The International Classification of Functioning, Disability, and Health (ICF): There is Always More Than a Single Story*
Why is the Topic Important?
Each time you bring your child to a medical appointment, you probably are asked to tell your child’s “history” – what concerns you have about your child, how she has developed, any medical conditions she has had, other professionals you have seen, or tests you have had done – just to name a few examples. Doctors ask you for this information because it is the first step to making a diagnosis. Diagnoses can help to find the right treatment and services for your child. Sometimes, a diagnosis might be helpful to plan ahead for the future. Nonetheless, sometimes information unique to your child can be missed during this conversation.
When “taking a history,” clinicians focus on pieces of information that help them to understand what is going on. Putting many pieces together can help to make a diagnosis. One of the challenges for clinicians is to find the balance between collecting all the right pieces of information to make a diagnosis while still paying attention to the unique stories of individual patients’ daily lives. Good patient care takes them both into account.
In 2001, the World Health Organization (WHO) came up with a way to describe the individual stories of patients that balances the diagnosis and the information that makes each child unique. It is called the International Classification of Functioning, Disability and Health, or “ICF”. The ICF helps clinicians and families think about a broader and fuller picture of both the specific health information and the life situation of a patient.
The ICF is organized into different areas called:
- Body Functions and Body Structures
- Activities and Participation
- Contextual Factors
Body Functions and Body Structures
Body Functions and Body Structures describes the type of information you often talk about when going to the doctor including all the parts of the body and if they work properly or not.
Activities and Participation
Activities and Participation refers to what people do in life. This can be leisure, play, school, or work. It also includes very specific activities such as moving around, communicating and learning, taking care of yourself, or interacting with other people.
Contextual Factors refer to information about the world around you such as your friends, family, doctors, teachers, and where you live. This is important information because the people and places and things in your life can be barriers that make it hard to do what you want to do (for example, a classroom can be inaccessible because of stairs or because of limited funding for EAs from the school board) or they can help you do the things you want (such as having access to a tablet for communication or a support worker that enables your child to go to camp).
Using elements from all the areas described above it is possible to come up with a description of the person and her surroundings that is called a “functional profile”.
So how can using the ICF be helpful to you, your child, and your family? We think there are many reasons. Let us tell you a little about some of them.
Reason 1: Figuring out what’s important:
One of the biggest challenges is being able to figure out what are the most important issues for a child or family. You might have experienced a situation where the things that were the highest priority for you were talked about at the end of an appointment (for example, concerns about your child’s anxiety wearing braces in front of other kids as opposed to only how they will control ankle spasticity). Sometimes, the clinician can guess what this might be just by knowing the diagnosis. Children who have chronic health conditions and disabilities have many levels of complex needs . The ICF can capture what those complex needs are and support families in the decision-making process by making everyone aware of what’s important to them. Decisions are better informed and consensual when everyone is looking together at the available resources and treatment options .
For example, let’s say Andy was diagnosed with attention problems. His parents probably want to talk about whether he should take medications and what the pros and cons of that will be to his health, his school performance or his life. However, many problems in daily life can arise for reasons not directly related to your child’s diagnosis (i.e., “Body Structures and Body Functions”). In Andy’s situation, his parents might also be concerned about whether he should switch out of his school or his class.
Maybe there are many kids in his class and that makes it hard to get the teaching help he needs or maybe his parents worry that taking French immersion will be too confusing when he is dealing with attention problems.
Attention problems look similar from child to child but Andy’s parents, teacher, class and school are unique to him. The ICF can help both the doctor and family to pay attention to the diagnosis and organize the information that is just as important to your child so that everyone gets the “complete picture”.
Reason 2: Making decisions about treatment:
To make a decision about a specific treatment, it is necessary to understand if the treatment will “work”. Scientific studies are helpful in this regard. It is even more important to know if a treatment makes sense for each individual patient. This depends on their life situation and their individual goals for treatment. By looking at the functioning of a person as described by the ICF, it is possible to develop more individualized solutions. It allows comparing risks and benefits of different available options. The decision will not only be based on “body functions and structures” (for example how Andy’s brain focuses) but also on their activities and participation in life (is it a priority for Andy or his parents for him to learn French?) and in which place this will happen (what is more important, being around his friends in his current class or giving him a chance to do better in school in a smaller class?). When the doctor and Andy’s parents think of things this way, all of a sudden the decision to take medication or not is based on other things than just how his brain will respond.
Reason 3: Empowering patients and families to make decisions together:
Empowerment – or feeling good about the decisions you make for your child and your family – is a very important part of health care. Empowerment means the patient and family are in control of decisions. For example, when Andy’ family is concerned about his friendships and confidence at school, the ICF grants legitimacy to these issues as real health concerns. By understanding how health conditions and other life factors interact, children and their families can voice their needs for support with confidence.
There was always the intention that the ICF would be used as a common language to unite professionals from different health disciplines and it has been effective on that front. More importantly, it was intended to unite service providers with people with disabilities by giving them the tools to communicate their needs to professionals. Now you know the ICF terms and language; use them to articulate your needs. Bring the framework to your appointments and show your doctor or therapist the connections that help you and your child feel healthy or stand in the way of your goals.
Reason 4: The power of being many:
When patients and their families are empowered, whole communities feel empowered. And empowered communities are able to identify relevant actions and policy needs to improve health for everyone. Collecting information helps clinicians to understand what factors are most important in predicting your health over the short and the long-term. Health information can help policy makers plan to allocate resources to the families who need it the most at the right time. The ICF has a very important role to play in this regard. Here’s how.
Traditionally, health-related information is collected based on diagnoses. An example would be, “how many people live with diabetes?” or “how many children have been diagnosed with ADHD?” Unfortunately, that isn’t enough information to ‘give a complete picture’ of all those areas of health that matter. Using the ICF can, for example, inform service providers and policy makers about the activities and roles that can be compromised when children have ADHD. Using the ICF will help us pay attention to what types of information to collect so we can learn the true effects of the impact of ADHD on your child’s health.
Greater patient involvement and engagement is key for such an approach to be successful. If clinicians start to use the ICF, and patients expect that their stories will be heard, eventually we will obtain a better collection of what matters to patients – one that doesn’t just have a catalogue of diagnoses but one that also includes a full range of people’s functional profiles across different groups of people from your city, your country and our world . This way of looking at health hopefully will lead to a more individualized care, so that children like Andy and his parents can receive all the supports they need and not just a prescription.
- We can all use the ICF to expand the way we think about children and talk to each other.
- Children and families: when making your priority list for your next appointment, think about what concerns you have that are related to your child’s body, what your child likes to do, where activities take place, and how the environment around you might support or hinder your child’s participation
- Clinicians and service providers: Don’t let families leave your office without addressing all the components of the ICF. Pretty soon, you’ll see connections where you didn’t before and discover new options to help your patients.
Institutions and advocacy groups: Consider the ICF as a framework to structure your strategic plans, vision statements, or to collect patient-centred health information.
Let’s use the ICF to help us weave all our stories together.
*Title inspired by a talk of Chimamanda Adichie