After brain injury, patients and their families can feel confident to self-manage

Traumatic brain injuries are common causes of hospital visits and can be triggered by seemingly innocuous incidents such as falls from standing. But traumatic brain injuries can have long-lasting, life-changing consequences, including reduced concentration and memory, which can endure long after a patient is discharged from medical care. That’s why professionals at Imperial College Healthcare NHS Trust are working to implement a package that supports patients and their families to manage recovery after discharge. Here locum consultant in rehabilitation medicine Petra Makela and clinical nurse specialist in neurorehabilitation Ines de Sousa de Abreu, along with senior physiotherapist Susie Wolstenholme and senior occupational therapist Brooke Taylor, discuss this new self-management package for traumatic brain injuries.
Q: Why develop a special package for traumatic brain injury recovery?

Ines: A brain injury is invisible – you don’t see it in the mirror, but it’s there. On-going symptoms can include headaches, dizziness, fatigue, mood changes, irritability, concentration and memory problems.

Petra: For many people, the real challenge begins once they leave the controlled environment of the hospital – people can feel abandoned and can struggle to cope. The idea is to start supporting people and their families and carers to self-manage their recovery right at the beginning of their admission to hospital, to make it easier for them to continue once they are ready to leave hospital and go home.

Q: How was this new approach for people recovering from traumatic brain injuries developed?

Petra: Ines and I worked at King's College Hospital NHS Foundation Trust in the brain injury team before we came to work at Imperial College Healthcare. That’s where we had the opportunity to work with the social enterprise Bridges Self-Management, founded by Professor Fiona Jones, which trains multidisciplinary staff in self-management approaches across a range of long-term conditions – essentially, supporting people to feel confident to manage with less reliance on services, and enhancing the efficiency and impact of their care and rehabilitation.

We recognised that people with traumatic brain injuries may benefit from the same patient-centred self-management approach as had been developed for people after stroke, so thought this would be a really good opportunity to apply the principles for people with traumatic brain injuries. But the first step was to develop the resources, using the Bridges principle of co-design with people who have had the experience of traumatic brain injuries, themselves and their family members.

We collaborated with Bridges Self-Management and the local branch of the brain injury charity Headway, and together we secured a competitive grant from the Health Foundation, to develop a Bridges package for people recovering from traumatic brain injuries.

Q: What is included in the Bridges supported-self management package for traumatic brain injuries?

Petra: The package includes three main components: a training programme for healthcare professionals and two unique books for patients and their families and friends. The training programme is open to staff at every stage of the traumatic brain injuries recovery journey, from staff on acute hospital wards to outpatient and community settings. Staff learn how to integrate Bridges principles of self-management support into their work with patients and families, including problem-solving, self-discovery, goal setting and creating knowledge together about the best ways to self-manage.

Ines: The books support this self-management approach by sharing the real-life experiences of patients with traumatic brain injuries, and the families and carers who help manage their rehabilitation and recovery. These books provide insights about the after-effects of traumatic brain injuries, which are often difficult to manage and can be unique to each person. By reading about how others cope with the challenges of traumatic brain injuries, patients and their families can learn more about how they can improve or at least manage this condition.

Brooke: We find that this self-management approach to rehabilitation is especially successful when we engage friends, family and carers. In the very acute stages of traumatic brain injuries, patients themselves are often unable to engage in therapy and have poor insight into the effects of their brain injuries. In these cases, we often introduce the self-management approach to friends and family, who are able to support the patient take the lead in managing their condition when they are ready.

Petra: Within the initial evaluation study, over 100 staff were trained and then the package was implemented across the whole traumatic brain injuries pathway with over 70 patients and their families, over the course of three months. We found that staff adopted and adapted the collaborative methods that underpin the Bridges approach, and patients and their families described the value of the support and ideas from the books, during a time of great disruption.

This package is now being implemented at Imperial College Healthcare NHS Trust as well as the other major trauma centres in London. The project team is actively learning about how to disseminate and embed this approach in other settings, ultimately nationally.

Q: What are some of the improvements you notice before patients leave hospital?

Ines: Traumatic brain injuries are so stressful for patients and their loved ones, and that stress can make the atmosphere on the wards very tense. We’ve found that starting this self-management approach early, very soon after the patient has been admitted, can be helpful for patients, families and ward staff. Once the patient and their family are informed about traumatic brain injuries and recovery and management strategies, they feel more in control of the situation, leading to less anxiety and less tension between them and ward staff.

One thing that is difficult for nurses on these wards is that they can feel bombarded with questions constantly, because patients and their families are so anxious for information. Within this approach to support, the interactions between family and staff change completely and the nurses can be supported to feel more confident. That reduces everyone's stress level.

Q: How do patients seem to respond to this self-management package?

Susie: As therapists, we are taught to talk about goal-setting, but I’ve had struggles with that concept. The language of goal-setting can be very difficult for some patients. During our Bridges training, we had an interesting example from a patient who spoke about what goal-setting meant to him. He noted that in football, if you don't score a goal, you don't win – if you don't get a goal, you've failed.

In Bridges we talk about small steps instead. A patient may have a goal or aim – whatever they want to call it – that may seem insurmountable. But if you break that down into small, achievable steps, that hope is still there. Many of our patients have long journeys ahead of them, so breaking it down into small steps can be very helpful.

Another great strategy we discussed is getting people to self-rate how they feel at a given moment – what makes them feel scared or upset – and ask how they think they can change that score. I once had a young patient who was suffering from a very severe injury and was very anxious. I asked him, on a scale of one to 10, how anxious he felt about sitting up. He said eight. We discussed what he could do to bring that down to a five, and he decided that if he could sit up three more times with me there, it might help him feel better. Well, he did it, and when I asked him to self-rate again, he said it was a three!

Q: Why do you believe in this self-management approach when it comes to traumatic brain injuries?

Ines: There’s no ‘quick fix’ to heal the hidden aspects of brain injury. Much of it is about people finding their own ways to manage the effects and their lives, without readily accessible support from healthcare professionals.

We hear stories of people saying they were referred to a clinic to help them cope with the impact of their injury, but they may end up waiting months for an appointment and in the meantime, they feel confused and overwhelmed by their symptoms which causes so much anxiety for them and their families. This approach is about trying to avoid that by sharing the experiences of others through the books, and empowering the patients to take control of their condition through the self-management approach.

Brooke: If the patient’s family have a good understanding of traumatic brain injuries and how this impacts upon their family member, then they are often able to help build and support the patient’s understanding, awareness and self-efficacy between therapy sessions and after discharge from hospital. Together, they can all support the patient’s efforts to move forward.

The Bridges self-management package is being implemented at the four major trauma centres across London with funding from a ‘Spreading Improvement’ award from the Health Foundation. Additional funding from the North West London Trauma Network has also supported training for staff at the major trauma centre at St Mary’s Hospital and its regional trauma network.