RCOT Publish: Exploring an individual’s dynamic, ever-evolving experience of their day-to-day life following acquired brain injury

The following article was published in the August edition of the Royal College of Occupational Therapists OT News.

Krysalis is a specialist independent provider of neurological occupational therapy for people with acquired brain injury and neurological conditions. The team of highly skilled Occupational Therapists are based throughout the UK and were thrilled to win the Case Management Society of the United Kingdom (CMSUK) Therapeutic Provider of the Year award.   

As a specialist provider of community-based brain injury rehabilitation services, the team at Krysalis work with a wide variety of individuals and their families utilising a specialist approach that is unique to the service.

Combining the skills and expertise of specialist Neurological Occupational Therapists with a client-centred model of practice, this approach seeks to establish:

• A greater understanding of the client, including the individual’s value and belief systems.
• The impact of the social and physical environment on the client’s independence.
• The client’s long held or changed views of ‘self’ following the acquired brain injury.

In winning the CMSUK award, the team was commended for excellence in practice, specifically for providing outcome-focused intervention and consistency of approach for all neurological clients, regardless of location. The key to this approach is in viewing the person with brain injury as an individual and working hard to weave client-centred practice into the core of the service. This approach is adopted for all clients who are supported by Krysalis, but is explored here in the context of community rehabilitation within the home environment relating to complex behaviour following ABI.

Acquired brain injury and challenging behaviour in the community setting

Challenging behaviour following acquired brain injury is a complex area but one where neuro occupational therapy can play a significant part in challenging perceptions and helping individuals maximise their potential. In clinical practice, however, complex behaviour is considered highly specialist and many OTs will feel unconfident regarding their role. 

This may in some part be attributed to a desire to present an immediate solution to a problem. As OTs, we are solution-focused problem-solvers, and challenging behaviour requires time, detailed assessment, observation and patience. This is never truer than when, within the community setting, the physical and social environment is unpredictable and complicated.

 A skilled Neuro OT blends the knowledge of a person with an in-depth understanding of the brain and how it functions. They have a curious and enquiring mind regarding the components of activities and where the barriers to independence lie, with a persistent determination to problem-solve and help their client overcome the actual or perceived barriers to independence. 

Jo Throp, Clinical Director

Individuals with brain injury can present with a wide variety of behaviours that are not only detrimental to their health and well-being but may also impact significantly on family members and the sustainability of long-term care packages within the community.

Such challenging behaviour may include: resistance to personal hygiene activities; issues around self-neglect such as refusing the washing of clothing or bed linen; refusing to engage in a programme of activities, negative behaviours such as body blows, head pushing and kicking; intruding on others’ personal space; and shouting and throwing items.

Unpicking a complex picture of needs

At Krysalis, the first step taken is to try to view the individual ‘through different glasses’ to aid understanding. Time is spent within occupational therapy sessions understanding the individual’s ‘view of their world’ now which, due to the consequences of their brain injury, may have changed. For example, there may be a discrepancy between an individual’s desires and intentions and their actual ability to undertake an activity due to internal limitations posed by cognitive or executive impairments, or due to environmental limitations such as reduced control or choice. Having an understanding from the client’s perspective is considered to be an essential component of Krysalis’s service.

These insights are considered alongside detailed functional assessments reviewing cognition, executive function and dysexecutive behaviours.  

An evidence-based framework is then used to guide occupational therapy assessment and analysis of behaviour and function. The team then consider motivation or what spurs on an individual to respond or choose to engage in activities or not. This includes how motivation guides the choices that are made and how the individual subsequently behaves. At a basic level, the first question an individual must ask themselves is, “Am I going to engage in this activity, or plan, or not?”

The team then consider “what was the individual experiencing that made them respond in a positive or negative way to the environment and the people around them?”

Working with an individual’s family and support team is a central component to successful rehabilitation. Insights regarding the individual prior to their brain injury are vital, such as the type of person they were and, importantly, how their value and belief systems influenced their behaviour prior to their injury.  All of this information helps to build up a picture of the individual. We must also think about the family’s and support worker’s understanding of the behaviour they are witnessing, how they are interpreting what they are seeing and, as a result, how they view the individual and act in response.

We consider in detail the individual’s role and influence of the family unit, how they spend their time and how they feel about their routine and ability to undertake activities. Through the use of activities, we take time to review and affirm the individual’s self-perception, explore their views and beliefs about themselves as they were, as they are now and how they wish to live their life.

Krysalis providing a truly client led service

We all live and work within a variety of environments, including the physical environment; that is, the space and objects around us, and the social environment, made up of the people who may influence us. 

For clients with acquired brain injury, the social environment can have a significant impact on behaviour and ultimately their performance and participation in activities. For some individuals, the actual or perceived attitudes of the wider community could be viewed as negative, resulting in both internal and external psychological barriers. Individuals may feel dis-empowered by those around them while the approaches used by professionals, family members and support staff may create conflicts with core values and belief systems.

Physical limitations can present barriers in a wider world that is largely tailored to able-bodied individuals.  As a result, for many of those with acquired brain injury, life shrinks, roles are lost and opportunities are missed. Individuals may become disengaged from activities as a further consequence, and present as poorly motivated, among other behaviours.

Occupational therapy within Krysalis influences participation in activities and works in collaboration with families and support staff. All clients are supported within their own home and, essentially, support staff are educated to ensure that long-term independent living is a viable option. The focus is also on reducing the behaviours considered detrimental to well-being and to the team.

Occupation and engagement

Key to the occupational therapy approach at Krysalis, the individual’s performance and participation in occupation and activities is used to explore and influence motivators, values, habits and abilities.

Goal-setting and subsequent occupational therapy intervention ensures that the individual is really listened to. There is a recognition that in order to promote self-efficacy individuals must be supported to demonstrate their independence, acknowledge and value achievements, and develop their self-perception to work towards developing a new sense of self.

At Krysalis, we explore through our specialist intervention how the physical and cultural environment feeds into an individual’s dynamic, ever-evolving experience of their day-to-day life. We modify the socio-cultural and physical environment to reduce confrontation and provide opportunities for an individual’s values to be realised alongside a familiar and consistent routine.

An individual’s experience of taking part in activities is altered as a result of these interventions, and this feeds into the way our clients participate in and experience activities of daily living, allowing them once again to feel independent and in control within their active environment.

This consistent approach benefits not only the clients who are supported by Krysalis but feeds into the development and education of our specialist team of Occupational Therapists.

Occupational Therapy News (OTnews) is the official monthly magazine of the Royal College of Occupational Therapists.  The magazine is distributed monthly to all RCOT members, OT News reaches all levels of the profession. More details about the publication can be found here.