“We knew our lives were changes forever from that point”
Acquired brain injury (ABI) in a young person can present a significant challenge to a family. Research has shown that the well-being of families is essential for the young person’s neuro-rehabilitation.
Clinicians are concerned with creating an optimum environment for a child’s neuro-rehabilitation to take place within, but they are also aware of the vital role that parents play in the rehabilitation itself. Despite the increased needs of the young person, it is of central importance that parents are able to cope with the demands placed on them.
Recent research conducted by the University of Exeter has explored the psychological adjustment process of parents of young people with ABI. Ten parents whose children had experienced ABI were interviewed, and five main themes emerged from the interviews:
Lives Changed Forever
Parents discussed the ABI as representing a significant change in their lives. They described their experiences of loss throughout the journey of their child’s brain injury; for the child that they knew, for their child’s potential, and for their child’s missed experiences. They discussed their child’s dependence on them as something that would not change with time, altering the future they had imagined. Many of the parents discussed the ways in which the ABI had impacted both on individual family members but also on the family as a whole, particularly on siblings.
Sense of Self
Many of the parents discussed the challenges that the ABI raised for their sense of self. For some of the parents, the ABI had a substantial impact on their capacity to engage outside of meeting the needs of their child. This often meant parents taking lengthy periods of time off work, amending their working hours, or giving up their jobs completely. Parents found it easy to prioritise their child’s health initially, however as time passed they described feelings of loss, frustration, and disappointment.
Interaction with Services
Parents expressed the importance of being listened to by health care professionals. Whilst some of the parents described positive experiences of being involved in discussions, and having empathy shown to them, many encountered very different experiences. Some talked about positive relationships with schools however recognised the need for schools to receive specialist information regarding ABI.
The early days following the ABI diagnosis were utterly devastating for the parents, who in many of the cases were faced with the possibility that their child may not survive. The parents described how little they understood about what was happening to their child, and subsequent feelings of anxiety and anger. Several parents described feelings of loss, heartbreak and “brokenness”. Coupled with their experiences of depression, they described a sense of loneliness and isolation from others.
Coping and Adjustment
Parents described several factors that had helped them to adjust. They talked about blocking out feelings and “getting on with it”, as well as drawing on their own personal characteristics and resiliencies. Some of the parents described the value of being able to rationalise, be logical, or to problem solve. Many talked about their experiences of finding a sense of belonging as a result of their interactions with people who understood and were able to empathise with what they were going through.
Some reflected on the experience of the ABI as giving them a changed perspective for the future. Parents discussed how their experiences had enabled them to re-evaluate their priorities, made them a “better person”, and helped them to embrace uncertainty. For some, they felt as though they had been given a second chance, and they embraced a renewed sense of how precious life was.
What does this mean for parents?
This research indicates that paediatric ABI has a significant psychological and emotional impact on parents. Access to psychology services during the initial aftermath of the ABI, and following discharge from hospital, is essential to enable parents and families to manage difficult emotional and psychological experiences. The study also suggests that the provision of support groups, and the facilitation of informal events, where parents can meet with those who are in a similar stage following the ABI, may aid adjustment and coping.
How can Cerebra help parents of young people with ABI?
Cerebra offers a wealth of practical information, advice, and support for parents. For more information on how Cerebra can support you as a parent of a young person with ABI, Or call our helpline on 0800 328 1159.
For more information on the research study please contact:
Sian Hocking, Trainee Clinical Psychologist, Seh219@exeter.ac.uk