Transcript The Child with Special Needs from South Asian - HPH

This presentation
relates to the finds
of a study tour to
Pakistan. The
lessons learned
would be used to
improve the care of
children with
special needs from
the Pakistani
community of
Edinburgh and
beyond.
Special needs is a
general term
meaning care needs
because of physical
or intellectual
disabilities or a
combination of
both
The Child with Special
Needs from South
Asian Communities
Improving health through
community and health
staff education
James Robinson
Royal Hospital for Sick
Children Edinburgh, UK
The Winston Churchill
Memorial Trust was
founded to honour the
memory of Sir Winston
Churchill. The Trust
provides funds to
British citizens to travel
any where in the world
to carry out projects.
The results of these
projects are to be used
to the benefit of British
society.
A Health Promotion
Development supported
by
The Winston Churchill
Memorial Trust
Concerns had been raised in
Edinburgh regarding the quality
of service given to children with
special needs from the Pakistani
community.
There was evidence that some
school nurses did not understand
the needs of children and
families from the Pakistani
community. This lack of
knowledge encouraged the
formation of negative
stereotypes. These stereotypes in
turn resulted in reduced quality
of care.
At the same time a local support
and information group was
concerned about the impact of
negative attitudes within the
Pakistani community itself. This
negativity within their own
community was felt to add to the
care burden for the family.
Issues Encountered
• Quality of service provided
in school health service
• Reluctance of families to use
supports from within own
communities
There was evidence
that some school
nurses did not
understand the needs
of children and
families from the
Pakistani community.
This lack of
knowledge
encouraged the
formation of negative
stereotypes. These
stereotypes in turn
resulted in reduced
quality of care.
A negative cycle of
cause and effect was
set up. Nurses
believed parents were
not willing to
participate in the care
of their child. They
therefore did not
encourage parental
participation. Lack of
encouragement then
led to lack of parental
participation
Issues Encountered
Quality of service provided in
school health service
• Lack of awareness
• Stereotype
• Lack of participation
Parents were
reluctant to use
supports based in
the community. This
seemed to be the
result of negative
perceptions of
disability within the
community. This
undermines the
confidence of the
parents and leads to
both a sense of
isolation and actual
social isolation.
This isolation adds
to the care burden of
the family.
Issues Encountered
Reluctance of families to use
supports from within own
communities
• Stigma
• Lack of confidence
• Isolation
To add to the burden
already faced by
children and their
families are
discriminatory
attitudes with the
general population.
Minority ethnic
children with special
needs can suffer
what is known as
‘double jeopardy’.
That is they suffer
the consequences of
prejudice toward
both those with
disabilities and
those from another
ethnic group.
Issues Encountered
Wider society
• Discrimination toward those with
special needs
• Discrimination against those from
minority ethnic communities
Pakistan was chosen
as the area for the
study tour for a
number of reasons.
The largest minority
ethnic group in
Edinburgh is that of
Pakistani heritage.
By travelling to
Pakistan the effects of
racial discrimination
could be eliminated.
The origins of beliefs
and attitudes within
Pakistani society
could be better
explored.
It remains common
practice for young
people in the UK to
find their marriage
partner in Pakistan.
This on going link with
society in Pakistan
means attitudes within
Pakistan can still
influence those within
the UK
Why Pakistan?
• Largest minority ethnic group
• Eliminate effects of racial
discrimination
• Trace back ongoing beliefs and
values
• Continued links through marriage
Poverty within
Pakistan has a
number of impacts.
In part it creates a
situation where the
risk of disability is
increased; facilities
are limited by lack of
resources; families
cannot afford to
access some
services.
The Government at
national and regional
level provides some
facilities but is
dependent on others
to provide most
care.
Some parents seek
out alternatives
which seem to offer
faster solutions than
rehabilitation. These
are not always
appropriate or
successful.
Situation in Pakistan
• Poverty
• Limited facilities
• Dependence on private / nongovernmental organisations
• Social stigma and isolation
• ‘Quick fix’ solutions
This young lady
lives in a residential
unit. She is one of
many who have
been abandoned by
their family.
Partly poverty and
difficulties in caring
for the child drives
families to place
their children into
residential units.
However social
stigma leads to the
family breaking off
contact and
abandoning the
child.
This particular
facility was
overcrowded and in
poor repair at the
time of this
photograph.
However a new
purpose facility was
being constructed.
Rehabilitation is a
slow process.
Families therefore
sometimes seek
alternative solutions
which seem to offer
quicker outcomes.
These alternatives
are not always
appropriate. This
child has bilateral
talipies. His family
took him for surgery.
While the operation
is fairly
straightforward good
after care is needed.
This was not
available to this child
and as a result he
developed
contractures and
ended up in a worse
state than he
started.
He is now
undergoing
rehabilitation in a
voluntary group.
There are active
efforts to improve
the situation for
children with special
needs and their
families. These are
aimed both at
improving care and
improving attitudes.
This activity involves
Government,
voluntary
organisations and
individuals.
There is a gradual
improvement taking
place
Situation in Pakistan
• Positive Government Action
• Awareness raising programmes
• Community Rehabilitation
• Gradual change in social attitudes
The Hamza
Foundation is one
of many
established by
individuals or
voluntary groups.
The Foundation
was established by
a wealthy business
man. He used both
his wealth and
business skills to
set up the
Foundation for
children with
hearing impairment
when he could not
find suitable
facilities for his
daughter who has
a hearing
impairment.
The foundation
provides state of
the art facilities
equal to any in
Europe or the USA.
This small shop
is located in the
Al-Umeed centre.
The shop is part
of the children’s
social skills
programme
teaching them
how to deal with
money and carry
out shopping.
Al-Umeed is
another
organisation
whose foundation
was triggered by
a parent
dissatisfied with
available
facilities, in this
case a mother of
a child with
cerebral palsy.
Skills training in a
Government
training school.
Those with
disabilities are
undervalued.
Giving a skill has
many benefits. It
shows the
disabled person
can make a
contribution to
their family and
society. The
individual
benefits from
earning power
and the feeling of
self-worth.
There is the
added benefit
that having skills
improves
marriage
prospects.
Here girls are
learning to
produce knitted
goods.
The same
Government
centre.
Here boys are
learning to
repair and build
electrical
equipment.
Skills are taught
which are
appropriate to
the prevailing
social norm.
Community Based
Rehabilitation
Programmes play
an important role
not only in
providing skills
and education for
children with
special needs but
also in improving
attitudes in
society.
Here we see a
school run in a
mother’s own
home. The lady is
a community
support person
trained and
supported by
which runs the
programme.
Keeping children
in the community
improves their
chances of
acceptance and
social integration.
Insh’Allah is an
expression meaning
God Willing.
It can have a double
effect in regard to
disability. On the one
hand it can produce a
fatalistic approach
suggesting nothing can
be done for the child
and therefore parents
should simply accept
their child’s fate. While
this interpretation did
exist and did influence
the care given to some
children the parents
interviewed during this
study tour did not hold
to this view. They used
the expression to mean
that while God
ultimately decided what
would happen as
parents they had a duty
to try to improve things
for their child. It helped
them cope rather than
give a reason to do
nothing.
Situation in Pakistan
Insh’Allah
A double sided attitude
-
Disincentive
+
Coping mechanism
The findings of
the study tour will
be employed in
staff training
programmes in
Edinburgh.
In this way the
quality of service
will be improved.
Transfer of knowledge and
experience
Staff cultural competence training
• Challenge stereotypes
• Improve awareness of family beliefs and
attitudes
• Improve collaboration with parents
= improved health through improved services
Similarly the
findings will be
applied in
community work
to improve
attitudes and
support within
the community
Transfer of knowledge and
experience
Community development
• Challenge attitudes
• Reduce isolation
= improved mental health through
community support
Some work in this
field has already
taken place in
Edinburgh
through a
voluntary
organisation.
Regrettably this
voluntary
organisation has
gone out of
existence but its
work will not be
wasted.