Chapter 16 Children with Special Needs
What Are “Special Needs”?
In 2004, 12.8% of children younger than 18 years were found to have special healthcare needs, and 20% of households with children reported having a child with special needs. According to the U.S. Maternal and Child Health Bureau, these are children “who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Although some of the care these children require will be provided by pediatric subspecialists, many of their needs can be met most effectively by general pediatricians in a medical home, which is a primary care setting that is accessible, continuous, comprehensive, centered on the family, coordinated, compassionate, and culturally effective.
How Should I Approach a Child with Special Needs?
The challenges of interpersonal relationships with a child who has special needs are much like the challenges of interacting with children in general but often are intensified by the child’s more complex health condition. You may find that a child’s disability evokes strong emotions, just as you may find that caring for any sick child evokes thoughts, feelings, and fears surrounding your own childhood or your own children. The doctor’s office is one place that the child should feel comfortable and valued. Avoid hurtful labels such as “handicapped” or “abnormal” to describe the child. Sometimes medical students and other care providers experience sadness, uneasiness, or frank anxiety as they approach these situations. These are expected reactions to suffering and it is important to acknowledge them and the experiences that led to them. Discuss your discomfort with your preceptor. As your experience grows you will find strategies to prevent these feelings from interfering with patient care or causing bias in your decisions and interactions with parents and children.
How Can I Establish Credibility?
Credibility begins by demonstrating both genuine respect for the parent and child and the desire to help with the child’s health care. Understanding and acknowledging that the parents are important members of the child’s healthcare team also enhances your credibility. Parents whose children have chronic medical conditions usually have learned a great deal about the conditions. They will appreciate and respect your openness to learn from them.
What Can I Do to Develop Rapport with Parents?
Call parents by their surnames, not “mom” or “dad.” Assume that parents take their parenting responsibilities seriously and may be more concerned about their child’s illness than a similar illness in themselves. Acknowledge and validate parents’ concerns, fears, and pride: “You must have been concerned when he woke up coughing so often last night.” “Sometimes nosebleeds are pretty frightening because there seems to be so much blood.” “What a beautiful baby boy.”
How Do I Provide Guidance for Parents?
Start by first asking an open-ended question that gives the parents an opportunity to describe their approach to parenting and the care of their child’s special healthcare needs. Then, make a few suggestions or points of information based on the knowledge that you have gained from your reading. It is most helpful if these suggestions build on the parents’ approach. Provide as much information about the well-child visit or the child’s illness as you can. Handouts, Web sites, and peer support groups are all welcomed by parents. If parents ask a question for which you do not know the answer, admit you do not know and ask them what they think. You can help establish trust and rapport by letting the family know that you will look into the issue and discuss it with the staff. Ask about the health of parents and other members of the family. Also ask if any other family member has a chronic illness or disability. Parents appreciate your understanding the impact of a child with special needs on the whole family. Ask if parents are using any alternative medicine or home remedies to treat the child. If you are unfamiliar with the family’s culture, ask parents to explain what would be done typically in their tradition to treat the child (Box 16-1). React with respect to any information.
BOX 16-1 CROSS-CULTURAL COMMUNICATION
♦ Learn about the cultural diversity in the population of your community.
♦ Read about the health practices and health beliefs you may encounter.
♦ Ask the child or parent to explain some aspects of their health beliefs that may be important in the child’s care. (“I’d like to better understand your thoughts on how your child became ill. Can you help me understand?”)
♦ Avoid asking “why” questions, which may be perceived as attacking or accusing, create defensiveness, and risk shutting off communication.
♦ If an interpreter is needed, try to use a professional medical interpreter rather than a family member. Interpreters may be available by telephone if not available in person.
♦ Convey respect for the health practices and beliefs of various cultures, even when they are very different from the ones with which you are familiar.
How Should I Approach a Well-Child Visit for a Child with Special Needs?
Well-child visits and school physical examinations are part of health supervision (see Chapter 11) for all children, including those with special needs. You must pay attention to all of the typical questions that emerge as children grow and learn, but you will need to focus on the child’s special needs, developmental age, and family situation. The Bright Futures Web site provides a format for health supervision, including history, examination, anticipatory guidance, developmental surveillance, nutrition, oral health, and immunizations.
How Can I Communicate with a Child with Special Needs?
Always talk directly to a child with special needs. Use his or her first name, and use language appropriate for the age level (see Chapter 4). Touch, and if appropriate, hold the child. A child with special needs is a child who is usually aware of being “different” because of the chronic illness or disability. Ask parents to explain what they think you should know about the condition and its effects on their child as a unique individual. Ask parents what they think is going on and what has worked to treat their child in the past. Be aware that a child with a disability may not exhibit the same signs of an acute illness as does a child without a disability. Even the most diligent parent can miss subtle or confusing signals about an ailment. A parent may even visit the clinic to talk with you in an effort to understand confusing signals and determine whether the child has an illness needing medical attention. Ask parents if they are receiving the support and information they need. Consult with your preceptor to suggest Internet sites, national or local associations, and books.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
