CHILD WITH CRHONIC ILLNESS AND DISABILITY

 Chronic illness a condition that interferes with daily functioning for more than 3 months
in a year, causes hospitalization of more than 1 month in a year, or (at time of diagnosis) is likely
to do either of these.

 Congenital disability a disability that has existed since birth but is not necessarily
hereditary

 Developmental delay a maturational lag; an abnormal, slower rate of development in

which a child demonstrate a functioning level below that observed in normal children of the
same age

 Developmental disability any mental and or physical disability that is manifested before
age 22 years and is likely to continue indefinitely

 Disability a long term reduction in the child’s ability to engage in day to day activities
(e.g., playing, attending school) because of chronic condition

 Handicap a condition or barrier imposed by society, the environtment, or one’s own

self; not a synonim for disability

 Impairment a loss or abnormality of structure or function

 Technology-dependent child a child between the ages of birth and 21 years with chronic
disability that requires the routine use of medical device to compensate for the loss of a life-
sustaining bodily function; daily ongoing care and or monitoring is required by trained personnel

PERSPECTIVES IN THE CARE OF CHILDREN WITH SPECIAL NEEDS

 Children with special health care needs

Children who have or are at increased risk for a chronic physical, behavioral, developmental, or
emotional condition and who also require health and related services of a type or amount beyond that
required by children in general.

 Life expectancy of children with chronic illness has increased

 Chronic illness has surpassed acute illness as the major health concern for children

 The most common chronic childhood conditions causing disability are respiratory
diseases (primarily asthma), and impairments of speech, sensory functions, and intelligence
(primarily mental retardation)

 Chronic illness and disability have substantial effects on family functioning

TRENDS IN CARE OF CHILD WITH CHRONIC ILLNESS OR DISABILITY

  DEVELOPMENTAL FOCUS

Using a development approach rather than chronologic age to uderstand child response to the chronic
illness or disability.

 Developmental changes in the child continue despite the added stress of coping with a
chronic illness

 Knowledge of the developmental theory perspective is paramount in providing the

support necessary for children to successfully adjust to a stressful life experience such as a
chronic illness or disability

 FAMILY DEVELOPMENT

 Assessment of family development, focuses on the changing ages and developmental

task of both children and adults and on the changing external demands as the family grows
older.

 Family development may be interupted or even regress to a previous level of

functioning.

 Ex: having a child with chronic illness may impose an added stress on the newly married
couple who are in the midst of establishing a family identity.

 FAMILY CENTERED CARE

 Families of chronically ill children have comprehensive and complex caretaking

responsibilities in the hospital or at home

 Principle in family centered care families become active participants in decision making
about the care of their children

 The best predictor of the wellbeing of children factors associated with family
functioning

 Collaboration, sharing information about the illness, responsibility, and decision making
establish effective and trusting partnership with parents

 Effective family centered care family is a key component of the child’s care and illness
experience; recognizes and respects the expertise of the family in caring for the child within and
outside of the hospital milieu.

Integrating family centered care in practice:

 Requires health professionals to do the following:

1. To acknowledge and respect a family’s individuality and strengths

 2. To foster a family’s competence and confidence in caring for the child

3. To empower a family to advocate for their child when dealing with the health care
system

 NORMALIZATION

 Normalization refers to establishing a normal pattern of living

 Daily routines for the child with illness or disability should be fitted to the family’s
schedule rather than vice versa

 Age appropriate expectations for the child’s behavior should be applied

 The environtment should be structured to encourage the child’s engagement in age

appropriate activities

 Nurses can facilitate the normalization process for families of children with special needs
by acknowledging their normalcy, strengths, and weaknesses.

 HOME CARE

 Home care refers to the return to a system and set of priorities whereby family values
are as salient in the care of a child with a chronic illness as they are in the care of healthy
children.

 Goal of homecare – consistent with the developmental model:

1. Normalize the life of a child with special needs, including those with technologically complex care, in a
community and family setting and context

2. Lessen the disruptive impact of the child’s condition on the family

3. Promote the child’s maximum growth and development

 MAINSTREAMING

 Refers to a process of integrating children with special needs into regular classrooms and
child care centers.

 School allows these children to acquire a sense of self and understanding of their place
with respect to their peers and provides important opportunities for socialization with
nondisabled children, enabling the latter group to develop attitudes of respect for and
acceptance of their peers with special needs.
  A crucial developmental task for children 5 years of age and older is to move beyond the
family environment into the school community, where social competence, academic
achievement, and reguler attendance are important goals.

 EARLY INTERVENTION

 Early intervention includes any systematic and sustained effort to assist young,disabled,
and developmentally vulnerable children from birth to 3 years of age.

 Nurse’s role early identification and assessment of children at risk for disability,
multidisciplinary assessment, and case management.

 MANAGED CARE

 Implementing managed care for children with disabilities differs from providing care
with disability in three ways:

1. The changing dynamics of child development affect the needs of these children at
various developmental stage and change their anticipated outcome

2. The prevalence and epidemiology of childhood disabilities with few common condition
and many low incidence or rare ones, vary considerably from those of adults, for whom there
are many common condition and few rare ones

3. Due to children’s need for adult guidance and protection, their development and health
rely heavily on their families’ socioeconomic status and health.

Diverse effects of managed care:

1. Acces to care

2. Use of services

3. Quality of care

4. Satisfaction with care

5. Cost for care

6. Health outcomes

7. Family impact

DEVELOPMENTAL ASPECTS OF CHRONIC ILLNESS OR DISABILITY IN CHILDREN

INFANT
DEVELOPMENTAL TASK

• Develop a sense of trust

• Attach to parent

• Learn through sensorimotor experiences

• Begin to develop a sense of separateness from parent

POTENTIAL EFFECTS OF CHRONIC ILLNESS OR DISABILITY

• Multiple caregivers and frequent separations, especially if hospitalized.

• Deprived of consistent nurturing.

• Delayed because of separation, parental grief for loss of “dream” child, parental inability
to accept the condition, especially a visible defect.

• Increased exposure to painful experiences over pleasureable ones.

• Limited contact with environment from restricted movement or confinement.

• Increased dependency on parent for care.

• Overinvolvement of parent for care.

SUPPORTIVE INTERVENTION

• Encourage consistent caregivers and care by parent in hospital or other care setting.

• Encourage parents to visit frequently or “room in” during hospitalization and to

participate in care.

• Emphasize healthy, perfect qualities of infant.

• Help parents learn special care needs of infant for them to feel competent.

• Expose infant to pleasureable experiences through all senses (touch, hearing, taste,
movement)

• Encourage age-appropriate developmental skill (e.g holding bottle, finger feeding,

cawling)

• Encourage all family members to participate in care to prevent overinvolvement of one

member.

• Encourage periodic respite from demands of care responsibilities.

TODDLER

DEVELOPMENTAL TASK

• Develop autonomy

• Master locomotor and language skills

• Learn through sensorimotor experience, beginning preoperational thought

POTENTIAL EFFECTS OF CHRONIC ILLNESS OR DISABILITY

• Increased dependency on parent

• Limited opportunity to test own abilities and limits

• Increased exposure to painful experiences

SUPPORTIVE INTERVENTION

• Encourage independence in as many areas as possible (e.g toileting, dressing, feeding).

• Provide gross motor skill activity and modification of toys or equipment, such as
modified swing or rocking horse.

• Give choices to allow simple feeling of control (e.g. choice of what book to look at or
what kind sandwich to eat).

• Institute age-appropriate discipline and limit setting.

• Recognize that negative and ritualistic behavior are normal.

• Provide sensory experiences (e.g. water play, sandbox, finger paint)

PRESCHOOLER

DEVELOPMENTAL TASK

• Develop initiative and purpose

• Master self care skills

• Begin to develop peer relationships

• Develop sense of body image and sexual identification

• Learn through preoperational thought (magical thinking)

POTENTIAL EFFECTS OF CHRONIC ILLNESS OR DISABILITY

 • Limited opportunities for success in accomplishing simple task or mastering self care
skills

• Limited opportunities for socialization with peers; may appear “like a baby” to age
mates.

• Protection within tolerant and secure family may cause child to fear critism and
withdraw

• Awarness of body may center on pain, anxiety, and failure

• Sex-role identification focused primarily on mothering skills

• Guilt (thinking he or she caused the illness/disability or is being punished for

wrongdoing)

SUPPORTIVE INTERVENTION

• Encourege mastery of self-help skills

• Encourage socialization, such as inviting friends to play, daycare experience, trips to park

• Provide age-appropriate play, especially associative play opportunities

• Emphasize child’s ability; dress appropriately to enhance desirable appearance

• Encourage relationship with same-sex and opposite-sex peers and adults

• Help child deal with critism; realize that too much protection prevents child from
mastering realities of world

• Clarify that cause of child’s illness or disability is not his or her fault or a punishment.

SCHOOL AGE CHILD

DEVELOPMENTAL TASK

• Develop a sense of accomplishment

• Form peer relationships

• Learn through concrete operations

POTENTIAL EFFECTS OF CHRONIC ILLNESS OR DISABILITY

• Limited opportunities to achieve and compete (e.g. many school absences or inability to
join regular athletic activities).

• Limited opportunities for socialization

 • Incomplete comprehension of the imposed physical limitations or treatment of the
disorder.

SUPPORTIVE INTERVENTION

• Encourage school attendance; schedule medical visits at times other than school;
encourage to make up missed work.

• Educate teachers and classmates about child’s conditions, abilities, and special needs

• Encourage physical activity

• Encourage socializations

• Provide child with knowledge about his or her condition

• Encourage creative activities

ADOLESCENT

DEVELOPMENTAL TASK

• Develop personal and sexual identity

• Develop personal and sexual identity

• Achieve independence from family

• Form personal relationships

• Learn through abstract thinking

POTENTIAL EFFECTS OF CHRONIC ILLNESS OR DISABILITY

• Increased sense of feeling different from peers and less able to compete with peers in
appearance, abilities, special skills

• Increased dependency on family; limited job/career opportunities

• Limited opportunities for heterosexual friendships; less opportunity to discuss sexual

concern with peers

• Increased concern with issues such as why did he or she get the disorder, can he or she
marry and have a family

• Decreased opportunity for earlier stages of cognition may impede achieving level of
abstract thinking

SUPPORTIVE INTERVENTION FOR ADOLESCENT

 • Realize that many of the difficulties the teenager is experiencing are part of normal
adolescence (rebelliousness, risk taking, lack of cooperation, hostility toward authority)

• Provide instruction on interpersonal and coping skills

• Encourage socialization with peers, including peers with special needs and those without
special needs

• Provide instruction on decision making, assertiveness, and other skills necessary to

manage personal plans

• Encourage increased responsibility for care and management of the disease or

condition , such as assuming responsibility for making and keeping appointment , planning
stages of health care delivery, contacting resourcess

• Encourage activities appropriate for age, such as attending parties, sport activities

• Be alert to cues that signal readiness for information regarding implications of condition
on sexuality and reproduction

• Emphasize good appearance

• Discuss planning for future and how condition can affect choices

HELPING THE CHILD TO COPE

 Coping mechanisms

 Normalization

 Hopefulness

 Health education/self care

 Realistic future goals

THE FAMILY OF THE CHILD WITH SPECIAL NEEDS

 Major goal to support the family’s coping and foster their optimum functioning
throughout the child’s life

 Longterm, comprehensive, family centered

ASSESSING FAMILY STRENGTHS AND ADJUSTMENT

 Purpose to determine what assistance a family may need or want in managing the care
of their child
  Family centered care family should be an active participant

ACCEPTING THE CHILD’S CONDITION/SUPPORT AT THE TIME OF DIAGNOSIS

 Planning the setting for informing parents

 Assessing the family’s prior knowledge and experience about chronic conditions

 Emotional support empathy, cultural sensitivity

 Reactions: guilt, denial, anger

 Family’s level of understanding and expectations

 A crucial task for parents decide when, what, and how to tell their child about the
diagnosis

MANAGING THE CONDITION ON AN ONGOING BASIS

 Goal and approaches

 Acceptance

 Special information needs management of the condition

 Family management styles

thriving family perceive the condition and the child as normal

accommodative family normal but more compliant approach to illness management

enduring family having a child with a chronic illness as difficult, child as a tragic figure

struggling family conflict over how best to manage their child’s condition, less support one
another

floundering family confusion, uncertain about the best management approaches

MEETING THE CHILD’S NORMAL DEVELOPMENTAL NEEDS

 Home and school setting

 Child’s developmental progress, learning ability, feeling of self-esteem, and social

relationships

MEETING DEVELOPMENTAL NEEDS OF OTHER FAMILY MEMBER

 Parents
 • Parental roles parent’s energy, time , and financial resources

• Mother/father differences mother with emotional release, father with

“practical” approach or withdrawing

• Fathers seeking information, prayer, escape into their work, assertive

• Single parent families social suppport network, empathy

• Foster/adoptive families

 Sibling

 jealousy, anger, fear, guilt, resentment

 Younger children tend to become irritable and withdrawn, whereas older sibling tend to
act out

 Extended family members and friends

 Sourcess of stress

COPING WITH ONGOING STRESS AND PERIODIC CRISES

 Concurrent stresses within the family

 Coping mechanisms

 Approach behaviors are those coping mechanisms resulting in movement toward

adjustment and resolution of the crisis.

 Avoidance behaviors result in movement away from adjustment or maladaptation to the

crisis.

 Parental empowerment

empowerment can be viewed as a personal process in which individuals develop and use the
necessary knowledge, confidence, and competence for making their voices heard.

ASSISTING FAMILY MEMBERS IN MANAGING THEIR FEELINGS

 Shock and denial

can be adaptive behavior or maladaptive

ex. of denial:

1. physician shopping
 2. attributing the symptoms of the actual illness to a minor condition

3. refusal to believe the diagnostic tests

4. delay in agreeing to treatment

5. acting very happy and optimistic despite the revealed diagnosis

6. refusing to tell and talk to anyone about the condition

7. insisting that no one is telling the truth

8. denying the reason for admission

9. asking no question about the diagnosis, treatment, or prognosis

 Adjustment

 Adjustment gradually follows shock and is usually characterized by an open admission

that the condition exists

 Guilt and self accusation

 Anger and bitterness

 Four type of parental reaction during adjustment:

1. overprotection, in which the parents fear allowing the child to achieve any new skill, avoid all
discipline, and cater to every desire to impede frustration

2. rejection, in which the parents detach themselves emotionally from the child but usually
constantly nag and scold the child and provide adequate physical care

3. denial, in which the parents act as if the condition does not exist or attempt to have the child
overcompensate for it

4. gradual acceptance, in which the parents place realistic and necessary limitations on the child,
foster reasonable social and physical activities and promote self care.

 Reintegration and acknowledgement

 Social reintegration in which the family broadens its activities to include relationships
outside the home, with the child as a participating and acceptable member of the group.
(reaction of the gradual acceptance)

 Acknowledgement phase individuals take stock of what remains rather than focusing on
what is lost and begin to establish new goals for their life.

ESTABLISHING A SUPPORT SYSTEM

 Intrafamilial resources

 Social support systems

 Parent-to-parent support

 Parent-professional partnerships

 Community resources