Person-Centred Care in Neuro-Rehabilitation – Are we doing all we can?

When a life is struck by brain injury, in those first moments, days and weeks, the path forward seems impossible. The loss is colossal. For the person and their loved ones, life as they know it, has changed forever.

‘Person-centred care’ begins at the very first moment we start reading their background information. The injury sustained, treatment so far, residing symptoms and their life before – job, lifestyle, family. Understanding who they were before, and creating a picture of this in our minds, informs our person-centredness. Our rapport building and compassion for the person is informed by the time and effort we put into understanding their past, which includes speaking to them, relevant professionals and crucially, their loved ones.

When the rehabilitation journey begins, it is a collective force from the person, families/caregivers and professionals that shapes who they become. Further down the line, the roles of the caregivers and their motivation to make things happen, is often the force that shapes the long-term success of rehabilitation. The reality of living after brain injury, trying to adapt with the help of your caregivers, is often the hardest part of the process, and similarly can be where most progress is made.

Occupational therapy at its core and by definition, is person-centred. It is grounded in the belief that participation in occupations (meaningful activities or roles), is essential to health, wellbeing, and quality of life. But the nuances of person-centred practice in neurological rehabilitation (neuro-rehab) may seem simple, but they are seemingly quite complex.

Importance of the collective

As a daughter of someone living with the impact of brain injury, and an all-things neuro and occupational therapy enthusiast, although a challenging combination at times, I am in the privileged position of being able to apply what I’ve learned from lived experience to my practice.

As family members/caregivers, there have been times throughout our journey where we’ve felt alone, failed and hopeless. Other times, we have felt listened to, informed and optimistic. This is often down to the person-centredness of the professionals involved – their competence, willingness to actively listen and in some cases, their motivation to challenge policies/barriers for the purpose of person-centredness and individual needs.

Having the hard conversations and supporting clients and their families to overcome occupational barriers may have a lifelong impact that stays with them forever.

It’s about empowering families with accurate information rather than false reassurance. If you’re unsure, it’s better to say, “Let me find out,” than to give advice that could harm trust or mislead expectations. If we had listened to some of the advice given to us, my dad would never have made it home to live a fulfilling life and continue his rehab journey, as he would have been stretchered into our living room and that would have been it.

The foundation of person-centred care is respect — for the person’s journey, their emotions, and the truth of their situation. Give sound advice based on real person-centredness and knowledge of that person and their family, financial situation and hopes for the future.

What person centred isn’t and how we can overcome it

Person-centred practice isn’t using an hour of in-direct time (possibly speaking with a family member or equipment representatives) and labelling it as the client’s one hour of therapy time for that day/week. Person centred practice is creating service provision which accounts for enough in-direct and direct time for each client.

Although occupational therapy models of practice such as the Person Environment Occupation (PEO) or Canadian Model of Occupational Performance and Engagement (CMOP-E) present the person and what are arguably the most important factors to engagement at the centre of their frameworks, when we unpack this in real terms in neuro-rehab, certain pivotal factors are often lost.

Whether this is loved ones or paid carers, we are often the facilitators of a person’s potential — the bridge between what is and what could be. True rehabilitation cannot exist in isolation; it thrives on collaboration, consistency, and shared purpose. The carer’s understanding of the person’s story, values, and motivators can make the difference between rehabilitation meeting basic need and it becoming a journey of rediscovery.

The subtleties of person-centred care in neuro-rehab

Person-centred care is not a checklist, nor is it a phrase to describe “good intentions.” It is an active, ongoing commitment to see the individual beyond their diagnosis. In occupational therapy and neuro-rehab, this means understanding what life and their engagement in occupations was like before, adapting approaches and communication styles, engaging with a person’s unique cognitive, physical sensory or emotional needs, and working with their families to understand what means most to the person.

It’s about asking: What matters most to you right now? and building therapy around the answer — even if it changes daily.

Therapists who embody person-centredness are not simply delivering a service; they are walking alongside someone as they rebuild their sense of identity and agency. This requires time, empathy, and the courage to advocate for what the person truly needs, not just what the system allows.