At-home therapy for Children with Unilateral Cerebral Palsy
AT-HOME THERAPY might seem like a bit of a symptom of the lockdowns and the coronavirus pandemic, but in fact, it has been part of a full rehabilitation and therapy programme for a number of years. Over the past few years, there’s been a wealth of interesting research into how best to incorporate at-home therapy sessions into the broader picture of therapy and care programmes for children with unilateral cerebral palsy.
A systematic review published in the British Medical Journal in October 2020 demonstrates that, while further research is necessary to draw strong conclusions about the feasibility and effectiveness of some types of at-home programmes, the existing research suggests that there are significant advantages. The review brings to light some points which, after the dramatic and unprecedented changes brought about by coronavirus, may be validating for many parents and carers of children with cerebral palsy – although, in my experience of representing children with cerebral palsy, it is unlikely to be ground-breaking news! The Child Brain Injury team at Bolt Burdon Kemp often are privileged to advocate for children with cerebral palsy, and we endeavour to fully understand, and integrate with the team around the child. At-home therapy plays a role in the wider picture of a child’s care and the systematic review suggests that there are many advantages to focusing on programmes which support home-based activities. The studies which the systematic review cover almost universally report improvement in children’s motor skills, and point to some significant, albeit less tangible, benefits of including at-home therapies.
The scope of the review
The review looks at a few specific forms of at-home therapies, focusing on children with unilateral cerebral palsy (the most common form, where only one side of the body is affected). Although there have been a large number of small scale studies on various forms of at-home therapies, high variances between the outcome measures, patient and parent characteristics, and comparators, among a few other issues precluded any conclusions as to the overall effectiveness and feasibility of at-home programmes. However, the review drew out positive outcomes from all of the small scale studies, and indicated that the fault was not with the at-home therapy programmes but rather the limitations of the studies.
Pros and cons of at-home therapy
At-home therapy programmes generally offer a number of benefits: they promote a greater involvement of parents and carers in the child’s treatment and rehabilitation; they provide for more continuous practice of therapeutic exercises; and they can support a child in developing motor skills in a practical environment. After a year of lockdown and reduced access to therapy sessions, this will hopefully be encouraging to parents concerned about the setback to their child’s wellbeing. The big picture seems to be that every little helps – it is useful for children to be able to watch actions and exercises repeated, and even more so when they can be supported in attempting the actions and exercises themselves frequently and regularly. Even the studies which saw lower rates of acceptance (i.e. a lower commitment to the programme) reported positive results.
However, as many parents will be able to attest to, there are difficulties in maintaining a routine for any child – especially during a global pandemic. The good news is that the studies which followed parental stress during a trial period of at-home therapies found that the programmes did not substantially increase stress, especially where the parents were well supported by an accessible and tailored programme. The flipside, of course, is that underfunded and under-supported programmes act themselves as a stressor for parents who are having to act as parents and therapists, often while negotiating the needs of other children, their partners, and their careers. The most effective programmes were those which parents were coached through, which were most interactive, and easiest to customise. Programmes like these offered children a chance to practise therapeutic exercises at a pace and level that suited them, in a home environment, supported by their families.
For our clients with cerebral palsy of varying forms, access to in person therapy during lockdown has proved to be difficult. It would be nice to see some sort of acknowledgement of the impact of oblique government guidance on treatments such as rehabilitation therapies. However, in the Child Brain Injury team at Bolt Burdon Kemp, we have also been in awe of our clients and their families who have been so resilient, even while their situation has seemed impossibly difficult. We would encourage further studies on the best ways to provide rehabilitation and therapy at home to children with cerebral palsy; it is evident that there is plenty of room for further research and for improvement. The overarching comments by the authors of the systematic review about the importance of parental involvement is similarly something that we are familiar with; it is vital to work with the whole care group around the client, in order that the client can be supported from all sides – it is in the client’s best interests to work closely with those who are closest to the client. Overall, the research into at-home therapy is interesting and encouraging, but really drives home one of our key tenets of working with children with brain injuries of all kinds: that it is crucial to ensure the child and their family are supported in a way that is tailored to them, which minimises the additional stresses, and which is centred of the wellbeing and interests of the child.