Activities of Daily Living in Cerebral Palsy

Introduction

Activities of Daily Living,also referred to as Self Care Skills, play a major role in a child's overall functional growth, confidence and independence. These essential skills include the child's ability to feed themselves using utensils appropriately and to perform toileting, bathing and grooming activities. Problems in this area may be due to an underlying problem, which may include impaired Sensory Integration or diminished Fine Motor or Upper Body Coordination. Children may also exhibit poor motor planning which affects their ability to sequence, time and grade motor activities.

We can break these down further into Personal Activities of Daily Living (ADL's), which are the "things we normally do every day"...such as feeding ourselves, bathing, dressing, grooming, work, homemaking, and leisure and Instrumental activities of daily living (IADLs) which are not always necessary for fundamental functioning, but assist an individual to live more independently in a community.

Activities of Daily Living (ADL's) Definition

The Activities of Daily Living refer to a series of basic or routine activities performed by individuals on a daily basis in order to take care of ourselves, and assist with independent living at home or in the community. There is not a fixed list of ADL's, as they depend on the age of the person, their intersts, the culture they live in, etc. When we talk about children, we usually refer to the basic activities of daily living which include feeding, eating, dressing, toileting, hygiene (bathing, oral hygiene, etc.) and moving around the house. There are many variations on the definition of ADL's but most organizations agree there are five basic categories.  

  • Personal Hygiene such bathing, grooming and oral care
  • Dressing including the ability to make appropriate clothing decisions
  • Eating, the ability to feed oneself although not necessarily prepare food
  • Maintaining Continence or the ability to use a restroom
  • Transferring oneself from seated to standing and get in and out of bed

Instrumental Activities of Daily Living (IADL's) Definition

From a certain age, we should also start to examine what we call “Instrumental Activities of Daily Living”, needed for a greater degree of independence, such as moving around in the community, handling money. IADLs, often referred to as life skills, are actions that are important to being able to live independently but are not necessarily required activities on a daily basis. The instrumental activities are more subtle and can help more finely determine the level of assistance required by individuals. IADLs include:

  • Basic Communication such as using a telephone
  • Transportation, either by driving, arranging rides or the ability to use public transportation
  • Meal Preparation and the ability to safely use kitchen equipment
  • Shopping and the ability to make appropriate food and clothing purchase decisions
  • Housework such as doing laundry and cleaning dishes
  • Managing Medications such as taking accurate dosages at appropriate times and managing re-fills
  • Managing Personal Finances, operating within a budget, writing checks and paying bills

Activities of Daily Living and Cerebral Palsy

When children are born, they depend on their caregivers for most of their ADL's, except for being able to suck from the nipple or bottle. Gradually but slowly, children become more independent. At a certain age, most children begin having the motivation to do things by themselves and enjoy the feeling of achievement. A big part of a caregiver’s role is to help the child to gain independence.

Being able to perform ADL's effectively and independently demand skills in multiple areas:

  • Gross Motor: e.g. in order to stay sitting or squatting while using the toilet, lift up a leg to put on trousers.
  • Fine Motor: e.g. in order to undo a zipper, hold a spoon and bringing it to the mouth without spilling food.
  • Visual
  • Cognitive
  • Sensorial
  • Communication Skills, etc.

Children with Cerebral Palsy who are affected in any of these areas may have difficulty in performing some or all ADL's e.g. impaired hand function, which affects 50% of children living with Cerebral Palsy, will have an impact on child’s performance in upper limb activities.

Knowledge of a child's Manual Ability Classification System (MACS) and Gross Motor Function Classification System (GMFCS) Levels can be useful when discussing expectations of, and goals for, the development of functional skills. We can predict that children classified as MACS I or II or GMFCS I or II will attain some independence in ADL's, although probably at a later age than typically developing children [1].

Some children will be able to become more or less independent with appropriate training and possible modifications to the environment or the activity, while others with severe impairments may always need consistent care. Even for children who will always need help, parents can be trained and supported to allow children to participate where they can in ADL's. ADL's are very important moments in the daily life of a child and caregivers should also be trained and encouraged to use these moments:

Help the Child Participate to the Best of their Ability / Potential

  • e.g. If the child can only use one arm, they should do as much as possible with that arm, even if the caregiver needs to finish the work afterward. The caregivers shouldn’t rush to do it for the child only because it’s quicker.

Try to Develop New Skills

  • Starting from the point where the child currently is, we can continue to work on new skills.

Engage in Communication / Cognitive / Play Activities with the Child

  • e.g. Today we are going to put on a sweater because it is chilly outside. Do you like it when it is chilly? Which color is this sweater? And my sweater, which color is it? Now show me your right arm so I can help you to put the sweater on.

Give the Child Options:

  • Do you prefer this sweater or this other one? Even if a child needs a lot of physical help, developing a sense of autonomy, being able to make decisions and make choices, feeling that they have some control over their lives, is crucial for well-being and psychological growth.

Create Bond between the Child and the Caregiver

  • Use ADL's to spend time looking at the child’s eyes, smiling, showing love and affection towards the child.

Activities of Daily Living = Therapy / Development Time

  • Caregivers should be shown how to utilize the time engaging in ADL's to incorporate development skills and activities that the child needs to work on. This way it will be more likely that caregivers will remember and will find the time to do them.

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Picture 1:Source: Getting to Know Cerebral Palsy: A Learning Resource for Facilitators, Parents and Caregivers and Persons with Cerebral Palsy. Hambisela Project.

Reflection on Picture 1:

What are your overall thoughts about the two different scenarios?

In the top set of pictures, the Mother is busy thinking about other things while bathing the child with little interaction with the child except for the direct action of bathing. Why do you think this happens, and what do you think the impact may be on the child?

Do you recognize this happening in your own work with children? It is often very easy when working with a child and caregiver to spend much of our time interacting with the caregiver and not communicating as actively with the child. Why do you think this happens and what can you do to change this.

Assessment and Goal Setting:

Many clinical tools have been developed to assess a child’s performance during ADL's and/or the underlying motor and cognitive abilities needed. Often, these assessments are standardized tools that require specific training in order to be implemented e.g. Assessment of Motor and Process Skills (AMPS).

The Canadian Occupational Performance Measure (COPM) is used to help children with cerebral palsy and their families identify the activities that are important for them to work on in therapy, including not only self-care but also participating in leisure and play or attending school. It is administered through a semi-structured interview where the child, or caregivers for younger children or those with intellectual disabilities, identify their priorities. The interview will be conducted at the beginning and then later on or at the end of the treatment to measure progress. Giving the opportunity to children and families to choose what their own goals is vital to child-centered, individualized care. The COPM is a standardized measure and the assessment forms plus an online training module can be purchased from their website.

Asking the child and the family about their priorities for treatment it is not exclusive of the COPM. The simpler Individual Assessment / Home Visit form proposed in “Getting to know Cerebral Palsy” may help us to register children’s and caregivers’ expectations and priorities.

Where there are no professionals competent to implement Standardized Assessment Tools, usually Occupational Therapists, for treatment purposes we can work with an inventory or checklist with all the potential activities. Direct observation in ecological settings, e.g. at the child’s home, should be prioritized, together with self-reporting for older children who are able to self-report and caregiver’s reporting for younger children and children who are unable to self-report and also to have an idea of parent’s perception of the child’s performance.

The ICF Framework (ICF) can be used as a guide for Functional Status Assessment and to establish goals. The advantage of the ICF is that we will be addressing the activity at different levels: “Body Structure and Function”, “Activity” and ”Participation”, providing a much more comprehensive intervention than if we only base our interventions at “Impairment” level as we have already addressed in our learning on the ICF and RPS with Individuals with Cerebral Palsy. 

Physiotherapy and ADL's

While an Occupational Therapist is the rehabilitation professional specialized in ADL's, in many cases a Physiotherapist will be the only professional the child has access to. Even if there is an Occupational Therapist also working with the child, ADL's should be of paramount importance for the Physiotherapist e.g. motor skills should be worked on in accordance with functional goals. 

Performance in ADL's depends greatly on the ability to sustain a posture and control the movement of the different segments of the body. Physiotherapists can help caregivers understand the child’s patterns of movement and posture to help find ways where function can be optimized e.g. in order to be able to use arms and hands in the most effective way, including being able to look at them, requires a good position of the head, shoulders and trunk should be attained, with support if needed.

Caring for a child with Cerebral Palsy can have a great impact on the quality of life and wellness of caregivers, particularly in relation to the physical strain of handling and positioning a child or an adult with poor posture and movement control on a daily basis [2]. Physiotherapists can help caregivers to understand better ways of handling their child while performing self-care routines, in ways that are safer and more comfortable for both the child and caregiver. They can also train caregivers on ways to protect their own physical health.

Using Daily Routine

Often parents do not have time to do all kind of extra activities with their child. The most effective way to work with the parents is to help them choose activities of daily life on which to focus and to choose those activities that are at that time the most important for them.

Some activities come back every day or even a few times a day. To focus on doing these activities in a proper way (good positioning) and in an active way (so the child is learning) will give many opportunities for the child to learn.

A Look At Personal Activities of Daily Living

It is important to teach the child personal activities of daily living such as washing, dressing, brushing hair etc. Here are some of the reasons why this is an important skill to work on:

  • Child gains some level of independence
  • Independence increases self-esteem and self-confidence
  • Independence helps to prepare for school and life in the community
  • Caregivers have opportunity for time for themselves
  • Child learns words and begins to associate them with the activities e.g. name of clothes, but also body parts and activities and words like in-out, under-above, colours, numbers.
  • Child learns to pay attention, organize a task and figure out how to do it
  • Child gets the opportunity to copy and imitate actions and words, to make choices and to indicate their likes and dislikes.
  • Child practices new physical skills by helping with and doing ADL's e.g. fine motor, gross motor, balance
  • ADL's provide stimulation of all senses: Vision, Hearing, Touch, Smell, Taste, Movement which assist with development
  • ADL's provide the best opportunity for the child to learn because these are activities which have to be done every day and all members of the family can be involved.
  • Some children will become self-reliant very fast, for others it will take a few years and others will never become independent but can make the role of the caregivers easier by being able to help with the activities in some part. For those where learning is a slow and long process break down the activities into smaller steps in order for you to see the progress the child is making! (Gain Attainment Scale)

Always remember that Communication is essential when learning new skills so that the child can associate what they are doing with the words that are used!

Bathing and Hygiene

As for every other DLA, we will find a great variety of situations: from severely disabled children who are completely dependent on others, to children who can progress towards independence with some degree or help or by adapting the environment or the task (for instance, creating a bathing seat for a child that is not able to stand on her own but that can use her arms effectively while sitting with proper support).

Some ideas here:

Bathing a child with Cerebral Palsy can be stressful: it may be difficult to handle a child that is stiff or has involuntary movements while being wet and on a slippery surface. It is important to prepare the environment in order to reduce risks and to make this activity as pleasant as possible. Privacy is also an important factor to think of, especially as children arrive at puberty.

Toilet Training

Many children with Cerebral Palsy can develop continence [3], although this often occurs later than in typically developing children. We recommend parents to start toilet training more or less as we would do for a typically developing child - when the child can go for a few hours without soiling or wetting themselves, and when they start to become aware that they have had “an accident” or expressing the need to go to the toilet. For children who do not speak, a sign can be used to indicate the need for the toilet. Toilet training a child is a worthy effort with many positive benefits for both the child’s social participation and the caregiver’s well-being.

A common problem for children with Cerebral Palsy is the lack of motor control to stay seated on the toilet. Different adaptations for toilet seats, as well as specially designed devices, exist for this purpose.

Sleeping

Some conditions associated with cerebral palsy may hinder sleep, such as:

  • Breathing or swallowing problems in children with floppy throat muscles
  • Seizures
  • Digestive problems such as reflux
  • Difficulties to change find a comfortable position and to change position as needed

As well as trying to find the most comfortable position, keeping the body aligned during the night’s sleep is an essential part of what is called 24 hours posture management.

Regarding sleeping positions, keeping the body properly aligned during the night is now considered an essential part of postural management.

Dressing

For all children, whether living with Cerebral Palsy or not, independence in dressing is a long process that begins at the age of approximately 12 months with the child co-operating with caregivers, such as lifting one arm to help putting shirt on, and progresses until they master more complicated parts such as lacing up shoes. 

As a general rule, children with Cerebral Palsy should be encouraged to do as much as they can on their own. For example, a child with Hemiplegia may be able to take off clothes and shoes easily but may need a little help to put clothes on, remember to put clothes on the affected side first.

Handling a child that is very spastic or stiff is a common problem in dressing. The physiotherapist should advise the caregivers on how to handle the child in a way that best promotes muscle relaxation and control. Please remember that even if there are general principles to follow, every child is different and some trial will be needed. Having the child lying on his tummy on the caregiver’s lap will make it easier than with the child lying on the back, which elicits extension in head and shoulders and flexion in the arms, but this will not always be possible for an older child. If lying on the back is the only option, a pillow underneath the head may help to counteract this extensor thrust. Side-lying may be a good alternative, having the child lying on one side and then the other. 

Using loose or elastic clothes with large opening for the head may also facilitate these tasks. Please refer to:

Eating and Drinking

Eating and drinking must be done daily a few times. For most children with cerebral palsy it is not challenging, but for a few children this can be a very difficult time. It can be difficult because of the way they are being fed or because they do not like it and have difficulty eating. For parents, it can be a difficult time as it can take a long time to feed a child one proper meal.

Eating and drinking adequately is important to prevent abnormal development of eating and drinking habits, which can become worse if we do not do anything it is also an important preparation for learning to speak.

Development of Feeding Skills According to Age

Milestones for feeding development:

  • Newborn: locates nipples as soon as it touches lips and sucks well.
  • 6-7 months: begins to chew soft solid food and begins to drink from cup
  • 1 year: begins to hold and use spoon and holds cup; can bite pieces from biscuits; tongue moves from side to side when chewing
  • 2 years: drinks from cup; eats and chews very well
  • 3 years: eats independently

Difficulties Eating and Drinking in Cerebral Palsy

Depending on the age of the child difficulties can include:

  • Sucking the mother's breast
  • Eating from a spoon
  • Chewing and/or swallowing
  • Closing mouth and lips
  • Drinking from a cup
  • Drooling
  • Holding objects and taking them to the mouth
  • Biting
  • Hand mouth coordination

Activities to Assist with Eating and Drinking

Here are some things to consider to aid with the eating and drinking process:

  • The body and the head of the child should be in the right position.
  • When feeding the child: maybe sit in front of him or on the side of the child which relaxes him/her most. 
  • If you put pieces of food (e.g. biscuit) in the mouth of the child: put it at the side of her mouth and not on the tongue. Change side after each piece.
  • When feeding with a spoon: push the spoon downwards on the middle of the tongue and wait till the child closes the mouth and takes the food from the spoon. If the child needs help with this: put a little pressure upwards under the chin (jaw control). Take the spoon out in a straight line.
  • If the child cannot close the mouth when drinking help the child
  • Use a straw, which can be easier for the child
  • Cut out a piece of the cup (because of the nose), so the child does not need to tilt the head backward.
Feeding position 1.jpg
Cup Cp.jpg
Drinking CP .jpg

Eating and Drinking as a Learning Activity

The process of eating and drinking is a learning activity. Here are some of the ways the child can learn during this activity:

Preparing for Eating/Drinking:

Understanding and learning words (mother is telling what she is preparing, names of food, utensils, colours, asking where the plate or spoon is), talking (asking the child to tell what the mother is doing, the name of the food, tell where to find plate). Sitting, pointing, picking up the plate etc.

Eating and Drinking:

  • Sitting (head and trunk control, balance); opening mouth, chewing, muscle control and muscle strength of mouth muscles, eye hand coordination, tasting different kinds of food; names of food and names of taste etc.

Cleaning Up:

  • Telling what needs to be done, helping with cleaning up (either by physical helping or by telling what needs to be done); sequence and planning of activities, balance.

Eating with Others:

  • Waiting for a turn, listening to others.

Assistive Devices for Eating and Drinking

Assistive devices can help the child to learn to eat by himself or to make it easier for him to eat and drink. When there are problems with eating and drinking parents often do not think about teaching the child to learn to do it by himself. Therapist often do not see the child during ADL and sometimes forget to use these times as practice time.

Tools

Additional Resources

References

  1. ÖHRVALL A, ELIASSON AC, LÖWING K, Ödman P, KRUMLINDE‐SUNDHOLM LE. Self‐care and mobility skills in children with cerebral palsy, related to their manual ability and gross motor function classifications. Developmental Medicine & Child Neurology. 2010 Nov 1;52(11):1048-55.
  2. Geere JL, Gona J, Omondi FO, Kifalu MK, Newton CR, Hartley S. Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health. Child: care, health, and development. 2013 May 1;39(3):381-92.
  3. Your Therapy Source. Bladder and Bowel Control in Children with Cerebral Palsy. Available at https://www.yourtherapysource.com/blog1/2016/08/01/bladder-bowel-control-children-cerebral-palsy/ (Last Accessed 2 Sep 2016).