Improving communication between healthcare professionals and children with developmental disabilities

HANNAH KUPER: Children and their families are empowered when they’re able to communicate, being able to say what they want and what they don’t want, how they want things to be done, and importantly, what makes them happy or sad. The United Nations Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities recognises the importance of communication and the right of all children to be listened to and to have their voice heard. Good communication will have a positive impact on a child’s healthcare experience. And effective communication can increase diagnostic accuracy and improve patient understanding, acceptance, and compliance with treatment. Communication is also central to the principles of equal partnership and trust.

Good communication will provide children with developmental disabilities the opportunity for self-determination and self-efficacy, which can have a positive effect on their ongoing health. Without appropriate effective communication, children and parents will find it difficult to understand the choices on offer, engage in the decision-making process, and accept and carry out the suggestions of healthcare professionals. For instance, it is common that after screening in a community setting, many children referred to a hospital for specialist assessment do not attend the follow-up appointment due to a variety of factors, but often linked to inadequate communication to the child and parents of the problem, the need for further assessment, and how to access this assessment.

For many children with a developmental disability, communication can be somewhat of a challenge. And indeed parents often report their concern about leaving a child alone with a healthcare professional, as they are worried about the difficulties in communication. Some children with developmental disabilities experience communication difficulties as a result of their condition or impairment. For example, a child with an intellectual impairment may find it difficult to understand the meaning of a sentence. And a child with reduced hearing capacity may not be able to understand the information if only given through spoken word.

In some children, the severity of their condition can result in a specific speech and language disorder, making it difficult for them to speak clearly and understand words, whether spoken or written. Communication impairments and difficulties can make it challenging for children and healthcare professionals to interact in a meaningful way. These difficulties can be exacerbated if healthcare professionals are not sensitised to good communication practices. For instance, if a healthcare professional were to speak too fast, too quickly, or simply rush a consultation. When a child does not respond to a healthcare professional’s question or instruction, there is the danger that the professional will believe that the child is unintelligent or disobedient, which can result in a negative attitude to the child.

Care, patience, and understanding from the healthcare professional are needed to avoid such a situation. There are many children with developmental disabilities that feel they are excluded from discussions about their health as communication is taking place between the healthcare professional and their parent. This can cause frustration, anxiety, and may make a child feel undervalued. Adopting three-way communication can pave the way to effective communication and a trusting relationship. In three-way communication, professionals speak to the child first and have parents help facilitate this communication. Think of this communication as a triangle with a child at the top. The professional and the parents need to always look to the child as the focus of the communication.

With a parent not speaking on behalf of the child, three-way communication gives the child value and involvement in their decision-making process. The severity of a child’s impairment may limit the extent of this communication. But it is important for a healthcare professional to speak first to a child before seeking communication with a parent. Earlier in the week, we discussed the concept of reasonable adjustments for improving healthcare access, and this is the same premise when trying to improve communication. By making simple adjustments to existing routines healthcare professionals can greatly improve their communication and relationship with a child and their family. Examples of good practice would include learning about a child and their communication preference.

Is this sign language, lip reading, or perhaps through pictures and communication boards? Make sure to build rapport and trust before diving into an assessment. This may involve allocating more time to the appointment. Professionals can start by asking a child about their friends or hobbies in order to break the ice and start the relationship. Keep language simple and to the point. Avoid using technical terms that may confuse a child or their parents. It is best to ensure that a child and their parents have understood what is being said. It is often useful to have them repeat back what they’ve been told without being patronising or judgmental. Use language that is respectful and consistent.

Be sure to listen to a child and their parents and respect their opinion. The healthcare relationship is a partnership. Above all, be positive. But do not create false hope, as this can ultimately break trust. Finally, let’s think a little about communication aids, which we discussed briefly earlier in the week when thinking about assistive technology. If a child has severe speech and language impairments, there are various communication techniques available. These may be unaided, in that they use no device or tool. This can include sign language, facial expressions, such as smiles and frowns, and body language, for example, a thumbs up or by acting out scenarios. Aided communication may make use of technology to facilitate the process.

This may include Braille for children with visual impairment. Or it simply involved drawing or writing with a pen and paper. Pointing to pictures, words, or letters can help explain complex terms in a simple way. As we saw earlier in the week when looking at the project in Nepal, aided communication can involve using puppets, dolls, and picture-based to help young people with intellectual impairments and communication difficulties. The use of additional and alternative communication techniques such as these will depend on the child’s needs, their preferences, and the resources available to you. For more information on effective communication, take a look at Plan International’s report in the ‘See Also’ section at the bottom of this page.

Here you will find some specific suggestions for communication with children with different impairments.