Family-Centered Care of the Child with Special Needs Kathleen Dennis, MSN, RN
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
Symptoms of worsening condition
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
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 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 (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:
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.
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
Hand flapping and biting.
Shyness and social isolation.
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.
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
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.