Cerebral palsy

Cerebral palsy: what parents and doctors want to know

Extracts from the British Medical Journal, 3rd May 2003

Cerebral palsy is a physical impairment that affects the development of movement and is the most common physical disability in childhood. Impairment can vary considerably and no two people with cerebral palsy are affected in exactly the same way. The problems that children and adults with cerebral palsy face, including discrimination, are often similar.

Children with cerebral palsy usually survive into adulthood, and the condition is often poorly understood in adulthood. Recognising and managing cerebral palsy's many important comorbidities is as important as treating the motor disabilities. Challenges include ensuring the wellbeing of families as well as children; tackling the issues faced lifelong by people with cerebral palsy; and the continuing need for primary, secondary, and tertiary prevention of the effects of cerebral palsy on people's lives.

What is cerebral palsy?

Cerebral palsy is "an umbrella term covering a group of non-progressive, but often changing, motor impairment syndromes secondary to lesions or anomalies of the brain arising in the early stages of development

A total of 2-2.5 of every 1000 live born children in the Western world have the condition; incidence is higher in premature infants and in twin births. The common perception that perinatal asphyxia is an important cause of cerebral palsy almost certainly overstates the case; occult infection or inflammation is increasing implicated. Often a cause cannot be found in the history of children with clear clinical evidence of cerebral palsy.

First signs

Cerebral palsy, except in its mildest forms, can be seen in the first 12 to 18 months of life. The condition presents when children fail to reach their motor milestones and when they show qualitative differences in motor development, such as asymmetric gross motor function or unusual muscle stiffness or floppiness. Cerebral palsy is usually characterised clinically by the parts of the body affected.

Developmental implications

Delayed or aberrant motor function affects the development of a child's capacity to explore actively and to learn about space, effort, independence, and the social consequences of moving, touching, and getting into mischief. Limits to a child's functioning can cause parents to perceive their child as damaged, impaired, or disabled (and therefore limited); parents may interact with their child differently than if the child had better function.

People with cerebral palsy are considerably more likely to have functional difficulties unrelated to movement but related to their central nervous system (including sensory, epileptic, learning, behavioural, and related developmental impairments). 

These problems, when present, affect day to day life and can cause considerable distress to children, parents, and carers. These problems are not inevitable or intractable, but it is essential to ask about, identify, and intervene before problems become entrenched.

Such children are at high risk of rejection by peers, lack of friends, and victimisation. It is essential to recognise the coexistence of physical functional and neurobehavioural disabilities in children with cerebral palsy and to provide integrated services to tackle these manifestations.

Parents' first questions about cerebral palsy

The literature on truth disclosure and communication with patients and families calls unequivocally for honesty, openness, communication with both parents together, and sensitivity to the individual needs of each family. A reliable and validated functional classification system for cerebral palsy has made it possible to provide evidence based answers to inform both parents and service providers (fig In future this information may also be used to develop intervention programmes appropriate to a child's age and stage.

Modern goals: treatment and management

Cerebral palsy cannot be cured. The goals of management should be to use appropriate combinations of interventions (including developmental, physical, medical, surgical, chemical, and technical modalities) to promote function, to prevent secondary impairments and, above all, to increase a child's developmental capabilities.

There is a need to move beyond efforts to promote normal function in children with cerebral palsy (often an illusory goal) toward the achievement of functional abilities that facilitate independence. Also, the liberal use of adaptive equipment - for example, powered mobility or walkers may promote early development of capacities such as independent ability to move about with the important effect of improving overall development. The common concern that making things too easy for children will inhibit normal function is unfounded; there is strong evidence that, for example, the provision of powered mobility to children with disabilities as young as 36 months can have pervasive impacts on social, language, and play skills as well as increase efforts to try independent movement. A similar argument can be made for the early introduction of augmentative communication systems for example, sign language, and picture boards which make communication possible and often help to promote the development of oral language. Introducing new parents to others who have chosen to provide devices to their children can be helpful to let the experienced parents discuss how they made the decisions about the use of equipment and sharing their perceptions about the value (or not) of this special equipment.

The role of the family and how doctors can help

Modern services for child health are increasingly being offered within a framework that espouses family centred service. Parents and providers work together in a partnership quite different from the traditional management of a rehabilitation programme directed by a doctor. These new relationships are predicated on mutual respect, empowered parents, and appropriate sharing of information with which decisions can be made.

Parental values and goals can form an important component of the management programme that is created for a child. Goal setting should be a joint venture between parents (and older children) and healthcare providers. This approach has recently been shown to lead to more effective outcomes and to be more efficient in terms of the amount of intervention by professionals.

Continuity in the relationship between parents and trusted counsellors is important; professionals such as family doctors and therapists are people who will listen, support, advocate, and be there when challenges arise. Challenges are especially likely at times of transition in the life of the child and family, such as at the time of diagnosis, starting primary or secondary school, leaving school, and when entry to the broader community is being considered. Continuous and consistent service is valued by parents.

The future for research

An important and growing concern is the unmet needs of young adults with cerebral palsy.

The challenge to be addressed by service providers, educators, prospective employers, policy makers, and others is to begin to anticipate and plan appropriately for the full incorporation of adults with cerebral palsy into the life of their community. This challenge is one that must be addressed by the whole community, and should involve the imagination and political will of professionals and families from all areas of society. To do less would be to marginalise young people with cerebral palsy and to squander the developmental and functional gains they have made in their developing years.

Capability Scotland - information on cerebral palsy

Bobath Scotland Children's Therapy Centre

Cerebral Palsy Register for Scotland

Scope