Developmental Care of the Child
This article from our Chief Clinical Officer, Susan Sender, offers an overview of the developmental stages all children pass through and how a medically fragile child can be helped to still attain these stages.
Many children receiving home care have alterations in growth and development secondary to the medical diagnosis and/or long periods of hospitalization. The home care professional will incorporate developmental stimulation into the plan of care. This includes "normalizing" the home environment as much as possible to allow for sensory input, alternating periods of activity and rest, and using a multi-sensory approach in providing experiences appropriate to the developmental age of the child.
Both the parents and the home care professional must have a basic understanding of theories of cognitive and psychosocial development. The family should take a developmental approach to the provision of care and teaching to promote successful interaction with the child and family.
Stages of Development
Infant (0-1 years)
This is the period in which trust develops. The infant develops trust in response to having the needs met. Experience is gained through the basic senses. Oral motor experience, i.e., sucking is essential to the development of trust (having feeding/comfort needs met) and is the precursor of speech. Motor development proceeds in an orderly fashion from the head down and from the trunk outwards. For example:
- Holds his/her head up
- Sits and reaches (trunk and extremities)
- Walks at the end of first year or the beginning of the second year
- Eye-hand coordination begins
As the infant develops a sense of object permanence around the eighth month the child will miss Mom and may develop stranger anxiety. The infant is egocentric - sees herself as the cause of all events.
Toddler (1-3 years)
The toddler continues to receive gratification orally and enlarges his activities to learning through exploration of his environment. Motor development at this stage involves walking, climbing, and then running (which allows for exploration). The child begins to act on the environment and to develop a sense of himself as an individual. This is the age of toilet training, withholding and pushing away, self-control, and the beginning of autonomy. Language development allows the child to express thought processes such as imagination and socialization. As the child begins to develop independence his behavior can be oppositional.
Pre-School (4-6 years)
The preschooler continues to master new skills as motor, cognitive, and language abilities increase. The preschooler has a vivid fantasy life. If she has learned trust and self-control she is now able to begin to develop a sense of self. The ego develops. She begins to develop a conscience. An important task of this stage is to develop the initiative to learn, to assert and to plan, but to avoid guilt by being a "good girl." Her thinking is still magical. Conclusions are based on feelings or what she would like to believe. The preschooler has a high energy level and loves to try new things.
School Age (7-11 years)
The school age child's self esteem develops in response to feeling he can learn and solve problems. This age enjoys mastering new tasks. Thinking becomes less magical and more logical. The school age child has an appreciation of rules and likes ritual (e.g., Boy/Girl Scouts). Increasing social interaction teaches the child how words can replace violence and that there is a different way of doing and thinking of things. Interest moves from the family to the larger world. The peer group becomes very important, this is the "gang age" where friends are made and games are played according to rules. The child takes over all self care (body management) during these years. Feelings of inferiority can develop if mastery of these tasks does not happen.
Adolescence (12-18 years)
The adolescent develops the ability to organize information and to reason more effectively. He can rationalize and intellectualize events. He seeks independence but is ambivalent and will employ strategies to maintain dependence, while angrily demanding independence. The adolescent is egocentric and believes in his own unlimited powers, he may engage in risky behavior. Rebellion against authority is a frustrating but common activity of this age group. Ties to the family loosen and peers become all important. Cliques are formed and friendships (some lasting a lifetime) develop. There is an extreme concern with body image, changes and sexuality. These years are important for finding a clear sense of self (identity) where the teen develops confidence and stability as an individual with unique value recognized by others as well as himself.
Impact of Illness and Disability on Development
The child with a chronic illness or disability is often limited in her learning by a lack of sensory input. Sensory input can be affected by a visual or hearing impairment, the lack of motor experience because of mobility impairments, or the inability to integrate or to utilize experience due to a cognitive or language delay. Sensory input is also limited because of the required interventions such as limits on activity required by a ventilator, lack of oral motor input because of necessary nutritional support such as gastrostomy tubes or TPN, or the necessity of an immune suppressed child.
An example would be a preschooler in a wheelchair who must be tube fed and who has not developed language skills. This child cannot learn from motor experience and exploration because of her mobility impairment. Her language development may be compromised because of lack of oral motor input acquired through the feeding process.
Decreased mastery of age appropriate tasks due to limitations imposed by either the child's condition, or treatment, can compromise the development of positive self-esteem, peer relationships, and independence.
This same child has not been able to master the age-appropriate motor tasks of crawling, sitting, walking and running. She cannot participate in many forms of play. She is not able to interact verbally to express her fears and fantasies. Her normal need for development of control and autonomy is frustrated by her mobility limitations. Her communication is limited by her lack of oral speech.
Fatigue prevents exploration of the environment, and in the older child, participation in age-appropriate activities.
The infant with a severe heart defect needs all his energy (calories) to breathe and to grow. Little is left over for motor development or exploration. The baby is often too tired to respond to familiar caretakers. The school age child or adolescent with a severe cardiac impairment must be protected from illness, and is not able to participate in most of the socializing and learning experience of growing up.
Dependency is a part of infancy. The growing need for independence is obvious in the oppositional behavior of the toddler, the initiative of the preschooler, the gang activities of the school age child, and the rebellion of the adolescent.
A child who is dependent for life support on a ventilator and alternative feeding is dependent on others for his very survival. Opportunities for independence and mastery are very limited.
The family must make decisions and choices that are best for its members. This is central to the concept of family-centered care. Any plan to support and promote the development of a child with an illness or disability should be created with the family's input. The first step in designing a plan would be a careful assessment involving both the child and the family. The development of a plan (or approach) must reflect reality, the child and family's priorities, as well as their perspective.
Encourage tactile, verbal, visual, and auditory input. Be careful not to over stimulate the baby. Examples would be:
- Holding for feedings
- Face-to-face looking
- Gentle talk
- Supporting the parent's efforts to interact and appropriate play
- Encourage changes of position
- Develop a routine
- Limit caregivers
- Encourage mother-infant bonding
- Manage pain appropriately
- Provide comfort measures after unpleasant procedures
- Enhance oral-motor experience by encouraging non-nutritive sucking (pacifier)
Arrange equipment to facilitate mobility and exploration (e.g., use portable equipment when possible) and provide appropriate alternative activities such as play dough or story time. Encourage competence in developmental skills such as self-feeding or toileting whenever possible, giving the toddler as much control as possible. Do not give a choice when there isn't one. Provide simple explanations in a variety of ways (e.g., talking, pictures etc.) and repeat often. If the child is not able to express himself verbally (i.e., child with a tracheostomy, on a ventilator, with oral motor impairments), introduce and encourage alternate forms of communication.
Explain all procedures and events using stuffed animals or dolls when feasible. Allow child to work out fears and fantasies through play (Get a toy doctor's kit.). Accept the child's imaginative stories and explanations. Use praise liberally, but only when appropriate. Provide opportunities for the child to assist (e.g., opening and arranging supplies). Provide for mobility (e.g., portable ventilator), exploring and learning.
Try to normalize experiences. Send the child to school whenever feasible (Special education laws provide for this). Help the family explore recreational and other community activities, and give the child chores (be creative). Provide for peer interaction, encourage a birthday party, and invite other children to the home. Maintain age appropriate expectations for behavior. Promote independence by having child carry emergency supplies and identification. Teach the child about his condition and equipment. Talk to the child about others' reactions and refer for emotional support if indicated. Offer to provide training about the condition to schoolmates.
Provide honest information and treat the adolescent in an age appropriate manner, no matter how disabled. Involve the adolescent in care; provide as much independence and privacy with self-care as possible. Accept rebellion where safe, negotiate when it is not. Help normalize appearance, e.g., tubing under clothing, and support peer appropriate fashions. Provide sexual information and give information about the sexual implications of condition or disability, if appropriate and does not conflict with family values.
Play is important for learning, for growth, and for fun. Activities should be appropriate for the child's chronological age but adapted for her developmental age. For example, a one-year-old likes to imitate adult tasks. A toy broom would be appropriate for the one year old and an adult broom for the developmentally delayed teen.
Children's beliefs about illness affect their health behavior. Chronically ill children need health education but it must be presented in a developmentally appropriate way. The preschool child learns by contact and experience - use dolls and stuffed animals to explain procedures. The school age child learns from direct instruction but needs clear concrete information. The adolescent is able to deal with abstract concepts such as health, handicap, etc. and needs an opportunity to explore meaning.
In this Developmental Care of the Child article, you have acquired a basic understanding of the theories of cognitive and psychosocial development, learned the stages of development and the impact of illness and disability on development, as well as learning intervention to support and promote the development of the pediatric client.