F-36 Paediatric rehabilitation

Paediatric rehabilitation has many challenges. Although the rehabilitation principles are similar, their application must be adapted to the child, especially those aged 12 years or less. In their article “Creating and being created: the changing panorama of paediatric rehabilitation,” Paul Helders and colleagues emphasise how paediatric rehabilitation started focusing solely on cerebral palsy. Conductive education started in Hungary at the Peto Institute in the 1920s, in 1936 in the United States with the Phelps method, and in 1943 in the United Kingdom with the Bobath method. This fashion of named therapies without substantial evidence to support them continued for many years with names such as Vojta and Doman. Children grow into adults. Care must transfer from specialist paediatric services to adult services. Thus, all adult rehabilitation services must understand childhood conditions and rehabilitation sufficiently to offer a seamless transfer of responsibility. This is rarely achieved; the National Institute for Health and Care Excellence (NICE) has produced a quality standard for the Transition from children’s to adults’ services. They should be followed.

Competency: paediatric rehabilitation

The rehabilitation expert should be “Able to assess the rehabilitation needs of any child referred for rehabilitation, and to take responsibility for rehabilitation, taking into account the developmental, educational and family context of the patient.” This excludes infants. A downloadable document gives some indicative behaviours associated with this competency and outlines some knowledge and skills needed. Last, it provides some references for further reading.

Introduction

Rehabilitation is an educational activity; the topics and curricula differ from academic education, but many principles are similar. Children’s primary educators are their parents and family, as well as family friends, other children, and, later in life (aged 5-6 years), trained teachers. One may add healthcare rehabilitation professionals to a proportion of children.

Common childhood illnesses are short-lived and usually infections. Still, the paediatric practice also includes a significant number of children with rare, genetic, often disabling and progressive disorders and another group with congenital disorders, such as cerebral palsy. Paediatric rehabilitation is vital to facilitate appropriate adaptation by the child and parents, to support educational services and families, and to ensure the child has access to all necessary equipment and adaptations.

Most children survive into adulthood. Children who used to anticipate death before adulthood now survive and require adult rehabilitation services. Children with Duchenne Muscular Dystrophy have complex needs and are now transitioning into adult services with little experience of the condition. There are now more adults than children with cystic fibrosis.

All rehabilitation practitioners need an understanding of paediatric rehabilitation because they will meet people who have received it, with disorders often not seen in adults. Moreover, you may be asked to give expert help in a treatment used sparingly in children, which a child needs. Third, you should be involved actively in the transfer of care of children to your service.

Learning and adaptation.

The General Theory of Rehabilitation’s first premise is that everyone adapts throughout life as circumstances change, especially for children. As their size, strength, skills, capabilities and performance change with growth and maturation, all children adapt with support.

Parents, teachers, and everyone else expect improvement with ageing. For most children with disabling conditions, this remains the case, except that, for some, the speed and extent will change.

This makes prognosis challenging. Neurological maturation may overcome some neurological losses, and learning new techniques or the arrival of new technology may overcome some non-neurological losses. But this is unpredictable. Further, for many rare conditions, there is such limited data or experience that one is guessing. Consequently, setting goals is difficult because one may need to learn more about reasonable expectations.

On the other hand, a rehabilitation environment where the child is supported in learning and adaptation throughout the day is achievable. Parents, siblings, schools, etc., can often be taught and incorporated into management programmes. This makes rehabilitation more relevant to the child and family. Conversely, it ensures the rehabilitation is centred around the child’s and family’s wishes.

Learning is natural to a growing child, and learning about life, cooking, shopping, using public transport, making friends, etc., are all activities other children learn.

A rehabilitation expert’s crucial skill is educating others on how best to help the child. Thus, one must understand and empathise with parents, siblings, teachers, care managers, and a wide range of professional and non-professional people. The aim is to make rehabilitation integral, not as a necessary additional activity but as a natural way for the child to live. If, when asked, the child says they are not receiving rehabilitation, you have succeeded.

Expectations of paediatric rehabilitation

Understanding and managing expectations is central to all healthcare. Paediatric rehabilitation differs from adult services because, in many stances, family expectations dominate. After all, the child may be too young to have their expectations.

Eric Smart and colleagues studied the expectations of five mothers and nine rehabilitation staff in a paediatric rehabilitation service. They used the Gartner Hype Cycle of change in expectations as their framework.

After referral to a service, mothers went through five stages:

Expecting rehabilitation therapy to be a saviour, making their child as they had hoped for once.
Being turned away and alone because of inadequate resources or a perceived lack of cooperation
Expecting to advocate for their child, as the only way to get help.
Finding new solutions in the environment, usually following advice from the rehabilitation service
Achieving stability, being a mother and a service expert.

Interestingly, service personnel also went through a similar cycle:

Expecting to rescue and cure the child, achieving the mother’s goal.
Searching for an alternative way of being valued after realising they could not achieve the mother’s goal and feeling they had failed.
Expecting to lose control, recognising they could not dictate therapy and child engagement,
Putting their belief and ideas before professionally driven guidance, accepting the validity of their approach
Expecting the unexpected, realising they needed to adapt to the present (new) situations.

Understanding this cycle may help professionals avoid some stages in their own and family expectations.

Transition from paediatric to adult services.

Qualitative studies of service experience are necessarily influenced by the services involved, and generalisation must be cautious. However, Sweden is generally considered one of the better countries for rehabilitation health services, and findings from Sweden will likely apply elsewhere.

In Sweden, Johanna Forsberg and colleagues investigated the transition experience of 15 adolescents with various disabilities, impairments, and diseases. The primary theme extracted from the data was “limbo, defined as an indefinite experience without knowing when or even if something would happen, or whether they would be overlooked.” This was manifest in four separate domains:

The transition experience
This encompassed becoming an adult overnight, fear of being overlooked, and generally feeling insecure.
Organisational aspects
This encompassed insufficient liaison between adult and paediatric services, suboptimal communication and collaboration, and losing access to informed medical services.
Influence on their life
The effect of additional healthcare appointments competing with other aspects of their life.
Self-management
An expectation of taking responsibility for their healthcare arrangements is something they need to be taught or prepared for.

Many people have made suggestions about how transition can be improved. Anne Chamberlain and Ruth Kent reviewed the epidemiology and needs of disabled children when they moved to adult care, describing various models of care. They explained, “ … the young person leaving a cohesive paediatric service may be left to find their way, alone, within uncoordinated adult health services has been described as ‘hurtling into a void’, …”.

Chabrol and Milh referred to Canadian and American guidelines on transition and noted, “In reality, the transition process remains difﬁcult. This is because it still too often takes place through a brutal transfer for patients who are little prepared for it. Furthermore, transition often takes place in period of life characterised by multiple physical, psychological and social changes likely to result in problems in medical adherence.”.

The UK National Institute for Health and Care Excellence (NICE) has produced a quality standard for transitioning from children’s to adults’ services. These standards should be followed, but they are aspirational because rehabilitation is a low priority.

Specific paediatric rehabilitation expertise.

Undertaking rehabilitation with children and adolescents uses the same principles, but it does require different approaches.

The parent is responsible for decisions until the child is judged competent. Nevertheless, the parent must make decisions in the child’s best interests, and if they do not, legal safeguarding may be needed. The parents are also primary carers and self-evidently have a strong emotional relationship. If the child has siblings, their well-being must be considered in all decisions. Thus, the involvement of the family in rehabilitation is crucial, not just desirable.

The child will be receiving education. The rehabilitation team must always liaise with the school. The school must be educated about the child’s condition and how it may affect their education; conversely, the school should inform the rehabilitation team about the child’s education and what the teachers need to know.

The child will spend a lot of time in school, and the school is a vital resource. The school should be educated about how they can facilitate the child’s adaptation to their condition and, if needed, about any care required and equipment used.

Children grow, adapt, and develop. Setting goals takes work, and the team may need expert advice on the expected developmental progress. At the same time, problems may emerge as someone grows, and the team may need to monitor the child to detect possible issues.

Children with neurological damage may have learning disabilities. Some will be cared for by specific learning disability services, who will usually take on rehabilitation. They may need expert rehabilitation advice at times, and some children may need it.

Last, a significant proportion of all disabled children have a rare disease, and the rehabilitation team will need to seek information from specialist sources, such as the National Organisation for Rare Diseases (NORD). This organisation has a register of Charitable Societies associated with rare conditions, a Rare Disease Database, and much more to help professionals and people with the condition.

Conclusion

Children with complex rehabilitation needs will likely be best served by people who mainly see children. However, it is vital that all people working in paediatric rehabilitation services are trained in rehabilitation, including some insight into adult services, and it is equally essential that people in adult services have insight into and experience of children’s rehabilitation. Shared experiences and mutual understanding will, hopefully, increase the attention paid to the child’s transition into adult services. Additionally, experiencing rehabilitation, facing different types of problems and using various approaches can only improve both services. All healthcare has fallen into the trap of excessive specialisation, forgetting general principles and fragmenting patient care. The persisting failure to have acceptable arrangements for people growing up with a disability illustrates this.