Experiences and Challenges Faced by Family Members after Brain Injury

We are both part of the Anchor Point group. Charlie founded this through her hard work over the COVID period, and this is an organization we are going to be talking about today. Charlie, is there anything else that you would like to add before we move on?

I don't think so. It is probably just worth me saying that I hope this is like a conversation. I know a webinar always feels a bit formal, but Alli and I work really closely together—we meet every week—so I am hoping that this is much more of a dialogue between us, and obviously, there will be a chance to have some dialogue with people that have dialed in. I also just need to mention that I am in a hotel at a conference and I am hoping nobody comes in and disturbs me, but if that happens, then I will just have to deal with that. The joys of online digital work.

Yes, so as Charlie said, hopefully we will have a bit of a conversation as we are going through, and although we are taking a Q&A at the end, if there is anything specific that you want to ask going through that is worth us addressing while we are presenting, then we are absolutely fine to do that as well.

The one thing that Tamson didn't say, and I think is probably quite important for putting this into context today, is that as well as my professional experience, I am also somebody with lived experience of brain injury myself. My brother had a road traffic accident back in the 90s which left him with a severe traumatic brain injury. So, I have a personal vested interest in this particular area, and hopefully, as you will see, it gives me perhaps a different insight into what it is like for family members after brain injury. While every experience is different and certainly mine isn't necessarily reflective of everyone's, I think there are some similarities that we are going to touch upon today.

One of the things we were going to start with was going through some of the data that we know about around carers' experiences and family members' experiences after brain injury. We are in a situation at the moment where there are still very unclear figures about just how many family members there are out there that are affected by this, not least because we don't really fully understand yet how many people are affected by brain injury. The best guess that we can go for is that we know there are about 5.4 million people in England who are named as unpaid carers but are friends or family members. Headway UK has stated that about 59% of carers within the ABI population are experiencing some form of difficulty, and about 21% are experiencing severe depression. So, we don't know how many of that 5.4 million are represented in brain injury alone, but given that we are talking about a large population of people with brain injuries, it is likely to be significant.

About 60% of individuals who care for someone with a brain injury state that they feel they are not receiving adequate support to help them in those caring duties. What people report is a high burden of care—experiencing a degree of burnout because of the responsibilities of caring for a loved one, poor mental health, high levels of stress, high levels of anxiety, and a generally lowered quality of life. We also know that only about 24% of individuals feel satisfied with their own healthcare needs, and about 8% report feeling very dissatisfied with their own physical health. So, we have a range of different difficulties here, and as we are going through, we are going to start touching on it more from a lived experience perspective.

I think you have candidly shared your lived experience. I always like to start from the fact that I don't have lived experience, and I'm not an expert in this stuff. My clinical experience was in neurosurgery; I saw how families were struggling, and then that became my lifelong interest in how we can understand the needs of family members and then use that understanding to improve how they are supported. That narrative about 'there is nothing for family members' or 'falling off a cliff' once they have been discharged from hospital—we haven't really seen a seismic move in that narrative over decades.

Certainly in research, the things that make people listen are the rates of clinical depression, anxiety, and reduced quality of life. Those are quite stark outcome measures. As a qualitative researcher by trade, I spend time with people and listen to their stories. I try to understand what life feels like on the inside. Sometimes as researchers we can be a bit lazy and we can measure things that we can see on the outside, but that doesn't always reflect how people feel on the inside. A lot of the people that I speak with talk about much more nuanced feelings around their role, their relationship with the survivor, but also their relationship with themselves. We talk a lot about identity loss—not as a consequence of organic damage from a brain injury, but as a carer, what that feels like to actually lose yourself. That feeling of displacement and just the uneasy feeling that nothing works the same anymore.

A lot of our work is trying to think how family members can reconnect to that part of their identity. Also, things that are harder to measure: what does hope look like in the context of brain injury? What is the relevance of post-traumatic growth—how do people find meaning from what is the most devastating set of circumstances and how does that then generate a new life? It is about being in the gray area of trying to understand what life feels like, and that is different for everybody.

It is very easy to view these things within a vacuum, but this life experience is not happening within a vacuum. There is plenty of other stuff going on. We work closely with Dr. Mark Holloway, and he would always say, 'If you've met one person with brain injury, you've met one person with brain injury.' That transcends to family: if you have met one family, you have met one family. Every family is unique, the injuries are unique, the consequences are unique. Yet, what we do find are some similarities in people's unique stories, such as themes of trauma, grief, burden, and isolation.

Trauma can mean lots of different things to different people. Regardless of how the injury happens—whether it is a sudden incident like a traumatic brain injury or something more gradual—there is that initial trauma punctuated by lots of hospital visits. Family members are often overlooked at this point but bear the brunt of it. For many, those memories are acute. We start off with this initial trauma, which is also punctuated by hope. People are looking for every sign that there is some kind of positive hope for the future. What comes next is often a very busy, chaotic period where there is rehabilitation. Initially, there is a period of almost stability—I use that term loosely because it is not at all a stable time—where there is relief about leaving the hospital environment. But then, reality hits that the family dynamics have fundamentally changed. The individual who has come back into the home is different from who they were before. It takes a long time for people to reconcile that life is not going to look exactly as it did before.

Unfortunately, there is no stable 'new normal.' There are ongoing traumas that feed into that initial sense of trauma, such as fighting for access to benefits or trying to know the right people to talk to. Some behavioral or emotional changes in the person with the brain injury can be pretty traumatic for family members to live with. In the trauma literature, individuals often cope well with a catastrophic event given time and resources. What people don't do quite so well at is that ongoing 'drip-feed' effect of small traumas happening day-to-day, especially when you are not experiencing support. That emotional trauma builds up, and there is never a safe space to park it. People feel this isn't their story to tell, which leads to disenfranchised grief. They don't have the time or space to deal with these traumatic events. Scratching the surface of those feelings can be scary because they have to continue to live with that person.

I speak to psychologists who work directly with family members, and they talk about approaching this through a lens of trauma. Clinically, everything you do after the primary injury is about preventing secondary trauma. I think that is the same for the pathway for family members. We can't do anything about the injury itself, but the systems shouldn't create extra trauma for family members. That is the bit that I hear so often—the bit they can't resolve because these people are supposed to help them but don't. They are pushed out, ignored, or treated like the 'bad' family, whereas they are just advocating for their loved one.

Moving on to grief: 'ambiguous loss' is a complex term. It means experiencing a sense of grief for somebody that is still present in some way. This applies to the person with the injury and to the family members who have to live day-to-day with the new person. Using the Kübler-Ross model, we go through stages of denial, anger, bargaining, depression, and acceptance. It is important to note that this is not linear; it is more like a confused ball of string. We pinball back and forth. The point of acceptance is not about grief being over, but learning where to put that grief within the context of the rest of one's life. We should talk more about 'processes of adjustment' rather than 'acceptance' as a fixed outcome. You have to grieve for yourself, too—for the things you have lost and the future you decided was going to be yours.

We hear a lot about the 'burden of care.' It makes sense as an external observer, but when you speak to family members, they don't typically use that word. They see it as commitment or love. Though, that commitment can feel like a weight endured over a long period. In this field, we are talking about 7, 10, 20, or 30 years for some of this stuff to come out. That is because there hasn't been a platform for them to say, 'I have been affected too.' Making room for that, while also trying to find purpose and joy, is crucial.

In terms of what people need: information and support are key. We still see families leaving the hospital without useful information about what to expect or where to seek help. 'Hear my voice' is essential—family members have a right to talk about this as their own story. We also need social connection. Being part of a community is vital, which is where local Headway groups are so useful. They offer a safe space for the survivor and a few hours of respite for the family member. We must also address the lack of recognition for their roles in welfare and benefits systems. The condition itself is often invisible, and the family members sit even more invisible within that picture. Professionals must appreciate their identity in their own right, rather than just supporting the family to better support the survivor.

Anchor Point came from a sense of frustration that we were having the same conversations with the same people a decade later and nothing was changing. COVID-19 gave us an opportunity to sit in an online space together. We aren't a family support group; our ambition is to drive change in the sector through research, information, policy, practice, lives, education, and strategy—the 'RIPPLES' acronym. We are a collaborative organization, and we are working to have a publicly facing, useful repository of resources specifically for families. We want to work with people like Headway to see how resources can be improved or backed by research evidence. Collaboration is one of our core values.