Acquired brain injury (ABI) is the leading cause of death and disability in people between the ages of one and 40 in the UK.1 The experience is not only distressing for the injured person, but also for their family.2 Many people with ABI are cared for at home by a family member. However, the psychological and emotional needs of family carers of ABI survivors are often unmet within healthcare services.3
ABI is an umbrella term,4 which covers traumatic brain injuries as a result of road traffic accidents, falls, sports injuries and assaults, including domestic violence. It also covers other injuries to the brain, such as those caused by stroke, tumours, infections or episodes of reduced oxygen to the brain (usually called hypoxia or anoxia).
An ABI is life changing for the individual survivor. It can affect memory and cognition, physical appearance, mobility and the ability to communicate. ABI survivors can also undergo changes to their personality, which might include difficulty in regulating their emotions and navigating social situations. But ABI doesn’t only affect the survivor; it also has a profound effect on families.
The perceived personality changes of the injured person can be particularly distressing.5 Families also need to navigate disruption to their structure and roles.6 For example, a family member might have to leave their job in order to fulfil their caring responsibilities.7 The family might also have to rely more heavily on outside agencies for support with rehabilitation, health complications or complex care needs.
Grief and loss
Family members can experience a profound sense of loss after an ABI, as their loved one is not the same as they were before the injury.8-10 The survivor of the injury might be physically present but psychologically absent, sometimes referred to as ‘ambiguous loss’,11,12 which can complicate the grieving process. It can also be difficult to process feelings of grief alongside feelings of gratitude that the injured person is still alive – or not more seriously impaired.
The nature of the family’s grief is often misunderstood or overlooked by wider society, sometimes known as ‘disenfranchised grief’.13 It can be particularly hard to process disenfranchised grief, as your feelings are not validated or acknowledged. It can therefore be difficult for family members to come to ‘reasonable terms’ with their grief.14 So they often present as if they are in the early stages of grief, even many years after the event.15 Grief for families living with ABI can also be a constant presence in their lives.6 And it can re-emerge at transition points,16 such as a child moving away from home, the birth of a grandchild or the onset of older age and retirement, which act as reminders of how life has changed since the ABI.
When providing counselling or psychotherapeutic support for family members of ABI survivors dealing with complex grief reactions, we have found it helpful to:
- support the client to understand their distress through the lens of grief
- provide education on grief reactions, for example using the ‘stages of grief’ model15
- normalise the presence of grief when a family member experiences an ABI, explaining that grief can persist for many years and might be recurrent
- consider using grief outcome measures; for example the Marwit-Meuser Caregiver Grief Inventory (MM-CGI)9
- support the client to name and give voice to what has changed in their family member and what was lost, as a result of the ABI
- support the client to attend to aspects of their family member and their relationship that have remained consistent, before and after the injury, supporting their wellbeing through promoting a sense of continuity.17
In addition to issues of loss and grief, family members of ABI survivors might also present with symptoms of trauma, such as heightened anxiety and reactivity.6 The family member might have been present when the injury occurred. They might also have been traumatised by learning of the injury or by subsequent experiences in hospitals.
Living with or caring for an ABI survivor can also be traumatic. The survivor might appear unrecognisable after their injury. It can also be disturbing and upsetting if a loved one acts in unfamiliar ways, especially if there is no indication that they will return to their old self. The medically complex nature of ABI can also mean that the survivor, although apparently stable, is at risk of suddenly becoming unwell, for example with an infection or epileptic seizure.
In our clinical experience, it can be particularly traumatising for children to visit their loved one in hospital. They are not only confronted with the sight of their injured family member but they might also encounter other people who are physically injured, or in confused or distressed states. Some families choose to exclude children from hospital visits and conversations about the injury, as a form of protection. However, some evidence suggests that children who are excluded can feel left out and invisible.18
Family members of ABI survivors can experience difficulties relaxing and sleeping, as they might have to attend to their injured family member at any time. The survivor’s night-time care needs can further impact the carer’s ability to relax and sleep. Given the role of rapid eye movement (REM) sleep in the processing of events and emotional regulation,19 family members can get trapped in a cycle: their distress and caring responsibilities disrupt their sleep – and their disrupted sleep depletes their capacity to process their distress and manage their caring responsibilities.
Family members can also be vulnerable to relational trauma,6 as the injured person’s behavioural changes can damage relationships, perhaps if the ABI survivor is experienced as unpredictable, frightening or aggressive. ABI can be both a precursor to family violence, as well as a consequence of family violence.20
However, it might be helpful to hold in mind the possibility that some ABI survivors and their family members can experience post-traumatic growth – a positive psychological change after an adverse experience.21 Research seems to suggest that post-traumatic growth is linked to better therapeutic outcomes for ABI survivors22 and, in our experience, family members sometimes report a greater appreciation of life or feel proud of their resilience in the face of extreme adversity. It might therefore be helpful for some clients – though not all – to explore in therapy the potential for post-traumatic growth.
When providing counselling or psychotherapeutic support for family members of ABI survivors dealing with the impact of trauma, it might be helpful to:
- explore the context of the family member’s injury, including whether the client was present at the time
- explore the client’s experience of the early days post-injury, including how they were informed and any experiences within hospital settings
- consider the use of post-traumatic stress disorder screening tools, such as the PTSD Checklist (PCL-5)23
- attend to any substance misuse or difficulties sleeping
- actively screen for family violence and abuse
- provide psychoeducation on trauma, including how traumatic experiences affect memory processing and can lead to lasting distress, if untreated
- attend to establishing safety in the family as well as the therapeutic relationship
- support developmentally appropriate narratives for understanding what has happened, as ABI might not fit within a traditional illness narrative
- consider specialist interventions to support the processing of traumatic memories
- explore experiences of positive growth following the ABI, taking the time to celebrate resilience alongside recognising hardship and distress.
Family members living with ABI face unique challenges. They might be adjusting to family-wide changes, such as taking on caring responsibilities, while also navigating grief related to the perceived loss of their loved one. The needs of family members are not always understood by healthcare services. But by taking the time to educate ourselves on these issues and challenges, the counselling professions can better support families whose lives have been altered by ABI.
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References
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