Unpicking the impossible - Neuro OT and complex behaviour following brain injury
Krysalis is a specialist independent provider of neurological occupational therapy. In October, the team were thrilled to win the Case Management Society of the United Kingdom (CMSUK) 2018 Therapeutic Provider of the year award. The award was judged by the CMSUK board and three external judges who commended Krysalis for excellence in practice, specifically for providing outcome focused intervention and consistency of approach for all neurological clients regardless of location.
The case study below was submitted to the judges; it showcases clinical excellence within the context of specialist neurological occupational therapy in the community setting for a client with acquired brain injury.
Acquired brain injury and complex behaviour in the community setting
Complex situations need a specific approach and whilst clinical experience and knowledge of a condition is essential, life changing progress is sparked by a combination of experience, commitment and creativity. This is especially true when working with clients with complex behaviour because of an acquired brain injury.
Claire was 48 years old when she experienced a brain injury due to encephalitis. The focus of occupational therapy (OT) intervention was to provide a truly client centred service using activities to further understand Claire’s abilities and facilitate positive relationships with her support team. Through OT support Claire was encouraged to engage within her daily routine to improve her independence, mood, behaviour and quality of life through the facilitation of the OT led ‘Active Environment’. The evidenced-based approach and service model (including structured goal setting and documentation) used by the OT team in this case study is part of Krysalis’ unique approach for all neurological clients offering consistency across the service.
In the beginning, we did not know how to manage her behaviours. She used to do some strange things like wash her clothes in the toilet. She could be very physical if you upset her in anyway. You had to be careful on how you say things in case this upset her; even your tone of voice could make things worse.
Member of Companion Team
Managing complex behaviour in the community is viewed, by some, as an impossible challenge. This case study demonstrates the opposite; even with complex clients, gains can be made that benefit not only the client, but also the family and the support team.
Unpicking a complex picture of needs
Claire was working full-time at the time of her brain injury. She is affected by thalidomide and so, prior to her brain injury, had overcome many physical barriers to independence. Her subsequent brain injury significantly impaired her cognitive abilities impacting largely on her memory which, being a core cognitive skill, also impacted on many aspects of everyday life. She is unable to organise and plan, remember new faces or new information and so must live very much in the here and now.
Claire demonstrated many behaviours that were considered detrimental to her health and wellbeing, these included:
- withdrawing to her room
- repeatedly washing clothes in the toilet
- not participating in personal hygiene activities, including washing, changing clothes and oral care
- declining clothing or bed linen be washed
- hoarding food and excessive overeating
- refusing to access the community
- repeatedly wanting a response and reassurance to verbal statements, e.g. “I’m right aren’t I; I know everything don’t I?”
She was also exhibiting further negative behaviours which were potentially detrimental to her and those around her. These included:
- body blows, head pushing and kicking
- intruding on others’ personal space
- shouting and throwing items.
The initial stages of rehabilitation involved changing the ‘view’ of how Claire’s behaviour was interpreted. What was Claire experiencing that made her respond in a positive or negative way to her environment and the people around her? Time within occupational therapy was spent understanding Claire and her ‘view of her world’, as well as the barriers that were being experienced by the family and support team with activities of daily living. An evidenced-based framework was used to guide occupational therapy assessment and analysis of Claire’s behaviour and function.
Acknowledging the importance of our values and belief system
Claire clearly valued being viewed as self-reliant and just as able as anyone else. It was considered that this long‑established belief system was central to how Claire viewed herself; she was a tenacious woman who, throughout the course of her life, had battled with the barriers of living with a disability as a result of thalidomide. Claire was often offended by requests from her family and support team to complete tasks in her best interests. These requests would cause increased anxiety and trigger aggressive outbursts.
When I first met Claire, she was being assessed by lots of people and I felt protective of her. I would step in and I don’t tend to do it so much now. I used to talk ‘for’ Claire. OT helped me to realise how to talk ‘to her’ and not to talk ‘for her’. In the beginning, we also overloaded her with activities, but we learnt our lesson.
Member of Companion Team
Her clear inherent value system unconsciously fed into her responses to the people around her. It became clear that there was conflict between long-held values and new-found limitations; an inability to rely on hard-wired systems of coping and regular internal confrontation of Claire’s perception of herself due to the new situation she found herself in. These confrontations were a trigger for her behavioural outbursts. Having to deal with this internal confrontation with very poor memory and cognitive and executive limitations resulted in a huge challenge indeed.
Claire valued her academic ability and her previous successes in education and work. With regard to her family, she valued being a mum and her ability to look after her children when they were younger. She valued demonstrating how she could do tasks independently and so was keen to teach the OT her techniques. These motivating factors were used as a foundation for OT intervention.
A truly client-led service
The focus within occupational therapy (OT) was to influence participation in activities, either independently or with the help of her support team, and to reduce the behaviours considered to be detrimental to Claire’s wellbeing and that of the team. An OT treatment plan was devised that focused on ways of engaging Claire. This included:
- Activities were approached together and not done ‘for’ Claire, e.g. “I have brought this with me today and wonder if you would do it with me?”
- Activities were used to explore strengths and reflect on and acknowledge achievements, g. life story book, using an app to create family / film related puzzles, creating gifts for family.
- Activities were used to challenge physical abilities and create opportunities to demonstrate to others how able she is, g. gardening, baking, craft.
- Chosen activities were related to her past history and to her valued roles and skills, e.g. completing the walk to her children’s school, going out to take photographs to make a jigsaw for a gift, taking a challenging walk “off road”, light exercise and
A key element of OT intervention was around education of the support team and family regarding expectations, pacing of activities, importance of routine and consistency, and a need to provide a safe and familiar base from which Claire could explore.
We structured the ‘active environment’ within the home to help Claire to feel empowered. Claire needed support to organise herself, her time and her activities of daily living (ADL) routine but did not wish to be reliant on instruction from another. When considering the barriers Claire was facing, it was important to consider and introduce strategies which supported a sense of empowerment and a subtle shift in the focus of control.
The OT has been a very valued advocate for looking at Claire's life before her illness and reminding everyone of the strong woman she was, the values she held and the interests she followed. I would agree absolutely that this has made a difference
Strategies used included a weekly planner board, a clock with the date and the use of sensors instead of verbal prompts (which Claire considered confrontational) to operate the toilet and body dryer. The focus was to create an environment where Claire could indirectly choose to take part in activities going on around her rather than Claire being asked, “What you would like to do?” or “Would you like to do ….?”; these were questions that would be overwhelming for Claire and would trigger a behavioural outburst.
In the initial stages of OT intervention, Claire did not access her local community and would choose to participate in home-based activities. OT intervention began within Claire’s comfort zone and indoor-based tasks. The focus was to graduate towards outdoor activities and garden-based tasks, and onto meaningful community-based activities within therapy session. Activities were repeated routinely within 1:1 therapy sessions, then transitioned out to be completed with the support team.
Occupation and engagement
Within the occupational therapy approach, performance and participation in occupation and activities were used to explore and influence Claire’s motivators, values, habits and abilities.
Throughout the course of intervention, we have been able to incorporate Claire’s need to control and demonstrate her independence, and acknowledge and value her achievements and self-perception. We have explored how the physical and cultural environment feeds into Claire’s dynamic, ever evolving experience of her day-to-day life. We have modified Claire’s socio-cultural and physical environment to reduce confrontation and provide opportunities for Claire’s values to be realised. We have incorporated the familiar and provided consistency.
Claire’s experience of taking part in activities has been altered by these interventions and this has fed into the dynamic, evolving way Claire participates in and experiences activities of daily living, allowing Claire to once again feel independent and in control within her ‘active environment’.
Quantifying the value of neurological occupational therapy
Several outcomes have been achieved throughout the course of the rehabilitation programme. Claire uses her weekly planner and clock as a reference for her day-to-day routine. She visits the grocery shop weekly with her support worker and with two staff for events, such as theatre and art exhibition. She enjoys accessing her local community to take a walk, visit a café and sing in the choir.
The OT's support and drive have helped the companions confront obstacles creatively. There is immense value to them as lone workers in receiving outside professional and therapeutic support
Claire is maintaining her personal hygiene by taking regular showers and she engages in a variety of in-house activities at home. Importantly, there has been no physical or verbal aggressive outbursts recently and a reduction in other negative behaviours.