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Redefining 'rehabilitation' - beyond maximising independence

22 Dec 2016 1:04 PM | William Levack (Administrator)

Coming up with a definition of rehabilitation that everyone agrees on is super difficult! A good definition should clearly and comprehensively describe what is and what is not within scope of rehabilitation.  Does rehabilitation include the management of cerebral pressure in the acute stages of management of traumatic brain injury?  Is ice for an ankle sprain rehabilitation?  Is cognitive behaviour therapy a form of rehabilitation in all or just some contexts, or it is never actually rehabilitation?  Does rehabilitation extend beyond the formal health services to include things like getting back to one's bridge club meetings, going to the beach or pub for the first (or tenth?) time after spinal cord injury, or starting up with wheelchair rugby?  At what point is 'rehabilitation' just people getting on with their lives again?

Some might say that rehabilitation is defined by the process involved.  If it is goal directed, does that make it rehabilitation?  (Football is goal directed: Is that rehabilitation?) Does rehabilitation require the involvement of formally trained health professionals?  It is rehabilitation because it is provided by a rehabilitation service (a tautological definition)?

In the business case to establish Cochrane Rehabilitation, we referred to the World Health Organization's (WHO) current definition of rehabilitation which is: ‘a process aimed at enabling [people with disabilities] to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides disabled people with the tools they need to attain independence and self-determination’. In 2001, WHO also included the view that: ‘The rehabilitation process does not, however, involve initial medical care’ (p.290). I suspect some people disagree with this extra criteria to define rehabilitation however, which might exclude initial management of spasticity after brain or spinal cord injury for instance.  It also raises the question about when 'initial medical care' ends.  Nonetheless, this is the definition my colleagues and I used in our review of goal setting in rehabilitation (Levack, 2015) to help make decisions about papers that were and were not ‘in scope’ for the review.  Of note, we used this definition to include papers from the mental health sector as well.

One additional thought I have on this topic however is that I’m increasingly questioning the idea that the primary focus of rehabilitation should be on maximizing independence. For people with complex disabilities, I’m wondering whether rehabilitation should be more about maximizing people’s opportunities to fulfill their personal preferences, which may or may not include maximizing independence. It may also include maximizing interdependence. It could also include making decisions to pass control of some aspects of one’s life over to other people. 

This is not actually an incredibly radical idea.  Being someone with very little hair, I am 'independent' in getting my two weekly haircut. (I just shave my own head.)  Others however choose to get help with their hair.  They pass control of their hairstyle over to trained professionals.  When the hairdresser says 'what would you like me do for you today', the individual in question could in fact say 'I don't know. You decide.  Surprise me.' Interestingly, this is not considered 'being dependent on others' (considered a poor outcome in rehabilitation), but rather this is considered to be people exercising their right to choose.

From this perspective, rehabilitation for people with complex conditions should be primarily about reinvention of oneself rather than primarily about regaining independence. Restoration of one's prior skills and abilities is still part of this perspective on rehabilitation, but simply not the sole focus.  This position in fact aligns nicely with Amartya Sen and Martha Nussbaum 'capabilities theory', which focuses on 'the moral significance of individuals' capability to achieve the kind of lives they have reason to value'.  It also fits nicely with a focus on strength of positive self-identity as primary outcome from rehabilitation rather than using measures of functional independence as the main way to judge the 'success' or otherwise of rehabilitation programmes.

In 1624, John Dunne wrote: "No man is an island/Entire of itself/Every man is a piece of the continent/A part of the main." In doing so, Dunne reminds us that none of us are independent; none are separate from the thoughts and actions of others.  Maybe it is time to re-define rehabilitation to incorporate a more holistic, interdependent view of functional lives.

William Levack is an Associate Professor of Rehabilitation at the Rehabilitation Teaching & Research Unit, University of Otago, Wellington, New Zealand. Twitter: @DrLevack

References

Levack, W. M. M., Siegert, R. J., Dean, S. G., McPherson, K., Hay-Smith, E. J. C., & Weatherall, M. (2015). Goal setting and activities to enhance goal pursuit for adults with acquired disabilities participating in rehabilitation. Cochrane Database of Systematic Reviews, Issue 7, Art. CD009727.

World Health Organization. (2001) The UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities. II. Main Report. Geneva: World Health Organization.

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