Family Support Needs
As part of Action for Brain Injury Week, we asked parents and carers of a child with a brain injury about the support their families need and where they receive that support from. The results show that a wide variety of people can make a difference to a family coping with childhood acquired brain injury – you too can be a Hero!
Almost 90% of families who responded have needed support with education, 72% with behavioural problems, 46% with counselling, and a third with welfare and benefits advice. They have previously received support from family (53%), friends (48%), and their child’s school (37%). Other charities were also mentioned as a source of support by 21% of people, and online support groups by 16%.
As you’ll see from some of our blog posts later this week, siblings are often the Unsung Heroes who make a real difference to their families’ abilities to cope, making sacrifices and putting their brother or sister’s complex needs before their own.
The majority of people responding (84%) felt their child’s brain injury has had an effect on their siblings, with over half stating that they have to care for their sibling (52%), or that they are no longer able to do as much as a family due to financial difficulties (43%). Comments included:
- We unintentionally restrict the type of activities we undertake as a family
- They often feel left out and less special
- He has had to take on a roll reversal as a more mature younger sibling
- They have had to make sacrifices in order to accommodate our injured child
- My other son’s activities/hobbies had to stop when his brother became unwell. Also his friendships were put on hold.
- They have found it difficult to see the change in behaviour and emotions that their sister now has.
However, we also heard that:
- They have become even closer
- It has made her a very caring and understanding person as it is all she has ever known – but it has also made her scared of her brother at times when he is unable to control his temper.
Two thirds of people mentioned that the Child Brain Injury Trust has supported them. Many respondents were new referrals who have only just begun to engage with the support we offer. When asked what difference the Child Brain Injury Trust has made to their life, almost half mentioned our Child and Family Support Service, a quarter said we’d provided them with information, and a quarter felt we’d helped with their emotional wellbeing. A third said we’d provided training or awareness-raising around childhood ABI, either for themselves or the professionals who work with their child. They told us the charity had provided:
- Positive support, a place to go where people understand
- Support for behaviour strategies, with memory problems, sibling support. With school, attending meetings etc. excellent support and advice, also awareness training for teachers.
- Support, support, support! Always at the end of the phone, sought grants for my family, answered questions, training for school staff … made us feel we weren’t alone in this and when a problem arose, we were never made to feel like we were making a fuss (even if we were!!) but reassured that there is so little understanding out there, which is why we were coming up against problems.
The difference this had made to their families was clear:
- Without the support of the child brain injury trust I honestly don’t know how I would have coped. Life was unbearable and it’s been fantastic knowing I could pick up the phone and have reassurance and advice.
- I always know there is someone who will listen. My family liaison is wonderful. [She] has attended school meetings with me and undertaken training in the school to help reduce the bullying and make teachers aware. I feel there is very little knowledge in the academic world on how complex and varied brain injury can be.
We are extremely grateful to the parents and carers who took the time to complete this survey, giving us an insight into their support needs and how these are met. Please take the time to share this blog post with your networks, to help us highlight the difference support can make to families coping with life after a child sustains a brain injury.
For more information and support for siblings, check out our Factsheet on this topic. We will also be running a webinar on Wednesday which you can listen to online as it happens or later once it’s recorded. In order to listen, you will need to register for our online Learning Catalogue which you can do here.