“I felt very much on my own - I had day to day things to deal with (work, running a house, looking after our dog), while my husband was lying in bed not knowing what his life would be like. It would've been really nice to have someone to turn to.”
Back Up recognises that spinal cord injury affects the whole family. How an injured person adjusts to their situation is related to how their family adjusts (and vice-versa). With the right support the whole family can adjust positively to life after a spinal cord injury.
41% of mothers and 36% of fathers are diagnosed with Post Traumatic Stress Disorder and 33% of partners are clinically depressed.
38% of parents feel their child's injury had a negative impact on their marriage. 75% feel it has a negative impact on the child's siblings. Half of parents feel a sense of responsibility for their child's injury.
In 2010 Back Up conducted interviews with 14 parents and partners of people with a spinal cord injury. We asked them about their experiences after their loved one's injury and what support they needed. They told us:
- they felt the need to be resilient in order to battle “the system”
- there was a lack of appropriate practical and emotional support
- they had a need for support when back in the community (i.e. post discharge)
- there was no service for parents and partners to speak to other experienced relatives
- the most helpful support was emotional/practical support from friends, other family members and other people with spinal cord injury
- they needed an informal service where advice and tips can be shared
- one to one support was seen as providing the most benefit
Read the full research report here.
From that research, we set up our peer mentoring service for parents and partners of people with spinal cord injury. Through mentoring we support family members to see that life can be manageable.
"I feel much happier now, Penny has helped me to gain a sense of perspective and understand what we still have as a family. I also do more things for myself and don't feel guilty about spending time on my own"
Ulviyya , 35, supported by partner mentor Jan to Apr ‘11