEAM
A group of people who have different skills, and
depend on each other to work efficiently, to
achieve common goals and objectives
14
INTERDISCIPLINARY TEAM
15
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16
  • 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?

17
  • Time is our most valuable ally
  • The time we can give to the family
  • The time they need to assimilate the new life
    situation.

18
  • 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

19
  • 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.

20
  • 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.

21
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.

22
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.

23
PROLONGED OR SEVERE ACUTE PATHOLOGY
  • 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.

24
  • 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.

25
  • 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.
26
CONSULTATION THREE KEY ELEMENTS
  • 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.

27
  • a) growth evaluation, development, nutritional
    status

28
Rodrigo
  • 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.

29
  • 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.

30
  • b) extra domestic activities performed by
    adolescents, their inclusion in the peer group
    and social context

31
  • 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

32
Police Hospital Montevideo - Uruguay
  • 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.

33
Police Hospital Montevideo - Uruguay
34
  • c) the emergence of sexuality.

35
  • 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.

36
  • 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.

37
CARING FOR THE CAREGIVER
  • We must remember
  • that the patient's family
  • cares FOREVER

38
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

39
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"

40
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."

41
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.

42
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!

43
THANK YOU VERY MUCH!
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