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In this course, we will discuss strategies and techniques used to facilitate nursing and medical care in special needs children and children with developmental delays. This population of patients is extremely rewarding to care for, but they also have complexity that challenges medical staff on a daily basis. Variations in pain expression, verbal ability, physical dissimilarities, and cognitive deficits coupled with potentially anxious or knowledge impaired caregivers are just some of the things that these patients may present with. Having an improved knowledge base regarding these special types of patients will improve health care’s ability to provide the best care. In this course we will discuss strategies used to overcome these barrier and provide high quality care to special needs children, and those with developmental delays. 

Background on Pediatrics with Developmental Delays

Pennhurst State School, located in Spring City, PA, opened its doors in 1908 and ultimately closed them in 1987. It was originally known as the ​Eastern Pennsylvania Institution for the Feeble Minded and Epileptic ​with a capacity of 500 patients. Within the brochure, different care areas as well as staff and programs are displayed. Typically, the children 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.

Viewing a 1954 brochure of the school, it is described as “a large 1400 acre, at present 3550 bed state-owned and state supported institution devoted to the study, care, treatment, education and vocational training of mentally retarded or defective boys and girls whose parents are legal residents of the eastern half of the Commonwealth of Pennsylvania” (1).

It rapidly became overcrowded within the first several years of opening and patients suffered terrible abuse, including being tied to beds, medical experimentation, being drugged/sedated, psychological abuse and being beaten and raped.

For example, if a patient bit others, the staff would often remove all of that person’s teeth; this happened so frequently that even years after the asylum closed, visitors would continue to find teeth in the tunnels (2). It became a horrific asylum for those contained within its walls.

This started to change when NBC Channel 10’s Bill Baldini exposed the shocking truth inside of Pennhurst and what was happening in 1968, in a TV documentary called “Suffer the Little Children”. It ultimately took almost 20 years to close Pennhurst down, but finally in 1987, its doors permanently closed. This became a major stepping stone in advocacy for those with special needs.

Overview

There are four main types of special needs in children: physical disabilities, developmental delays, dysfunctional behavioral/emotional regulation, and sensory impairment. Patients may have a single type of disability or a combination of several, and each patient requires a unique and personalized treatment plan to achieve the best possible outcomes for quality of life as well as physical health. 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.

Several common diagnoses you may see in pediatric practice in relation to these categories, varying from mild to severe, include autism, cerebral palsy, oppositional defiant disorder as well as those with hearing or visual impairments. Each of these will be discussed in further detail below.

Autism

Autism Spectrum Disorder (ASD) is a common and lifelong developmental disability affecting about 1 in 59 children, with boys being four times more likely than girls (4). It is difficult to recognize ASD in early years, until signs of developmental delays start showing.  According to the CDC, the majority of children are not diagnosed until age four (5).

Signs of autism in a child may include the child having trouble interacting or relating or playing with others, brief to no eye contact with others, unusual or repetitive movements (tapping, spinning, hand flapping), milestone developmental delays or loss of previously achieved milestones, difficulties in school with learning, playing with toys in an odd or repetitive behavior, and/or low muscle tone, clumsiness, and poor spatial awareness (6).

Children with autism may prefer solitude and may not be able to empathize. They could have some or several cognitive or developmental delays.  They may not do well with schedule changes or new environments. Intelligence levels vary within this diagnosis, 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 that 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.

Care of Patients with ASD

Recognizing a child with autism may not be easy. Some children are easier to identify, especially if they have repetitive movements or other prominent behaviors synonymous with autism. Just because a child has developmental delays, does not necessarily mean they are on the spectrum.  Other children may be on the mild end of the spectrum and may have a much less pronounced presentation.

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 as similar from one environment to the next.

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 autism often benefit from knowledgeable and well-trained healthcare providers who understand their difficulty coping with developmental delays, navigating social situations and communication in general. To develop a trusting rapport with a patient who has autism, healthcare professionals should attempt to see things as the child does, not have them try to make sense of what is “normal.” (7)

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 autism 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 health care setting may exhibit an increase in these behaviors due to the stress of a new environment or illness.

Autism Case Study

Alex is a 7-year-old patient in the hospital for pneumonia and is receiving IV antibiotics and breathing treatments routinely. He has developmental delays.  He also has autism. 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 health care provider to have some extra skills, patience and ingenuity. The staff work with Alex’s Dad who is 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 is able to find several textured balls that Alex loves.

Staff use his Dad’s reassurance and the different size and color therapy balls to help keep Alex distracted from his medical needs. They find that using toys he likes during neb treatments and when IV antibiotics are infusing are successful to complete 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

According to the CDC, Cerebral palsy (CP) is the most common motor disability in childhood and consists of a group of disorders affecting a child’s ability to move and maintain balance and posture. One in 323 children have been diagnosed with CP according to the CDC’s Autism and Developmental Monitoring Network. It is more common in boys than girls and more common in black children than white. About 75-85% of children with CP have spastic CP (muscles are stiff and thus with awkward movement); however, over half of children with CP can walk independently. As an interesting fact, many children who have CP also have a co-occurring condition; 4 in 10 children with CP also have epilepsy and 1:10 have autism. Most CP is a result of brain damage that happened either before or during birth (congenital CP). 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 (8).

CP may be termed in relation to the part of the brain affected and the resulting symptoms, such as spastic (stiff or spastic muscle, most common), athetoid (affects ability of the child to control their muscles and arms/legs may flutter or move suddenly) and ataxic (affects balance and coordination) (9).

Care of Patients with CP

A child with CP will need special care and getting to know each specific child with CP uniquely will help guide the health care worker’s ability to assimilate the care that they need. This is much different than other cases of developmental delays. Some children have mobility loss due to the effects CP has on the muscles, but have normal intelligence.

They 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/tone. Other children with CP may be more significantly affected with 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. Not all children with CP have cognitive disabilities. 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 health concerns.

It is important to focus on the child’s strengths and abilities and help each child reach his or her own 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 own care. This helps to promote empowerment and encourage growth.

Have the child assist in parts of any activity that they are able, for example, if they cannot stand, but are able to 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 safety able to.

Praise and encourage safe self-care. If a child is completely dependent upon others and is unable to move or verbalize, watch for verbal cues of discomfort including grimacing, moaning as well as increased respiratory rate 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. Talk to the child in a soothing manner or sing familiar songs to ease anxiety.

Nutritional needs are very important in CP. Feeding difficulties are common, which may hinder the child’s ability to consume food orally, resulting in poor intake, 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.

Cerebral Palsy Case Study

Brittany is 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 mechanical soft per her doctor’s orders. You note halfway through her meal, she seems to be struggling to swallow, with a wet sounding voice and cough.

As you glance as her dinner, she seems to be taking large spoonful’s and swallowing them without chewing. Assessing Brittany for signs of aspiration and supervision during all oral intake would be of utmost importance as well as following up with testing to assess her chewing/swallowing ability and thus determine if a pureed diet would be a safer alternative for her at this time.

Oppositional Defiant Disorder

Any child can be argumentative and strong willed at times, having a tantrum to get his or her way and then having an emotional meltdown when he or she doesn’t get what they want. This does not always indicate  a developmental delay or disability. Sometimes this can become more frequent or occur in patterns that indicate oppositional defiant disorder (ODD).

Signs of ODD generally start during preschool; signs may occur a bit later but is almost always before the teen years. The behaviors associated with ODD may cause significant impairment with family, social activities and school. It 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).

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).

The cause of ODD is uncertain but some contributing factors may be related to the environment and genetics (10). ODD is reported to affect 1-16% of the school aged population, and is more common in boys than in girls. (11)

Care of the Patient with ODD

ODD is not a familiar diagnosis to all healthcare personnel. Health care 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 the health care 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, so anticipating potential outcomes is essential when the child is healthy as well as ill.

Caring for the 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.

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, take a break to avoid overreacting. Celebrate successes when the child is able to 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 (12).

These children may need individual psychotherapy to help them manage their anger, family psychotherapy to help improve communication and mutual understanding, parent management training to help parents and others manage the child’s behavior, cognitive problem-solving skills training and therapy to decrease negativity, and social skills training to increase flexibility and improve social skills and frustration tolerance with peers (13).

Oppositional Defiant Disorder Case Study

Danny is a 12-year-old boy who presents 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 totally blind (14).

Loss of vision affects all areas of development including social development (may not 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 child who is visually impaired, it creates a learned helplessness in the child (15).

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 (16). 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 aides, cochlear implants, and special telephones are also common. Impaired ability to communicate with hearing children can social struggles for hearing impaired children and should be considered when caring for them.

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 in close proximity to 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 slow and carefully. 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 parent to see how to best communicate (sign language, lip reading, etc.). Have the child be as familiar with the healthcare environment as possible, letting them see, touch, and interact with as much of 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.

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 (signs/visual 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 (a sippy cup the child is used to, a familiar toy, etc.). 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, etc.).

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 (although 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 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 and the nurse feels dismay 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 is able to get her weight. When Robyn steps back, with her Mom’s guidance, the nurse again gets down on 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 Child with Developmental Delays)

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… 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 (17). The health care team needs to be supportive of families and caregivers.

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.

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 his bedside 24/7. He is stable but has CP and is non-ambulatory and non-verbal and his parents are worried that he will need something that the medical staff will not be able to recognize when he feels better (like to watch his favorite TV show or to play 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 as they want to know about his respiratory status and medications on a continual basis and the floor is so busy.

One of the nurse’s takes the time to talk to Devon’s parents, listening to their concerns and answering medical questions accurately, promising to find out answers to the questions that she is not certain of. She offers to sit with Devon while Mom and Dad get some lunch and they initially decline, but the nurse says she will stay and not leave. Mom and Dad quickly go to the snack shop and return within 20 minutes looking a bit refreshed. The nurse also suggests Mom and Dad take turns resting, one can stay awake while the other sleeps.

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 – Caring for Pediatrics with Developmental Delays

Caring for pediatrics with developmental delays can be challenging.  In this course, we discussed strategies and techniques used to facilitate nursing and medical care related to the needs of medically complex children. This population of patients are extremely rewarding to care for but they need complex care that may challenge healthcare staff on a daily basis. Variations in pain/emotional expression, developmental delays, verbal ability, physical dissimilarities, along with potential cognitive/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 and how to meet developmental delays will improve healthcare’s ability to provide the best care.

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