Transitioning from hospital to home can be a stressful time for a child with an acquired brain injury (ABI) and their family. In most cases, the child and their family are adjusting to a reduction in the level of medical and rehabilitation supports that were previously available in hospital. Additionally, due to the nature of brain injury, a child may have fewer resources to cope with the stress caused by the change.

The degree of changes a family may have to make will depend on the degree of the child’s brain injury. For example, in the case of a severe traumatic brain injury, the family may be taking on a full-time caring role and therefore need a wide range of supports. With a mild brain injury, a nearly complete recovery may be expected, but the family may need to assist the child with ongoing rehabilitation at home for behavioural issues and cognitive changes such as memory problems.

Consider the journey

Each child and each brain injury is different. A ‘traumatic’ event is not the only way a child can sustain a brain injury, it can be caused by tumours, illness and disease. The effects of brain injury can vary widely from person to person.

When a child sustains a brain injury, their family plays a vital role in their lifelong support. Families can offer emotional support and encouragement, as well as the functional assistance necessary for the child to integrate into society. Families are an essential part of the care and rehabilitation as their engagement improves outcomes for the child. Families often wish to return home as soon as possible to care for their child, and for many children returning home following their injury is also the most desired outcome.

The impact of a child sustaining a brain injury is felt by the whole family, and wider community. Research has shown that families can experience distress, just as great or greater than the injured person. This puts them at a higher risk of emotional and social difficulties as this unexpected disruption in their life can profoundly impact the families ability to adjust.

It is very stressful for families when a loved one acquires a traumatic brain injury, stroke or similar brain disorder. A period of shock or disbelief is common at first. Many report feeling a sense of unreality and being on “automatic”, unable to take in information.

Predicting the level of recovery after a brain injury is difficult, and doctors are usually cautious about early prognosis. Family members and other visitors have the right to ask questions, express a point of view, and receive clear and timely information. Sometimes the answer may be “we don’t know” and this may be the only honest answer available. Patience and persistence are required in the search for information.

Understanding the families experience of grief, loss and trauma

Trauma

Trauma occurs when an individual, group or community has a distressing or overwhelming experience accompanied by intense fear, stress, pain or helplessness. Most often, for families supporting a child who has sustained a brain injury, this trauma results from a single event, but trauma also occurs following repeated negative experiences. A traumatic event is one in which a person’s safety is threatened and there is a risk of harm or injury. It may be that the traumatic event primarily involved a single child; however, parents, siblings and extended family can also be implicated through direct involvement, by witnessing the event, hearing about the event or being present in the hospital during the child’s treatment.

Grief

Grief is an experience of sadness, anguish or distress following a loss or a traumatic experience. Grief is complex and can impact an individual’s thoughts, feelings, behaviours and beliefs as well as their relationships. Families who are supporting a child with a brain injury are likely to grieve the identifiable changes in their child following their injury. These may be in relation to their appearance, physical function, cognitive capacity, independence, social skills and personality.

The intensity of an individual’s grief, how long it lasts, and our reactions to it will differ from person to person. Some common reactions include:

• feeling sad or down
• frequent crying
• shock, denial, numbness
• stress, anxiety, confusion, exhaustion
• anger, guilt, shame, blame or even relief
• loneliness, isolation and withdrawal
• feeling or acting differently to usual
• physical health problems – headaches, changes in eating or sleeping patterns
• difficulty concentrating
• not enjoying usual activities and hobbies
• tension or problems with personal relationships
• increased alcohol, smoking or drug use
• feeling hopeless or like you can’t go on – thoughts of suicide or self-harm.

Transition from hospital to home commonly triggers grief and trauma responses from families as they negotiate a period of re-adjustment. When a family returns home this can be the first time they are really confronted by the identifiable changes in their child and what this means for them in their real world, outside of the safety net of the hospital.

Roles and responsibilities

Having a child with a brain injury can mean significant changes for all family members. Navigating changes in family dynamics, functioning and relationships can be overwhelming, particularly when a child is ready to transition from hospital to home. Families commonly experience:

• financial hardship
• changes in caring responsibilities
• reduced work capacity
• pressure on the couple relationship within the family
• siblings taking on more responsibility around the house
• understanding, negotiating and meeting with community service providers
• learning to advocate
• re-learning effective behaviour management strategies.

Behaviour management

Some families will benefit from intervention, advice and education about new behaviour management strategies when transitioning from hospital to home. Some families, on the other hand, may find it difficult to take on new information at this point due to the significance of their grief, the trauma they’ve experienced and the stress of adjusting to new roles and responsibilities. Whilst some of these behaviour problems may seem easily fixed, it is important to recognise the family’s unique experience of their child’s brain injury and associated changes. If you notice significant barriers you may encourage the family to seek out psychological/psychosocial support services where these stressors can be explored in depth.

Important symptoms to look out for

There are a number of symptoms which are common following a brain injury, including:

• headaches
• difficulty concentrating
• becoming easily tired and fatigued
• anxiety
• depression
• memory difficulties
• issues with sleep.

The family’s regular doctor is the best point of contact to discuss these concerns.

Other symptoms that may require more urgent medical treatment. These can include:

• seizures or fits
• vomiting
• changes to balance
• vision and hearing
• difficulty with communication.

What to do if you are worried or concerned

All carers respond to the demands of caring for their loved one in their own way. Common reactions can include feeling overwhelmed, confused and shocked. There are no right or wrong feelings. These feelings are a natural and normal reaction to caring. Carers need to maintain their health and wellbeing so that they are in the best frame of mind to care for their child. If you are concerned about the wellbeing of family members, speak to them directly or encourage them to talk with their GP. There are a number of resources and support services available to carers who may be struggling including:

• Carers Queensland
• social workers
• psychologists and counsellors
• Synapse (for specialist ABI support and advice).

Contact us

Queensland Paediatric Rehabilitation Service
Queensland Children’s Hospital
Level 6, 501 Stanley Street, South Brisbane 4101
t: 07 3068 2950
t: 07 3068 1111 (general enquiries)
f: 07 3068 3909
e: qprs@health.qld.gov.au