Caring for Pediatrics With Developmental Delays

About

➀ Read and Learn

The following course content

This course is an overview of nursing interventions and methods used to care for pediatric patients with developmental delays, such as autism spectrum disorder (ASD) or cerebral palsy (CP). Learners will explore various pediatric conditions with developmental delays, common symptoms associated with these pediatric conditions, implications for quality of life, and management and intervention options. This course is intended for nurses from all specialties and educational backgrounds. 

Introduction 

Nurses have played an integral role in pediatric nursing care for decades. Even before there were institutions devoted to pediatric care or those with developmental delays, nurses have cared for patients with several health conditions and co-morbidities in America and globally. Presently, there are thousands of children with disabilities, developmental delays, or both.  

More evidence-based research is being conducted now more than ever on developmental delay, pediatric disabilities, and treatment options, as technology continues to evolve. From updated development milestones to increased pediatric visits and health surveillance, pediatric care for those with developmental delays is becoming more streamlined and researched (1,2,3,4). 

Background 

The history of nursing and health care for children with developmental delays in America was not always evidence-based or even humane by today’s nursing standards. Many historians and disability rights activists have called upon medical and healthcare institutions to learn from the ways pediatric patients with developmental delays have been viewed, treated, and shamed in society and even within healthcare settings.  

In particular, the Pennhurst State School, located in Spring City, Pennsylvania, opened its doors over a hundred years ago and ultimately closed them in 1987. This school was originally known as the ​Eastern Pennsylvania Institution for the Feeble-Minded and Epileptic, ​with a capacity of 500 patients. According to historians and medical records, different care areas, as well as staff and programs, were provided at this institution. Typically, pediatric patients who were placed here were those with various illnesses and different types of disabilities that made them shunned by society, deemed as unworthy, defective, and even as potentially dangerous or criminal. 

While an institution for those with disabilities might seem like a good idea in theory, the Pennhurst State School rapidly became overcrowded within the first several years of opening. Multiple historical anecdotes and records show that patients suffered abuse, including being tied to beds, undergoing medical experimentation, being drugged and sedated, and experiencing psychological, physical, and sexual abuse, even at the hands of other nurses. 

For example, historical records have shown that, in some cases at the Pennhurst school, if a patient bit other people, the staff would often remove all of that patient’s teeth. This was just one documented example of abuse by medical staff, but this type of behavior happened so frequently that even years after the institution closed, visitors would continue to find teeth in the tunnels. To this day, the Pennhurst School has become a horrific asylum for those contained within its walls. It ultimately took almost 20 years to close down the Pennhurst School after several public outcries, demonstrations, stories, and more. Finally, in 1987, its doors were permanently closed, and this became a major stepping-stone in advocacy for those with special needs.  

While much has changed in the role of public perception and care for children with developmental delays, unfortunately, there is still much stigma and shame for nurses who work with children with developmental delays and for pediatric patients with developmental delays (1,2,3,4,5,6). 

Overview 

Presently, there are four main types of special needs in children: (1) physical disabilities, (2) developmental delays, (3) dysfunctional behavioral or emotional regulation, and (4) sensory impairment. For this course, special needs will be discussed and focused on autism spectrum disorder (ASD), cerebral palsy (CP), oppositional defiant disorder (ODD), and sensory impairment.  

As nurses, it is important to recognize that patients may have a single type of disability or a combination of several. For instance, you might be caring for a patient who has visual impairment and CP. On another shift, you might be caring for a patient with asthma, ASD, and epilepsy. Because many patients, including children, can have a complex medical history, it is important to make sure you take your time to review medical histories, including medication and non-pharmacological interventions in place. It is also important to remember that each patient requires a unique and personalized treatment plan to achieve the best possible outcomes for quality of life as well as physical health.  

Consider the role of cost in your patient’s care plan as well, as children with disabilities can have much higher healthcare expenses, placing a strain on caregivers and parents. While it can be overwhelming to care for a pediatric patient with developmental delays, know that you can always ask another nurse or healthcare staff member for assistance, speak to your supervisor about care options, and discuss patient progress and concerns with the provider.  

Knowledge about the various types of disabilities and how they affect growth, development, behavior, and cognition is imperative for healthcare workers hoping to provide effective care to this population. Likewise, it is also important to recognize that there might be several patients and caregivers who might not trust nurses or healthcare workers because of discrimination and historical injustices toward children with disabilities. Take your time to be aware of the history of injustices against children with disabilities and be aware of your workplace’s policies on documentation and practices for disabilities and discrimination (1,2,3,4,5,6).  

Autism Spectrum Disorder (ASD) 

Autism spectrum disorder (ASD) is a neurodevelopmental chronic health condition that can involve repetitive behaviors, social interaction difficulties, physical soothing (“stimming”), sensory impairment, mood disturbances, and behavioral challenges. ASD has been referred to as autism, Asperger’s, and other names over the past century socially and medically.  

Presently, former diagnoses of Asperger’s and autism are referred to as on the autism spectrum or a patient with ASD. ASD has grown in popularity as a medical diagnosis over the past decade among children, adults, and geriatric populations and is no longer seen as a pediatric condition alone with many adults receiving an ASD diagnosis later in life. In particular, ASD has also been subject to much more research and medical therapies and interventions currently than prior because of growing awareness of neurodivergent and pediatric developmental behaviors (8,9,10,11,12,13).  

While ASD is a complex chronic neurodevelopmental condition, thousands of children remain undiagnosed and undertreated for this condition. Furthermore, ASD has also been publicly discussed in social media and medical spaces for its rise in diagnoses in children. Yet, there is still much to learn about ASD and its true prevalence and influence on development in pediatric patients. While there are several pharmacological options to manage ASD-related developmental delays or challenges, there are many non-pharmacological options to consider as well. For many children with ASD, psychotherapy, speech therapy, occupational therapy, and physical therapy are all possible options for those living with ASD to manage their developmental delays (8,9,10,11,12,13). 

There are several prescriptions and over the counter (OTC) medication options that can be used to manage ASD-related developmental delays. However, there are no FDA-approved methods for ASD-related developmental delays. It is important to be aware that there is no single medication or therapy to cure or treat ASD alone, as medications and other non-pharmacological interventions are given to manage ASD’s symptoms. Common prescriptions for ASD developmental delay management include antipsychotics, selective serotonin reuptake inhibitors (SSRIs), stimulants, anxiolytics, tricyclic antidepressants (TCAs), and alpha-adrenergic receptor agonists (8,9,10,11,12,13). 

How prevalent is ASD? 

ASD is a common and lifelong developmental disability affecting millions of children, with boys being four times more likely to have an ASD diagnosis than girls. However, the true prevalence of ASD is not known, as millions of people with ASD are misdiagnosed or unable to seek professional healthcare services until adulthood. Many adults with ASD even self-diagnose themselves as a result of a lack of access to health care and a lack of trust in the medical system. Some studies indicate that ASD has a prevalence of one in 68 children; however, the true prevalence and incidence are still to be determined. In addition, ASD has historically been viewed as a “white male” condition, with many ASD diagnoses at higher rates for boys compared to girls. 

Additional research shows that ASD may have different clinical presentations in boys compared to girls and that children of color might have not been adequately diagnosed with ASD, leaving many pediatric patients undiagnosed and unmanaged. Because of varying access to care, varied screening and assessments for ASD, increased self-diagnosis of ASD among caregivers for their child(ren), and provider knowledge and education on ASD, the true prevalence of ASD remains unknown (8,9,10,11,12,13). 

What are some ASD Signs and Symptoms? 

Signs of ASD in a child can vary widely and can also be misinterpreted as behaviors unique to that child’s culture, upbringing, other medical conditions, or as a result of other medication use. Some signs of ASD may include the child having trouble interacting, relating, or playing with other children. Other signs of ASD can include brief to no eye contact with others, unusual or repetitive movements (tapping, spinning, hand flapping), developmental milestone delay or loss of previously achieved milestones, difficulties in school with learning, playing with toys in odd or repetitive behavior, and/or low muscle tone, clumsiness, and poor spatial awareness.  

Most children with ASD symptoms have notable symptoms by age 2. Common ASD signs and symptoms include complications with expressing or receiving language, general loss of interest in objects and the environment, or mood changes with changes in schedule or routine. For these signs and symptoms to be considered for an ASD diagnosis in children, these behaviors must interfere with the patient’s ability to go to school or function per developmental milestones (8,9,10,11,12,13).  

Furthermore, it is important to consider updated clinical guidelines regarding ASD, including the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) Criteria for Childhood Disintegrative Disorder Diagnosis via the World Health Organization (WHO) and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5). The DSM-5 criteria for ASD states that for an ASD diagnosis, the following must be present: Deficits in social interaction and communication, restricted interests, repetitive behavior, and activities; symptoms impair everyday functioning.  

Also, consider culture and context for behaviors regarding children. For instance, limited or no eye contact can be a possible symptom of ASD, but limited or no eye contact from children, especially towards adults, is also a common cultural habit in several Asian cultures. In addition, a child who is having difficulty with learning in school can have issues with English as not their first language, issues with memory from a concussion, or another factor. Because of the nuances of a child’s behavior, looking at the big picture before diagnosis and during their care is essential (8,9,10,11,12,13). 

What Are ASD Risk Factors and Causes? 

Risk factors and causes for ASD are still not defined. Some evidence-based research suggests that ASD has a genetic and environmental exposure component. Some studies suggest that trauma can also play a role in ASD development. Other research suggests that ASD behaviors are confined to and defined by the social norms of a community. While ASD is a common developmental disability for many children, further research is needed to determine the exact risk factors and causation of ASD (8,9,10,11,12,13). 

Care of Patients with ASD 

Recognizing a child with ASD may not be easy, as clinical signs and developmental delays can vary significantly from child to child. In particular, there might be some children who can function independently, whereas others may have more sensory needs or be unable to perform activities of daily living (ADLs) independently. Some children are easier to identify, especially if they have repetitive movements or other prominent behaviors synonymous with ASD. Other children may have a much less pronounced presentation. Some children with ASD may prefer solitude or more “quiet time.” Other children with ASD might have trouble with empathy or relating to displays of emotion. They may not do well with schedule changes or new environments.  

It is also important to note that children with ASD can have varied intelligence levels, ranging from decreased levels of intelligence to being gifted. As the name implies, there is a broad spectrum of severity with ASD symptoms, ranging from high-functioning individuals who may struggle socially or academically but lead fairly normal lives to those with severely impaired intellectual and motor development requiring nearly constant supervision and care. When a child has a known or suspected diagnosis of ASD, consistency and structure are fundamental in helping them reach their highest level of functioning on an everyday basis, as well as when ill or stressed. Children with ASD do best with a schedule and keeping things similar from one environment to the next (8,9,10,11,12,13). 

If possible, keeping disruptions to a minimum is also optimal as well as always remembering to reward positive behavior. These children can be hypersensitive to stimuli which may trigger a tantrum or adverse change in behavior. Parents are often first able to note a change in behavior with their child based on non-verbal cues including a sound they may make, body posture/gestures as well as things they may do when they are hungry, ill, tired, etc.  

Children with ASD often benefit from knowledgeable and well-trained healthcare providers who understand their difficulty navigating social situations and communication in general. To develop a trusting rapport with a patient who has ASD, healthcare professionals should attempt to see things as the child does, not have them try to make sense of what is “normal.” Remaining engaged with the child, using the child’s name often with interaction, as well as getting down on the child’s level is helpful.  

The child with ASD may benefit from a quiet area that is softly lit to avoid distraction or overstimulation. Offer simple explanations and break tasks into small, manageable segments; make sure to allow extra time to do any type of assessment or procedure. Offer rewards and praise often. A child may use repetitive movements as a way to cope or self-stimulate – this may occur with anxiety or pain. A child in a healthcare setting may exhibit an increase in these behaviors due to the stress of a new environment or illness (8,9,10,11,12,13). 

ASD Case Study 

Alex is a 7-year-old patient in the hospital for pneumonia and is receiving IV antibiotics and breathing treatments routinely. He also has ASD. Alex often tries to pull out his peripheral IV and is unable to understand the need for it. He will not take pills by mouth. He dislikes the nebulized breathing treatment mask on his face, and he will rock rapidly back and forth and hum loudly when he is approached by someone new. 

Caring for Alex will require the healthcare provider to have some extra skills, patience, and ingenuity. The staff work with Alex’s dad at the bedside. They learn that Alex loves to play with a textured ball and roll it between his hands. The hospital’s therapy department can find several textured balls that Alex loves. 

Staff use his dad’s reassurance and the different sizes and color therapy balls to help keep Alex distracted from his medical needs. They find that using toys he likes during nebulizer treatments and when IV antibiotics are infusing are successful in completing the necessary therapy, as well as taking breaks as needed and letting Alex rock and play with the textured balls during care provision. 

Cerebral Palsy 

Cerebral palsy (CP) is the most common motor disability in childhood and consists of a group of neurological disorders affecting a child’s ability to move and maintain balance and posture. It is estimated that approximately one in 300 children have been diagnosed with CP, but estimates can vary depending on the severity of clinical presentation of CP, as CP can be misdiagnosed.  

About 75-85% of children with CP have spastic CP, where muscles are stiff and thus with awkward movement; however, over half of children with CP can walk independently. CP can affect any muscle group, which can make some children with CP appear “normal” or non-disabled, even though they have the condition.  

As an interesting fact, many children who have CP also have a co-occurring condition. In particular, estimates suggest that 4 in 10 children with CP also have epilepsy, and 1:10 have ASD. CP may be termed the part of the brain affected and the resulting symptoms, such as spastic (stiff or spastic muscle, most common), athetoid (affects the ability of the child to control their muscles and arms/legs may flutter or move suddenly) and ataxic (affects balance and coordination).  

There is no cure for CP, and without adequate medical intervention, many pediatric patients with CP will either have a decreased quality of life or die prematurely. Medical interventions for CP often include physical therapy, speech therapy, occupational therapy, play therapy, exposure therapy, surgeries, and pharmacological interventions, such as muscle relaxers, benzodiazepines, antiepileptic medications, and pain medications (14,15,16,17,18,19). 

How prevalent is CP? 

As stated above, it is estimated that approximately one in 300 children have been diagnosed with CP, but estimates can vary depending on the severity of the clinical presentation of CP. There is often no single test to determine CP, as physical examination, neuroimaging, and patient history often can determine a patient’s risk and likelihood of having CP. CP is more common among premature infants than full-term infants. While some studies have suggested that more male infants were more likely to experience CP, there is now mixed evidence stating that CP can equally affect both genders (14,15,16,17,18,19).  

What are some CP Signs and Symptoms? 

CP signs and symptoms can vary depending on the severity of CP in a child. Common signs and symptoms include pain, dental complications, mobility impairment, neurocognitive impairment, feeding difficulties, speech impairment, nerve damage, and more. For some, limb impairment, such as a stiff wrist, might be all the visible symptoms you observe. For others, CP can impact muscles around the lungs and bowels, causing severe complications with breathing and defecating or muscles around the legs, causing permanent mobility concerns (14,15,16,17,18,19).  

What Are CP Risk Factors and Causes? 

Risks for congenital CP include prematurity, small for gestational age, being a twin or multiple gestation, being conceived by IVF or other assisted reproductive technology, maternal infection during pregnancy, or kernicterus during the newborn period. A small percentage of CP occurs from brain damage that happens more than 4 weeks after birth (acquired CP) with risk factors such as meningitis or severe injury to the head. The specific type of CP in most children is unknown. The time when CP is diagnosed is most commonly during the first or second year after a child is born; it is more difficult to diagnose if the child has mild symptoms. Further evidence suggests that pre-eclampsia, genetics, maternal substance use, abnormal placenta pathology, intrauterine stroke, and physical trauma can also influence the likelihood of developing CP (14,15,16,17,18,19).  

Care of Patients with CP 

A child with CP will need special care depending on the extent of their CP. Getting to know each specific child with CP uniquely will help guide the healthcare worker’s ability to assimilate the care that they need. Some children have mobility loss due to the effects CP has on the muscles but have normal intelligence and cognitive function levels.  

A child with CP may fear treatments or therapies due to painful past experiences or feel like they have a lack of control over their environment due to impaired mobility or muscle tone. Other children with CP may be more significantly affected by developmental delays as well as physical impairment and thus need extra consideration from those caring for them due to being non-verbal and non-mobile. 

As a caregiver, knowledge of children who have CP is important to provide the best client-centered care. Working closely with and getting to know each client will give the professional better insight as to what level of cognizance and learning the client functions at and how they perceive, process, and relay information. Clients may also have anxiety or fear related to anticipating medical appointments or getting around in big places like malls, schools, or hospitals.  

The child may walk with bracing devices on their lower extremities or walk with assistive devices like canes or a walker. Many of these children receive physical, occupational, and speech therapy services to help them with walking, talking, and activities of daily living. Some children with CP have constipation or incontinence issues, which they may be embarrassed about, or may cause hygiene and other health concerns (14,15,16,17,18,19). 

It is important to focus on the child’s strengths and abilities and help each child reach their maximum potential and have pride in what they can do. By coordinating with various therapists who can help work with strength and movement as well as activities of daily living, the child can be an active part of their care. This helps to promote empowerment and encourage growth. Have the child assist in any activity that they are able. For example, if they cannot stand but can hold items in each hand, use a bath chair for shower time and help them into the chair, but allow them to hold in each hand a washcloth and soap and wash what they are safely able to. 

Praise and encourage safe self-care when possible. If a child is completely dependent upon others and is unable to move or verbalize, watch for verbal cues of discomfort, including grimacing, moaning, and changes in respiratory and heart rates. Make sure care needs are anticipated, including a splint-wearing and turning schedule as well as incontinent care and bathing. Always talk to the child and explain what you are doing, even if the child is non-verbal. Soothingly talk to the child or sing familiar songs to ease anxiety.  

Nutritional needs are very important in a patient with CP. Feeding difficulties are common, which may hinder the child’s ability to consume food orally. An inadequate food intake can result in delayed growth and development, digestive issues, risk for aspiration, and ultimately the potential need for a feeding tube. Eating may be prolonged and very painful for the child. Foods may need to be altered in terms of texture and liquids thickened to be safely eaten. Those caring for the child need to supervise feeding times and monitor for signs and symptoms of aspiration or food intolerance (14,15,16,17,18,19). 

Cerebral Palsy Case Study 

Brittany is a 12-year-old girl in a long-term medical care facility for children with special needs. She has CP and has been able to eat orally. Her food is to be mechanically soft per her provider’s orders. You note that halfway through her meal, she seems to be struggling to swallow, with a wet-sounding voice and cough. As you glance at her dinner, she seems to be taking large bites and swallowing them without chewing. Assessing Brittany for signs of aspiration and supervision during all oral intakes would be of utmost importance. Also, following up with testing to assess her chewing and swallowing ability for a possible diet change is something to consider. 

Oppositional Defiant Disorder (ODD) 

Oppositional defiant disorder (ODD) is a behavioral disorder that has received much public and medical attention over the past decade for its clinical criteria and public perception. ODD is currently defined as a behavioral disorder, where a child exhibits behaviors falling into three main categories: vindictiveness, argumentative or defiant behavior, or angry or irritable mood. Now, any child can be argumentative and strong-willed at times, having a tantrum to get their way, and then having an emotional meltdown when they don’t get what they want. Sometimes, this can become more frequent or occur in patterns that indicate oppositional defiant disorder (ODD) (20,21,22,23,24). 

Signs of ODD generally start during preschool; signs may occur a bit later but are almost always before the teen years. The behaviors associated with ODD may cause significant impairment in family, social activities, and school. ODD can vary from mild (generally occurs only in one setting), to moderate (some symptoms occur in at least 2 settings) to severe (some symptoms occur in 3 or more settings). ODD has been a behavioral disorder of controversy because of the lack of addressing for why a child might have emotional, angry outbursts, such as unresolved family violence in the home, childhood abuse, poverty, or bullying. Other times, ODD behaviors, such as defiance, can be misinterpreted as children acting in ways parents do not approve of, such as being homosexual or defying a family’s cultural expectations.  

Furthermore, an ODD diagnosis may mask other behavioral or mental health diagnoses, such as bipolar, depression, ASD, or other health conditions. In addition, some studies suggest that children and teenagers who have an ODD diagnosis are at increased risk of incarceration, deemed as “troubled youth,” without addressing issues, such as housing instability and financial instability, that many low-income youths experience. Because of the nuances of ODD, many children with this diagnosis have interventions from therapists, counselors, social workers, and more. There are no FDA-approved medications for ODD (20,21,22,23,24).  

How prevalent is ODD? 

ODD is reported to affect 1-16% of the school-aged population and is often more common in boys than in girls. The true prevalence of ODD is not known, as not all children can receive adequate diagnosis and treatment for behavioral health concerns. It is also important to note that ODD diagnoses tend to decrease with age (20,21,22,23,24). 

What are some ODD Signs and Symptoms? 

Diagnostic criteria note that emotional and behavioral symptoms have to persist at least 6 months and include: angry and irritable mood (often/easily loses temper, frequently touchy and easily annoyed by others and is often angry and resentful); argumentative and defiant behavior (often argues with adults/those in authority, often actively defies or refuses to comply with adults’ requests/rules, often deliberately annoys/upsets people, often blames others for mistakes/misbehavior); and vindictiveness (often spiteful or vindictive, has shown spiteful/vindictive behavior at least twice in the past 6 months). These behaviors must be interfering with a child’s ability to function in school, at home, or with ADLs (20,21,22,23,24). 

What Are ODD Risk Factors and Causes? 

The cause of ODD is uncertain, but some contributing factors may be related to the environment and genetics. Some studies suggest that maternal smoking during pregnancy, socioeconomic challenges, family violence and instability, and negative peer influences can also contribute to the development of ODD. Yet, there is no single cause for ODD and further research is needed (20,21,22,23,24). 

Care of the Patient with ODD 

ODD is not a familiar diagnosis to all healthcare personnel. Healthcare workers may initially look at these children as poorly behaved or “difficult.” Finding the best way to approach, treat, and work with these children in a healthcare setting is challenging and requires patience, creativity, as well as flexibility. These children may not respond to authority, may be argumentative and hyper-reactive, as well as demanding. Anticipating potential outcomes is essential when the child is healthy as well as ill.  

Caring for a child with ODD requires a calm, simple, and structured approach. These children need to know what things are non-negotiable, including reasonable age-appropriate rules and limits. Children with ODD are frequently anxious and feel the need to control what is around them. If a rule is to not hurt oneself or others, then the child needs to be aware of this as well as the consequences (20,21,22,23,24). 

Using a calm, slow voice will make it difficult for the child with ODD to engage in arguments or battles of will. If the child escalates in their behavior, take a break and call for assistance if needed. Celebrate success when the child can manage behaviors related to their ODD. Always build on the positive and give praise. A structured environment of rest, healthy nutrition, and exercise will help a child better cope and regulate emotions. 

These children may need individual psychotherapy to help them manage their anger. Family psychotherapy can help improve communication and mutual understanding. Parent management training can help parents and others manage the child’s behavior, cognitive problem-solving skills training, and therapy to decrease negativity. Social skills training to increase flexibility and improve social skills and frustration tolerance with peers (20,21,22,23,24).  

ODD Case Study 

Danny is a 12-year-old boy who goes to the doctor’s office for a check-up. He refuses to talk to the nurse and is not cooperative with his assessment. His mom is begging him to be cooperative and offers him candy to let the nurse take his vital signs. 

He becomes belligerent, cursing at the nurse, pushing his mom away, and attempting to walk out of the exam room, exclaiming that he needs to get home to finish his video game and that he told his mom he didn’t want to come to the doctor’s office. Another nurse who is familiar with Danny and ODD, meets Danny outside of the exam room. He starts to become upset, and she calmly listens to him. 

He threatens to leave, and she asks him why, as well as gently reminding him that he is here and needs to have his exam so that he can register for the next school year. He talks about his video game, and she expresses an interest in learning more about his gaming. 

She reassures Danny that if he cooperates, the visit will go quickly, and he can get back to his video game. He is initially resistant but is unable to argue as this has been established as a necessity, and she has been his nurse on prior visits and has followed up on her promises to him, so he has some trust in her. He also does not want to lose his video game privileges, so he obliges. 

Sensory Impairment 

A special needs child with sensory impairment may be blind, visually impaired, deaf, or hearing impaired. This child may have had this sensory loss from birth (congenital), or may have acquired it from a disease, illness, or injury. The term “visually impaired” describes children who have sight problems severe enough to interfere with learning; only five percent are blind. 

Loss of vision affects all areas of development including social development (may not be able to pick up on non-verbal cues or may appear disinterested as they are unable to make eye contact), and motor development (the child may lack motivation to move toward that which cannot be seen or due to fear of the unknown). 

Exploring the environment is critical to cognitive development. Language acquisition can also be affected by the loss of vision as active interaction with others in the environment is important to language development. Loss of vision also impacts activities of daily living and when caregivers hurry to help or rush to take over tasks for a visually impaired child, it creates a learned helplessness in the child. The child with hearing loss may be partially or completely deaf.  

There are two main types of deafness. The first is sensorineural deafness, which is when there is a fault in the inner ear, usually the cochlea, and is permanent – the level of hearing loss may be described as mild, moderate, severe, or profound. The second type occurs when sounds fail to pass through the outer and middle ear to the cochlea and auditory nerve. This type is referred to as “conductive deafness” and commonly occurs from a buildup of fluid in the middle ear. 

This type of hearing loss may fluctuate or be temporary. Hearing loss can have detrimental effects on language development and communication, with the severity of hearing impairment often determining how these children will communicate best. They may learn to speak (often with varying levels of impairment), lip-read, or communicate using sign language. Assistive devices such as hearing aids, cochlear implants, and special telephones are also common. Impaired ability to communicate can cause hearing-impaired children to struggle socially and should be considered when caring for them. 

It is important to understand that there are varied levels of hearing and visual impairments and that some pediatric clients can have both at the same time in addition to other health concerns, such as asthma. Based on the client’s presentation and health history, medical interventions can include speech therapy, physical therapy, surgery, medications, psychotherapy, and more (25,26,27,28,29).  

How prevalent is Sensory Impairment? 

Pediatric blindness and deafness both affect thousands of children in America but are more prevalent in developing countries. Because of early detection programs in place and early access to pediatric care, sensory impairment is often detected promptly and can be addressed and repaired with medical intervention if needed. However, despite medical interventions, there are thousands of children with visual or hearing (or both) impairments, making this a common developmental delay and something to be aware of (25,26,27,28,29).  

What are some Sensory Impairment Signs and Symptoms? 

Common signs and symptoms of sensory impairment can vary. For pediatrics with hearing impairment, children who are non-responsive or atypical with their responses to sound is often the most remarkable sign. As for visual impairment, children who are non-responsive to light or visual stimuli is often the most remarkable sign (25,26,27,28,29).  

What Are Sensory Impairment Risk Factors and Causes? 

Common causes of pediatric blindness and visual impairment include trauma, genetics, infection, and congenital health conditions. Common causes for pediatric hearing impairment or deafness include trauma, genetics, congenital health conditions, or infection (25,26,27,28,29). 

Care of the Patient with Sensory Impairment 

Healthcare workers need to be on the lookout for children with sensory impairments to adequately communicate with and effectively treat them. If a child seems to have difficulty seeing, make sure they have essentials like adequate lighting, are wearing glasses (if they are ordered for that child), or are near things they need where they are situated (hospital bed, exam table) to give them the best vision as possible. If a child is completely blind, remember to communicate well and guide them with any adaptive equipment they may have (cane) as well as taking things slowly and carefully (25,26,27,28,29).  

If a child has a hearing deficit, talk directly and closely to them and make sure they have their hearing aids in if they are ordered. Check with their chart and/or caregivers to see how to best communicate, such as sign language, lip reading, and so on. Have the child be as familiar with the healthcare environment as possible, letting them see, touch, and interact with as much of their surroundings as safely possible and let them ask questions to promote comfort. Offer something familiar like a toy or blanket to help ease stress and unfamiliarity.  

Caring for the sensory impaired child requires the healthcare professional to understand that there is an issue with how the child obtains information and communicates, and then creatively find a way to interact successfully with the child. A child who has hearing problems may need you to speak to them slowly, especially if they read lips, and also speak closely if they are able to hear at all (25,26,27,28,29).  

Knowing sign language is also helpful, and many children know basic signs, as well as signs that they have adapted for their own care needs. The child may have delayed speech or no ability to speak at all. Provide cues and make sure the child understands what you need to do before going to the next step. If the child wears hearing aids, make sure they are worn to increase hearing. If the child has a visual disturbance, make sure not to startle the child, and approach them slowly. 

Offer as much familiarity in an unfamiliar setting as possible, such as a sippy cup the child is used to, a familiar toy, or something similar. Let them feel things that are in their environment and make sure they acknowledge what care they need before going forward (have them touch, feel, and hold the thermometer, or the stethoscope, and the like (25,26,27,28,29). 

Sensory Impairment Case Study 

Robyn is 6 years old and comes in for an exam with her mother. She has issues with both her hearing and sight, though her sight is better than her hearing. The nurse needs to weigh Robyn on the scale but is not familiar with her and hasn’t taken the time to review her chart before this visit. Robyn is scared of the doctor’s office, as she hates to get injections, so she fears this with every visit. 

The nurse is busy, and the doctor is running behind, so she hurries to get Robyn to stand on the scale. With her back turned, she asks Robyn to stand on the scale. Robyn does not hear her. The nurse hurriedly turns and not seeing Robyn on the scale, she grasps Robyn by the hand to guide her to the scale. 

Robyn starts to cling to her mom and begins to cry. The nurse turns to Robyn’s mom and asks why her daughter is acting like this, as she only needs to take her weight. Robyn’s mom explains to the nurse that Robyn has sensory impairments. The nurse feels dismayed at the way that she approached Robyn and upset that she didn’t take the time to review Robyn’s chart before calling her into the exam room. 

The nurse gets down on Robyn’s level, she smiles and looks at Robyn and leans close to her ear and says clearly and loudly, “I am sorry, Robyn, I only wanted to get you to stand on the scale.”  

The nurse turns and points to the scale and gets up and herself stands on the scale to demonstrate. Understanding what the nurse wants, Robyn leads her mom over to the scale and stands on it herself. 

The nurse can get her weight. When Robyn steps back, with her mom’s guidance, the nurse again gets down to Robyn’s level and holds out her hand for a high five which Robyn gives her. The nurse leans close and says clearly and loudly, “Thank you.” Robyn nods her head shyly. 

With Robyn’s vital signs next, the nurse will be sure to let Robyn know clearly what each step will be and let her hold the thermometer, stethoscope, and blood pressure cuff and make sure she clearly understands instead of hurriedly trying to rush the visit which would only upset Robyn and her mom. 

The Caregiver (An Extension of the Special Needs Child) 

When caring for special needs children, a component that is just important as caring for the child is caring for that child’s caregiver/parent. In pediatrics, parents or primary caregivers are often very much involved in the care of their child. They take on a lot of varied emotions and stress when dealing with the health and well-being of their child.  

From learning about the child’s diagnoses, learning medical terms, hospitalizations, absences from jobs, financial stress, relationship issues, and sleepless nights, caregiving can take a toll. All of these things can lead to caregiver role strain or caregiver burnout. Caregiver burnout is mental, emotional, and physical exhaustion that may develop through the responsibilities of caring for another individual. The healthcare team needs to be supportive of families and caregivers (1,2,30). 

Healthcare professionals can support caregivers by assisting them in finding local support groups or even online support groups to join. Listen actively and encourage them to ask questions and voice concerns. Help them find resources that may help financially, including grants and foundations that provide to families in need. If the child is inpatient, stay by the bedside and encourage the family to go get something to eat or take a walk. Enlist the help of other medical professionals that may be of assistance including social workers and primary care providers as well as specialists to help with letters of medical necessity for things like equipment, therapies, and home care. Ask the family if any other family member may be taught or is proficient in the care of the child while at home, to help the primary caregivers with respite as needed. Be understanding and respectful as well as empathetic to these families and their special needs (1,2,30). 

Special Needs Caregiver Case Study 

Devon is a 10-year-old in the hospital for respiratory distress and influenza infection. His mom and dad are at the bedside 24/7. He is stable, but has CP, is non-ambulatory, and is non-verbal. His parents are worried that he will need something that the medical staff will not be able to recognize when he feels better, such as watching his favorite TV show or playing with his favorite stuffed bear. 

They refuse to rest and don’t often leave the room for snacks or food. They are up day and night, usually pacing and worried. The general nursing staff are proficient with care, but are quick to enter and exit, as they are afraid that Devon’s parents will ask too many questions. They want to know about his respiratory status and medications continually, and the floor is so busy. 

One of the nurses takes the time to talk to Devon’s parents, listening to their concerns and answering medical questions accurately. The nurse promises to find out answers to the questions the parents have. The nurse offers to sit with Devon while the parents get some lunch. The parents initially decline, but the nurse stays for 20 minutes. Both parents quickly go to the snack shop and return within 20 minutes looking a bit refreshed. The nurse also suggests the parents take turns resting. 

There is a free facility for the parents of hospitalized children nearby, and they have a vacancy. The nurse will reserve a room for them, and they can take turns sleeping, away from the hustle and bustle of the busy hospital floor. Devon’s mom reaches out and gives the nurse a big hug and thanks her for caring for them as a family. 

Conclusion

In this course, strategies and techniques used to facilitate nursing and medical care related to the needs of medically complex children were presented. This population of patients is extremely rewarding to care for, but they need complex care that may challenge healthcare staff daily. Variations in pain, emotional expression, verbal ability, physical dissimilarities, and potential cognitive or behavioral deficits, coupled with potentially anxious or knowledge–impaired caregivers, are just a few of the factors that these very special patients may possess. Having an improved knowledge base regarding these special types of patients will improve healthcare’s ability to provide the best care. 

➁ Complete Survey

Give us your thoughts and feedback

➂ Click Complete

To receive your certificate