1. families with disabled children -

8/16/2019 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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