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Transcript of 1. Families With Disabled Children -
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Dr. Nahed AbdelkhalekNK
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Disease
InjuryCongenitalabnormality
Disturbanceat Cellular
level
Example
Abnormalities of
Structure, organ orsystem function
Disturbance atOrgan level
(1) Paralysis oflimbs caused byspine bifida
Changed
functionalperformance andactivity by theindividualDisturbance atPersonal level
(2) Having limitedability due to (1)
Disadvantage
experienced by theindividual as a resultof impairment anddisabilitiesInteraction at Socialand Environmental
level
(3) Having feweropportunities to workand socialize becauseof (2)
Pathology Impairmentisability Handicap
NK WHO,2009
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Developed by WHO - 1992-2001.
:
“recognises disability as a universal human experience……. shifting the focus from cause to impact…..takes into account the social aspects of disability”
:
Expand thinking beyond primary impairments; Moves from medical to bio-psychosocial approach
WHO 2001
NK
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WHO 2001NK
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WHO has estimated that:
Over half a billion individuals (1 in 10 of
the world’s population) have a disability One third of these are children
Over 80 of this ability experienced by
those in developing countries
WHO,2009
NK
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WHO has estimated that:
93 million children (5.1% of the world’s
children) aged 0-14 live with a moderate orsevere disability
13 million of these children (0.7%)experience severe disabilities
In low and middle income countries theprevalence varies from 0.4% _ 12.7%
NK
WHO,2011
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make
absolutely certain
that the
assessment procedure and diagnosis
are
ORRE T
NK
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Was it my fault (history of sin, punishmentby God)?
Could I have done something different toprevent this dilemma?
Is my child normal physically, mentally,emotionally, cognitively, behaviorally?
Can I afford the treatment? Will my child ever have a normal life,psycho-social concerns?
NK
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One of the most emotional experiences for parents
Recognized as a crisis event for some
parents that effectively shatters previously
held dreams
NK
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Various models have been suggested based on the
stages of bereavement
What have parents of a child with a disability lost?
The expected ‘perfect’ child
The ‘normal’ parenting role
NK
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Guilt
Fear
OverprotectiveHostile
Insecure
Frustrated
Angry
Dependent
Permissive
NK Gavidia-Payne,1997
Resentful
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Response Type Associated Emotions
Negative Emotional
Response
Depression, anger, shock, denial, fear,
self blame, guilt, sorrow, grief,
confusion, despair, hostility, emotional
breakdown
Negative Physiological
Response
Crying, not eating, cold sweat,
trembling, fear, physical pain and
breakdown
Positive EmotionalResponse
Prepared for diagnosis, want to hearwhat can be done for the child
Nonspecif ic Response
Heiman 2002
NK
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Nature of the disability
Information base
Family Psychological
status
Medical and Social
attitudes
Support networks
Type, severity, progression (includingpresence or absence of brain damage)
Knowledge, health beliefs andexpectations of the family
Coping Style
Family, friends, health professionals andothers
Family, local community, etc
NK
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Ante-stress period
e.g. hospitalization of a child The actual stress period
e.g. family support, spiritual support
Post-stress period
e.g. promote family wellness
NK
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B
One or more factors balancing absent
Human BEING
State of equilibrium
State of disequilibrium
Felt need to restore equilibrium
Stressful Event Stressful Event
A
Balancing factors present
Distorted perception of the eventsRealistic perception of the events
And /orplus
Adequate situational support No adequate situational support
No coping mechanismsAdequate coping mechanisms
Resolution of the problem
Equilibrium regained
No Crisis
Problem unresolved
Disequilibrium continues
Crisis
Result in
Redrawn, 1998
Result in
plus And /or
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The family’s failure in use of effective
adaptive strategies in the presence of the
stress and stressor.
NK
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Shock: Begins when the person is initially faced
with the crisis events.
Defensive Retreat: A fights or flight response.
Acknowledgement: The person must face reality
and no longer use denial.
Adaptation and Change: The person retains a new
sense of self and decides that life is worth.
NK
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Developmental or maturational crisis
Are conflicts encountered by all human beings as theydevelop and are faced with normal biological periodsof growth throughout the life cycle.
Situational crisis
Are sudden unexpected external stressful events or lifechanges over which a person has no control, threaten the
individual’s biological and social integrity, and cause somedegree of disequilibrium.
NK
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Help the client to:
Accept help because some clients avoid confronting acrisis by denying that they need help and that
a problem exist
Confront the crisis by supporting expression of
feelings and emotions such as fear, guilt, crying. Find the facts, because truth is less frightening than
the unknown.
NK
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DO NOT
Give the client false reassurance because this leads to
mistrust and maladaptive coping behaviors.
Encourage the client to blame others, because
blaming only reduce tension momentarily and can help
the client to suppress feelings.
NK
Cont/-
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The family is theimmediateENVIRONMENT
where the childdevelops
NK
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Harder to get things done because of excess demands
Strains on marriage and personal relationships
Minimal relief options; burnout and / or depressioncan result
Strains and changes to employment of parent or
caretaker
Increased financial burdens from issues relating totherapies, medical bills etc.
NK
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May hurt self esteem as a result of criticism,
exclusion etc.
Increased financial burdens from issues relating to
therapies, medical bills etc.
Increased demands on family members
Change in priorities
Decreased recreation and leisure activities (limited
options and time) Concerns for future care giving
Cont/-
NK
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Education
Recreation
Residential options
Family relationshipsHealthcare / wellness
Day care
Life planning / management
NK
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Definition
Strategies & behaviors aimed at Maintaining or strengthening the
stability of the family, Obtaining resources to manage thesituation &
Initiating efforts to resolve the
hardships created by the stressor
NK
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Improved child behaviour
↓ parental and child stress
↑ adherence to intervention programmes
Improved family functioning
Improved communication
Enhanced parent-child socio-emotional relationship
A more holistic approach due to family sharingtheir knowledge
NK
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Identify the pathology and impairment underlying
the disability
Assess and diagnose the disability
Intervention to change the nature of disabilities,
impairments and handicap as a part of
rehabilitation
NK
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Working Openly
With The
Family Members
NK
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Assist in giving accurate knowledge,
Accelerate the recovery process of grieve
reaction ,
Lessening guilt and anxiety,
Fostering family support, and
Developing cooperation with medical and
support team.
NK
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Outline the condition,
Describe how the condition may vary in severity,
Tell them what you think may be the cause,
Explain if it relates to something that happened
during early pregnancy,
Are there any associated abnormalities structural
or chromosomal.
NK
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Discuss the treatment / medication options,
Discuss any alternative treatments, if there are any,
Discuss the risks associated with these options.
NK
Discuss the general prognosis,
Say that this is hard to predict.
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This should be both personal from you and the
health team,
By informing the family about appropriate support
groups or start one.
NK
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1. Identify
Family Goals
2. Identify
Barriers
3. Identify
Facilitators
4. Develop Plan
with Parents5. Evaluate Goal
Progress
6. Modify
Plan
NKHughes,2006
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Internal
Factors
Limited
availabilityof
a parent
High
levelsof
parental
stress
Familyconflict
Poorpsych.
adjustment
Lower
education
level
Fewer
financial
resources
NK
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