Impact on the Family

Disclaimer: This information sheet is for education purposes only. Please consult with your doctor or other health professional to make sure this information is right for your child.

Family responses

When a child sustains an acquired brain injury the impact on all family members is both immediate and ongoing. Children and families respond in different ways to a traumatic injury which can unsettle or disrupt family stability. Each family member finds a unique way of coping and adjusting to both the initial crisis and the longer term issues.

Adjustment and changed family routines can be more stressful or obvious at times of transition such as hospital discharge or return to school.

Depending on the length of the child's hospitalisation and the severity of the injury the following experiences and challenges may impact on families.

Changed family roles and expectations

• Juggling care responsibilities of home, hospital and work.
• Changes in family roles and responsibilities (may include changes in work commitments and income).
• Reduced parental attention may impact on the child's brothers and sisters in a variety of ways. You may see changes in behaviour, emotions and sleep. Children may regress to an earlier stage of development.
• New and additional parental roles: nursing, advocating for your child, negotiating for services ie therapy, legal, medical and special education

Loss of Control & Exhaustion

Families commonly experience feelings of loss of control. Sometimes, parents may have mixed emotions about the extent to which hospital staff are involved in decision making s about their child's care. They often feel extreme tiredness due to the impact of lengthy hospitalisation, withdrawal or isolation from other family members and increased emotional and physical demands.

Information Overload

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.

Grief and Loss

Sadness, guilt, denial and anger are common emotions that ebb and flow in the months and years following an acquired brain injury when a sense of loss recurs. These emotions can also be triggered by significant dates such as birthdays, anniversary or life transitions. Denial and anger can be particularly difficult emotions to encounter. It may also be difficult to deal with well-intentioned remarks or comments from extended family, friends and community members who do not fully understand the long-term nature of brain injury rehabilitation. It is important that families be allowed to move at their own pace as they process the emotional impact of this life-changing event.

Coping Strategies

• Obtain accurate information about your child's progress. Identify a key staff member to talk to avoid confusion or overload. Information will need to be given more than once and regularly updated.
• Avoid making too many decisions at once, deal with each situation one step at a time
• Talk to other families who have been in a similar situation.
• Have `time out' with family and friends.
• Eat well and take some time to do something relaxing ie listening to music
• Ensure that siblings receive accurate information from you at a level they can understand
• The brain injury team provides professional assistance for both child and family to cope with these issues during your child's rehabilitation.

Rehabilitation Department The Children's Hospital at Westmead Cnr Hawkesbury Rd & Hainsworth St, Westmead Locked Bag 4001, Westmead, 2145 Tel: (02) 9845 2132 - Fax: (02) 9845 0685 http://www.chw.edu.au/rehabilitation/