When a child sustains a brain injury, the impact on all family members is both immediate and ongoing. Children and families react in different ways to a brain injury and family equilibrium is disrupted as each member finds his or her unique way of coping and adjusting to both the initial crisis and the longer term issues. At the time of re-entry into the school system the injured student and each family member will have experienced, and are likely to still be experiencing, many changes. Depending on the length of the student’s hospitalisation and the severity of the injury families are likely to have experienced varying degrees of the implications outlined below.
Changed family roles and expectations
For a time, families will have had to juggle care responsibilities between home and hospital. Work commitments, income and even career expectations may be affected. Roles within the family may have altered. Siblings especially may experience reduced parental attention and displacement to the care of others. In addition to the student’s primary care, parents may need to take on new roles, including nursing, advocating for their child and negotiating with many services that their child now requires eg. medical, therapy, legal and special education personnel.
Loss of control
Common to all families that experience serious injury or illness is the feeling of loss of control. The initial crisis resulting in the brain injury marks the beginning of a course that can recurrently reinforce this feeling. Parents often feel helpless, as other people appear to take over the management of their child’s care. Plans and expectations previously held for the child and themselves may need to be drastically altered, through no choice of their own. This may include the school their child attends or the subjects chosen to study. Parents may feel they no longer know their own child, when many “experts” are offering opinions.
Grief and loss
The injured child, parents and siblings can experience a range of emotions associated with these changes. Sadness, guilt, denial and anger are common emotions that wax and wane in the months and years following a brain injury when their sense of loss recurs. Significant dates, such as birthdays, anniversary of the accident or life transitions can trigger this. Denial and anger can be difficult emotions to encounter. It is important that families be allowed to move at their own pace as they process the emotional impact of this life-changing event. Professional assistance may have been offered during the child’s hospitalisation. It needs to be kept as an option for both child and family throughout the rehabilitation phase.
For most parents the task of making sense of the vast, complex and highly specialised information about their child’s brain injury, especially when there is uncertainty about the degree of recovery to be expected, can be very daunting and stressful. Information will need to be given more than once and regularly updated.
There are many extra costs involved with a long hospitalisation and this affects each family to a greater or lesser degree. Daily travel and parking costs alone can strain a family budget, especially where the income may have already been reduced. For some families assistance is available through Centrelink and possibly Compulsory Third Party Insurance.
Physical and emotional exhaustion
Lengthy hospitalisations and the constancy of the physical and emotional demands involved are very draining on all concerned and can bring parents to a point of exhaustion. Every child and family’s experience of a brain injury will be different. In planning for the educational needs of a child it is important for teachers to have an understanding of the child’s injury and consequent effects on learning and also the impact that this has had on the family. The child’s reintegration to school is most likely to go smoothly when the family’s needs, as well as the child’s needs, are understood and able to be supported.
Queensland Paediatric Rehabilitation Service
Lady Cilento 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
In an emergency, always call 000.
If it’s not an emergency but you have any concerns, contact 13 Health (13 43 2584). Qualified staff will give you advice on who to talk to and how quickly you should do it. You can phone 24 hours a day, seven days a week.