The study was led by Dr Sonali Shah and Professor Pip Logan from the School of Medicine at the University of Nottingham and funded by the National Institute for Health Research (NIHR).

Dr Shah, who has CP herself, said: “Falling in people with CP can lead to a reduction in life activities that the general public would probably continue with until they were much older, prompting an increased reliance on their family and friends.

People living with CP are the largest demographic of the population with lifelong impairments. In the UK, the National Institute for Health and Care Excellence (NICE) estimates 2-3.5 per 1000 live births result in CP.

Although CP is often referred to as a paediatric or childhood condition , individuals with CP have the same life expectancy as their peers, so there are currently three times more adults than children living with CP.

People have CP generally as a result of damage to the infant brain before, after or during birth. Although this damage is non-progressive, the developmental time course is variable, therefore adults with CP will experience medical co-morbidities, and the physical consequences of these, at different ages.

This coupled with overuse of muscles and joints necessary to participate in everyday activities and compete in a society built for the non-disabled body, impacts the bodies of individuals with CP in multiple ways. One of these is an increase in falling incidents linked to reduced mobility, balance and stamina.

Very little research exists on the impacts of falling for working age adults with CP, but the few studies that do suggest that it negatively impacts social participation, independence, valued economic and social activities, social identity, and confidence.

The team recruited 26 adults with CP from across England. Participants were interviewed by Dr Shah, on their experiences of falls. The sample included 16 women and 10 men born between 1948 and 1995. Eight participants identified as having hemiplegia (one side of the body affected), 10 as having diplegia (two limbs affected) and eight quadriplegia (four limbs affected). Participants indicated that their impairment effects related to mobility, co-ordination, and speech.

Participants in as early as their 20s, but increasingly so as they reached their 40s and 50s, described how becoming more conscious of the risk of falling made them re-evaluate whether or how they could continue to participate in a range of social and economic activities important to them.

The data showed, that although participants experienced an increase in falls, and other physical deterioration, they reported that little or relevant support was being provided by healthcare providers.

There is 30 years between participants Erin and Bill, implying that they were embedded in very different socio-historical contexts, shaped by different policies, institutions and environments. Erin grew up in an era of national and international rights-based policy, which changed the choices and opportunity structures that had been available to Bill. Yet, both participants were offered similar medical advice.

You know, because they (doctors) were saying, you know, “Your pain isn’t going to get better; it’s going to get worse. You’re going to fall more. As you get older, you’re probably going to break something,” you know. And you kind of alluded to, you know, well the job you do is quite physical, and I recognise that at some point you’re probably going to have to give that up sooner than your peers would…it’s all environmental. It’s all to do with what’s going on outside of you because actually the condition – you know, the condition itself doesn’t change. (Erin – 32 - Hemi)

Things that I was having no problem with suddenly became very heavy. My balance was going, I was falling over a lot. I was in a lot of pain, which seems to have progressed… I went on for about five or six years still working. Things gradually got worse. Saw a doctor, he said, “The only thing I can do is medically retire you.” I didn’t really want that, because mechanics was all I knew… (Bill - 61 - Hemi)

“Our work brings a critical awareness of how falls affect the lives of adults with CP and how current service provision is not able to provide appropriate falls prevention interventions,” adds Dr Shah.

The difficulties adults with CP experience with an increased risk of falling, is heightened by lack of societal responsiveness. For example, being forced out of work, rather than adaptations being made. Societal norms that equate independence to not requiring support to participate in society are also an important aspect of an ableist society.

Adult rehabilitation services can play an important part in challenging this by framing the use of assistive technologies such as wheelchairs in a positive way, i.e., not as a loss of independence, but as the means to continue being independent.

This research also shows the benefit of taking a life course approach as it can provide an understanding of the relationship between what is happening to the body of a person with CP as they grow older, and the wider contexts of their lives. Such an approach can help health and social care services support people with CP to remain socially active and productive.

The full study can be found here.

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More information is available from Dr Sonali Shah, from the School of Medicine at sonali.shah@nottingham.ac.uk

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