ISSN 1363-8394<=
/i>
Journal of Adolescent =
Health
and Welfare
Vo=
lume
12 - No 2 - Summer 1999
Incorporating
the Newsletter of the International Regional Chapter of the Society for
Adolescent Medicine=
Letter from the Editor
Dear Colleagues,
So far it has proved to be a very eventful ye=
ar for
Youth Support. One of those years when you seem to be f=
orever
reorganising, redesigning and starting new initiatives. At Youth Sup=
port
House we have been very busy and have been full of residents while a number
have also moved on to the Bridge – semi independence unit. This has b=
een
a welcome addition to our services and a much needed resource for those
youngsters and young parents who find it hard to cope with life on their own
for the first time.
The = new look Journal should be available on the website quite soon – we have had a delay caused by server problems which have plagued us at the Cyberbridge internet café for the past few mon= ths. Hopefully this is now corrected by changing server comp= any (TWICE!!) However, you may have noted that conference details etc are alrea= dy available. We still have our main site at http://www.youthsupport.demon.co.uk but the conference details are on their own website at http://www.youthsupport.com for full details of our websites see overleaf.
&=
nbsp; Di=
ana
Birch
&=
nbsp; Di=
rector
Youth Support
* CONFERENCE ROUND UP *
Personal views of those
attending recent conferences -
=
Our two conferences at the Royal
College of Physicians in October 1996 and 1998 have now both been published=
as
proceedings books which are available – see below. We would encourage=
you
to order the proceedings books – they are very good!!!
Extracts will be printed in the
Journal.
Proceedings of our conference 1996
Youth - Our Resource for the Futu= re
Now available from Youth Support -£5 by mail order –
FAX 44 181 325 8647 or E mail us at Lisa@youthsupport.demon.co.uk
Proceedings of our International conference October 1998
Youth – Conserving Our Resource for the Fu=
ture
Available in April 1999
Advance orders to above address - £8
=
SAM – Society for Adolescent Medicine
The first conference of the year was the SAM mee=
ting
in
Hot=
on
the heels of
The
proceedings are to be published in Spanish and possibly English. The
presentation below ‘Psychological Issues in Teenage Pregnancy’ =
is
taken from that conference.
PSICO=
LOGIA
DEL EMBARAZO EN ADOLESCENTES
=
–
Director Youth Support –
El fac=
tor
fundamental a la hora de v=
alorar
la prevencion y el impacto=
que supone el embarazo
en la edad adolescente no
se halla en el proveer a los jovenes con metodos anticonceptivos, =
sino en el mundo emocional de estos adolescentes y su motivacion psicologica. <=
span
class=3DGramE>A continuacion consideraremos
cuatro aspectos
1.-Creencias sexuales de los jovenes. El reto que supone
el desarrollo de las emociones sexuales repercuten directamente e=
n la esencia de nuestro ser. <=
/span>
2.-Estudio de la autoestima. Para=
explorar la relacion existente entre la idea <=
span
class=3DSpellE>que se tiene de si mismo y su
sexualidad, se ha hecho un estudio sobre las
diferencias existentes entre un grupo “sin=
problemas” de jovenes de instituto, un grupo de
3.-Ciclos que se repiten. Por que repiten las
jovenes su experiencia con el embarazo? Un alto nivel de flexibilidad emocional y =
una cierta forma de
4.-El embarazo
‘Psychological Issues in Teenage
pregnancy’
&= nbsp; &nbs= p; &= nbsp; &nbs= p;
A. Teenage sexua=
l belief
systems.
That old black magic ... The challenge of developing sexual feelings and urges strikes at the core of our beliefs about the world, who we are and the mean= ing of our lives. How can we understand this challenge and the sexual belief syste= ms of young people? Any assessment is inevitably influenced by our own beliefs= and we must take care to retain objectivity, listening to our young patients ra= ther than imposing our own interpretations on their situations.
Where do these belief systems stem from? &n= bsp; Parental, cultural and religious beliefs and myths form a basis upon which the more contemporary ‘up market’ beliefs are built - for instance the current peer group stance or the ‘dish of the day' in terms of the media 'hero'. The immediate message= can be as evanescent as the foibles of the pop charts - as professionals, we ne= ed to keep abreast of what the latest ‘no 1’ is teaching our youth. These belief systems, however bizarre and contrary to our own personal beli= efs are at least tangible. We can understand where they stem from and we can to some extent modify them with appropriate input in the style of cognitive therapy, sex education etc.
In psychotherapeutic terms we can say that they are messages from the internal= ised Parental ego state (Transactional analysis), in simple terms the parental '= do this' 'don't do that' voices we carry around in our heads like a nagging conscience. Freudians would call this the superego. The intensity of these messages ca= n be modified by educating or activating the Adult ego state (ego), the 'thinkin= g' part of our inner selves which deals with factual knowledge. For instance group beliefs such as "You can't get pregnant the first time" or "It's OK if you d= o it standing up" can be confronted with factual knowledge such as '1 in 20 pregnant schoolgirls got pregnant as a result of the first time they had se= x' and 'sperm can swim up hill'!
Magical Beliefs
But at a deeper level, we have beliefs that are out of reach of direct social pressures. At this deeper level are what I would describe as 'magical beliefs'. Intrinsic ideas with a h= igh emotional content, a feeling of instinct and intuition and which may have no perceivable basis in current reality. These 'magical beliefs' acqu= ired at an early stage of development may be ascribed to the Child ego state (TA= ) or perhaps the Id (Freud). They are very firmly adhered to largely out of awareness and profoundly affect the individual's sexual and reproductive practices. Failure to understand such beliefs can entirely sabotage a treat= ment or contraceptive programme. 'Magical beliefs' centre on fundamental concepts such as feelings about self, body and control and on the nature of life its= elf.
Personal Identity
The adolescent during psychological development is much preoccupied with the question "Who am I?" confusion inevitably arises when "Who am I?" becomes "Who are we?". Establishing a personal iden= tity can be an almost impossible task for a pregnant adolescent who suddenly fin= ds that her identity is changing beyond her control, she is no longer a 'little girl', she is a fertile woman. The role of mothe= r is thrust upon her before she has established her own identity, hence the beli= ef that she cannot get pregnant and the frequent denial of pregnancy.
"I knew about sex and how girls could get pregnant, but I never thought it wou= ld happen to me." Many girl= s deny they can become pregnant. They believe that they are too young. Belief in t= he impossibility of pregnancy can become almost a 'magical protection' like a lucky charm used against the evil eye 'well it won't happen to me'. These teenagers are still at the stage of concrete reasoning and cannot identify = with the experiences of others. They believe fervently in the invincibility of youth. This explains why health education methods based on 'shock tactics' = do not work with this age group.
Denial
"My grandad smoked and he got cancer. I've been smo= king since I was thirteen but I'm OK".
"You hear about things happening to other people but you never think it will hap= pen to you. When my friend got pregnant, I sort of thought she must have been a= bit stupid but then I realised that I hadn't come on (with a period) and I real= ised that I had been doing the same as her."
Operating at this basic level and being unable to identify with the experiences of ot= hers means that young people (or adults who have not 'matured' psychologically) = at this stage cannot learn from others mistakes, and perhaps can only learn fr= om their own.
Teenage sexuality is profoundly affected by beliefs about control. A feature of adolescent development is an internalising of the 'locus of control' ie an assumption of responsibility for one's actions = and one's body. Many do not reach this stage, remain with an external locus of control and believe that they have no control over their bodies or actions. They are not in control of when they have sex and they are unable to control whether they get pregnant. They are not responsible. Pregnancy is something which 'happens' to them. It is a matter of fate. Many girls said that they ho= ped they would not get pregnant but never considered doing anything to prevent = it. Such girls are accustomed to having little control over their circumstances. They live in poor housing, have little money, do badly at school and are un= able to change their environment. When an unplanned pregnancy occurs this represents the ultimate loss= of control, even their bodies are acting independently of their wishes.
Autonomous Womb
In fact, within this belief system there appears to be an element of belief in= the 'autonomous womb'. It i= s as if the teenager believes that the body consists of three areas; the non sex= ual body over which one can exert some control in, for instance running, walkin= g; the sexual erotic areas which are under less control but can be fun to use = such as the penis, breasts and vagina; and the third area over which there is no control, the womb. The belief= in the autonomous womb explains why teenagers do not believe that sex will res= ult in pregnancy. It also explains some of the denial.
"Well, I knew someone was pregnant, but I didn't know it was me."
Missed periods, feeling ill and tired, putting on weight and f= eeling the baby move all add evidence to bring home to a girl the realisation that= she is pregnant. Despite this one fifth of schoolgirls do not face up to the situation unti= l a third person, their mothers or sisters tell them that they are pregnant. Gi= rls seem to be spurred into taking action by missing further periods, and lull themselves into a false sense of security in the middle of the month. It is as if each expected, but mis= sed period reminds them that they could be pregnant and should be doing somethi= ng about it, whereas as this danger time passes they can deny it again with another 'magical belief' - “Well, perhaps I was only a little bit pregnant.”
Poor use of Contraception
Lack
of control is at the basis of the teenagers
notoriously poor use of contraception. Only 7% of
Self Esteem
B. The Self Esteem=
Study
In order to explore the relationship between ideas of self and sexuality, a research model compared a control group (secondary school age girls) a grou= p of pregnant schoolgirls (aged 13-15) and a group of schoolgirl mothers with children at least 2yrs old. The groups were investigated by - A self esteem measure, A 'deprivation score' looking at life experiences= ; A 'sexual' scale estimating degree of sexual experience or sexual trauma.
Girls who were more deprived, had lower self esteem but those who were pregnant w= ere less affected by these adverse factors. Similarly those with adverse sexual experiences were generally more deprived and had lower self esteem measures. Again the pregnant girls were less affected. It would seem that pregnancy parti= ally protects the individual from threats to self worth but the effect is tempor= ary. By the time the child is two the harsh realities of life take their toll on= ce more. The temporary nature of this boost to self esteem may account for rep= eat pregnancy, in an attempt to re-establish identity with the counter culture = and redefine alternative dimensions of value.&= nbsp; Why does it seem that pregnancy is such a potent source of self value? " ... Seen from t= he young girl's viewpoint, pregnancy may not be so undesirable. Certainly it brings heartache and hardship, the extent of which should not be underestimated, but for underpriviledged girls = with little education and non existent job prospects, motherhood is a fulfilment. With the birth of her baby a 'failed' school drop out, an unemployable misf= it, becomes an acceptable member of society with a valued role - that of a moth= er. She is successful and out of her loveless world she has created her own baby who will love her."
In pregnancy, a girl identifies with the ideal mother which she never had and = can never be. We need to help her to identify instead with the ideal woman who = has no need to be pregnant in order to achieve self value. Pregnancy can be use= d by some deprived girls as a source of self worth and as a false solution to th= eir problems. That being so, an alternative solution must be offered. They must be given a different way of valuing themselves in order to ensure that, when they become pregnant, this is because they desire parenthood with all its responsibilities, hardships and joys and not merely as the only perc= eived escape from a catalogue of problems.
C. Repetitive Patt=
erns
–
Why do girls ‘repeat’ their pregnancy experiences? Girls with multiple relationships can progress from one relationship to another and repeat the experience without seeming to ‘learn’ from the previous situati= on. A high l= evel of emotional flexibility and a k= ind of resilience can protect them from some of the knocks while ‘enabling’ further continuance of this inherently damaging pattern. The same could be sa= id of repeating the experience of pregnancy and childbirth. If bringing up a child is hard and= girls are just coping with a baby - or two, or three - why have another? Why repeat the exper= ience? - particularly if it is not an entirely ‘wanted’ event. I= t is interesting to<= /span> look at this repetition in terms of failure to ‘work through’ a painful experience. The= girl enters into - ‘falls into’ - the next scenario while she is sti= ll reeling from the first. She h= as no time in which to ‘lick her wounds’, take in the experience, lea= rn from it and so modify her future reactions. In general a traumatic event is fo= llowed by a reaction which gradually dampens with the passage of time and settles = in resolution. That initial impact could be a conception, a pregnancy, childbi= rth, or a partner leaving. =
Let us consider the stages of ‘recovery’ from such a ‘trauma’. The ini= tial strong reaction - the ‘outcry’ - is followed by a period of den= ial when we don’t really want to deal with the situation and we would rat= her it ‘went away’. As the denial period progresses, the ‘victim’ is confronted by reminders which nudge reality back in= to the scene ... intrusive thoughts and memories of what has really happened s= top us from continuing in the denial process.&= nbsp; Constant reminders and confrontation of denial allow a period of ‘working through’ to be entered into when we can come to terms = with what has happened and this results in completion= and acceptance of our situation. It is only by working through all these stages= and arriving at understanding, accepting and fully realising our situation that= we can stop it happening again.
So
how is the process applicable to repetition of pregnancy? At each stage we
could see how a girl could either ‘work through’ to the next st=
age
or be blocked in the process. The ‘blocks’ can be derived from =
her
social circumstances, by the presence of other types of emotional assaults =
or
other traumas in her life or by the too rapid arrival of another man on the
scene or another pregnancy. Basically she may not get time to deal with one
stage and move on to the next before another ‘trauma’ raises
A Maturation Experience
D. Pregnancy as a Maturation Experience.
Leading on from our discussion of self worth and the manner in which young women wi= th unfulfilling life experiences, with abusive childhoods and with&nb= sp; poor future prospects can ‘use’ their pregnancies as a source of self worth .. it is worthwhile conside= ring what else a pregnancy could contribute to the emotional changes and developments going on for that young woman in adolescence.
Inner Child
The pregnant girl can identify with the foetus and concretise her experience of= the ‘inner child’ in her developing baby; this allows her another chance to be ‘loved this time’ by the ‘ideal’ mother. It also results in a confusion between container and contained and thus confusion of the boundar= ies between the mother’s ‘self’ and= the baby’s ‘self’ - preparing the ground for an overly symbiotic attachment and problems in separation and individuation. Many of the theories and factors put forward above could be said to be negative and perhaps interfering with ‘normal’ maturation and development but are there aspects of childbearing for the young women that could be described as positive and beneficial?
If in pregnancy a young woman is identifying with - and almost becoming - the ‘inner baby’ - will the development of this inner baby allow for the re-experiencing of the same stages of development by the young mother? Just= as she can be loved and wanted again as a ‘new baby’ - looking at the experience from a rather psychoanalytical point of view - can she have another chance at ‘getting it right’ for other emotional or ‘psychic’ aspects o= f her development? = 220; ... It is= striking that despite advances in contraception and the easy availability of termination of pregnancy,<= span style=3D'mso-spacerun:yes'> a considerable number of teenage g= irls still become pregnant and some become mothers. For many= the normal developmental cr= ises of puberty and adolescence, followed by that of first pregnancy and motherhood, facilitated furt= her psychic growth ....”
Psychic Growth
Certainly there are situations where pregnancy does seem to afford an opportunity for ‘psychic growth’ , for maturation and personal development. There are also unfortunately times where the ‘traumatic nature’ of the pregnancy and birth experience afford= the opposite = - where the experience can seem to “... revive primitive anxieties and conflicts ... which cause them to regress= 221; (Pines 1988) and where the “... birth of a real baby may prove disastrous”. That is ‘= ;real’ baby as opposed to ‘fantasy’ baby or ‘ideal’ baby.
Object Relations
So what makes the difference? Wh= at turns the potentially positive experience of pregnancy and childbirth into a negative and vice versa? The key to the question lies in the girl’s ‘object relations’ - in other words how she sees her self and t= he world around her - how she experienced her world and thus herself as a chil= d.
To very much oversimplify for th= e sake of this current discussion - Just as the young mother experiences some of h= er world as ‘good’ and some as ‘bad’ - she has in childhood internalised a view of her mother as the ‘good mother’ or the ‘bad mother’ and thus also a ‘good internal object’ and ‘= ;bad internal object’. If we develop the premise that the foetus is the ‘child within’ with which the mother identifies -= then that inner child can be also = be seen as ‘bad’ or ‘good’ depending on the expectant woman’s previous life experience. The baby is an embodiment of the girl’s ‘object relations’ and the conception can thus be the stage upon which the ea= rly drama which defined the nature of the ‘internal objects’ can be= replayed .. and hopefully a= ltered for the better.
If, as is hopefully most usual, the child represents the idealised mother - the child is the ‘good object’ ... but if the child represents the hated mother - the child becomes the ‘bad object’. In other words if the ‘action replay’ that we are allowed in identification with this developing ‘new baby= 217; evokes feelings of the existence of a perfect ‘idealised mother’ - then this experience will be positive and lead to growth and positive maturation and change.
If however the ‘action replay’ evokes the revival of memories of t= he neglectful and rejecting mother of say an abused girl - then the baby will = be perceived as an unloving rejecting being who becomes unwanted, unlovable and rejected - the experience lea= ds to regression and is more likely to lead to a need for further repetition ... another try .. another hope that it might be dif= ferent .. might be better.
The way the pregnancy / birth experience is perceived will very much depend on = how the mother herself is cared for during the pregnancy. If the young mother is being ‘held’ and cared for and nurtured during the pregnancy , the outcome is likely to be positive - if not - if the mother is not ‘held’ and cared for herself&n= bsp; - perhaps boyfriend has left and she has no support - the outcome is likely to be negative. A vuln= erable or fragile personality could break down completely under the ‘assault’ of a pregnancy experience.
Hence the experience might be summarised thus :-
negative
+ ve - Brings identification= with unspoilt self / child =
à care for neglected child
à Love and caring for baby.
positive
- ve - Brings identification= with the ‘unlovable’ child
à projection of negative hostile fee= lings.
à Rage and jealousy of baby.<= /p>
Throughout this discussion = - we must maintain the concept in our minds that the vision of ‘self= 217; as experienced by the mother is completely wound up and inextricably linked with the vision of ‘the object’. In other words the ‘object’ which is the mother and at the same time is the child = is also the ‘self’.
“The special task that has = to be solved by pregnancy and becoming a mother lies within the sphere of distribution and shifts between the cathexis of= self representation and object representation”.
Those mothers who are not ‘held’ during their pregnancies and who thus re-experience their childhood rejection through rejection of their pregnancies - may to some ex= tent find that a therapy experience can put right some of those wrongs - In ther= apy for these girls - they need to find their ‘ideal mothers’ in the professional setting - in the transference - otherwise they will attempt to ‘do it again’ in a slightly different situation, with a differe= nt partner , with a different baby - in the hope that this will ‘make th= em good’. Hence the ‘repeaters’. Perfect mothers = are hard to find!
News of the International
Regional Chapter (IRC) of SAM
(Society for Adolescent Medicine)
Co Ch=
airs -
Diana Birch Gustavo Girard
Treasurer Aric Schichor
&=
nbsp;
&=
nbsp;
Our Chapter held a workshop at the =
1999 SAM meeting
(Society for Adolescent Medicine)
The family provides the
‘stage’ upon which emotional development takes place and sets t=
he
scene for future difficulties, personality problems, and patterns of low se=
lf
worth, self harm and abuse. Our concept of ‘family’ has changed
from the classical view of the nuclear family to a variety of models includ=
ing
extended family, single parent, adolescent parent - there is no single conc=
ept
of ‘family’. On a=
more
cosmopolitan level - family structure varies cross culturally and we should
perhaps also consider bands of street kids and runaways as developing their=
own
‘family’ groups.
What family structures work for =
the
individual and why? What is a dysfunctional family? How can we and when sho=
uld
we intervene? By working with families we hope to break cycles of dysfuncti=
onal
patterns and enable children to grow into happy effective adults and future
parents themselves. This inst=
itute
will explore the above issues on a cross cultural basis and attempt to draw
common lessons from our joint experiences.
Proc= eedings of the workshop will be published in the winter 1999 issue of the Journal .
Int= ernational Seminar on Violence and Adolescence
A series of workshops run by international experts will examin= e the factors that determine the presence of violence , preventive measures to reduce its incidence and the provision of mental hea= lth care for the victims of violence. Among the speake= rs will be<= /span>
*D Birch
* Y Harel
Details from – ISAS -
Tel 972 2 6520574 Fax 972 2 6520558
SAM 2000 - IRC Workshop
PLEASE PREPARE IDE=
AS AND
SEND IN CONTRIBUTIONS
SUBJECT
Proposal for SAM m=
eeting
March 2000
‘Institute&#=
8217; -
International Regional Chapter (IRC) SAM
‘Youth
in a Violent Age – The Challenge of the new millennium?’=
As we enter a new millennium, part of
Our modern age has brought continents and cultur=
es
closer together, air travel, the media and now the internet has bridged the=
gap
between social groups disseminating not only knowledge and information but =
also
spreading cultural challenges and ‘unhealthy̵=
7; behavioural patterns. Youth=
learn
to mimic gangs, gun carrying school boys, and violent cultures – the =
peer
group has become worldwide. The International community can no longer regard
certain patterns of disorder as relating to ‘other cultures’
– we are fast becoming uniform in the problems we deal with and hence
need to find common solutions.
In this institute we will examine some key areas=
of
universal international interest focussing on issues of Youth and violence.=
(Previously the Youth Support – Forum on Adolescent Heal= th and Welfare)
Announce their fourteenth annual meeting
On
at the Ro=
yal
College of Physicians, St Andrew’s Place, Regent’s Park ,
Preceded by the European Chapter meeting – IAAH
Followed by the conference Dinner at
The meeting will discuss case work and outcomes of the work of= Youth Support and examine prognostic signs and indicators.
Contact Conference Secretariat for further information and to = secure a place.
Con= ference Secretariat
= 216;The Bridge’ 13 High Street &n= bsp; = Tel 44 181 325 8162
Pen=
ge,
A combined
meeting will be held on Friday 15thnd October 1999 and
The meeting will include presentati=
ons
from a number of European colleagues and will aim to provide a lively forum=
for
discussion and interaction between professionals in the field. To this end =
we
are keeping numbers limited to a maximum of 100 delegates, hence early
registration is advised.
Abstracts and ideas for
presentations are welcomed – please send to conference secretariat at
address below. Abstracts shou=
ld be
in the form of approximately 200 words typed on A4 paper and including name , address, contact details and institution of aut=
hor.
Email articles may also be sent to
Lisa @
youthsupport.demon.co.uk.
The
conference package includes – attendance at all sessions –
lunch on both days – tea and coffees both days – dinner on Frid=
ay
evening. Cost £170 per
delegate. (Accompanying perso=
ns may
buy added dinner tickets at £30 each)
Accommodation
package
– in order to provide some cheaper rooms in
Conference Secretariat ‘The Bridge’ =
=
&nb=
sp;
Tel 44 181 325 8162
=
&nb=
sp; =
&nb=
sp;
=
&nb=
sp; =
&nb=
sp;
Penge
|
As you all know adolescents are a special branch of people, a special species, they are young attractive and healthy. Well, at least most of them are but = many of these young people are not so healthy at all. About 10 to 20% of all you= ng people in population suffer from some sort of chronic conditions seriously affecting their daily life activities. And about 3 to 6% have serious conditions with serious consequences for daily life.
As is true for cystic fibrosis and it is true for many childhood conditions th= at treatment improved over the last decade and life expectancy went up. Nowada= ys it is estimated and I quote from an American study of Bob Blum, that about 90% of all children with chronic conditions survive into young adulthood. So we should be very aware and the previous speaker already said that, that it’s not only the quantity= of life counted in years but also it’s very important to look at the qua= lity of life. We are talking about chronic illness and since the 70s the studies= of Stein and Jessop there is a general trend in the literature that consequences of the chronic disease can be generalised to m= any diseases. And of course this is true, the social consequences, the risk for social isolation, the risk for problems w= ith mood and acceptance and things like that but we should keep in mind that for the young person him or herself the social and psychological consequences of the disease are linked to that particular disease.
So
a young man or a woman with a diabetes considers=
the
consequences of daily life as a consequence of the diabetes mellitus. Chron=
ic
illness comprises a lot of different diseases from the medical point of view
with difference in ideology, clinical expression and prognosis but there
We are talking about illness and treatment on the one hand and growth and development on the other hand and of the more serious the disease manifests itself the higher the severity of illness the more chance you have for some problems, but the opposite is also true. We see a lot of young people with = only mild forms of the disease for instance the juvenile arthritis with only a f= ew joints involved where there are a lot of psychological and social problems. Probably because they compare themselves and they try to compete with normal healthy adolescents. Positive body image of course is difficult to acquire = when the body feels or is hindering you with impediments. As to autonomy we as health care workers have to teach young people that it is not shameful to n= eed a little bit of help of your fellow people. So the development of independe= nce in the emotional sense is quite another thing than have to be dependent in = the physical sense. But that’s a long story before young people and adults grow up to that point.
Education
As to education most of young people with chronic illnesses go a regular schoo= l, in our country it’s up to 85%, but sometimes they are somewhat delaye= d in educational process and as doctors or psychologists we have to be aware that some diseases as well as some treatments, schedules go along with cognitive problems. As is true for some types of cancer treatment= . And to social adjustment, integration would be a better word, the more seriously the child or the adolescent is affected the more chance = that the range of social activities is restricted. Well, it’s true that a = lot of conferences about chronic illness in adolescence last years stressed the point of resilience and coping abilities. We should keep in mind about 85% = of all adolescents with a chronic condition adjust very well. A few groups mig= ht be at risk, in the first place youngsters with invisible handicap are often inclined to keep the condition secret, this has some advantages, for instan= ce you can avoid reaction of pity or misunderstanding, but very often the pric= e is too high because the youngsters are permanently afraid of disclosure of oth= er people noticing their condition. Youngsters with the unstable condition as = the arthritis, youngsters with juvenile arthritis, as well as with a progressiv= ely worsening disease it’s very difficult often for peers and adults to r= eact and respond adequately. And the last point that true for cerebral palsy for instance when the brain is involved or central nervous system, you have a double handicap.
The Family
All chronically ill youngsters a=
nd
this is a familiar issue should be family oriented. We have to focus on the
stress of the disease as it is affecting the work or the relationship with =
the
parents and now and then and we do that in clinical practice we should have=
a
little talk with the siblings as well. And the literatu=
re
tell you that most brothers and sisters of adolescents with chronic
conditions don’t have so many behavioural problems or problems with
social adaptation. That maybe true but still they may suffer not so much fr=
om
lack of attention of the parents but they may feel for instance a little bit
guilty that they don’t have the disease, for instance they may feel a
little bit anxious about the genetic side of the disease and may feel anxio=
us
about their own offspring and so on and sometimes they develop psychosomatic
complaints. On the other hand when you speak with these siblings you will be
struck by the huge amount of solidarity and social support they give to the=
ir
affected sib. Well, family even in adolescents remains very important for t=
he
social and emotional support of the adolescent, open communication within a
family is very important, but the communication between the treatment and t=
he
family is very important too. And you have to enhance the coping skills of =
the
family. This is very important because one of the major coping skills is of
course the power that allow them to stay in control because the disease goe=
s on
for many years, lifetime, there should be a balance demands of treatments
dictated by the disease and the demands of the normal daily life activities.
And you have to negotiate between these demands.
As to social integration, as the afternoon goes on we go more to the practical side and what can we do to help and support these youngsters and tomorrow in our workshop on chronic illness we’ll focus more specifically on these points, there are a lot of services to support young people for this social integration, focus independently on special services, focus at education, training and employment. So what’s clear is that it is a joint effort between the adolescents, family, health care workers and society. And as he= alth care workers what we should do is educate young people about practical consequences of the disease, we do that as a rule, educate them on the emotional and social consequences, it’s a little bit less the rule, b= ut we still should do that and nowadays we focus a lot on skills training. It’s not a point to assess to social difficulties for young people wi= th chronic condition, what you should do is reverse, you should teach them ski= lls.
Well. This is problem when I speak for my own country I can say that the unemploy= ment rate is very low and the productivity is very high. That’s good to say and that’s marvellous form the economic point of view but the other s= ide of picture that a lot of young people with physical handicap are not able to get into the labour market, so they are put on a disability allowance. What= appears to happen and it’s a sad story that we buy our disabled. What we shou= ld do from the society point of view is create facilities for social and econo= mic participation otherwise it’s useless to train people and support peop= le to be young adults with a lot of facilities and abilities and then they wil= l be stuck in their development process. We should do that so not only healthy people but also young people with physical disability can face the world pr= oud and self-assured.
Chronic Illness and Youth
Helena Fonseca.
Workin= g with adolescents with chronic illness is not easy but undoubtedly it is very stimulating, I have been doing this for many years. I have always felt that= the effects of the chronic condition on the adolescent very= often outweighs the impact of the illness itself. We have to keep this in = mind when we have an adolescent with a chronic condition in front of us even if = the chronic condition is not very serious, it’s impact can be huge. It has been quite interesting for me thinking the impac= t of the chronic illness on the adolescent not only thinking about the age of on= set of the condition, the nature of the condition but also trying to think about the first impact about the development of tasks of adolescents.
So thi= nking about autonomy and identity I will go a little bit through all of these, I = will try to be clear and just beginning by the age of onset I do think this is an important point just because if the chronic illness starts at birth or in e= arly childhood what happens is that sometimes this leads to ultra parental expectations so what we see and this is really very usual we see that paren= ts don’t have the same expectations towards these kids as they have towa= rds another one. And this is quite serious when the start is at early adolescen= ce. At this stage what happens is that the adolescents is very concerned about his or her body and chronic illness may lead to extra concerns. Also at this stage because the adolescent has yet to separate from his family what happens is that this can lead to little struggle for independence. And you can see adolescents at this stage feel very dependent from their parents.
When t= he beginning is at the middle adolescence stage this age may be the most devastating time for a chronic illness to start. And the reason is because = during this period the adolescent is intensely involved with parental separation w= ith peer involvement and concerns with his or her own sexual development and so= a chronic illness appears here and the adolescent will no doubt face extra difficulties in all this process. If it starts in late adolescence I do thi= nk that the main problem is that it will disrupt vocational plans, it will dis= rupt prospective of leaving independently and things related with this. Of cours= e it is important to look as my colleagues said previously it is very important = to look at the nature of the illness. And of course its course, the chronicity, the side effects of the medication all th= is is very important, the prognosis of course but I would like you to stop a litt= le bit at this second point, the visibility.
Visibility
I have= been noticing that visibility is really very important. And from our experience highly visible disease even if it is less serious may cause more disruption than a very serious one. I have some adolescents with dermatological proble= ms and these problems which are not so serious for instance eczema but they are really disruptive. As clinicians we have to be really aware about this poin= t.
Autonomy and Identity
So as I promised and this framework has been very important to me at least it was developed by Laurence Neinstein and I like it v= ery much so thinking about identity and autonomy the adolescent with a chronic illness may have difficulties with his or her developing identity. And this= is linked with a body image. Adolescents are highly concerned with their bodies and either because they have delayed puberty or because they are carrying s= ome kind of malformation this can lead to a lower self-esteem, so segregation f= rom peer and increased anxiety over sexuality and like at the end of this conti= nuum sometimes depression and really very negative feeling. So I would say that a chronic illness at this point can severely interrupt the whole process and = the whole movement towards independence. Especially if it takes place in the ea= rly or middle adolescence as we have already said this can be a problem much mo= re than the disease in itself in my opinion.
As far= as autonomy is concerned sometimes they feel tired, sometimes they feel like a= nd this is a reality for most of the cases, they spend a lot of time in medical appointments, so they do miss school and they do miss activities. So this problems may of course lead to fear of peer invol= vement and can also lead of course to social segregation. If we think about autono= my and this is the like the nice way I like to look at it if we look at autono= my as the adolescents capacity to take responsibility for their own behaviour = to make decisions regarding their own lives, what is so s= o important, to maintain supportive social relationships, if we think about autonomy in these terms I do think that we can agree that the development of autonomy is perhaps the major goal for adolescents with a chronic condition= .
As I h= ave already said this adolescent will face additional difficulties especially related with sexuality. Because of the delayed development, having of having too protective parents, because of feeling uncomfortable in expressing conc= erns about this field, they are very often seen as asexual, and I do think this = is huge problem and I do think that paediatricians as me because perhaps we we= re trained for dealing, for working with little kids we are not sometimes awar= e of these problems and really need to be.
Adoles= cent girls will have an increased health risk if becoming pregnant because of the main chronic illness but also she is an increased risk of becoming pregnant. And this because perhaps she wants to prove herself that she is able to and there might be many other reasons, we can discuss this later.
So the
social and sexual aspirations of adolescents with chronic diseases are not
different from the rest of the population. But this kin=
d of
adolescents are really specially sexually vulnerable. And if we think
about sexual abuse all the research point to the fact that these kids are m=
uch
more sexually abused than the rest of the kids of the same age. OK. So I wo=
uld
like now at this point to talk a little bit about the family and efforts we
have developed to work together with the family especially in
If we = look at the family as a important resource we can understand how much a successful adaptation to a chronic illness can best be promoted by focusing on the family system. If the family system will be our unit of intervention and not the adolescent individually I do think we are working better. And of course all of us are aware if the family is happy the adolescent with a chronic illness will do better.
So if = we think about poor outcomes as feed back increasing demands we can also look = at good outcomes as feed back to family systems that increases their repertoir= e of capabilities. What I mean by this is when I talk about good outcomes I am thinking about having been able individually or as a family to make the rig= ht decision at the right time or having been able to take responsibility for a particular behaviour, I do think that this gives power to the family, this makes the family feel that perhaps the nest time they will be able to do th= e same or even better because they have a positive previous experience.
So as clinicians we really need to pay attention beyond the somatic aspects to emotions and this was already very well discussed here today. So what kind = of emotions does the illness raise inside the adolescent and how is the adoles= cent dealing with his or her chronic illness and also how does his or her person= al and family history influence all this. And at this point I do think at least for me the FAAR model, FAAR as the initials for the Family Adjustment and Adaptation Response, this model has helped me a lot for understanding the family dynamics and learn how to manage with the family. You have here the balance with the two plates and you can see that = when a crisis appears what happens is that strain becomes really heavier and this upsets the balance.
Non Compliance
Someti= mes we are tired about the adolescent who is not doing the medication, we are concerned about the increased risk-taking behaviours, I understand all that= and I have that personal experience but the problem is that if we look at this = as a healthy way, a healthy process of autonomy I do think it’s a good way= of thinking and of working on this. Sometimes the adolescent who copes very we= ll with everything sometimes because she was able to reframe the situation and= of course developing coping mechanisms, sometimes this is done at the expense = of lots of autonomy.
Continuity of care
Behind the physical face of the
adolescent’s medical condition consideration of the adolescent’s
psychological development and tasks is very essential. This includes inform=
ing
the adolescent and the family of the nature of the illness, its course,
possible limitations of the treatment. Also it is very important is to adapt
our language to the kind of adolescent or family we have in front of us. We
physicians often speak with very difficult words and sometimes we are not a=
ble
to reach the audience. Another important point is continuity of care. We re=
ally
have to think about the continuity and how to deal with it. Of course I hav=
e already
talked about involving the adolescent and the family and the evaluation of =
the
impact of the illness on the needs of the family. I would only like to say
something about the multi-disciplinary team. Something actually I discussed
this morning after the chronic illness presentation. I do think that nowada=
ys
we are aware that we have to involve in the team many health care professio=
nals
and I could like issue huge list but I feel at least in my country that
communication sometimes is not easy among these people and this is really a
point I think we need to improve. And I say this just because sometimes I do
feel that this makes the difference. OK. Thank you.
The Journ=
al of
Adolescent Health and Welfare
is published
by:- Youth Support,
Tel No 01=
81 325
8162 =
Charity No 296080 =
Fax No 0181 325 8647