Family-Centered Care of the Child with Special Needs Kathleen Dennis, MSN, RN

Learning Objectives

Identify the scope of and changing trends in care of children with special needs.

Identify the major reactions of and effects on the family of a child with a special need.

Define the stages of adjustment to the diagnosis of a chronic condition.

Recognize the impact of the illness or condition on the developmental stages of childhood.

Outline nursing interventions that promote the family’s optimal adjustment to the child’s chronic disorder.

Outline nursing interventions that support the family at the time of death.

Define the usual symptoms of normal grief.


Learning Objectives con’t

Define the classifications of intellectual disability.

Define developmental delay.

Outline nursing interventions for the child with cognitive impairment that promote optimal development, including during hospitalization.

Identify the major biologic and cognitive characteristics of children with Down syndrome.

Outline nursing interventions for children with Down syndrome.

Identify the major characteristics associated with fragile X syndrome.

List the general classifications of hearing impairment and the effect on speech.

Outline nursing interventions for children with an autism spectrum disorder.


Impact of Having Special Needs on the Child

In general, development may be delayed compared to healthy, same-aged peers

Infant: may fail to develop a sense of trust and bonding

Toddler: may have difficulty developing autonomy

Preschooler: may have difficulty achieving sense of initiative

School-age child: may have difficulty achieving industry

Adolescent: may have difficulty forming a sense of self-identity relative to peers

Stressors of Daily Life for Families of Children With Special Needs

Housing situation changes.

Sleep is affected.

Carrying out basic activities of living is affected.

Medical and technical care must be incorporated into daily life.

Family identity and employment may be altered radically.

Extended burden of care may affect health of caregivers.

Siblings may feel neglected and act out.

Impact of Having a Special Needs Child on the Family

May experience a multitude of emotions and changes in their lives.

May be overwhelmed with burdens of continual care.

May experience fear, anger, sadness, guilt, frustration, or resentment.

Siblings may feel cheated of parental time and affection.

Financial burdens may increase due to cost of care and loss of income related to caregivers leaving work.

Typical family activities may need to modified.

The Family of the Child with a Chronic or Complex Condition

A major goal in working with the family of a child with a chronic or complex illness is to support the family’s coping and promote their optimal functioning throughout the child’s life

Often the impact of the child’s medical or developmental condition is first experienced as a crisis at the time of diagnosis

Parental feelings of shock, helplessness, isolation, fear, and depression are common

Throughout the first year, parents struggle to accept the child’s diagnosis, care, and uncertainty of the future

Principles Related to Family Involvement


are a constant in the child’s life

define who they are and their culture

need access to relevant information and training

deserve to receive culturally competent care

know their strengths, limitations and fears

merit mutual respect in caregiving relationships

need to be responsible for outcomes


Adapted from Goode, T. D., Haywood, S. H., Wells, N., & Rhee, K. (2009). Family-centered, culturally, and linguistically competent care: Essential components of the medical home. Pediatric Annals, 38(9), 505–512.




Promoting Home Care for the Technology-Dependent Child

Provide early discharge planning.

Provide care and care coordination for the child at home.

Identify potential problems in home environment to providing adequate care.

Provide ongoing follow-up and routine well-child-care of the former premature infant.

Assess growth and development of the former premature infant based upon calculated age.

Adjustment to the Diagnosis of a Chronic Condition

Overprotection: The parents fear letting the child achieve any new skill, avoid all discipline, and cater to every desire to prevent frustration

Rejection: The parents detach themselves emotionally from the child but usually provide adequate physical care or constantly nag and scold the child

Denial: The parents act as if the disorder does not exist or attempt to have the child over-compensate for it

Gradual acceptance: The parents place necessary and realistic restrictions on the child, encourage self-care activities, and promote reasonable physical and social abilities


Promoting Family Adjustment

Assessing Family Adjustment

Assess available support system: Who does the parent(s) talk to when something is on their mind? What helps them when they are upset?

Perception of the Illness or Disability: Assess previous knowledge of the disorder. What are the parent(s) thoughts about the cause of the disorder? How has the child’s illness or disability affected the family?

Coping Mechanisms: Assessing attitudes of parents: How is this child different from their siblings or other children of similar age? What are your thoughts on your child’s future? Parents are equal to professionals and are experts regarding their child

Available Resources: What parts of the child’s care are causing the most difficulty for the family?

Concurrent Stresses: What other problems are the family facing now?


Focus of Nursing Management of Children With Special Needs

Case management and advocacy

Screening and ongoing assessment of the child

Provision of appropriate home care

Care of the technology-dependent child

Education and support of the child and family

Referral for resources


Educational Resources for the Child With Special Needs

Educational opportunities for children with special needs up to age 21 years are mandated by law through:

Education for All Handicapped Children Act (1975, amended as PL 99-457): early intervention from birth to age 2 and preschool for 3–5-year olds.

Individual with Disabilities Education Act (2004) requires local school systems to provide for the education of children with special needs through the public-school system, from age 3 to 21 years.

Education is usually provided in the local school system.


Components of Transition Planning

Multidisciplinary care coordination including community resources

Acknowledgement of the changing roles among the youth, family, and health care professionals

Fostering of the youth’s self-determination skills

Importance of a medical home

Adolescent Health Transition Project Schedule

By age 14  ensure a transition plan is initiated; IEP must reflect post–high school plans.

By age 17  explore health care financing for young adults (parents may be able to cover to age 26).

By age 18  all rights transfer to teen at 18. Check the teen’s eligibility for SSI and SSI work incentive the month the teen turns 18.

College-bound?  encourage teen to contact the college’s campus student disability service program.

By age 21 ensure that the young adult has registered with the Division of Developmental Disabilities for adult services if applicable.



Teaching Points During Transition of Adolescent to Adult Care

Diagnosis and medical hx to date

Treatment rationale

Symptoms of worsening condition

Danger signs

When to seek help from a professional (and from whom)

Medical insurance process

Detailed written plan of care

Consultation with transition services coordinator

Orders Related to End-of-Life Care

Limitations of Care: Parents and patients (when able) may specify their wishes for care at the end-of-life. The document is shared among all providers.

“Do not resuscitate (DNR)”

Withhold cardiopulmonary resuscitation if child’s heart stops beating

May have special limitations as part of order (oxygen and comfort care but no compressions)

“Allow Natural Death (AND): In some institutions DNR is being replaced by AND “allow natural death”.

Nursing Care During Grieving

Grief is not a single event, but is rather a process

Grief is highly individualized and is a natural response to loss

Listen for an “invitation” to talk about the situation

Use open-ended, nonjudgmental questions

Ensure privacy

Give information at the level of the parent(s) comprehension

Avoid medical jargon

Check regularly to ensure content is understood

Respond to parents’ reactions

Be aware of support and resource groups for the entire family

Focus of Palliative Care & Hospice

Managing pain and discomfort

Providing nutrition

Providing emotional support to the dying child and family

Assisting the family through the grief process

The goal of hospice care is for children to live life to the fullest without pain, with choices of dignity for whatever time remains for the child

Cognitive Impairment

Cognitive Impairment (CI): is a general term that encompasses any type of intellectual disability and affects 2.5%-3% of the population

The term mental retardation has been replaced with intellectual disability

Intellectual Disability consists of 3 components:

Intellectual Functioning

Adaptive Behavior

Age younger than 18 years at the time of diagnosis

CI is considered an umbrella term, which includes: Disabilities that are characterized by significant limitations in both intellectual functioning and adaptive behavior

Criteria for Diagnosis of Intellectual Disability

Deviations in IQ of two or more standard deviations (IQ of less than 70 to 75).

Coexisting deficits in at least two adaptive skills: communication, community use, functional academics, health and safety, home living, leisure, self-care, self-direction, social skills, and work.

Disability occurring before the age of 18 years.


Assessments for a Child With a Cognitive or Mental Health Disorder

Health history, noting the child’s prenatal and birth history.

Family history of any mental health disorders.

Past medical history (including previously diagnosed cognitive or mental health disorders).

History of neurologic injury or disease and family history of mental health disorder.

Developmental history, noting age of attainment (or loss) of milestones.


Trisomy 21 (Down Syndrome)


Presence of all or part of an extra 21st chromosome.


Some degree of intellectual disability.

Characteristic facial features.

Other health problems (e.g., cardiac defects, visual and hearing impairment, intestinal malformations, and an increased susceptibility to infections).

Laboratory and Diagnostic Tests for Down Syndrome

Genetic testing (pre-and postnatal).

Echocardiogram: to detect cardiac defects.

Genetic testing.

Sleep apnea testing.

Vision and hearing screening: to detect vision and hearing impairments.

Thyroid hormone level: to detect thyroid disease.

Cervical radiographs: to assess for atlantoaxial instability.

Ultrasound: to assess for gastrointestinal malformations.


Health Guidelines for Children With Down Syndrome

Make sure the child gets a cervical radiograph between 3 and 5 years of age to screen for atlantoaxial instability. Report any changes in gait or use of arms and hands, weakness, changes in bowel or bladder function, complaints of neck pain or stiffness, head tilt, torticollis, or generalized changes in function. Ensure cervical spine positioning precautions (to avoid over-extending or flexing of the neck) are utilized during procedures, such as those involving anesthetic, surgery or radiographs.

Fragile X Syndrome

Behavioral Problems Associated With Fragile X Syndrome

Attention deficits.

Hand flapping and biting.


Shyness and social isolation.

Low self-esteem.

Gaze aversion.

Significant Findings in Medical History of a Child With a Genetic Disorder

Maternal age older than 35 years or paternal age older than 50.

Repeated premature births, breech delivery.

Congenital hip dysplasia.

Abnormalities found on ultrasound or in prenatal blood screening tests.

Amniotic fluid abnormalities.

Multiple births.

Exposure to medications and known teratogens.

Decreased fetal movement.

Autism Spectrum Disorder (ASD)

A complex neurodevelopmental disorder of unknown etiology

The individual has difficulties in social communication and interaction

Core deficits in social interaction, communication, and behavior

Referred to as a spectrum disorder because symptoms range from mild (Asperger or Savants ) to severe

Individuals may fail to develop interpersonal relationships and experience social isolation

Possible Etiology of Autism

Genetic makeup

Brain abnormalities

Altered chemistry


Toxic chemicals

Warning Signs of Autism

Lack of eye contact or abnormal eye contact.

Not babbling by 12 months.

Not pointing or using gestures by 12 months.

No single words by 16 months.

No two-word utterances by 24 months.

Losing or regression of language or social skills at any age.

Common Screening Tools


Checklist for Autism in Toddlers (CHAT)

Modified Checklist for Autism in Toddlers (M-CHAT)


Nursing Interventions for Families of Children With Autism

Provide emotional support.

Provide professional guidance and education about the disorder.

Assess the fit between the child’s developmental needs and the treatment plan.

Help parents overcome barriers to obtain appropriate education, developmental, and behavioral treatment programs.

Stress the importance of rigid, unchanging routines.

Assess the parents’ need for respite care and make referrals.

Provide positive feedback to parents for their perseverance in working with their child.


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